Recovering from radical nephrectomy

wendyleigh
wendyleigh Member Posts: 9
edited March 2014 in Kidney Cancer #1
I had a radical nephrectomy on May 06, 2009. I had renal cell carcinoma on my right kidney. The tumor was 7cm. My body is still not back to normal and I feel like I should be doing a little better than I am. I still find it very difficult to wear pants. I also feel like a lot of people think well she had the surgery to take out the kidney and the cancer is gone so she is fine now and it is all over with. Problem is I don't feel that way. Everything happened so fast. I am worried it will come back somewhere else. Does anybody else feel this way?
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Comments

  • 1luckyman
    1luckyman Member Posts: 1
    i had the same done on april
    i had the same done on april 7, yes everything was very fast. i did have the same thoughts about it coming back. my doctor was very encouraged that we got it early and it did not spread. he told me i had a 90% chance i would be cancer free 5 years from now. i was lucky i healed quickly but it could take a few more weeks for you to heal. you will be back in pants very soon.
    live your life to the fullest, you just got several years added on
  • wendyleigh
    wendyleigh Member Posts: 9
    1luckyman said:

    i had the same done on april
    i had the same done on april 7, yes everything was very fast. i did have the same thoughts about it coming back. my doctor was very encouraged that we got it early and it did not spread. he told me i had a 90% chance i would be cancer free 5 years from now. i was lucky i healed quickly but it could take a few more weeks for you to heal. you will be back in pants very soon.
    live your life to the fullest, you just got several years added on

    My doctor said the same
    My doctor said the same thing; 90%. I am very fortunate they found it early and it was contained in the kidney. Thank you for your support. I am looking forward to a great summer.
  • donna_lee
    donna_lee Member Posts: 1,023 Member

    My doctor said the same
    My doctor said the same thing; 90%. I am very fortunate they found it early and it was contained in the kidney. Thank you for your support. I am looking forward to a great summer.

    Give yourself time. The body takes a while to adjust to one kidney. The other one has to process lots of fluid, the liver slows down. You had anesthesia and the body takes time to get over that, too.
    I had RCC-radical nephrectomy 3 years ago. People who ask how you are doing really do mean well; but are coming from a different point of view. They want to hear that you are doing well, recovering, and all the other stuff that makes them feel warm and fuzzy.
    If you can find a cancer survivors support group -even on line here- it can help. They know what you've been thru and can offer encouragement.
    Hang in there and good luck.
    Donna
  • wendyleigh
    wendyleigh Member Posts: 9
    donna_lee said:

    Give yourself time. The body takes a while to adjust to one kidney. The other one has to process lots of fluid, the liver slows down. You had anesthesia and the body takes time to get over that, too.
    I had RCC-radical nephrectomy 3 years ago. People who ask how you are doing really do mean well; but are coming from a different point of view. They want to hear that you are doing well, recovering, and all the other stuff that makes them feel warm and fuzzy.
    If you can find a cancer survivors support group -even on line here- it can help. They know what you've been thru and can offer encouragement.
    Hang in there and good luck.
    Donna

    Thank you so much for your encouragement. I have read some of your other postings and can tell you have been through a lot. I am so glad you don't have to have another surgery and can enjoy your summer!
  • A_New_Journey
    A_New_Journey Member Posts: 9
    I too, recently had a radical nephrectomey
    Hi wendyleigh -

    I was 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.

    My Urologist and 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 right 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 scars where they inserted the small tools and a camera and one incision scar where he removed the tumor, kidney and ureter. The initial plan was for the this incision was 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 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.

    After surgery, the pathology report showed the size of the tumor was 9.0 x 6.5 x 6.o cm. My cancer was determined to be Stage IIIa. The pathologist's report also showed that my cancer was not fully confined to the kidney and ureter. 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.

    I hope this information helps you (and others who may read this) to make a comparison to your ordeal wendyleigh. 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 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 and all others in our unique "club".
  • wendyleigh
    wendyleigh Member Posts: 9

    I too, recently had a radical nephrectomey
    Hi wendyleigh -

    I was 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.

    My Urologist and 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 right 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 scars where they inserted the small tools and a camera and one incision scar where he removed the tumor, kidney and ureter. The initial plan was for the this incision was 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 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.

    After surgery, the pathology report showed the size of the tumor was 9.0 x 6.5 x 6.o cm. My cancer was determined to be Stage IIIa. The pathologist's report also showed that my cancer was not fully confined to the kidney and ureter. 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.

    I hope this information helps you (and others who may read this) to make a comparison to your ordeal wendyleigh. 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 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 and all others in our unique "club".

    I wish you all the best with
    I wish you all the best with your chemotherapy. I thank God everyday that my cancer was contained to the kidney.
  • LisaJo
    LisaJo Member Posts: 13

    I wish you all the best with
    I wish you all the best with your chemotherapy. I thank God everyday that my cancer was contained to the kidney.

    I'm With You guys!
    Hey I had my right kidney removed 5 years ago in August. They said it was all contained but still I hold my breath with every CT scan. This July I will have an MRI and Chest X ray. I feel like I'm over the hump but every once in a while I get a little freaked out wondering if it in manifesting somewhere else........Only to be an incidental finding like the first one was.......I was only 47 when a hysterectomy lead me down this path....I really think that sometimes we all need a good awakening to really realize how lucky we are and how each day is special! Now I'm wide awake!

    Live, Love and Laugh!

    Lisa
  • corey50
    corey50 Member Posts: 111
    LisaJo said:

    I'm With You guys!
    Hey I had my right kidney removed 5 years ago in August. They said it was all contained but still I hold my breath with every CT scan. This July I will have an MRI and Chest X ray. I feel like I'm over the hump but every once in a while I get a little freaked out wondering if it in manifesting somewhere else........Only to be an incidental finding like the first one was.......I was only 47 when a hysterectomy lead me down this path....I really think that sometimes we all need a good awakening to really realize how lucky we are and how each day is special! Now I'm wide awake!

    Live, Love and Laugh!

    Lisa

    LisaJo
    congratulations on five years cancer free. that must feel good.
    do you mind if i ask is there a reason you switched from ct scans to an mri. and has your dr. always done a chest xray instead of ct scan of chest.
    thanks for the info. i'm just 6 mos. from surgery. just had my first scans (chest and abdomen and pelvis)and everything was good. thank God.
    mine was also found on an ultrasound of my ovaries.
    continued good health to us all.
    corey
  • wendyleigh
    wendyleigh Member Posts: 9
    LisaJo said:

    I'm With You guys!
    Hey I had my right kidney removed 5 years ago in August. They said it was all contained but still I hold my breath with every CT scan. This July I will have an MRI and Chest X ray. I feel like I'm over the hump but every once in a while I get a little freaked out wondering if it in manifesting somewhere else........Only to be an incidental finding like the first one was.......I was only 47 when a hysterectomy lead me down this path....I really think that sometimes we all need a good awakening to really realize how lucky we are and how each day is special! Now I'm wide awake!

    Live, Love and Laugh!

    Lisa

    Five years is awesome,
    Five years is awesome, congratulations! Maybe you could answer a question for me. Is it important to have an oncologist? My urologist has been handling everthing. He never advised me to see a oncologist. He sent me for several CT scans and a colonscopy before the nephrectomy to make sure it wasn't anywhere else. Post surgery he said I need a chest X ray in October and a CT scan one year from the surgery date. Does that seem correct?
  • lily33
    lily33 Member Posts: 27

    Five years is awesome,
    Five years is awesome, congratulations! Maybe you could answer a question for me. Is it important to have an oncologist? My urologist has been handling everthing. He never advised me to see a oncologist. He sent me for several CT scans and a colonscopy before the nephrectomy to make sure it wasn't anywhere else. Post surgery he said I need a chest X ray in October and a CT scan one year from the surgery date. Does that seem correct?

    Seems correct
    wendyleigh,

    My husband's urologist handled all the scans before surgery. He walked us through everything and performed the operation. The tumor and my husband's kidney were removed and we received the pathology reports all through the urologist. The tumor seemed to be contained. Post surgery the urologist handled all the chest x-rays and CT's. We were never advised to see an oncologist either. Everything you have been told is exactly how we were advised. Only when my husband's kidney cancer showed up in his lungs were we guided towards an oncologist. It sounds like you are on the right track to me!
    lily33
  • A_New_Journey
    A_New_Journey Member Posts: 9

    Five years is awesome,
    Five years is awesome, congratulations! Maybe you could answer a question for me. Is it important to have an oncologist? My urologist has been handling everthing. He never advised me to see a oncologist. He sent me for several CT scans and a colonscopy before the nephrectomy to make sure it wasn't anywhere else. Post surgery he said I need a chest X ray in October and a CT scan one year from the surgery date. Does that seem correct?

    Does one need an Oncologist post-surgery?
    For what ever it's worth, my Urologist/Surgeon referred me to an Oncologist just prior to my surgery. I am pretty sure the key reason for this was that my Urologist performed a cystoscopy (same-day surgery procedure under heavy sedation) three weeks before my radical nephrectomy, and during this procedure he also took three biopsies. The resulting pathology report showed transitional carcinoma. My Urologist told me that these findings pointed to a high likelihood of needing chemotherapy shortly after surgery, because it was now confirmed that the cancer cells were not confined to the tumor attached to my right kidney.

    After my surgery, I asked my Urologist who would now be taking the "lead role" in my ongoing treatment and he said "the Oncologist". I returned to my Urologist 2 weeks and 4 weeks after my surgery for post-op check-ups and will see him again this fall, but only as a follow-up to re-inspect my bladder.

    If my cancer was confined to the tumor along with the affected kidney and ureter and the surgery was able to "get it all out", then I doubt I would have been referred to an Oncologist.

    I hope this information is of some help to you.

    Dave
  • wendyleigh
    wendyleigh Member Posts: 9

    Does one need an Oncologist post-surgery?
    For what ever it's worth, my Urologist/Surgeon referred me to an Oncologist just prior to my surgery. I am pretty sure the key reason for this was that my Urologist performed a cystoscopy (same-day surgery procedure under heavy sedation) three weeks before my radical nephrectomy, and during this procedure he also took three biopsies. The resulting pathology report showed transitional carcinoma. My Urologist told me that these findings pointed to a high likelihood of needing chemotherapy shortly after surgery, because it was now confirmed that the cancer cells were not confined to the tumor attached to my right kidney.

    After my surgery, I asked my Urologist who would now be taking the "lead role" in my ongoing treatment and he said "the Oncologist". I returned to my Urologist 2 weeks and 4 weeks after my surgery for post-op check-ups and will see him again this fall, but only as a follow-up to re-inspect my bladder.

    If my cancer was confined to the tumor along with the affected kidney and ureter and the surgery was able to "get it all out", then I doubt I would have been referred to an Oncologist.

    I hope this information is of some help to you.

    Dave

    Thanks guys. I feel much
    Thanks guys. I feel much more comfortable about everthing. It is nice to hear from other people that have these experiences.
  • LisaJo
    LisaJo Member Posts: 13

    Thanks guys. I feel much
    Thanks guys. I feel much more comfortable about everthing. It is nice to hear from other people that have these experiences.

    I'm back from Vacation!!!!
    I just got home from a lovely and relaxing camping trip to the Oregon Coast. This morning I went to have my blood drawn for my yearly scan.....My Urologist has handled everything since the surgery as they have a team that meets ( including onocologist) and they felt there was no reason for me to see an onocologist at any time during my 5 years. I go in yearly to have a chest x ray and CT scan. He wanted me to do an MRI because I guess there is not as much radiation????? I go in next Thursday for the works. Hopefully it will be like the other times where they really don't find anything suspect. I have had a couple of spots on my liver that they have watched but so far they seem to be just cysts.......Keep your fingers crossed. I'm not sure what the follow up protical should be now since I know that with RCC it can appear anytime down the line. Any suggestions?

    Have a great weekend>

    This is the end of my vacation and my husband and I are joining friends in Packwood WA to do some hiking, relaxing and lots of laughing.....back to work on MOnday!

    Lisa
  • RayG
    RayG Member Posts: 2
    The last 30 days are a blur. The tumor was found during an ultra-sound that was attempting to rule out sometime completely different. Surgery was performed last week and the malignancy was confirmed. I am very sore but able to move around slowly. I am emotionally shell-shocked as we have no history of cancer in the family. I feel extremely fortunate and humbled by the support we’ve received from relatives and friends.
  • jmtb
    jmtb Member Posts: 2
    new to the "club"
    I had a radical nephrectomy of my right kidney 10 days ago, renal cell carcinoma. Also had my 2 ovaries and my tubes removed at the same time because of a cyst on my right ovary which, happily, turned out to be 100% benign. I think my recovery is going remarkably well but I'm not pushing myself. I am so glad that I found this board the day before my surgery and read about many of your experiences. When I was laying in that hospital bed, I remembered some of the comments and issues that people had faced and I didn't feel so alone. I will always be grateful for that. I go to see my urologist and my gynecologist next week for the first time. This has all been a whirlwind for me too. My only symptom was unexplained weight loss over 6 months. I went to my internist for a physical on July 20th and had a diagnosis of kidney cancer on July 24th after a pelvic and abdominal sonogram, followed by at CT scan. Surgery was August 14th.
  • tictic1
    tictic1 Member Posts: 5
    Yes, I feel the same way. I
    Yes, I feel the same way. I had my left kidney removed on May 11, 2009. I to still have trouble wearing my pants. My tumor was 9cm. My left side feels funny, it is very hard to explain. I have some people saying, I look to good to be having chemo.. What are you suppose to look like during chemo??? I have alot of side effect {I'm on Torisel once a week}. I just wish people could listen to me when I say I don't feel good or I'm tired.. My kids and husband are doing the best they can, will most of them anyway..
  • DML0466
    DML0466 Member Posts: 1
    radical nephrectomy
    I had a radical nephrectomy of my right kindey on Aug 17th they had to go through my 10th & 11th rib and had to do it the old fashioned way resulting in a 10" inssion they also nicked my lung so I had a chest tube. I was wondering if you had the same procedure and how long it was before it felt like your ribs weren't collaping any more
  • wendyleigh
    wendyleigh Member Posts: 9
    tictic1 said:

    Yes, I feel the same way. I
    Yes, I feel the same way. I had my left kidney removed on May 11, 2009. I to still have trouble wearing my pants. My tumor was 9cm. My left side feels funny, it is very hard to explain. I have some people saying, I look to good to be having chemo.. What are you suppose to look like during chemo??? I have alot of side effect {I'm on Torisel once a week}. I just wish people could listen to me when I say I don't feel good or I'm tired.. My kids and husband are doing the best they can, will most of them anyway..

    I have been reading all the postings on this site and really appreciate everyone's stories and comments. I have spend the whole summer just going and going. It has been great although I am feeling a bit worn out at the moment. I go back to the doctor in the first of Oct and will have some tests to check to see if the cancer has come back. I am keeping a positive attitude. Tictic1: I know people say whatever comes to mind. They really just don't know what to say. I'm sure you would just like them to say you are looking good and leave it at that. How are your treatments going? I hope you are getting rest. Do you have young children to take care of? Please take care of yourself.
  • HSacklow
    HSacklow Member Posts: 3

    I have been reading all the postings on this site and really appreciate everyone's stories and comments. I have spend the whole summer just going and going. It has been great although I am feeling a bit worn out at the moment. I go back to the doctor in the first of Oct and will have some tests to check to see if the cancer has come back. I am keeping a positive attitude. Tictic1: I know people say whatever comes to mind. They really just don't know what to say. I'm sure you would just like them to say you are looking good and leave it at that. How are your treatments going? I hope you are getting rest. Do you have young children to take care of? Please take care of yourself.

    I had a radical nephrectomy on July 23, 2009 after the kidney mass was discovered the end of June. The last 3 months have been surreal as well as scary. The stage 2 tumor was removed completely encapsulated in the kidney. My doctor was able to do hand assisted laproscopic surgery so my initial recovery has been fairly good. I was in the hospital for 4 days and have been able to get dressed every day since I came home. I've been able to get out but my energy level is somewhere around my ankles. Some days I'm so wiped out I can't eat let alone do anything productive. My doc said that it will another 2 months before I'll feel truly better and a year to heal internally. I didn't realize the extent of the trauma to the body.

    As long as the cancer has been removed I'm OK. I too will be monitored, scanned and tested for the next 5 years. Right now it's every month but should spread out soon.

    I too run into people who are "surprised" that I'm up and out "so quickly". Sometimes I wonder what they expect -- a sign around my waist saying " my left kidney has been removed due to cancer" and my hobbling around. Who knows.

    You should take comfort in knowing many of us have or are going through the same things as you.

    Good wishes to you and the others who have responded.
  • wendyleigh
    wendyleigh Member Posts: 9
    DML0466 said:

    radical nephrectomy
    I had a radical nephrectomy of my right kindey on Aug 17th they had to go through my 10th & 11th rib and had to do it the old fashioned way resulting in a 10" inssion they also nicked my lung so I had a chest tube. I was wondering if you had the same procedure and how long it was before it felt like your ribs weren't collaping any more

    nephrectomy
    I had the hand assisted laparoscopic. I can't imagine what you are going through. My doctor told me how they use to do them and how much longer the recovery time is. It hasn't been very long since your surgery. I think my doctor told me 12 weeks and you should be about 95% and a whole year before you reach 100%. I am sure your recovery will take longer since they had to cut you open alot more. Not to mention they nicked lung. I hope you are doing better. Take care.