41 yr old Male 4cm Left Kidney cancer found on incidental ct scan - anyone like me out there?

WilSchretz
WilSchretz Member Posts: 16
edited March 2014 in Kidney Cancer #1
Hello, I am a 41 year old male who is in good physical shape with no history of cancer. I do not smoke or drink often and have no history of high blood pressure or diabetes. I was having intermittent indigestion from what I thought were certain foods that didn't agree with me. I finally was convinced by my wife to go to the doctor to check things out. My doctor thought a CT scan would be a good idea to see what was going on since the issue was occuring for a few months. I drank the iodine and had the scan. I was playing golf with my boss and got the call from my doctor to come in as soon as possible to review the scan due to "abnormal" results. My wife picked me up on hole 14 and we went to see the doctor. She came into the room and looked very sad and told me I had gall stones. I thought ok I may have to have my gall bladder out...no big deal. She then said we also found a 4cm mass on your left kidney and the radiologist is fairly certain it is renal cell carcninoma. My only response was..... WHAT? She said you have kidney cancer. My wife starts crying and I just stare at her and say are you sure you have the correct report? I have no symtoms. She said you are very lucky that we had the ct scan and we found it early. She said that I would probably have to have my kidney removed. Anyway she gave us the referal to the urologist and we left the office stunned. I asked my wife to take me back to the golf course and I finished the round at hole 18. We met with two Urologists and both recommend a laprascopic partial naphrectomy. The Urologist thinks he can perform a partial naphrectomy of my "golf ball" sized tumor although it is on the back side of the kidney and may require a conventional approach (open surgery) if he has difficulty during the robotic surgery. I should have the surgery in mid July 2009.

I was wondering if there is anyone out there that has a similar story or who had the surgery to discuss and compare notes??

Will
«13

Comments

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    Sorry about the bad news. But the good news is the doc caught it small.

    I'm Female, now 66. Never smoked, drank seldom, was a PE and Health Ed teacher and now work as safety and personnel manager in a business my family owns.

    In 20O6, thought I had gall stones, maybe, but the symptoms were just occasional episodes of nausea-vomiting. Usually, I could look back and say it was convention meals, a holiday event, travel food, etc. So thought little of it for the fall of 2005 until I saw my new Dr. for the first time at the end of April 2006. Labs, urine test and ordered an ultrasound.
    May 9, Ultrasound;
    May 10, early morning appt. with Dr. Large mass in rt. kidney and masses in liver. And blood in the urine. Already Stage IV. Told they could offer palliative care
    May 11, consult with Oncologist -move quickly...Told that with current info and diagnosis, I had 7 months. Oh, crud. Oh, No. Cry, not sleep, etc.
    May 12, CT.-not sure if it's one or two masses in left lobe liver, plus other spots in rt. lobe;
    May 15, bone scan. Clean.
    May 18, attend consult in Portland, OR at Oregon Health Sciences Univ., with Urologic Surgical Oncologist, Abdominal Surgical Oncologist and chief of Surgery, and Medical Oncologist. All seemed assured they could surgically remove what was in there.
    June 22, 11.5 hr surgery. Tag team of Dr.s plus I'm sure lots of residents watching (since I was never charged for the OR time and it was used for teaching) took out R. kidney (11.5 cm x 12.5 cm x 8.0 cm tumor), left half of liver with one mass, several wedges from right half of liver that were frozen biopsied during the OR time, set of paracaval lymphnodes (2 of 11 positive), and the gall bladder, which had a congenital defect. Left the hospital on the 5th day.
    Took a while to recover -nearly 6 weeks, but I developed pancreatitis at 3 weeks post surgery and that put me back to almost square 1. And hindsight made me think that I was probably having little episodes of pancreatitis the winter prior.

    That's my story and I'm sticking to it. Joke!!

    Because it had already metastasized, I was watched with CT scans every 3 months. The comparison between Feb. and May showed a node growing, positive on biopsy, and was removed on 7/3/07. I helped drive home from the hospital 4 days later and took myself out to my favorite lunch spot the next Monday.

    CT's every 6 months for 07-08. May 08 showed another node growing, PET didn't show any other sites, so stayed local and had it out on 6/28. Slower recovery.

    CT every 3 months, except when a spot showed on my liver in January. Had another CT in March, an ultrasound 2 wks later (diagnosed an hemanagioma on my liver -like a strawberry birthmark on the inside); had a CT in May and the radiologist decided that the spot was a cyst. So now I only need to do blood work and see the oncology nurse next month.

    I'm planning a fun summer -the first without surgery in 4 years.

    I wish you well with the surgery. If you have any other questions or comments that I can answer, you know where to find me.
    Donna
  • WilSchretz
    WilSchretz Member Posts: 16
    donna_lee said:

    Sorry about the bad news. But the good news is the doc caught it small.

    I'm Female, now 66. Never smoked, drank seldom, was a PE and Health Ed teacher and now work as safety and personnel manager in a business my family owns.

    In 20O6, thought I had gall stones, maybe, but the symptoms were just occasional episodes of nausea-vomiting. Usually, I could look back and say it was convention meals, a holiday event, travel food, etc. So thought little of it for the fall of 2005 until I saw my new Dr. for the first time at the end of April 2006. Labs, urine test and ordered an ultrasound.
    May 9, Ultrasound;
    May 10, early morning appt. with Dr. Large mass in rt. kidney and masses in liver. And blood in the urine. Already Stage IV. Told they could offer palliative care
    May 11, consult with Oncologist -move quickly...Told that with current info and diagnosis, I had 7 months. Oh, crud. Oh, No. Cry, not sleep, etc.
    May 12, CT.-not sure if it's one or two masses in left lobe liver, plus other spots in rt. lobe;
    May 15, bone scan. Clean.
    May 18, attend consult in Portland, OR at Oregon Health Sciences Univ., with Urologic Surgical Oncologist, Abdominal Surgical Oncologist and chief of Surgery, and Medical Oncologist. All seemed assured they could surgically remove what was in there.
    June 22, 11.5 hr surgery. Tag team of Dr.s plus I'm sure lots of residents watching (since I was never charged for the OR time and it was used for teaching) took out R. kidney (11.5 cm x 12.5 cm x 8.0 cm tumor), left half of liver with one mass, several wedges from right half of liver that were frozen biopsied during the OR time, set of paracaval lymphnodes (2 of 11 positive), and the gall bladder, which had a congenital defect. Left the hospital on the 5th day.
    Took a while to recover -nearly 6 weeks, but I developed pancreatitis at 3 weeks post surgery and that put me back to almost square 1. And hindsight made me think that I was probably having little episodes of pancreatitis the winter prior.

    That's my story and I'm sticking to it. Joke!!

    Because it had already metastasized, I was watched with CT scans every 3 months. The comparison between Feb. and May showed a node growing, positive on biopsy, and was removed on 7/3/07. I helped drive home from the hospital 4 days later and took myself out to my favorite lunch spot the next Monday.

    CT's every 6 months for 07-08. May 08 showed another node growing, PET didn't show any other sites, so stayed local and had it out on 6/28. Slower recovery.

    CT every 3 months, except when a spot showed on my liver in January. Had another CT in March, an ultrasound 2 wks later (diagnosed an hemanagioma on my liver -like a strawberry birthmark on the inside); had a CT in May and the radiologist decided that the spot was a cyst. So now I only need to do blood work and see the oncology nurse next month.

    I'm planning a fun summer -the first without surgery in 4 years.

    I wish you well with the surgery. If you have any other questions or comments that I can answer, you know where to find me.
    Donna

    Glad to see you are going to enjoy your summer
    Donna,

    Thanks for the response and you certainly have been through alot. I hope that in my case because we found it early that I will not ever have to go through what you did.

    You certainly are a survivor.
    Just curious: Do you have any family history of cancer? I do not. Both my parrents are in their 60s and never had cancer. Were you exposed to chemicals or worked with chemicals in the past. I work in the printing industry and have been exposed to printing inks and solvents for 15 years. For the last 3 years I have had very little contact with inks now that I am in a sales/vp role. I was always told that printing solvents (alcohols and acetates) can cause liver and kidney damage so I did my best (although not always) to limit my skin exposure.
    Just was wondering if your family business or past work exposed you to chemicals.

    I was also deployed during the first gulf war and took all of the meds they gave us to prevent every disease on the planet as well as used the 100% deet bug repelent required over there for the most nasty bugs in the world. I know there is some relation to exposure in Iraq and Saudi Arabia to various illnesses but I was delpoyed almost 20 years ago so it is unlikly a cause in my case. I keep struggling with the cause. Anyway good luck with your continued positive results and enjoy your vacation, you deserve it.

    I will keep you informed on my progress and wish you all the best.

    Regards,

    Will
  • corey50
    corey50 Member Posts: 111
    anyone like me out there?
    i know how scared you are right now. i was there 7 months ago. i had my left kidney removed in dec. 08.
    i had breast cancer 4 yrs ago. stage 1 lumpectomy, chemo and radiation and tamoxifen for 5 years.
    in oct. 08 i had a routine appt. with my ob/gyn i asked him for an ultrasound of my ovaries and uterus because with tamoxifen there is an increased risk of uterine cancer and with breast you have an increased risk of ovarian cancer and even though i was having no symptoms and my exam showed nothing unusual i wanted to be proactive and put my mind at ease. after pestering my dr. he agreed to an ultrasound.
    well, as my mother always says don't go looking for trouble cause it will find you.
    a week after my u/s the dr. called an said that the pelvis looked fine but they saw something on my kidney, couldn't tell if it was a cyst or what. i told him that 5 years previous i had been having some stomach problems and my gastroenterologist ordered a ct scan and that showed a small 2.5cm cyst on my kidney. at that time two of my drs. assured me that was nothing that these cysts are very common and always benign. well my ob/gyn says i should still follow up so i call my oncologist and he looks at the reports and says just to make sure i should have a ct scan. so i have the ct scan, no contrast because the tech couldn't get the iv in (i have bad veins). that same night i'm at an event with my husband when my son calls on my cell phone and says the dr. has called twice and wants to see me in his office with my husband tomorrow. well, i nearly passed out but managed to keep it together until my husband & i could get out of there. called the dr. back on cell from car and he said that it looked like it was a tumor, but probably not a recurrence of my breast cancer (one good thing)it could still be nothing but i had to see a urologist. 3 days later i'm in the urologist office, the urologist was pretty sure that it was malignant but couldn;t be sure without the contrast ct scan. but was pretty sure i would have to have my kidney out. with rcc they don't do biopsys its just hve the tumor or whole kidney out.i had another ct scan this time with contrast and a chest scan to make sure there was no other spread. had to wait over the thanksgiving weekend to get the results, try putting on a happy face when you know this. i didn't want any of my family to know until we were sure.
    saw dr. on 11/24 definitely a tumor most likely malignant. no other spread. thank God. but should have my kidney out. i asked him about partial nephrectomy, at this point i had already done alot of googling and had found this site, but he said he couldn't do it on me. at almost 4 cm. my tumor was just at the limit where he would do a laparoscopic partial and he thought with my history it would be better if i had the whole kidney out.
    sometimes if the tumor is in the functioning part of the kidney in the middle they can't do a partial, mine was not it was growing out of the bottom lobe.
    i asked him if this was the cyst that i had 5 yrs. prior on a ct scan he said he couldn't be sure but if it was it was slow growing. dr's do not like to implicate other drs. but i'v seen the report from the ct scan from 2003 and the radiologist did put cyst.
    he told me he had a surgery opening in 10 days if not i'd have to wait until after the new year. he stressed that he wasn't trying to rush me and would even help me get a second opinion.
    i was very nervous about losing my kidney. i did some research, called another dr. whose supposed to be tops in this field. and because i had cancer i spoke to my other doctors and oncology nurses.
    after a lot of soul searching and sleepless nights and some reading on the internet, i came to the conclusion that i would be happier with my future outcome if i had the radical nephrectomy. i've been told by several people that you can live a normal life with one kidney. i do still worry about if God forbid anything should happen to my good one. but i know myself and i would have been too nervous about the part they left behind. with bc i had chemo and rads but with this its nothing but surgery if its early stage, so i wanted to make sure i gave myself the best shot at a full recovery. i also did not want to have an open surgery if i could help it. from what i've read that is one hell of a surgery with a very long recovery period.
    had laparoscopic surgery on 12/12/08 friday went home from hosp. on monday morning. alot of pain the first few day. waited 10 days for follow up appt. to get path results: stage 1 with no invasion anywhere else. final size was a little over 4 cm.
    please don't let anything i said about partial versus full or open versus laparoscopic affect your decision, i did what was best for me with my situation. you should do whats best for you.
    you'll read on this board many people have had partials. and just as many have had full removal.
    even though we both got knocked on our **** with a diagnosis that we weren't expecting the good thing is it was caught early and small. i thank God that something made me push my dr. for that original ultrasound.
    i just had my 6mos. follow up, blood work and ct scans of chest, abdomen and pelvis. and everything came back good.
    so before you know it that will be you.
    good luck and good health.
  • corey50
    corey50 Member Posts: 111
    DONNA LEE, INSPIRATION
    hi donna,
    i know i've told you this before but you're an inspiration to others on this board.
    i hadn't known your whole history before. its remarkable. and it just goes to show to keep fighting and looking. no one can tell you when you're going to leave this earth except the Good Lord above. my mother had stage 3 colon cancer (spread to lymph nodes) almost 6 years ago and her surgeon said her prognosis was poor, well 6 years later she's healthy and cancer free and turning 80 in sept.
    even though you've been thru alot the past 3 years you still live your life to the fullest and enjoy every day. that's why you're inspiring to me.
    so glad that you're here 3 years later enjoying your summer. hope all of your future tests are just as good.
    love
    corey
  • donna_lee
    donna_lee Member Posts: 1,023 Member
    corey50 said:

    DONNA LEE, INSPIRATION
    hi donna,
    i know i've told you this before but you're an inspiration to others on this board.
    i hadn't known your whole history before. its remarkable. and it just goes to show to keep fighting and looking. no one can tell you when you're going to leave this earth except the Good Lord above. my mother had stage 3 colon cancer (spread to lymph nodes) almost 6 years ago and her surgeon said her prognosis was poor, well 6 years later she's healthy and cancer free and turning 80 in sept.
    even though you've been thru alot the past 3 years you still live your life to the fullest and enjoy every day. that's why you're inspiring to me.
    so glad that you're here 3 years later enjoying your summer. hope all of your future tests are just as good.
    love
    corey

    Family History of Cancer
    Hi Will-
    It's hard to say when even the Dr's werent sure. My dad's mom died when I was 9 (1952)-they know it was cancer and she had surgery, but I suspect she let it go so long before seeing anyone. It was abdominal-but could have started in the colon, liver, uterus,??? The following year my dad's sister died of breast cancer that had mets to the brain. That caused a real family rift, because aunt wouldn't come to see her mom when she was dying or to the funeral because she already knew she had cancer...but hadn't told the family.
    Dad's father died of cancer in 1960-again unspecified type, but it had mets to various places.

    My dad had prostate cancer treated with TURP (trans ureathral resection of the prostate -reamed it out) because by then he had Alzheimers and dealing with any type of ongoing treatment or chemo whould have created more complications. It keep him comfortable and made it easier to urinate until he died of a heart attack.

    A chemical that might have caused problems is 2-4-D or Agent Orange in Viet Nam. It was sold commonly as an aggressive weed killer in the 1970's. We had morning glory taking over a section of our yard, hillside, and creek. I used gloves when transferring from the gallon jug to a spray container, but they were leather and absorbed the spills. I wore the gloves for gardening off and on for years. But who knows? In the absence of confirmed and specific times and dosage, the oncologist hasn't put it in my chart.

    I have 2 friends. One a mid 70's female who had a 13# tumor on her left kidney. It was in what they call a sticky pocket (contained), but removable. The surgery did cause colon problems, and she had to have 10" removed later because it lost blood supply and died. She's been OK the past 11 years.
    A guy who does outside sales and calls on us for all our welding supplies, also spent a tour in Nam, and his doc found the small tumor by accident in 1992. He has to watch his blood pressure and cholesterol like we all do, but is doing well.

    Your July surgery should go well. I went in with the attitude that I was going to lick it and get out in the minimum time allowed. Another thing I did was learing self-hypnosis. It was a less than 2 weeks to go decision, but it did help. I learned how to put myself into a deep state of relaxation, transfer "pain", and make my hand feel icy cold to place on an area of discomfort. I should probably go back and take a refresher. The tape she made for me was specific to going into that first surgery.

    Keep us posted.
    Donna
  • floralam88
    floralam88 Member Posts: 14
    Kidney cancer,
    Hi Will,

    Do you feel any lump in any part of your body? Do you have blood in Urine, fever?
  • WilSchretz
    WilSchretz Member Posts: 16

    Kidney cancer,
    Hi Will,

    Do you feel any lump in any part of your body? Do you have blood in Urine, fever?

    Any Lump or fever
    I typed this long response and then when I previewed it it was gone.

    So this time I will just say that I have no lump, fever or symtoms at all. It was the gall stones that generated the CT scan test and I just got very lucky that we found the cancer early on the scan. (Luck is relative when you are talking cancer but I am looking at the positives). The plan is to do a partial using the laprascopic/robotic technique. My gut feeling is I will wake up from the surgery without a kidney due to the location of the tumor. It is right next to the renal artery and vein. Basically on the back side middle of the left kidney. The Urologist said he would have to flip the kidney to get to the back and then hopes he can remove it along with enough surrounding good tissue to save the rest. If not he will either go in conventional and do a partial (if he cannot do it with the robot) or he will just remove the kidney laprascopically. I guess I will know when I wake up what version worked.

    I will keep you all posted. Thanks for the good thoughts and concerns and good luck to all.

    Will
  • A_New_Journey
    A_New_Journey Member Posts: 9
    Hopefully this will be helpful to you ...
    Hi Will --

    I have a similar story to yours and felt that sharing my experience with you might be of some help. Like you, I had no "typical" symptoms for this type of cancer. No flank pain, no back pain, etc. I first visited my Primary Care Physician's office on February 17, 2009 with what I thought was a minor injury after a long bicycle ride over a beautiful day the first weekend in February. About a week after that ride, I noticed my urine had a slightly pink color. My regular doctor was away from the office, so I saw another doctor in the practice. He treated my symptoms with antibiotics for a week and when there was no real improvement, he decided to order an ultrasound exam that showed what appeared to be a large cyst on top of my right kidney. A CT Scan 2 days later confirmed something much worse … a large tumor.

    There is some history in my family of cancer. My father died of colon cancer at the age of 59. Because of this, I have been going to a Gastroenterologist for a colonoscopy every two years for over 20 years now with no sign of cancer. Through some "Family Tree" research I have been doing over the past year, I found out back in October of 2008 that my grandfather on my mother's side died of bladder cancer. My mother (who is now deceased) told us kids that her father had died when she was in her early teens and because her parents had separated, she did not know the cause. Through my genealogy research I found out that he actually died in 1951 at the age of 57. At that time, my mother was married, had a daughter and was pregnant with me. My mother never knew that he still living all those years! It turns out that my discovery of his bladder cancer was possibly significant because of the hereditary nature of some types of cancer. The Urologist I first went to see asked me why I never considered tests for cancer (other than colon cancer) considering my grandfather died at such an early age of it. I told him that I just learned about it a few months earlier. Kind of a strange set of circumstances, huh?

    Much of the following information I recently posted on another discussion board on this Web site, but I felt that it was relevant to your upcoming surgery.

    After being first diagnosed with cancer in early March, and after getting a second and third opinion, I felt comfortable in my decision to have surgery as soon as I could get everything in order.

    I was referred to a Urologist who was the best! He spent a couple of hours with me during my first consultation explaining everything to me in layman's terms. Over the next couple of days, he called me several times to discuss his thinking and my options (which were very few!).

    My Urologist, and now surgeon, first performed a cystocopy 2 weeks before the scheduled nephrectomy. The purpose of the cystocopy was to look closely at my bladder, right kidney as well as the right ureter. He suspected that cancer had invaded my right kidney along with the right ureter even though the CT Scan showed the tumor actually positioned on top of my right kidney. His suspicions were correct and this decision really helped him fully plan out the surgery well beforehand. I had my surgery on April 6. The two anesthesiologists for my surgery recommended an epidural, and I agreed, because a friend of mine has a cousin who worked at Memorial Sloan-Kettering Cancer Center in New York City and he said to ask for one as recovery immediately after a radical nephrectomy can be quite painful without it.

    My surgeon started the operation by once again performing a cystocopy to make sure that things had not changed from the March 20th procedure. It also gave him another chance to closely look at my ureter to determine how close to the bladder he was going to snip off the ureter. He had hoped to not touch the bladder at all during the surgery. The cystoscopy took about an hour and then he started the procedure to remove my right kidney, ureter, and adrenal gland. The nephrectomey took another 3 hours or so. The surgeon I found was highly skilled in laparoscopic procedures and has completed hundreds of them. He has also had a number or articles in published in various medical journals on this procedure, so I felt very fortunate that he was my surgeon. An open nephrectomy is highly invasive (as you can well imagine), and recovery is longer than if done laparoscopically. I have three small marks on my abdomin where they inserted the small tools and a tiny camera and one incision scar where he removed the tumor, kidney and ureter. The initial plan was for the this incision to be about 3 inches long, but because the tumor was much larger than he thought (based on the CT Scan), he had to use a 6 inch incision in order to get everything out without harming the bladder.

    My Urologist told me that the criteria for my release from the hospital was: 1) No major pain, 2) No physical limitations (able to walk, climb stairs, etc.), and 3) No dietary restrictions. I was up sitting in a chair the next morning after surgery, up walking around my room that evening (very limited due to the attached catheter, IV, epidural, etc.). After a full day of only being able to have ice chips, I could not wait for the "soft diet" of broth and 3 flavors of jello (one each for breakfast, lunch & dinner!) I was put on a regular diet the next day since I was able to hold everything I ate down OK. My recovery in the hospital was better than I expected and I was released after 4 days. My recovery at home went very well too and I felt "back to normal" after only another week. I even went out to mow my lawn within a week of being out of the hospital. When I told my doctor this, he said he did not mean mowing the lawn when he told me that I had no restrictions after releasing me from the hospital!

    Three days after surgery, the pathology report showed the size of the tumor was 9.0 x 6.5 x 6.o cm. (from your note, your tumor looks to be about half this size) My cancer was determined to be Stage IIIa. The pathologist's report also showed that my cancer was more than likely transitional in nature. While there were no other tumors seen, cancer cells were found to be high grade and transitional. This meant that there was a high likelihood of recurring cancer within 3 years unless adjuvant chemotherapy treatments were started shortly (within 6 weeks) after surgery.

    I am now undergoing a treatment plan of 4 cycles of chemotherapy. After the final cycle of treatment in early August, I will go in for a PET Scan, and if no active cancer cells are seen, I will need to have a CT Scan and chest X-Ray every 6 months for a 3-year period. If after 3 years there are no cancer cells present, I will be checked every year.

    I have heard the phrase "living with cancer" and I think this is what they mean. While I may not have ever have to deal with another tumor again, I still have the possibility of these cancer cells transitioning to some other part of my body for the rest of my life.

    One thing I have learned so far through this whole "cancer journey" is that every person's cancer is quite different. You need to become as "informed" as much as possible in order to ask the right questions of doctors. As you have probably already found out, renal cancer is extremely rare and accounts for about 3% of all cancers within the U.S. Therefore, there is very little published information out in the public domain.

    I have found the Cancer Survivors Network and the American Cancer Society to be a very valuable resource to me for reliable and actionable information. The cancer center staff where I receive chemotherapy has also been a huge help to me in sorting out all the facts. The chemo nurses there are not only very compassionate, but have been on staff for over 25 years and have seen it all.

    Good luck to you Will and let me know if you have any additional questions. I am happy to help you out and all others in our unique "club".

    Dave
  • WilSchretz
    WilSchretz Member Posts: 16

    Hopefully this will be helpful to you ...
    Hi Will --

    I have a similar story to yours and felt that sharing my experience with you might be of some help. Like you, I had no "typical" symptoms for this type of cancer. No flank pain, no back pain, etc. I first visited my Primary Care Physician's office on February 17, 2009 with what I thought was a minor injury after a long bicycle ride over a beautiful day the first weekend in February. About a week after that ride, I noticed my urine had a slightly pink color. My regular doctor was away from the office, so I saw another doctor in the practice. He treated my symptoms with antibiotics for a week and when there was no real improvement, he decided to order an ultrasound exam that showed what appeared to be a large cyst on top of my right kidney. A CT Scan 2 days later confirmed something much worse … a large tumor.

    There is some history in my family of cancer. My father died of colon cancer at the age of 59. Because of this, I have been going to a Gastroenterologist for a colonoscopy every two years for over 20 years now with no sign of cancer. Through some "Family Tree" research I have been doing over the past year, I found out back in October of 2008 that my grandfather on my mother's side died of bladder cancer. My mother (who is now deceased) told us kids that her father had died when she was in her early teens and because her parents had separated, she did not know the cause. Through my genealogy research I found out that he actually died in 1951 at the age of 57. At that time, my mother was married, had a daughter and was pregnant with me. My mother never knew that he still living all those years! It turns out that my discovery of his bladder cancer was possibly significant because of the hereditary nature of some types of cancer. The Urologist I first went to see asked me why I never considered tests for cancer (other than colon cancer) considering my grandfather died at such an early age of it. I told him that I just learned about it a few months earlier. Kind of a strange set of circumstances, huh?

    Much of the following information I recently posted on another discussion board on this Web site, but I felt that it was relevant to your upcoming surgery.

    After being first diagnosed with cancer in early March, and after getting a second and third opinion, I felt comfortable in my decision to have surgery as soon as I could get everything in order.

    I was referred to a Urologist who was the best! He spent a couple of hours with me during my first consultation explaining everything to me in layman's terms. Over the next couple of days, he called me several times to discuss his thinking and my options (which were very few!).

    My Urologist, and now surgeon, first performed a cystocopy 2 weeks before the scheduled nephrectomy. The purpose of the cystocopy was to look closely at my bladder, right kidney as well as the right ureter. He suspected that cancer had invaded my right kidney along with the right ureter even though the CT Scan showed the tumor actually positioned on top of my right kidney. His suspicions were correct and this decision really helped him fully plan out the surgery well beforehand. I had my surgery on April 6. The two anesthesiologists for my surgery recommended an epidural, and I agreed, because a friend of mine has a cousin who worked at Memorial Sloan-Kettering Cancer Center in New York City and he said to ask for one as recovery immediately after a radical nephrectomy can be quite painful without it.

    My surgeon started the operation by once again performing a cystocopy to make sure that things had not changed from the March 20th procedure. It also gave him another chance to closely look at my ureter to determine how close to the bladder he was going to snip off the ureter. He had hoped to not touch the bladder at all during the surgery. The cystoscopy took about an hour and then he started the procedure to remove my right kidney, ureter, and adrenal gland. The nephrectomey took another 3 hours or so. The surgeon I found was highly skilled in laparoscopic procedures and has completed hundreds of them. He has also had a number or articles in published in various medical journals on this procedure, so I felt very fortunate that he was my surgeon. An open nephrectomy is highly invasive (as you can well imagine), and recovery is longer than if done laparoscopically. I have three small marks on my abdomin where they inserted the small tools and a tiny camera and one incision scar where he removed the tumor, kidney and ureter. The initial plan was for the this incision to be about 3 inches long, but because the tumor was much larger than he thought (based on the CT Scan), he had to use a 6 inch incision in order to get everything out without harming the bladder.

    My Urologist told me that the criteria for my release from the hospital was: 1) No major pain, 2) No physical limitations (able to walk, climb stairs, etc.), and 3) No dietary restrictions. I was up sitting in a chair the next morning after surgery, up walking around my room that evening (very limited due to the attached catheter, IV, epidural, etc.). After a full day of only being able to have ice chips, I could not wait for the "soft diet" of broth and 3 flavors of jello (one each for breakfast, lunch & dinner!) I was put on a regular diet the next day since I was able to hold everything I ate down OK. My recovery in the hospital was better than I expected and I was released after 4 days. My recovery at home went very well too and I felt "back to normal" after only another week. I even went out to mow my lawn within a week of being out of the hospital. When I told my doctor this, he said he did not mean mowing the lawn when he told me that I had no restrictions after releasing me from the hospital!

    Three days after surgery, the pathology report showed the size of the tumor was 9.0 x 6.5 x 6.o cm. (from your note, your tumor looks to be about half this size) My cancer was determined to be Stage IIIa. The pathologist's report also showed that my cancer was more than likely transitional in nature. While there were no other tumors seen, cancer cells were found to be high grade and transitional. This meant that there was a high likelihood of recurring cancer within 3 years unless adjuvant chemotherapy treatments were started shortly (within 6 weeks) after surgery.

    I am now undergoing a treatment plan of 4 cycles of chemotherapy. After the final cycle of treatment in early August, I will go in for a PET Scan, and if no active cancer cells are seen, I will need to have a CT Scan and chest X-Ray every 6 months for a 3-year period. If after 3 years there are no cancer cells present, I will be checked every year.

    I have heard the phrase "living with cancer" and I think this is what they mean. While I may not have ever have to deal with another tumor again, I still have the possibility of these cancer cells transitioning to some other part of my body for the rest of my life.

    One thing I have learned so far through this whole "cancer journey" is that every person's cancer is quite different. You need to become as "informed" as much as possible in order to ask the right questions of doctors. As you have probably already found out, renal cancer is extremely rare and accounts for about 3% of all cancers within the U.S. Therefore, there is very little published information out in the public domain.

    I have found the Cancer Survivors Network and the American Cancer Society to be a very valuable resource to me for reliable and actionable information. The cancer center staff where I receive chemotherapy has also been a huge help to me in sorting out all the facts. The chemo nurses there are not only very compassionate, but have been on staff for over 25 years and have seen it all.

    Good luck to you Will and let me know if you have any additional questions. I am happy to help you out and all others in our unique "club".

    Dave

    Helpful indeed
    Dave,

    Thank you for the very detailed explaination of your situation and I am glad you are doing well. By the way I did not consider the epidoral but I certainly am now. Thnak you.

    A few questions/coments:
    Did you have to go through Chemo because of the type of cancer cell found? If they find just clear cell stage 1 or 2 in mine do you think I would have to go through Chemo? Especially if I have a partial nephrectomy? The CT scan showed no spread or Lymph node activity but it sounds like yours didn't either. My doctor never mentioned a cystocomy (what is it?) I have been pretty positive throughout this situation because it seems like it's a relatively simple surgery (per my Uroligist who by the way is the chief Urologist at UC Hospital) so I trust him. Once it is done the only followup after recovery is close monitoring (frequent scans that taper off with increased negative finding results) Chemo, radiation, loosing your hair is another story. I was hoping to avoid these but if I have to do it I will.

    The Irony here is I still need to have my Gall Bladder out and I have been considering doing that first since I really didn't even know about the Kidney or have any symptoms. The Gall Bladder issue is a constant indegestion issue and is cousing me lot of discomfort.

    I know your not a doctor but you certainly are more educated about this subject than I am. If you were in my shoes what would you do? The Kidney or the Gall bladder first? Don't worry I won't hold you to it I am just looking for another opinion.

    I guess my thoughts are the Kidney first because if there is a spread then long term that is a worse prognosis than some indegestion for a couple months.

    Let me know your thoughts and thanks for your feedback.

    Will
  • A_New_Journey
    A_New_Journey Member Posts: 9

    Helpful indeed
    Dave,

    Thank you for the very detailed explaination of your situation and I am glad you are doing well. By the way I did not consider the epidoral but I certainly am now. Thnak you.

    A few questions/coments:
    Did you have to go through Chemo because of the type of cancer cell found? If they find just clear cell stage 1 or 2 in mine do you think I would have to go through Chemo? Especially if I have a partial nephrectomy? The CT scan showed no spread or Lymph node activity but it sounds like yours didn't either. My doctor never mentioned a cystocomy (what is it?) I have been pretty positive throughout this situation because it seems like it's a relatively simple surgery (per my Uroligist who by the way is the chief Urologist at UC Hospital) so I trust him. Once it is done the only followup after recovery is close monitoring (frequent scans that taper off with increased negative finding results) Chemo, radiation, loosing your hair is another story. I was hoping to avoid these but if I have to do it I will.

    The Irony here is I still need to have my Gall Bladder out and I have been considering doing that first since I really didn't even know about the Kidney or have any symptoms. The Gall Bladder issue is a constant indegestion issue and is cousing me lot of discomfort.

    I know your not a doctor but you certainly are more educated about this subject than I am. If you were in my shoes what would you do? The Kidney or the Gall bladder first? Don't worry I won't hold you to it I am just looking for another opinion.

    I guess my thoughts are the Kidney first because if there is a spread then long term that is a worse prognosis than some indegestion for a couple months.

    Let me know your thoughts and thanks for your feedback.

    Will

    Additional Information ...
    Hi Will --

    Adjuvant chemotherapy was recommended for me by three specialists based on the pathologist's report two days after my surgery. The pathology report showed that my right kidney and entire right ureter (which were completely removed along with the right adrenal gland) had high grade, poorly differentiated, invasive papillary cancer cells and the stage was determined to be III-a. (Note: The right adrenal gland and the surrounding lymph nodal tissue ended up being completely clear of any cancer cells).

    My Urologist/Surgeon had hoped that the pathology report would have shown clear cell cancer and fully contained to the kidney and ureter he removed, but this was not the case for me. He told me (and two other specialists concurred) that without chemotherapy there was a very good chance cancer would redevelop somewhere else in my body within three years without chemotherapy. This was based on past medical research studies with similar cancer patients. It was for this reason that I felt the best thing for me to do was to undergo chemo treatment and I never gave it a second thought (even considering all the potential adverse side effects from chemo). Radiology was never mentioned to me as an alternative and I am guessing that this was because of the transitional nature of the cancer cells. I think radiology is used when an Oncologist is able to pinpoint the location(s) of cancerous cells.

    Based on what you have been told by your Urologist it does not sound to me like you'll have to undergo chemotherapy because it seems to be fully contained, BUT (there's always a "but" isn't there?) I am pretty sure you won't know anything definitive until after you have the partial nephrectomy and the pathology report is provided to you and your surgeon. While the pathology report will take a day or two to be completed, your surgeon will probably have a fairly good idea of your prognosis based on what he observed during the surgical procedure.

    Okay, now on to the Cystoscopy. It is an exploratory procedure where a Urlogist inserts a tiny lighted scope via the uretha/penis to look inside the bladder, ureter(s), and kidney(s) attempting to determine (in my particular case) the extent of the cancer's invasion. (Do not worry, if you should decide to have this done, there is no pain as you are heavily sedated for this procedure!) In my case, since we knew from the CT Scan that the right kidney was affected and not the left, he only examined the right side. Think of this procedure similar to that of a colonoscopy. The doctor maneuvers his scope in and around the inside of the bladder, ureter and kidney to see what's there. My Urologist also took several biopsies during the procedure to determine the initial stage and grade of my cancer. I have been told that this is common practice during a cystoscopy. The results of the cystoscopy showed that cancer was present in not only my right kidney, but extended throughout the right ureter, but not the bladder (thankfully). This meant that the surgery would involve removal of the tumor, my right kidney, and ureter.

    My Urologist told me that, for him, the purpose of doing the Cystoscopy ahead of surgery was come up with a surgical "game plan" and hopefully prevent any "surprises" during surgery. It sounded like a good plan to me! Before performing the Cystoscopy, he first thought that he would be removing the tumor, the kidney and a portion of the ureter. Being he could now see that the entire ureter was affected, the surgery would be a bit more complicated because of the location where the ureter is attached to the bladder. He did not want to be anywhere near my bladder during surgery, but this was now not going to be the case. While he had to be extra careful when he removed the ureter from the bladder (and he was), a Cystogram was performed 10 days after surgery to test the bladder's ability to hold urine. The results of this test showed no "leakage" at the area where the ureter was snipped away from the bladder. This was a huge relief to me! A Cystogram, by the way, is a procedure done by a Radiologist where a large volume of contrast liquid is pumped into your bladder to look for any leaks. Luckily I already had a catheter in place after my surgery, so I did not have to go through the pain of him pushing a tube up through my penis. Based on your diagnosis and having only a partial nephrectomy, you won't have to worry about this because of no involvment with your left ureter or bladder.

    My Urologist/Surgeon reassured me more than a few times that he had completed hundreds of laparoscopic surgeries and that (just like your Urologist told you), nephrectomies have become fairly routine with people donating kidneys and such. I had a feeling that this was told to me (and others) to relieve anxiety, but when it comes right down to it, when a doctor is working inside your body and cutting away body parts, it IS A BIG DEAL (at least to me!)

    One thing I have read about surgery involving partial or full removal of the LEFT kidney is the "potential" for the surgeon to nick and damage the spleen, resulting in the need to remove it too. While I'm told that the spleen functions as part of the immune system and contributes to the production and storage of blood cells as part of the circulatory system, it is NOT vital for human survival. Nevertheless, I know I'd prefer to keep it inside of me and was glad that the spleen is not close to the right kidney.

    As to your decision on having a gall bladder surgery prior to the partial nephrectomy ... As you stated, I am not a doctor and don't even pretend to know much in the medical field (but, I am learning quickly about my form of cancer). I'm sure your Urologist is in a much better position to give you constructive advice. If it were me Will, the fact that there is a golf ball-sized tumor growing near your left kidney, would be reason enough to get that thing out of you ASAP and then deal with your gall bladder later.

    If there is anything I can do to help you through this Will, please know that I am here and supporting you all the way.

    Dave
  • WilSchretz
    WilSchretz Member Posts: 16

    Additional Information ...
    Hi Will --

    Adjuvant chemotherapy was recommended for me by three specialists based on the pathologist's report two days after my surgery. The pathology report showed that my right kidney and entire right ureter (which were completely removed along with the right adrenal gland) had high grade, poorly differentiated, invasive papillary cancer cells and the stage was determined to be III-a. (Note: The right adrenal gland and the surrounding lymph nodal tissue ended up being completely clear of any cancer cells).

    My Urologist/Surgeon had hoped that the pathology report would have shown clear cell cancer and fully contained to the kidney and ureter he removed, but this was not the case for me. He told me (and two other specialists concurred) that without chemotherapy there was a very good chance cancer would redevelop somewhere else in my body within three years without chemotherapy. This was based on past medical research studies with similar cancer patients. It was for this reason that I felt the best thing for me to do was to undergo chemo treatment and I never gave it a second thought (even considering all the potential adverse side effects from chemo). Radiology was never mentioned to me as an alternative and I am guessing that this was because of the transitional nature of the cancer cells. I think radiology is used when an Oncologist is able to pinpoint the location(s) of cancerous cells.

    Based on what you have been told by your Urologist it does not sound to me like you'll have to undergo chemotherapy because it seems to be fully contained, BUT (there's always a "but" isn't there?) I am pretty sure you won't know anything definitive until after you have the partial nephrectomy and the pathology report is provided to you and your surgeon. While the pathology report will take a day or two to be completed, your surgeon will probably have a fairly good idea of your prognosis based on what he observed during the surgical procedure.

    Okay, now on to the Cystoscopy. It is an exploratory procedure where a Urlogist inserts a tiny lighted scope via the uretha/penis to look inside the bladder, ureter(s), and kidney(s) attempting to determine (in my particular case) the extent of the cancer's invasion. (Do not worry, if you should decide to have this done, there is no pain as you are heavily sedated for this procedure!) In my case, since we knew from the CT Scan that the right kidney was affected and not the left, he only examined the right side. Think of this procedure similar to that of a colonoscopy. The doctor maneuvers his scope in and around the inside of the bladder, ureter and kidney to see what's there. My Urologist also took several biopsies during the procedure to determine the initial stage and grade of my cancer. I have been told that this is common practice during a cystoscopy. The results of the cystoscopy showed that cancer was present in not only my right kidney, but extended throughout the right ureter, but not the bladder (thankfully). This meant that the surgery would involve removal of the tumor, my right kidney, and ureter.

    My Urologist told me that, for him, the purpose of doing the Cystoscopy ahead of surgery was come up with a surgical "game plan" and hopefully prevent any "surprises" during surgery. It sounded like a good plan to me! Before performing the Cystoscopy, he first thought that he would be removing the tumor, the kidney and a portion of the ureter. Being he could now see that the entire ureter was affected, the surgery would be a bit more complicated because of the location where the ureter is attached to the bladder. He did not want to be anywhere near my bladder during surgery, but this was now not going to be the case. While he had to be extra careful when he removed the ureter from the bladder (and he was), a Cystogram was performed 10 days after surgery to test the bladder's ability to hold urine. The results of this test showed no "leakage" at the area where the ureter was snipped away from the bladder. This was a huge relief to me! A Cystogram, by the way, is a procedure done by a Radiologist where a large volume of contrast liquid is pumped into your bladder to look for any leaks. Luckily I already had a catheter in place after my surgery, so I did not have to go through the pain of him pushing a tube up through my penis. Based on your diagnosis and having only a partial nephrectomy, you won't have to worry about this because of no involvment with your left ureter or bladder.

    My Urologist/Surgeon reassured me more than a few times that he had completed hundreds of laparoscopic surgeries and that (just like your Urologist told you), nephrectomies have become fairly routine with people donating kidneys and such. I had a feeling that this was told to me (and others) to relieve anxiety, but when it comes right down to it, when a doctor is working inside your body and cutting away body parts, it IS A BIG DEAL (at least to me!)

    One thing I have read about surgery involving partial or full removal of the LEFT kidney is the "potential" for the surgeon to nick and damage the spleen, resulting in the need to remove it too. While I'm told that the spleen functions as part of the immune system and contributes to the production and storage of blood cells as part of the circulatory system, it is NOT vital for human survival. Nevertheless, I know I'd prefer to keep it inside of me and was glad that the spleen is not close to the right kidney.

    As to your decision on having a gall bladder surgery prior to the partial nephrectomy ... As you stated, I am not a doctor and don't even pretend to know much in the medical field (but, I am learning quickly about my form of cancer). I'm sure your Urologist is in a much better position to give you constructive advice. If it were me Will, the fact that there is a golf ball-sized tumor growing near your left kidney, would be reason enough to get that thing out of you ASAP and then deal with your gall bladder later.

    If there is anything I can do to help you through this Will, please know that I am here and supporting you all the way.

    Dave

    Today's Update
    Dave,

    Went to the Urologist today to review the second CT scan I had performed 2 weeks ago. This time we were able to view it on the computer and scroll around and zoom in and out. Pretty cool technology. The Dr told me due to the location of the tumor and it's proximity to the artery and vien and the fact that there will not be a thick enough section of the good kidney tissue to leave behind after tumor removal, he told me that he needed to take the whole Kidney and most likely the adrenal gland as well. This was not the news I expected but I was not shocked either to hear it. The adrenal gland part was unexpected.

    My surgery is planned for July 14th.

    Overall I am just pissed off at this situation considering I feel perfectly fine and have no symptoms. I feel queezy even talking about the procedure and had some very strange reactions to the doctors description of the operation. I even laughed during his explaination of the steps which he thought was me laughing at him. I have no idea why considering I am a very serious person most of the time. It must be my way of dealing with this or something. Anyway the gall bladder problem seems to be improving and I am going to put that procdure off for a later date. I did mention the epidoral to the Dr and he said he would do it if I requested it but thought it really wasn't nessesary and could increase the hospital stay. Part of the release criteria as you know is to be able to urinate on your own after the catheter is removed. He said the epidoral shuts off the nerves and may prevent or delay you from going. Did this hapopen with you?

    All in all what I am hoping for is a smooth surgery, short hospital stay and quick and painless recovery. It may not go exactly this way but hey I am hoping for the best. I am also crossing my fingers for a benign tumor or type 1. Again hoping for the best.

    Let me know your thoughts and thank you for your support

    Will
  • A_New_Journey
    A_New_Journey Member Posts: 9

    Today's Update
    Dave,

    Went to the Urologist today to review the second CT scan I had performed 2 weeks ago. This time we were able to view it on the computer and scroll around and zoom in and out. Pretty cool technology. The Dr told me due to the location of the tumor and it's proximity to the artery and vien and the fact that there will not be a thick enough section of the good kidney tissue to leave behind after tumor removal, he told me that he needed to take the whole Kidney and most likely the adrenal gland as well. This was not the news I expected but I was not shocked either to hear it. The adrenal gland part was unexpected.

    My surgery is planned for July 14th.

    Overall I am just pissed off at this situation considering I feel perfectly fine and have no symptoms. I feel queezy even talking about the procedure and had some very strange reactions to the doctors description of the operation. I even laughed during his explaination of the steps which he thought was me laughing at him. I have no idea why considering I am a very serious person most of the time. It must be my way of dealing with this or something. Anyway the gall bladder problem seems to be improving and I am going to put that procdure off for a later date. I did mention the epidoral to the Dr and he said he would do it if I requested it but thought it really wasn't nessesary and could increase the hospital stay. Part of the release criteria as you know is to be able to urinate on your own after the catheter is removed. He said the epidoral shuts off the nerves and may prevent or delay you from going. Did this hapopen with you?

    All in all what I am hoping for is a smooth surgery, short hospital stay and quick and painless recovery. It may not go exactly this way but hey I am hoping for the best. I am also crossing my fingers for a benign tumor or type 1. Again hoping for the best.

    Let me know your thoughts and thank you for your support

    Will

    Additional thoughts on your upcoming surgery ...
    Hi Will --

    You are right about CT Scans. The technology is incredible! A PET Scan (which you don’t have to have unless your doctor suspects a malignancy outside of the primary site of the tumor) is even more extraordinary (and very expensive). A PET Scan is a form of nuclear medicine. They inject you with a radioactive material through an IV and then ask you to remain very still for a period of one hour while the radioactive material moves throughout your system. After an hour, they put you into the same kind of machine (tube) as a CT Scan. The first part of the exam is a regular CT Scan, then the radiologist starts the PET Scan process while you are laying in the same CT Scan “tube”.

    As you probably already know from your research, cancer cells are rapidly dividing and multiplying cells. The PET Scan looks for any high-activity cells (cancer cells being one such type) in the body and the radioactive material that was injected attaches itself to any of these hyperactive cells. This is why it was important to be still for the hour to not create any self-induced high activity and produce a false reading.

    I had my CT Scan done 4 days before I first saw a Urologist. Two days after the scan (on a Friday), I went to the hospital where I had it done and asked for a copy of it on a CD so that I could take it with me for my consultation with the Urologist. Of course, as soon as I got home with it I popped into my laptop to look it over. I did all the zoom ins and zoom outs and used the looping function to move around the pelvic region. Once I figured out the position of my body in the scan and the perspective, I concentrated looking for the tumor on top of my right kidney. I thought I had an “ah ha” moment while I was flipping around to the various views. It wasn’t until I got to my appointment with the Urologist that I figured out I wasn’t even looking anywhere near where the tumor was located. So much for my self-diagnosing capability!!

    I was so sorry to read that your Urologist has now decided it would be best to remove the entire left kidney along with the adrenal gland. It takes a person some time to absorb learning of an initial diagnosis of cancer and just when you have digested this news and are preparing yourself mentally and physically for surgery, something changes. Everything happened so fast in my situation that I had little time to think about all the “what ifs” or get pissed off. Like you, I am mostly a serious person, but sometimes I found myself dealing with the stress of my situation with sort of a “gallows humor”. At one point during the doctor’s explanation of the surgery, he was showing me the location on lower stomach where he would remove the tumor and kidney, and I sort of laughed a little and asked him to try to give me a set of six-pack abs while he was in there.

    I guess the one good thing to keep in mind Will is that you will still have a fully functional right kidney along with an adrenal gland, and you only need one set to live a perfectly normal life.

    In response to the epidural and the potential for a longer stay in the hospital. The conditions for my release from the hospital did not include the ability to urinate on my own. I had to keep the catheter and the urine bag for two weeks in order to allow the portion of my bladder where the surgeon cut away the ureter enough time to heal. Your surgery will not involve this because your doctor will probably just cut the ureter tube away from your left kidney at some point just below the kidney itself and not be anywhere near your bladder. My surgery was a bit more complicated because the right ureter was also fully involved with cancer and had to removed all the way to the point of where it connects to the bladder.

    I can tell you that the very next day after my surgery I was up, out of bed, and sitting in a chair (with the epidural still in place). The 2nd day I was up and walking around my room (although limited by the IV and other apparatuses attached to me). The epidural was removed in the late afternoon of that 2nd day after surgery, but throughout those 2 days, I always had full feeling in my lower extremities and I could also hear the inner workings of my digestive tract. I have no way of knowing whether my ability to urinate on my own would have been affected by the epidural because of the catheter in place.

    I feel that you will have to look back on your experiences with pain and your tolerance of it. Each person is different in the way they manage pain. I can tell you that I had very little pain after my surgery. The pain management people in the hospital kept coming in and asking me how my pain was and I always rated it a zero, one or a two on a 10-point scale (10 being excruciating). This surprised them and when I asked why, they said that this type of surgery is usually very painful for at least 24 hours afterwards, because during surgery they are moving other organs (bladder, colon, etc.) around inside to get to the kidney, which is closer to your back and this disruption causes pain. I chose to have the epidural based solely on the recommendation of the good friend of mine who worked at Memorial Sloan-Kettering in NYC and when the anesthesiologist also recommended it to me on the morning of my surgery, I said OK after asking my surgeon what he thought.

    I live in the Washington, DC area and I think you live out West, so maybe there are some regional differences in medical philosophy. In any case, just weigh the pros and cons and you will come to decisions that make you comfortable before going into your surgery, so that on the day of surgery you are not second-guessing or feeling any extra stress.

    Good luck on the 14th Will. My positive thoughts will be with you for a good outcome and speedy recovery!

    Dave
  • nancygray
    nancygray Member Posts: 3
    Caught it early -
    Hey -
    I too was diagnosed with RCC in Feb 2009 - 4 cm mass inside my left kidney - I had a radical nephrectomy on 3-16-2009, back to work on 4-16-2009 -
    I was shocked as well as you - mine was found incidentally - from left hip pain - my doc wanted me to have hip xray and ct scan of abdomen - and there it was - no symptons, urinalysis have always been fine - no pain - I was shocked beyond belief -

    I am feeling fine - except for soreness in my belly- which I guess is from cutting through muscles and nerves - I hope to be 100% very soon -

    Best of luck to you and your wife, my prayers will be with you.

    Nancy
  • WilSchretz
    WilSchretz Member Posts: 16
    nancygray said:

    Caught it early -
    Hey -
    I too was diagnosed with RCC in Feb 2009 - 4 cm mass inside my left kidney - I had a radical nephrectomy on 3-16-2009, back to work on 4-16-2009 -
    I was shocked as well as you - mine was found incidentally - from left hip pain - my doc wanted me to have hip xray and ct scan of abdomen - and there it was - no symptons, urinalysis have always been fine - no pain - I was shocked beyond belief -

    I am feeling fine - except for soreness in my belly- which I guess is from cutting through muscles and nerves - I hope to be 100% very soon -

    Best of luck to you and your wife, my prayers will be with you.

    Nancy

    Question for Nancy
    Nancy,

    Thanks for you thoughts and prayers and I am glad you are doing well.

    I have a few questions that I would like to know about if you do not mind:
    Did you have an open surgery or laprascopic?
    What kind of prep did you have to do before surgery?
    How old are you and did you have any family history or any other contributing factors that may have caused it? Any theories? I work in the printing/packaging industry and used to run a printing press with solvent based inks(Acetates and alcohols). I haven't been exposed to inks for over three years since I am now a VP at a packaging facility away from the printing world but my family thinks my exposure may have been a factor.

    Did they have to remove the adrenal gland too? My doctor informed me that he is fairly certain it will have to come out also.
    Did you feel strange after the surgery? Like for example did you feel weak with only the one kidney, other than the meds and recovery?
    Do you feel any differnt now since you have had several months to recover. If you compared your overall health to before the surgery how would you score it? Better - Worse?

    My main concern other than the benefit of removal of cancer is the recovery time. I have never been away from work for more than a couple weeks even after two back surgeries. (L4-5 microdiscectomy in 1999 and 2006). With the first back surgery I was laid up for a week and walked it off the second and was back to work the third. The scond surgery recovery was 1 week. I guess I am just rying to figure out how long it will take to feel normal again. I get very paranoid thinking about life with one kidney and the possibility that it may come back in the right kidney later on. I always like to have a plan B in life and I guess in this case it's all about plan A.

    Did you have to adjust your diet and do you do anything differnt now with only one kidney?

    Any advice?

    Thanks for any input you can provide me. My surgery is a little over a week away.

    Regards,

    Will
  • corey50
    corey50 Member Posts: 111

    Question for Nancy
    Nancy,

    Thanks for you thoughts and prayers and I am glad you are doing well.

    I have a few questions that I would like to know about if you do not mind:
    Did you have an open surgery or laprascopic?
    What kind of prep did you have to do before surgery?
    How old are you and did you have any family history or any other contributing factors that may have caused it? Any theories? I work in the printing/packaging industry and used to run a printing press with solvent based inks(Acetates and alcohols). I haven't been exposed to inks for over three years since I am now a VP at a packaging facility away from the printing world but my family thinks my exposure may have been a factor.

    Did they have to remove the adrenal gland too? My doctor informed me that he is fairly certain it will have to come out also.
    Did you feel strange after the surgery? Like for example did you feel weak with only the one kidney, other than the meds and recovery?
    Do you feel any differnt now since you have had several months to recover. If you compared your overall health to before the surgery how would you score it? Better - Worse?

    My main concern other than the benefit of removal of cancer is the recovery time. I have never been away from work for more than a couple weeks even after two back surgeries. (L4-5 microdiscectomy in 1999 and 2006). With the first back surgery I was laid up for a week and walked it off the second and was back to work the third. The scond surgery recovery was 1 week. I guess I am just rying to figure out how long it will take to feel normal again. I get very paranoid thinking about life with one kidney and the possibility that it may come back in the right kidney later on. I always like to have a plan B in life and I guess in this case it's all about plan A.

    Did you have to adjust your diet and do you do anything differnt now with only one kidney?

    Any advice?

    Thanks for any input you can provide me. My surgery is a little over a week away.

    Regards,

    Will

    QUESTIONS
    hi will,
    i know you asked these questions of nancy who had the last post, but i hope you don't mind if i give you my 2cents.

    1. i was 50 when i was diagnosed last nov. no family history of kidney cancer. i had breast cancer 4 years ago and my mother has had colon cancer.
    i too wonder how i could have gotten this when i have none of the risk factors and i don't think i've ever been exposed to anything and i've never abused prescription drugs which is another risk factor. i barely take tylenol when i need it.
    the dr. said sometimes these things are just random. i had a cyst that showed up on a ct scan 5 years earlier but my urologist will not say if that is what turned into cancer. i try not to think about it too much because i'll drive myself crazy with the what ifs.
    i just know i will never let a cyst go again without further investigation.

    2. i had my left kidney removed laprascopically. one incision about 2 inches vertically to the left of my belly button. two smaller ones horizontally to the left of that.
    i did not have my adrenal gland removed. i believe that if there is no cancer there its best to leave it. this gland does have a function so its better to leave it.

    3.the prep for the surgery was blood work (cbc, liver function, kidney function)and an ekg a week before. also i take a baby aspirin every day so i had to stop that 10 days before surgery. DO NOT take any aspirin products for at least a week before your surgery for fear of too much bleeding. check with your dr. about any other meds you take on a regular basis.
    there also is a colon cleanse the day before. if you've ever had a colonoscopy its the same thing. not pleasant. this is because the intestine lays over the other organs in your abdomen and my dr. said he wanted it nice and flat so he could move it around easier. also GOD forbid he should nick it or something he wants it empty so no bacteria will get in the abdomen.
    i had to take laxatives and drink some awful stuff the day before and no eating anything solid. again if you've had a colonoscopy its the same thing.

    4. i don't feel weird having one kidney. most of the time i forget. i've been told by so many people that you can live a completely normal life with just one.
    you should be extra careful with any sports of hobbies that could result in injury. like water skiing or football.
    i don't take alot of meds. but i did check with my urologist that what i take is safe with one kidney and i would recommend that if anything is ever prescribed for you in the future you let the pharmacist know. they usually know more than drs. anyway about meds.

    5. i was in the hospital for 3 days and i would say the pain was intense at times. the nurses were more than willing to give pain meds. but the second day i waited too long to ask for something and than it takes longer to feel the effects. don't do this.
    you feel very sore and stiff the first few days and walk like an old man. haha. i had morphine drip in the hospital than switched to vicodin pills and thats what i came home with. i took them at home for 4 more days, again don't wait till you need them, take them on a schedule.

    in the hospital they get you up the next day and they tell you the more you walk the better. at first it felt like every part of my body hurt and i couldn't figure out why. but i realized first they put you in some weird positions to do the surgery. secondly with the laprascopic they fill you with alot of air which gets absorbed by your tissues and takes some time to dissipate.
    the day after i came home my husband took me for walk near the beach in a parking lot, i did two laps then home for a nap. but the fresh air was just as medicinal.
    i would describe the pain the first week as extreme discomfort. like someone punched you really hard in the stomach.
    i went back to my surgeon 10 days after surgery and i told my dr. that it didn't feel like something was taken out but that something was put in. it feels like its pulling from the inside.
    i found that i really had to pace myself to avoid it hurting too much. but i got up every day showered, dressed. my husband took over the cooking and other housework and laundry for a little while. most important DO NOT LIFT ANYTHING OVER 10 LBS.
    about 11 days after surgery my husband and i went to do a little xmas shopping because it was 12/23. i walked very slowly and was tired after a couple of hours but it felt good to get out.
    they also will tell you not to drive for a few weeks. i was about 4 weeks not driving.
    i have to tell you and don't think its going to happen to you but about 4 weeks after surgery i started alot of discomfort. really sore all around the area where my kidney was. i couldn't figure it out i almost felt like i needed pain meds again. after a few days i called the drs. office afraid that something was wrong but the nurse said that it sounded like normal healing and that maybe i had done too much too soon. i also spoke to a nurse for my insurance carrier and she said the same thing.
    so i started taking it easy again, i had gone back to laundry and other household things, and i started to feel better.
    they cut thru several layers to get to the kidney and manipulate alot in there so its no wonder its sore afterwards.
    i only tell you that so if it happens to you you won't get nervous. but of course always check with your dr. with any concerns.

    my incision was covered with a clear glue. its sewn from the inside with dissolvable stitches. its amazing how they don't cover it with any bandages.
    anyway i did get a little infection on the incision about 3 weeks after. it was very red and oozing. i called the dr. went in to see him. he said it wasn't that bad just healing slowly but did give me antibiotics as a precaution.
    even though they told me not to cover it, i did. i put neosporin on it and covered loosely with a gauze bandage and within a few days it was fine. you don't want it to stay moist, you want it to be dry.

    i don't work so i can't tell you when i felt ready to return to work. but i would say take as much time as you can. i know some people can't stand being home and not working but if you don't take care of yourself now when you've had cancer when are you going to.

    i would say the fatique lasted for a couple months. again if you start to push yourself and do too much you'll know it. even now if i do too much lifting or twisting or even just get fatiqued i can feel it in my stomach. like a soreness and pulling.

    i just went for my 6 mos. check up and my dr. said it was normal to have a bulge there for awhile. he said mine was going down. its kinda like if you've eaten too much and your stomach disstends.

    i have not adjusted my diet. just drink alot of water to keep that kidney flushed. i don't drink hardly ever but i would lighten up on that if you do. and needless to say quit smoking if you do.

    i would say my overall health 7 months after surgery is probably better than before. even though i still get sore sometimes and tired i don't have a cancer growing inside me.
    i do worry about if the cancer comes back in the other kidney or GOD forbid something else should happen, but honestly i just say i'll handle that when it happens. there is no way to plan for that. if i think about that too much i'll go crazy.
    with my breast cancer i had chemo, radiation and i still take daily tamoxifen to lower my risk of recurrence. with this it was just surgery and follow up testing and i do sometimes think why am i not doing more to keep this from coming back but thats the protocol for stage 1. so i just thank GOD that thats what i am and that i don't need anything else.
    the only thing i do differently is i still don't lift anything over like 10-15lbs.

    good luck with your surgery i'm sure you'll be fine and everything will go as planned.
    i'm wishing for you the best possible outcome.
    spend this last week taking it easy and don't worry. just think you'll have the summer off what could be better.
    corey
  • A_New_Journey
    A_New_Journey Member Posts: 9

    Question for Nancy
    Nancy,

    Thanks for you thoughts and prayers and I am glad you are doing well.

    I have a few questions that I would like to know about if you do not mind:
    Did you have an open surgery or laprascopic?
    What kind of prep did you have to do before surgery?
    How old are you and did you have any family history or any other contributing factors that may have caused it? Any theories? I work in the printing/packaging industry and used to run a printing press with solvent based inks(Acetates and alcohols). I haven't been exposed to inks for over three years since I am now a VP at a packaging facility away from the printing world but my family thinks my exposure may have been a factor.

    Did they have to remove the adrenal gland too? My doctor informed me that he is fairly certain it will have to come out also.
    Did you feel strange after the surgery? Like for example did you feel weak with only the one kidney, other than the meds and recovery?
    Do you feel any differnt now since you have had several months to recover. If you compared your overall health to before the surgery how would you score it? Better - Worse?

    My main concern other than the benefit of removal of cancer is the recovery time. I have never been away from work for more than a couple weeks even after two back surgeries. (L4-5 microdiscectomy in 1999 and 2006). With the first back surgery I was laid up for a week and walked it off the second and was back to work the third. The scond surgery recovery was 1 week. I guess I am just rying to figure out how long it will take to feel normal again. I get very paranoid thinking about life with one kidney and the possibility that it may come back in the right kidney later on. I always like to have a plan B in life and I guess in this case it's all about plan A.

    Did you have to adjust your diet and do you do anything differnt now with only one kidney?

    Any advice?

    Thanks for any input you can provide me. My surgery is a little over a week away.

    Regards,

    Will

    Just 4 days until your surgery ...
    Hi Will --

    I am sure you are having a bit of anxiety in anticipation of your surgery, but hopefully you are all prepared, both physically and mentally, and you'll come though this with flying colors.

    Take some comfort that I, along with others on this Discussion Board, will have you in our thoughts next week.

    Please update us as to your progress once you are out of the hospital and feeling better.

    Dave
  • mincemeat
    mincemeat Member Posts: 5

    Just 4 days until your surgery ...
    Hi Will --

    I am sure you are having a bit of anxiety in anticipation of your surgery, but hopefully you are all prepared, both physically and mentally, and you'll come though this with flying colors.

    Take some comfort that I, along with others on this Discussion Board, will have you in our thoughts next week.

    Please update us as to your progress once you are out of the hospital and feeling better.

    Dave

    diagnosis:you have the stomach flu....and a mass above kidney
    Hello Will and others,
    After reading through these posts this all sounds very familiar..amazing.... I was just hit with the news of a mass above my left kidney last week. A fluke that it was even discovered in the first place. It all started I think from eating unwashed cherries with a tough guy attitude, Abdominal pain hit so fast and furious two days later at midnight I didnt know what to think,hot/cold hot/cold, lost my cookies several times to the porcelain goddess, pepto bismal, milk, water, laying down on the living room floor with the ac on high didnt do anything except for maybe getting a mild case of frostbite and hypothermia ( not recommended). At 5:00 AM I finally decided forget it I am going in to the doc and seek some pain meds.

    Pain meds and a couple of bags of hydrating ivs were administered and walla! instant relief, groggy content and tired all at the same time I felt much better. The Dr. suggested and approved a ct scan for a possible appendicitis problem, and came back with: "the good news is you have the stomach flu, the bad news is there is a mass above your left kidney"....What!!

    I am a 44 year old male, no smoking or heavy drinking, sex drugs or rock & roll how could this be? ( just a little exaggeration)

    Absolutely no symptoms( except for bouts of alopecia spots over the last ten years since tumors produce hormones I now suspect a possible connection),flight physical every year. Now I am in the stage of the great unknown.
    I was recommended to another hospital and met with a Dr. in this field. After giving him the ct scan disc for review he said there is about a 6cm mass not attached to the kidney and could probably be removed by laprascopy? They are still doing the blood and urine testing so I will know more later this week.

    I hope your surgery turns out alright and you make a fast and functional recovery.
  • donna_lee
    donna_lee Member Posts: 1,023 Member
    mincemeat said:

    diagnosis:you have the stomach flu....and a mass above kidney
    Hello Will and others,
    After reading through these posts this all sounds very familiar..amazing.... I was just hit with the news of a mass above my left kidney last week. A fluke that it was even discovered in the first place. It all started I think from eating unwashed cherries with a tough guy attitude, Abdominal pain hit so fast and furious two days later at midnight I didnt know what to think,hot/cold hot/cold, lost my cookies several times to the porcelain goddess, pepto bismal, milk, water, laying down on the living room floor with the ac on high didnt do anything except for maybe getting a mild case of frostbite and hypothermia ( not recommended). At 5:00 AM I finally decided forget it I am going in to the doc and seek some pain meds.

    Pain meds and a couple of bags of hydrating ivs were administered and walla! instant relief, groggy content and tired all at the same time I felt much better. The Dr. suggested and approved a ct scan for a possible appendicitis problem, and came back with: "the good news is you have the stomach flu, the bad news is there is a mass above your left kidney"....What!!

    I am a 44 year old male, no smoking or heavy drinking, sex drugs or rock & roll how could this be? ( just a little exaggeration)

    Absolutely no symptoms( except for bouts of alopecia spots over the last ten years since tumors produce hormones I now suspect a possible connection),flight physical every year. Now I am in the stage of the great unknown.
    I was recommended to another hospital and met with a Dr. in this field. After giving him the ct scan disc for review he said there is about a 6cm mass not attached to the kidney and could probably be removed by laprascopy? They are still doing the blood and urine testing so I will know more later this week.

    I hope your surgery turns out alright and you make a fast and functional recovery.

    Good Luck Will
    Tomorrow is the start of your new life. You get to celebrate an additional birthday each year from now on. Hope the surgery goes well.
    Since mine had already mets to liver and nodes, the first surgery left a 14" line and lots of sore muscles and organs. The kidney removal was quite unremarkable and the easiest part of the surgery. I'm 66 and still need to watch cholesterol and bp, but meds keep it under control. You'll learn to interpret CBC and CMP test results. The internet can supply you with definitions for everything and normal ranges for sex/age (unless lab printout doesn't show previous results and normal range.)
    I recently came across something I had written down that year. I had started back to work a couple of hours/day by 4 weeks out. But we own the business and I had the freedom to work part time to begin with.
    We'll be watching for your next post after you are home. Good Luck.

    And hey, Mincemeat...what a choice of name. Sorry about cancer; Good you made yourself sick eating cherries. I have no idea how long mine had been growing and metastasizing. Your's was caught early. Don't hesitate to ask questions on this board. We're here to help and support you.
    Donna
  • WilSchretz
    WilSchretz Member Posts: 16
    donna_lee said:

    Good Luck Will
    Tomorrow is the start of your new life. You get to celebrate an additional birthday each year from now on. Hope the surgery goes well.
    Since mine had already mets to liver and nodes, the first surgery left a 14" line and lots of sore muscles and organs. The kidney removal was quite unremarkable and the easiest part of the surgery. I'm 66 and still need to watch cholesterol and bp, but meds keep it under control. You'll learn to interpret CBC and CMP test results. The internet can supply you with definitions for everything and normal ranges for sex/age (unless lab printout doesn't show previous results and normal range.)
    I recently came across something I had written down that year. I had started back to work a couple of hours/day by 4 weeks out. But we own the business and I had the freedom to work part time to begin with.
    We'll be watching for your next post after you are home. Good Luck.

    And hey, Mincemeat...what a choice of name. Sorry about cancer; Good you made yourself sick eating cherries. I have no idea how long mine had been growing and metastasizing. Your's was caught early. Don't hesitate to ask questions on this board. We're here to help and support you.
    Donna

    Care Pages
    Hello all and thanks for the good thoughts.

    I am about 14 hours away from surgery and am drinking the purge liquids to clean me out.
    I have setup a web page that will provide a status of my surgery and recovery.

    www.carepages.com/carepages/wilschretz

    You have to register but it's simple. For all of us that are going through recovery or surgery I think this is a great way to communicate with family and friends. I even put a pic of my scan up so you can compare it to yours. My wife who has been spectacular through all of this will update it as we go. I feel good and am ready to get this thing out of me.
    I hope to be making another post here in a couple days.

    Mincemeat: It sucks that we have what we have but thank god we found it when we did. Do your homework, check online for info, talk to doctors and do the best thing for you.

    It sounds like you and I have a very similar story and I will certainly provide what info I can to you during your journey.

    Thanks again to all and I will chat with you soon..................
  • Chopper69
    Chopper69 Member Posts: 1
    Good luck Will
    Will

    Your story is eerily similar to mine. Just diagnosed last week with a 2cm mass (I prefer that word to cancer) in my right kidney after a month of abdominal discomfort. My initial consultation with the urologist pointed to removal of the right kidney. I'm sure you'll agree that this is not what you want or expect to hear. Luckily for me this urologist does not perform surgery and he referred me to his partner. I had my appointment with him today and he has scheduled me for cryotherapy, a relatively new procedure (at least for RCC) that he believes will destroy the mass in my kidney. Hope your surgery went well and keep a positive attitude, We're both lucky that our bodies told us something was wrong and I'm sure we've got a long and healthy life ahead of us.
    Gary