Recently Diagnosed?

Mimir
Mimir Member Posts: 25
I stumbled across this board by chance while searching the web for information about kidney masses. About two week ago I was feeling perfectly fine, but I started peeing blood. After being poked and prodded by doctors, I was scheduled to have a CT scan. The next day, two weeks after I started peeing blood, the doctor sat me down and told me I had a large tumor in my left kidney. I ended up asking almost no questions because I was so stunned. I just nodded when he told me "You needed to have this taken care of." I'm seeing two other doctors when I go home for winter break after I finish finals (I am a college freshman). I feel like my parents, who I have talked to a lot, and the doctors are not really being honest with me. I understand they don't want to worry me, but I feel like I have the right to know what is going on.

While I understand that you guys are not doctors and haven't seen my test, what are the chances my 7.1 by 7.0 cm tumor is cancer?

Regardless of what happens, I will need to get surgery to remove the tumor. Do people have any advice on how to recover from surgery?

I'm finding it really difficult to talk to my friends about what is going on because on the outside everything seems exactly the same. Everyone is saying I'm going to be perfectly fine because the the CT showed the so far the tumor has not spread at all. None of my friends I have talked to really understand how serious this potentially could be and I don't want to tell them morbid stories.

Thank you in advance for responding.
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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Priorities
    Unfortunately, it sounds likely that you have kidney cancer, despite your tender years. It is serious but not the end of your world. It's understandable that your Family wouldn't want you worried sick at exam time but you do have every right to know the score and to participate in deciding on your best course of action. The size of the tumour is such that fairly swift action is desirable to optimise the odds that surgery will be all that's needed to cure you. A long delay (e.g. months) would be a bad idea since it could change the current good situation that the tumour is confined to your kidney.

    In the meantime, reading the very long thread on "Recovering from radical nephrectomy" would give you a fast start on understanding what it's all about. Once you have had the surgery you will probably want to ask lots of specific questions which everyone here will be happy to try to answer helpfully.

    Sorry you've had this experience - tough at any age but a real shock at yours. However, with youth on your side your prospects are good. We're all sorry you have to join us but will do all we can to welcome you and assure you you're now among friends who know pretty well what you're going through.
  • icemantoo
    icemantoo Member Posts: 3,361 Member

    Priorities
    Unfortunately, it sounds likely that you have kidney cancer, despite your tender years. It is serious but not the end of your world. It's understandable that your Family wouldn't want you worried sick at exam time but you do have every right to know the score and to participate in deciding on your best course of action. The size of the tumour is such that fairly swift action is desirable to optimise the odds that surgery will be all that's needed to cure you. A long delay (e.g. months) would be a bad idea since it could change the current good situation that the tumour is confined to your kidney.

    In the meantime, reading the very long thread on "Recovering from radical nephrectomy" would give you a fast start on understanding what it's all about. Once you have had the surgery you will probably want to ask lots of specific questions which everyone here will be happy to try to answer helpfully.

    Sorry you've had this experience - tough at any age but a real shock at yours. However, with youth on your side your prospects are good. We're all sorry you have to join us but will do all we can to welcome you and assure you you're now among friends who know pretty well what you're going through.

    Not Fun
    Mimir,

    Not fun being told you have Kidney Cancer and than major surgery right out of the gate. It sure was not fun for me when I was told this 10 and 1/2 years ago. The surgery sucks. Unless you are the exception rather than the rule it is Kidney Cancer. So What. Most of us who have had the surgery can tell people they had cancer, not that they have it. Usually with tumors 4 cm or less there is close to a 100% chance of a full recovery from the surgery alone. At 7cm there may be a small chance of recurrance down the road. Many on this post are doing fine with tumors starting out larger than yours.

    With that being said get it out ASAP. If seeing a doctor at home over winter break means 2 months from now get this taken care of sooner than that even if it messes with your finals. The one thing worse than a 7 cm tumor is that it grows and spreads and that is serious stuff. As Tex says take swift action now.

    Once you get the surgery scheduled we can help you with it. Kidney Cancer is only 3% of all Cancers and the level of puplic understanding about it is very low so it may be hard to talk with others about it.

    If this than 59 year old who is scared about having his blood drawn can get thru the surgery anybody can. Things do get better.

    Icemantoo
  • Mimir
    Mimir Member Posts: 25
    icemantoo said:

    Not Fun
    Mimir,

    Not fun being told you have Kidney Cancer and than major surgery right out of the gate. It sure was not fun for me when I was told this 10 and 1/2 years ago. The surgery sucks. Unless you are the exception rather than the rule it is Kidney Cancer. So What. Most of us who have had the surgery can tell people they had cancer, not that they have it. Usually with tumors 4 cm or less there is close to a 100% chance of a full recovery from the surgery alone. At 7cm there may be a small chance of recurrance down the road. Many on this post are doing fine with tumors starting out larger than yours.

    With that being said get it out ASAP. If seeing a doctor at home over winter break means 2 months from now get this taken care of sooner than that even if it messes with your finals. The one thing worse than a 7 cm tumor is that it grows and spreads and that is serious stuff. As Tex says take swift action now.

    Once you get the surgery scheduled we can help you with it. Kidney Cancer is only 3% of all Cancers and the level of puplic understanding about it is very low so it may be hard to talk with others about it.

    If this than 59 year old who is scared about having his blood drawn can get thru the surgery anybody can. Things do get better.

    Icemantoo

    Timeline
    I already have appointments with two doctors for next week. I was hoping to get the surgery the first week of January so that I could minimize the amount of school I will miss. Do you think this is moving too quickly?

    Also, thank you Tex and Icemantoo for your responses, they really helped a lot.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Mimir said:

    Timeline
    I already have appointments with two doctors for next week. I was hoping to get the surgery the first week of January so that I could minimize the amount of school I will miss. Do you think this is moving too quickly?

    Also, thank you Tex and Icemantoo for your responses, they really helped a lot.

    You are not moving too quickly
    Mimir,

    Good to see you are taking care of it now. You are going to have some downtime after the surgery. While you may feel like going back to school 3 or 4 weeks after the surgery, you will not feel like putting in an 8 hour day of school and homework for a month or 2. Take it easy after the surgery, See if you can get the administration and teachers to cut you some slack for the month or 2 after surgery.

    Icemantoo
  • therapture
    therapture Member Posts: 25
    your life can become a blur
    Hi mimir...

    Like you, I was diagnosed out of the blue after a sudden onset of urine in the blood and soon followed by pain as the kidney filled up and was blocked with blood and blood clots. This was just on 11-27-12, through a big mess of two ER visits for pain and bleeding, becoming dehydrated from blood loss, etc., I was able to have hand assisted laporoscopic surgery on 12-4, yep, just 11 days ago! This surgery DOES suck, especially given that you most likely have cancer, as others noted, it's not likely it's benign. In my case I had a 7.3cm tumor that was pathologied to be a Stage 2 Grade 3 clear cell carcinoma, one of the most common kidney cancers, but also one of the best prognosis' for recovery and low chance of recurrence.

    So what, this cancer, is one of the most easily cured when caught in time via nephrectomy. Your tumor, like mine, is 7+ cm, and needs to be moved on as fast as you can get a doc to get it out. TRY your best to get a doc that can do the surgery laporoscopically! It will speed your recovery time by a large amount. I was able to be walking within 12 hours of the surgery (slowly haha) on Wednesday, and by Friday I was on my way home and I have used zero painkillers since I left the hospital. That means I was at home just 48 hours after the surgery! It seems you are young, and that will help alot. If you are in good physical shape, that will help even more. I am 42 but I am/was/will be an active runner. I still am recovering but I can get out of bed myself, etc., walk for extended periods of time, and I actually did go back to work 6 days after the surgery, although I was mostly at a computer, and I only worked for 4-5 hours at a time with some small breaks, then I went home and napped a bit.

    Don't be too physical, let the healing come, but don't be lazy about recovery either. Listen to your body and it's pains, you are going to be very good at it soon. Use your pain meds as needed in the beginning right after surgery, but wean yourself as fast as your condition permits. I was ultra constipated as apparently, I am a poster child for medicinal side effects. Getting off the meds faster will help cure this condition which can be painful in itself. I even gave myself my own suppositories! Colace, an over the counter medication, can be very helpful once you are home, as it brings water to your intestines to help soften things up and moving, it will be VERY hard to "push" 5-10 days after your surgery. If you have allergies, take an over the counter Zirtec every morning to try and stop and sneezing, it will F you up if you sneeze during that first week of surgery. Also sitting upright will help ease any coughing, and you WILL have to soon after surgery to clear your airway and lungs of fluid buildup. USE that little breath sucking device they give you in the hospital several times a day, it WILL help expand your lungs and bring up the small amounts of fluid up easier. Use a pillow pressed against your stomach area to help control expansion when you cough. It will be tough but as you can see, we all made it through!

    Icemantoo noted the long thread "recovering from radical nephrectomy" and he's right, read the whole thing, my experience is in there towards the bottom. It's chock full of info both from a medical standpoint and a "living with cancer" standpoint. Your age, and the age of your friends, plays a part in your mental experience. People that have never had direct experience with cancer have a hard time understanding the impact and enormity of what it really means. Age tempers that somewhat with the simple fact we older folks have lived longer, seen more, done more, etc., but hey, it's OK to cry, let out that negative emotion and then get on with having an aggressive position about beating this cancer. You CAN beat it, it is NOT the end of the world, and your vernacular is going to expand quite a bit with a ton of information and knowledge coming your way.

    In my case, I told my family and good friends immediately, and told my 8 and 13 year old children within 3 days of my diagnosis. I used facebook and mass texting as a sounding board and method to tell all my friends information without tons of phone calls.

    Trust me, you are going to be fine, but get that mass out as soon as you can. Don't accept long waits of you don't have to, the bleeding indicates a faster than normal surgery as it can become problematic especially if it starts the copious amount of pain that a blocked kidney can deliver. I had femur surgery 8 years ago from a motocross crash, and this pain put a butt whipping on that experience.

    You have now entered a totally new life experience, with some new emotions you have probably never felt before coming your way. Use this board as a tool to whine/cry/whatever. Don't hold anything back, and go on living. If you want to talk to one of us that has had kidney cancer, some here are even willing to talk on phone or private discuss via email, me included, just email or private message us for contact info. My email is (take out the spaces and *'s) the*raptur @ gmail**.com

    Be sure and update us as things develop, I will be looking forward to hearing your updates. As a newly diagnosed and post surgery subject, I am most interested in your case.
  • MedScanMan
    MedScanMan Member Posts: 107
    My Two Cents
    I think if you superimposed all the responses to your post on top of each other, you'd see three words shining through.... "Get It Out". Winter break, Finals, School in general can all wait. If this mass lit up on your CT scan you need a surgical consult ASAP. Find yourself a good Urology/Oncologist and get it done. Is there any way you can type here, the very bottom of your CT report? It's labeled Impression. Usually about four or five sentences. If you can do that we could sure help you know what's happening. You're going to be fine. If all that is showing is a 7cm mass on your left kidney and the rest of the report is negative your only job is to have it taken care of and recuperate. Surely you can see finals can wait.

    Jeff
  • Mimir
    Mimir Member Posts: 25

    My Two Cents
    I think if you superimposed all the responses to your post on top of each other, you'd see three words shining through.... "Get It Out". Winter break, Finals, School in general can all wait. If this mass lit up on your CT scan you need a surgical consult ASAP. Find yourself a good Urology/Oncologist and get it done. Is there any way you can type here, the very bottom of your CT report? It's labeled Impression. Usually about four or five sentences. If you can do that we could sure help you know what's happening. You're going to be fine. If all that is showing is a 7cm mass on your left kidney and the rest of the report is negative your only job is to have it taken care of and recuperate. Surely you can see finals can wait.

    Jeff

    CT
    Thanks for the input.

    The "Conclusion" of my CT is: Large minimally vascular tumor mass in the left kidney with patency of the renal veins and no evidence of any significant lymphadenopathy. There are pericapsular prominent veins. Bilateral duplication of the collecting systems.

    Looking at the CT, the tumor appears as a big solid black splotch.

    I am in good physical condition so I hope my recovery will be swift.

    I understand that finals take a backseat to cancer, but I ended up getting appointments after finals were finished. I think I just wanted to whine about dealing with finals and learning I have cancer at the same time.
  • DMike
    DMike Member Posts: 259
    Kidney Cancer Association Book
    Mimir,

    You've received great advice from everyone. Here's a link to a free downloadable PDF book by the Kidney Caner Association that will provide more information. It's called "We Have Kidney Cancer." It really helped me understand kidney cancer as I began my journey a year ago.

    I'll be thinking about you and wish you the best. Feel free to ask questions here.

    http://www.kidneycancer.org/index.php/component/content/article/216

    --David
  • MedScanMan
    MedScanMan Member Posts: 107
    Mimir said:

    CT
    Thanks for the input.

    The "Conclusion" of my CT is: Large minimally vascular tumor mass in the left kidney with patency of the renal veins and no evidence of any significant lymphadenopathy. There are pericapsular prominent veins. Bilateral duplication of the collecting systems.

    Looking at the CT, the tumor appears as a big solid black splotch.

    I am in good physical condition so I hope my recovery will be swift.

    I understand that finals take a backseat to cancer, but I ended up getting appointments after finals were finished. I think I just wanted to whine about dealing with finals and learning I have cancer at the same time.

    Well
    There is a bit more going on here other than your renal mass. A double collecting system either single or bilateral is an abnormality you were born with. Some people have this duplication from the renal pelvis (center of the kidney) all the way down to the bladder. Some have the ureters split apart further down. It would mean you have two ureters on each side instead of one. The ureter is what carries the urine from the kidneys to the bladder. I've seen many of these in my 30 years of scanning and some say it's just a congenital anomaly. Having it on both sides is a little unusual. I did a little research just now and found a few places online that state that Transitional Cell Carcinoma is sometimes reported in patients with duplicate collecting systems. Please remember I am not a physician and I am not giving you any medical advise here.....but some friendly advice would be not to wait on this. Please keep us informed. The fact that you have no significant adenopathy is a great thing. By getting this out quickly, you'll hopefully keep it that way.
  • Mimir
    Mimir Member Posts: 25
    Update
    I saw my first round of Doctors today. While they basically confirmed what most of you said about it being cancer, some interesting things came up. Due to my age (18) and that I have none of the risk factors, they think there is a possibility that it is a Wilms tumor. The doctor I saw said that Wilms tumors are responsive to chemo. They suggested I get a biopsy of the tumor because if it is a Wilms they want to try and shrink and or eliminate it with only chemo. The doctor wants to save as much as my kidney as possible. If it is RCC they would almost 100% have to remove the entire kidney because the tumor has basically cut my kidney in half.

    Tomorrow I am going to NIH to meet with other doctors and see what they have to say.
  • dhs1963
    dhs1963 Member Posts: 513
    Mimir said:

    Update
    I saw my first round of Doctors today. While they basically confirmed what most of you said about it being cancer, some interesting things came up. Due to my age (18) and that I have none of the risk factors, they think there is a possibility that it is a Wilms tumor. The doctor I saw said that Wilms tumors are responsive to chemo. They suggested I get a biopsy of the tumor because if it is a Wilms they want to try and shrink and or eliminate it with only chemo. The doctor wants to save as much as my kidney as possible. If it is RCC they would almost 100% have to remove the entire kidney because the tumor has basically cut my kidney in half.

    Tomorrow I am going to NIH to meet with other doctors and see what they have to say.

    National Institute for Health is great
    I just had a workup yesterday and today for familial kidney cancer. My news was not great (they found a probably met.), but the staff there took the time to understand and seemed interested in me. I wish you luck. I take it you are in the DC area? If so, I would like to know who you DR's are. I am over in Northern Virginia. My surgeon is Dr. Todd Tescher, but he knew nothing about familial cancer.

    Familial means that it is inherited. My Dad's dad died for RCC, my dad has it, and I have it. There thinking is, if they can figure out what happens with us, why we get it, they may be able to figure out all cases. Definitely good use of our tax dollars.
  • Mimir
    Mimir Member Posts: 25
    dhs1963 said:

    National Institute for Health is great
    I just had a workup yesterday and today for familial kidney cancer. My news was not great (they found a probably met.), but the staff there took the time to understand and seemed interested in me. I wish you luck. I take it you are in the DC area? If so, I would like to know who you DR's are. I am over in Northern Virginia. My surgeon is Dr. Todd Tescher, but he knew nothing about familial cancer.

    Familial means that it is inherited. My Dad's dad died for RCC, my dad has it, and I have it. There thinking is, if they can figure out what happens with us, why we get it, they may be able to figure out all cases. Definitely good use of our tax dollars.

    DC Area
    I haven't been to NIH yet (I am going tomorrow) and I only got the appointment because my pediatrician knew someone who knew someone who passed my report on. NIH was interested, I guess because of my age, so they emailed me asking me to come in. I'm not sure 100% what doctor I am seeing but they have a specific team for Urology Oncology http://ccr.cancer.gov/labs/lab.asp?labid=92 . I guess I would try to email the head of the program and explain your situation and see if he is interested.

    The doctor I already saw was with GW Medical Faculty associates. I saw Doctor Harold Frazier who does a ton of laparoscopic surgeries and seemed very knowledgeable about new research on RCC. I am told his colleague Doctor Thomas Jarrett is also just as well versed . Both of those guys said they know the team at NIH and have some contact with them.

    Good Luck, I hope you and your dad get better.
  • todd121
    todd121 Member Posts: 1,448 Member
    I'm also recently diagnosed. A week before Thanksgiving I had the bleeding and pain and at the ER they found a 6.7cm mass in my right kidney. On 12/10 (last Monday) I had my right kidney removed. I pushed the doctor to get the thing out fast. I'm home recovering now.

    There were a couple of other small anomalies on my CT scan, but it appears to be confined to the kidney. I'm thankful for that. I don't have my pathology report back yet, so I still don't have a definite staging/diagnosis.

    My surgery was done laproscopically, but like you, my tumor is in the middle of my kidney so they had to take the entire kidney out intact. That meant a large incision to remove it.

    My recovery has been pretty much ok. The surgery was last Monday afternoon. On Wednesday afternoon I got to go home. I've been recovering pretty well.

    This is hard to talk about. I'm having trouble discussing it with colleagues at work. I didn't know much about this a month ago, and now I know way more than I had ever wanted to learn.

    I wish you the best. I hope they move quickly. I'm sure they will.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    todd121 said:

    I'm also recently diagnosed. A week before Thanksgiving I had the bleeding and pain and at the ER they found a 6.7cm mass in my right kidney. On 12/10 (last Monday) I had my right kidney removed. I pushed the doctor to get the thing out fast. I'm home recovering now.

    There were a couple of other small anomalies on my CT scan, but it appears to be confined to the kidney. I'm thankful for that. I don't have my pathology report back yet, so I still don't have a definite staging/diagnosis.

    My surgery was done laproscopically, but like you, my tumor is in the middle of my kidney so they had to take the entire kidney out intact. That meant a large incision to remove it.

    My recovery has been pretty much ok. The surgery was last Monday afternoon. On Wednesday afternoon I got to go home. I've been recovering pretty well.

    This is hard to talk about. I'm having trouble discussing it with colleagues at work. I didn't know much about this a month ago, and now I know way more than I had ever wanted to learn.

    I wish you the best. I hope they move quickly. I'm sure they will.

    Welcome
    Todd,

    Welcome to our club which nobody asked to join. Nobody enjoys the surgery. But you are hopefully on the road to a full recovery. There is a lot of knowledge on these boards. From reading the varius posts you should be able to get a handle on where you have been and where you are going. Nobody elses experience is axactly like yours. The next 10 days are going to be a lot easier than the last 10 days, While you may feel like doing things and getting back to work rest a little. In a month or 2 you should be able to do everything you did before, but no extreme stuff.

    Other people have a hard time understanfding Kidney Cancer. They think in terms of chemo and your hair falling out. Not so for Kidney Cancer where you start out with this not so fun surgery.

    May the surgery turn out to be your cure.

    Icemantoo
  • Mimir
    Mimir Member Posts: 25
    dhs1963 said:

    National Institute for Health is great
    I just had a workup yesterday and today for familial kidney cancer. My news was not great (they found a probably met.), but the staff there took the time to understand and seemed interested in me. I wish you luck. I take it you are in the DC area? If so, I would like to know who you DR's are. I am over in Northern Virginia. My surgeon is Dr. Todd Tescher, but he knew nothing about familial cancer.

    Familial means that it is inherited. My Dad's dad died for RCC, my dad has it, and I have it. There thinking is, if they can figure out what happens with us, why we get it, they may be able to figure out all cases. Definitely good use of our tax dollars.

    Sorry
    I grossly misread your post-sorry! After finishing up at NIH I agree they are awesome. I met with Dr. Metwalli and Dr. Linehan. They where both really nice and are both incredibly knowledgeable. Dr. Linehan is the pioneer in kidney cancer. The only slightly annoying thing is all the tests I have to get done that might not be done other places. But I would rather them be thorough.
  • dhs1963
    dhs1963 Member Posts: 513
    Mimir said:

    Sorry
    I grossly misread your post-sorry! After finishing up at NIH I agree they are awesome. I met with Dr. Metwalli and Dr. Linehan. They where both really nice and are both incredibly knowledgeable. Dr. Linehan is the pioneer in kidney cancer. The only slightly annoying thing is all the tests I have to get done that might not be done other places. But I would rather them be thorough.

    I go back to NIH for more testing on Friday.
    For me the issue is what is the lung spot. Dr. Lineham is very interested in my family. My father and I went in together. We were there on the 19th and 20th. Perhaps you saw me. I was a middle age guy with brown hair and scraggly looking beard. I was probably wearing a washington nationals jacket.

    The tests may seem annoying, but they help NIH understand the disease and improve your outcome.

    I do not know your surgical schedule, but am confident that you will need to take it easy the first part of the spring semester. See if you can get a temporary handicap parking permit, so you can park closer. I know for me, I missed 8 weeks of work. And my job requires no real activity (I am a research scientist, but do all my work on the computer). If you are like me, you will not be able to lift your book-bag/backpack for 6 weeks after surgery. Plan on being limited.

    I wish you the best. It might be advisable to take the spring semester off....you will be limited the first few weeks of the semester, and you may not have the energy to recover from that. This is serious stuff.

    If you want a "local" to talk to, feel free to email me.

    Good luck!

    David
  • Mimir
    Mimir Member Posts: 25
    Update

    It has been almost 3 weeks since I had a radical nephrectomy. Recovery is going pretty well. I am back at school and while I get tired much more easily, I am able to manage. I'm still waiting on the results of my pathology. So far the doctors say the tumor is "descriptive" or has features of  many diffrent subtypes of kidney cancer. I'm still sort of worried about the patholoy report, so I try not to think about it. I'm having genetic testing done to test for a couple of hereditary conditions. Hopefully I will get some good news. In March I go back for scans and genetic test reuslts.

    Thanks to everyone on this board who helped me.

  • icemantoo
    icemantoo Member Posts: 3,361 Member

    mimir,

     

    The one thing you have going for you is your age. Your recovery should be much easier than us old guys who had our surgery in our 50's and 60's. I had just turned 59.

     

    When my daughter was 23 she had major surgery unrelated to RCC , 2 weeks before her second year of law schoo; started. Those first few weeks were tough for her and I think she got a faculty parking pass. Do make your school administration aware that you just had major surgery and that you are going to be on the mend for the first month or so. Not that you won't be able to give everthing they throw at you, just that you may not be able to do it 12 hours a day.

     

    The other difficulty is that it is going to be hard for your peers to understand a cancer diagnosis at your age. Hopefully yu will be able to tell people that you had cancer, not that you have it.

     

    Things will get a little better each day. Trust me.

     

    Icemantoo

     

    Ic

  • Copado
    Copado Member Posts: 4
    Chances are 90% it is a

    Chances are 90% it is a Kidney Cancer 10% are benign. You may want to talk to your uro-oncologist about the type of  the cancer Cells and the nuclear grade of the cancer.Good luck with this, the waiting is always so grueling! 

  • Mimir
    Mimir Member Posts: 25
    Pathology

    8 weeks after surgery, I finally got my pathology report. I was told that I have  mainly chromophobe RCC which is apperently really rare for someone as young as I am. The pathologist at NIH had only ever seen 2 other cases similar to mine. The bad news is that it  is high grade and they discovered that tumor had grown into a vein (though not a large vein). Even though the chromophobe seems more aggressive than normal, there is no evidence of sarcomatoid features.  I will have scans every three months for the next couple of years to be watched closley.