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RCC return after 5+ years

My husband had his kidney removed 15 years ago. Than this August was diagnosed with Stage IV in bone and lung. Has anyone experienced the reoccurance of RCC?

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    That's tough after all that time. What prompted the diagnosis?

    Unfortunately all too many people have recurrences. (I'm at the other extreme, having had two recurrences within just months of my nephrectomy due to very aggressive cancer.)

    Do you know the sub-type of RCC your Husband had? Are they certain that what he has are metastases from his original kidney cancer?
  • azblackmon
    azblackmon Member Posts: 9

    That's tough after all that time. What prompted the diagnosis?

    Unfortunately all too many people have recurrences. (I'm at the other extreme, having had two recurrences within just months of my nephrectomy due to very aggressive cancer.)

    Do you know the sub-type of RCC your Husband had? Are they certain that what he has are metastases from his original kidney cancer?

    diagnosis
    Yes, it is clear cell. Leg collapsed and I had pain so I went to the doc. They did an xray and sent me to Mayo Clinic in Scottsdale. I have completed rad therapy and am on votrient now. When they took the kidney 15 years ago they thought all was caught, guess they didn't know it would reoccur. At least they didn't tell us it could.
  • icemantoo
    icemantoo Member Posts: 3,358 **

    diagnosis
    Yes, it is clear cell. Leg collapsed and I had pain so I went to the doc. They did an xray and sent me to Mayo Clinic in Scottsdale. I have completed rad therapy and am on votrient now. When they took the kidney 15 years ago they thought all was caught, guess they didn't know it would reoccur. At least they didn't tell us it could.

    az,

    Recurrance can be predicted percentage wise based upon the size and characteristics of the original tumor. Stage 4 does not happen over night. What was his original diagnosis? What kind of follow up did he have for his first 5, 10 and 15 years following his surgery? For how many yars was he followed up after his surgery with CT scans and/or MRI's.


    As a long term survivor (10 plus years) I have a personal interest in the follow up care your husband did or did not receive.

    I am sure that the Mayo clinic in Scottsdale will provide him with the bestt available options.


    Icemantoo
  • icemantoo said:

    az,

    Recurrance can be predicted percentage wise based upon the size and characteristics of the original tumor. Stage 4 does not happen over night. What was his original diagnosis? What kind of follow up did he have for his first 5, 10 and 15 years following his surgery? For how many yars was he followed up after his surgery with CT scans and/or MRI's.


    As a long term survivor (10 plus years) I have a personal interest in the follow up care your husband did or did not receive.

    I am sure that the Mayo clinic in Scottsdale will provide him with the bestt available options.


    Icemantoo

    sorry about your husband
    I'm a 4-year survivor of RCC. My original diagnosis was Stabe 1B, Furhman grade 2. 5cm tumore in left kidney. I'm sorry to hear about your husband and thank you for sharing his symptoms. What was his original diagnosis (stage/grade)? I came onto this site today to ask about symptoms of recurrent RCC as I've had a persistent cough since September 30th. Right before the cough, however, I had a CT scan that showed that lungs were clear. Wondering if that can change so quickly or if my cough is from something else.
  • azblackmon
    azblackmon Member Posts: 9
    icemantoo said:

    az,

    Recurrance can be predicted percentage wise based upon the size and characteristics of the original tumor. Stage 4 does not happen over night. What was his original diagnosis? What kind of follow up did he have for his first 5, 10 and 15 years following his surgery? For how many yars was he followed up after his surgery with CT scans and/or MRI's.


    As a long term survivor (10 plus years) I have a personal interest in the follow up care your husband did or did not receive.

    I am sure that the Mayo clinic in Scottsdale will provide him with the bestt available options.


    Icemantoo

    After the initial diagnosis and having the kidney removed they followed up by doing chest xrays for five years. That was it. They never said there could be a recurrance. They never said there was a time frame past the typical fiver year survival that with most cancers means you beat it. RCC is apparently different. I asked the DR at Mayo what was the longest time frame before recurrance for RCC and was told 40 years. We are glad that we didn't have the constant worry, other than the normal, I don't trust that it won't come back. but we sure would have been more aggressive with our personal follow ups with doctors. Now we are to understand that this recurrance is not very responsive to chemo or rad therapy.
  • azblackmon
    azblackmon Member Posts: 9

    sorry about your husband
    I'm a 4-year survivor of RCC. My original diagnosis was Stabe 1B, Furhman grade 2. 5cm tumore in left kidney. I'm sorry to hear about your husband and thank you for sharing his symptoms. What was his original diagnosis (stage/grade)? I came onto this site today to ask about symptoms of recurrent RCC as I've had a persistent cough since September 30th. Right before the cough, however, I had a CT scan that showed that lungs were clear. Wondering if that can change so quickly or if my cough is from something else.

    Cautiosly Opti...
    I believe in error on the side of caution. It is a tough call because everything appears to be linked to cancer after your have had the dreaded "C". Check with your doctor, even if they think your nuts, if only once your caution helps to ward off the worst it is worth it. Best of health to you!
  • icemantoo
    icemantoo Member Posts: 3,358 **

    After the initial diagnosis and having the kidney removed they followed up by doing chest xrays for five years. That was it. They never said there could be a recurrance. They never said there was a time frame past the typical fiver year survival that with most cancers means you beat it. RCC is apparently different. I asked the DR at Mayo what was the longest time frame before recurrance for RCC and was told 40 years. We are glad that we didn't have the constant worry, other than the normal, I don't trust that it won't come back. but we sure would have been more aggressive with our personal follow ups with doctors. Now we are to understand that this recurrance is not very responsive to chemo or rad therapy.

    Follow up
    As,

    Follow up with 5 years of chest xrays does not sound adequate. All the chest xray tells you is if the Kidney Cancer metatisised to the lung. Normaly now they do follow up CT,s and or MRI's and or Ulterasounds for 5-10 years. More if the original tumor was over 5cm. What the exact protocal was 15 years ago I do not know. Mine was 10 years ago. As for the recurrance there are many new drugs and therapies developed in the past few years that may be able to help you. For that I will leave you under the care of the Mayo Doctors. Again my first impression is that you did not receive proper follow up care.

    Do not compare this with other Cancers as Kidney Caner is different than most other cancers.


    Icemantoo.
  • Boolea
    Boolea Member Posts: 28
    icemantoo said:

    Follow up
    As,

    Follow up with 5 years of chest xrays does not sound adequate. All the chest xray tells you is if the Kidney Cancer metatisised to the lung. Normaly now they do follow up CT,s and or MRI's and or Ulterasounds for 5-10 years. More if the original tumor was over 5cm. What the exact protocal was 15 years ago I do not know. Mine was 10 years ago. As for the recurrance there are many new drugs and therapies developed in the past few years that may be able to help you. For that I will leave you under the care of the Mayo Doctors. Again my first impression is that you did not receive proper follow up care.

    Do not compare this with other Cancers as Kidney Caner is different than most other cancers.


    Icemantoo.

    Icemantoo,
    May I just ask

    Icemantoo,

    May I just ask here, how is RCC different, with regard to recurring? I am fairly new here, and am doing some research online and not getting very far. As far as recurrence goes, I wonder how often it recurs in the same place or pops up somewhere else. I know, Cancerland is a scary place...
    My follow up CT scan is in 6 months, which is good. Until then I'm assuming all the cancer is gone but of course that trust is not 100%, in the back of my mind. There was some concern over the margin of excision on one side of the tumor, but the doctor didn't think it was an issue.

    Boolea
  • azblackmon
    azblackmon Member Posts: 9
    icemantoo said:

    Follow up
    As,

    Follow up with 5 years of chest xrays does not sound adequate. All the chest xray tells you is if the Kidney Cancer metatisised to the lung. Normaly now they do follow up CT,s and or MRI's and or Ulterasounds for 5-10 years. More if the original tumor was over 5cm. What the exact protocal was 15 years ago I do not know. Mine was 10 years ago. As for the recurrance there are many new drugs and therapies developed in the past few years that may be able to help you. For that I will leave you under the care of the Mayo Doctors. Again my first impression is that you did not receive proper follow up care.

    Do not compare this with other Cancers as Kidney Caner is different than most other cancers.


    Icemantoo.

    follow up reply
    You are correct there have been many changes due to better science, meds, and tools now available. Kidney Cancer as you say is different than most cancers. The Mayo DR used a term that 15 years ago was considered the "Dark Age". They know more now. Again you are correct the follow up was not the same as they would provide today. A day late...

    I also have to say there were other medical factors that I believe if read correctly may have provided us with an advance warning when the tumor formed in the leg and prior to spreading to both lungs.

    My husband had a heart attack five years ago and has been submitting blood tests ever since in six month segments as a follow up with the cardio physician. He was hospitalized with cronic bronchitis. Hind sight is always 100%. I wish we knew then what we know now.

    Maybe there is someone out there that will reads this and share a positive outcome to recurrance. Other than that we will rely on the only hope that we know and lean on His everlasting arms. Be vigilent, and be well!
  • icemantoo
    icemantoo Member Posts: 3,358 **

    follow up reply
    You are correct there have been many changes due to better science, meds, and tools now available. Kidney Cancer as you say is different than most cancers. The Mayo DR used a term that 15 years ago was considered the "Dark Age". They know more now. Again you are correct the follow up was not the same as they would provide today. A day late...

    I also have to say there were other medical factors that I believe if read correctly may have provided us with an advance warning when the tumor formed in the leg and prior to spreading to both lungs.

    My husband had a heart attack five years ago and has been submitting blood tests ever since in six month segments as a follow up with the cardio physician. He was hospitalized with cronic bronchitis. Hind sight is always 100%. I wish we knew then what we know now.

    Maybe there is someone out there that will reads this and share a positive outcome to recurrance. Other than that we will rely on the only hope that we know and lean on His everlasting arms. Be vigilent, and be well!

    Boolea,

    I have zero knowledge of other Cancers but my observation of its differences with RCC are:

    Surgery is the primary and initial treatment of RCC.

    RCC from a small tumor is usually cured by the surgery.

    There is some risk of RCC coming back in the good kidney (as opposed to spreading) which my doctor says is 2%. Not high, but higher than the general public.

    Chemo is not used for RCC on the Kidney.

    Although 5 and 10 year survival rates are borrowed from other Cancers they do not seem to have any special significance with RCC other than milestones. .

    Most recurrance (spreading) from RCC occurs within the first few years or is discovered later when follow up tests are not done.

    Many times if there is a recurrance and it is caught real early it can be dealt with when it is small by CYRO or RFA procedures,

    Take everything I just said with a grain of salt as others and the Medical Profession may not agree with my simplified answers.

    Icemantoo
  • Joe_fh
    Joe_fh Member Posts: 50
    wow...
    Got to admit, that sent cold chills down my spine. Hang tough and please keep us informed.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    icemantoo said:

    Boolea,

    I have zero knowledge of other Cancers but my observation of its differences with RCC are:

    Surgery is the primary and initial treatment of RCC.

    RCC from a small tumor is usually cured by the surgery.

    There is some risk of RCC coming back in the good kidney (as opposed to spreading) which my doctor says is 2%. Not high, but higher than the general public.

    Chemo is not used for RCC on the Kidney.

    Although 5 and 10 year survival rates are borrowed from other Cancers they do not seem to have any special significance with RCC other than milestones. .

    Most recurrance (spreading) from RCC occurs within the first few years or is discovered later when follow up tests are not done.

    Many times if there is a recurrance and it is caught real early it can be dealt with when it is small by CYRO or RFA procedures,

    Take everything I just said with a grain of salt as others and the Medical Profession may not agree with my simplified answers.

    Icemantoo

    Survival rates
    "Although 5 and 10 year survival rates are borrowed from other Cancers they do not seem to have any special significance with RCC other than milestones. ."

    That's a very useful observation that I think we all need to take on board. Without wanting to be alarmist, we sure do see plenty of evidence here of unexpected recurrences many years on, in folks who seemed to have been 'cured' a lot earlier. The message must be - get on with your life but do still remain vigilant.
  • lbinmsp
    lbinmsp Member Posts: 266
    Hi AZ
    Sorry to have to welcome you here - but glad you found your way to a place of understanding and compassion.

    I too am someone who has had RCC recur after years. Here's my story in a nutshell -

    5/2001 Initial RCC Diagnosis
    6/2001 Left Radical Nephrectomy (w adrenal gland) - Stage 1, Grade 2, T1, N0, M0 - 6.5 cm.
    NED 7/2001 - 8/2005
    8/2005 DCIS (breast cancer) - Stage 1 - left breast - lumpectomy followed by radiation therapy
    3/2006 RCC recurrance - right lung
    4/2006 Right lower lobectomy
    NED 5/2006 - 8/2011
    8/2011 RCC recurrance - pancreas
    12/2011 Stereotactic radiosurgery - 5 treatments
    3/2012 Pancreatic tumors continue to grow (stereotactic radiosurgery was not successful)
    3/2012 Metastasis to liver
    3/2012 Sutent 50 mg - quit after 16 days due to severe side effects

    RCC is one cancer where there are no 'take it to the bank' statements any longer. Used to be the word was that 'surgical removal' was the only guaranateed 'cure'. Now, however, more and more people are battling recurrances who had previously been called 'cured'. An interesting article was posted here not long ago - I'll put the link here again if you want to review it. Really spoke volumes about what is known (and not known) about this cancer. (http://www2.mdanderson.org/depts/oncolog/articles/12/5-may/5-12-compass.html)

    I was fortunate to have doctors who continued with diligent followup - had that not happened - most likely I wouldn't be here posting this reply. I have posted over and over here of the need (absolute necessity) of continued, long-term followup. I believe most RCC medical experts know this and do this with their patients but I also think some doctors look at this like any other cancer - where 5 years NED says 'CURED'.


    I don't come here often any more - and don't post often. But please keep everyone informed about how your husband is doing.

    LizB
    still NDY
  • Limelife50
    Limelife50 Member Posts: 476
    lbinmsp said:

    Hi AZ
    Sorry to have to welcome you here - but glad you found your way to a place of understanding and compassion.

    I too am someone who has had RCC recur after years. Here's my story in a nutshell -

    5/2001 Initial RCC Diagnosis
    6/2001 Left Radical Nephrectomy (w adrenal gland) - Stage 1, Grade 2, T1, N0, M0 - 6.5 cm.
    NED 7/2001 - 8/2005
    8/2005 DCIS (breast cancer) - Stage 1 - left breast - lumpectomy followed by radiation therapy
    3/2006 RCC recurrance - right lung
    4/2006 Right lower lobectomy
    NED 5/2006 - 8/2011
    8/2011 RCC recurrance - pancreas
    12/2011 Stereotactic radiosurgery - 5 treatments
    3/2012 Pancreatic tumors continue to grow (stereotactic radiosurgery was not successful)
    3/2012 Metastasis to liver
    3/2012 Sutent 50 mg - quit after 16 days due to severe side effects

    RCC is one cancer where there are no 'take it to the bank' statements any longer. Used to be the word was that 'surgical removal' was the only guaranateed 'cure'. Now, however, more and more people are battling recurrances who had previously been called 'cured'. An interesting article was posted here not long ago - I'll put the link here again if you want to review it. Really spoke volumes about what is known (and not known) about this cancer. (http://www2.mdanderson.org/depts/oncolog/articles/12/5-may/5-12-compass.html)

    I was fortunate to have doctors who continued with diligent followup - had that not happened - most likely I wouldn't be here posting this reply. I have posted over and over here of the need (absolute necessity) of continued, long-term followup. I believe most RCC medical experts know this and do this with their patients but I also think some doctors look at this like any other cancer - where 5 years NED says 'CURED'.


    I don't come here often any more - and don't post often. But please keep everyone informed about how your husband is doing.

    LizB
    still NDY

    Ok Liz i read the article
    But i have one question and i need this explained in laymens terms.What is the meaning of RCC spreading HEMATOLOGICALLY without lymph node involvment not sure i like the sound of that.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Ok Liz i read the article
    But i have one question and i need this explained in laymens terms.What is the meaning of RCC spreading HEMATOLOGICALLY without lymph node involvment not sure i like the sound of that.

    Spread
    Mike, it means that it is being spread via CTCs (circulating tumor cells) in the bloodstream, rather than via the slower moving, different circulatory system - the lymphatic system. These are the two routes for distant metastases to occur - the bloodstream or the lymph system. The other way the primary cancer can spread is by direct physical contact, which is why containment within the kidney capsule is significant - if contained, it won't spread into local organs in that way.
  • Joe_fh
    Joe_fh Member Posts: 50
    I have often wondered ...
    From online reading I read that RCC is prone to expand to several areas of the body, including Heart, lungs, liver, brain, and bone among others.

    In the watch plan they put forth in my case, they seem to be only concerned with chest and abdomen/pelvis. I have never had a bone, nor brain scan and I find that this makes me very nervous , especially after reading this thread. I imagine they cover the Heart, Lungs, and Liver, and of course the remaining Kidney in the scans they are doing now, but what about the other common locations? I wonder is this a cost related issue?

    I think at my next appointment I need to make some inquiries, especially in light of this thread. Or am I just being paranoid?


    Not sure how my reply got all the way up here.. Must be the new upgrade.
  • azblackmon
    azblackmon Member Posts: 9
    Joe_fh said:

    I have often wondered ...
    From online reading I read that RCC is prone to expand to several areas of the body, including Heart, lungs, liver, brain, and bone among others.

    In the watch plan they put forth in my case, they seem to be only concerned with chest and abdomen/pelvis. I have never had a bone, nor brain scan and I find that this makes me very nervous , especially after reading this thread. I imagine they cover the Heart, Lungs, and Liver, and of course the remaining Kidney in the scans they are doing now, but what about the other common locations? I wonder is this a cost related issue?

    I think at my next appointment I need to make some inquiries, especially in light of this thread. Or am I just being paranoid?


    Not sure how my reply got all the way up here.. Must be the new upgrade.

    Often wondering...

    Joe_fh,

    Your doctor can have a PET/CT scan done, perhaps this will help with your inquiry.

    PET/CT scans provide information to help physicians:

     

    • Locate the site of the cancer
    • Determine the size of the tumor
    • Differentiate benign from malignant growths
    • Discover if the cancer has spread
    • Select treatments that are likely to be appropriate
    • Monitor the success of therapy
    • Detect any recurrent tumors