Just hit five years post-nephrectomy

Jackaroe
Jackaroe Member Posts: 23
in Kidney Cancer #1

I have not been active on this board for some time, but the support I received early on in my journey was crucial. I wanted to give an update and to also ask for some guidance.

After minimizing the significance of blood in my urine for WAY too long, I was diagnosed with a tumour in my right kidney. I was scheduled for a nephrectomy within about 10 days of the diagnosis, which was a blessing. This was laproscopic, with hand assist.  The cancer proved to be of the chromophobe type, stage II due to the size, with clear margins and no lymph node involvement. 

My post-surgery CT scan showed two lung nodules, and I have lived in fear for five years that one of my semi-annual scans would show a growth in one or both of them, indicative of metastisis. 

Thankfully, as of my five-year scan, the resulsts of which I received last week, this has not happened. 

I have a follow up with my oncologist next week to discuss things. I want to discontinue the scans at this point. I tried to engage the oncologist regarding this at my last consultation with him six months ago (that is, discontinuing the scans at five years, assuming there would continue to be no evidence of mets), but he deferred the conversation.

My understanding is that five years without evidence of mets can be considered a criteria for discontinuing scans. Any thoughts on this?

Another question. I am the primary and nearly sole income provider in my family, and it has been very stressful for myself and my wife to consider the financial difficulty she could be in if I became unable to work. Life insurance has been out of the question, at least up to now. Does anybody have any experience getting life insurance at five years post kidney cancer?

Thanks so much to all of you!

Jack

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Talk to

    Jack,

     

     

     

    ---the doctor about annual ultrasounds.

     

    icemantoo

  • foroughsh
    foroughsh Member Posts: 779 Member
    #3
    Congratulations on your five

    Congratulations on your five year clear scan.

    I have read and heard a lot about mets showing up after five years of diagnosis, it happens rarely but it is a possibility especially for cases such as our cases, stage two patients.  RCC cells grow very slowly and a met can be diagnosed even after 20 years of primary diagnosis. So if you insist on not having yearly C.T scan, think about having ultrasound please.

     

  • Kat23502
    Kat23502 Member Posts: 179 Member
    #4
    I have heard through the

    I have heard through the grapevine that for renal cell carcinoma you can be considered ”cured” in terms of insurance purposes after 5 years. That being said, I will want to be followed for the rest of my life and I’m fairly young. RCC is one of the cancers that is known to show its ugly head again years and even decades later. Diagnostic imaging is my profession and knowing that it can show up 20 years later, I just won’t stop it all together.  It isn’t worth the risk to me of possibly missing something that if caught early, is manageable. Once I reach five years I will discuss a plan with my doctor. Likely I will request yearly ultrasound combined with chest/abdomen CT on widespread regular intervals of about 5 years. Also, other than life insurance, something to consider is some type of cancer insurance. There are policies with AFLAC and other companies that cover just wages lost and procedure due to a cancer diagnosis. 

  • Jackaroe
    Jackaroe Member Posts: 23
    #5
    Thanks for the feedback guys.

    Thanks for the feedback guys. This is helping me realize that, emotionally, I have fantasized about getting to a place where the RCC just ceased to exist as an issue. So it's helpful to process this ahead of my oncology meeting. I'm interested in some more thoughts about the CT scans vs. ultrasound issue. If my memory serves, my oncologist has had me exculsively on chest/abdomen CT scans post-nephrectomy. Also, do people have thoughts regarding the best interval to have testing done after five years? Yearly?

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #6
    I was under the impression we

    I was under the impression we are scanned/followed for either 10 yrs or the rest of our lives. My oncologist does not want too many CT scans so ultrasound and chest xrays it is for now. I am only in the beginning and just had my first 3 month scans last week. I do not know the plan until I see him later this month. All the best!

  • Jackaroe
    Jackaroe Member Posts: 23
    edited March 2018 #7
    Kat23502 said:

    Your follow-up beyond 5 years

    Your follow-up beyond 5 years will depend greatly on your specific risk of recurrence. Most physicians follow the guidelines of the AUA and NCCN. For the most part, the definite guideline for stages 1-3 ends at 5 years. However, every physician will have their own protocol for what happens after 5 years. This will be based on stage, grade, subtype, risk factors, and other things. Some will continue with monitoring some will not. 

    As for ultrasound vs CT it’s a risk vs benefit discussion. CT is more sensitive to mets and recurrence but carries the risk of radiation. This is my field and I would never accept anything less than CT, at least initially. Beyond that, I would want to limit radiation exposure unless symptoms present, risk factors are increased, or on a more widely scheduled basis. For this reason many physicians opt for ultrasound. There is no radiation, it’s quick, and fairly cheap. However, it is not very sensitive to small renal masses, early mets, lymphadenopathy around the aorta and can’t look at the lung tissue at all. So, as you can see, there isn’t one answer that is perfect for all.

    Here are are a couple of links that may be helpful.

     

    http://www.auanet.org/guidelines/follow-up-for-clinically-localized-renal-neoplasms-(2013)

    https://www.nccn.org/patients/guidelines/kidney/index.html#52

     

    Thank you so much. Super

    Thank you so much. Super helpful.

     

  • Jackaroe
    Jackaroe Member Posts: 23
    #8
    AnnissaP said:

    I was under the impression we

    I was under the impression we are scanned/followed for either 10 yrs or the rest of our lives. My oncologist does not want too many CT scans so ultrasound and chest xrays it is for now. I am only in the beginning and just had my first 3 month scans last week. I do not know the plan until I see him later this month. All the best!

    Thank you! You too!
     

    Thank you! You too!

     

  • Kat23502
    Kat23502 Member Posts: 179 Member
    #9
    Jackaroe said:

    Thanks for the feedback guys.

    Thanks for the feedback guys. This is helping me realize that, emotionally, I have fantasized about getting to a place where the RCC just ceased to exist as an issue. So it's helpful to process this ahead of my oncology meeting. I'm interested in some more thoughts about the CT scans vs. ultrasound issue. If my memory serves, my oncologist has had me exculsively on chest/abdomen CT scans post-nephrectomy. Also, do people have thoughts regarding the best interval to have testing done after five years? Yearly?

    Your follow-up beyond 5 years

    Your follow-up beyond 5 years will depend greatly on your specific risk of recurrence. Most physicians follow the guidelines of the AUA and NCCN. For the most part, the definite guideline for stages 1-3 ends at 5 years. However, every physician will have their own protocol for what happens after 5 years. This will be based on stage, grade, subtype, risk factors, and other things. Some will continue with monitoring some will not. 

    As for ultrasound vs CT it’s a risk vs benefit discussion. CT is more sensitive to mets and recurrence but carries the risk of radiation. This is my field and I would never accept anything less than CT, at least initially. Beyond that, I would want to limit radiation exposure unless symptoms present, risk factors are increased, or on a more widely scheduled basis. For this reason many physicians opt for ultrasound. There is no radiation, it’s quick, and fairly cheap. However, it is not very sensitive to small renal masses, early mets, lymphadenopathy around the aorta and can’t look at the lung tissue at all. So, as you can see, there isn’t one answer that is perfect for all.

    Here are are a couple of links that may be helpful.

     

    http://www.auanet.org/guidelines/follow-up-for-clinically-localized-renal-neoplasms-(2013)

    https://www.nccn.org/patients/guidelines/kidney/index.html#52

     

  • Steve51
    Steve51 Member Posts: 23 Member
    #10
    2006 was my nephrectomy

    After 5 years, my former doctor said, scans were necessary every two years. The 7th year everything was fine, but the 9th year revealed a tumor on my right lung. Eighteen months later was another tumor on the same lung. Now and forever, I will be having scans every 3 months and I'm good with that decision. BTW...both tumors were removed and I'm living a normal life. Good luck to everyone

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