Keytruda, ChRCC, pT3a, pNO(0/8), LO, V1, RO, two doctors, two opposing recommendations

Tumourhumour
Tumourhumour Member Posts: 3 Member
edited June 21 in Kidney Cancer #1

Hi everyone,

I need help making a decision.

The tumourboards recommendation: one year Keytruda on account of my young age, size of tumour, a lack of studies showing no/negative impact of Keytruda on ChRCC and Keytruda being the only available adjuvant treatment.

The oncologists recommendation: no therapy with Keytruda on account of a lack of studies showing a positive impact of Keytruda on ChRCC and possible side effects.

What do I do?

I know ChRCC is rare, I know of all available studies, I understand where both recommendations come from, I understand possible risks and side effects but I am neither an oncologist nor a member of a tumourboard so how am I expected to make an informed and life-changing decision?

I don't know what to do.

Comments

  • eug91
    eug91 Member Posts: 471 Member
    #2

    It's not a clear-cut/easy decision. I was clear cell, but my doctor was the same as yours - he recommended against the adjuvant therapy. He would have done it if I had insisted, but I trusted his advice that there isn't enough evidence to support it.

    That being said, I'm pretty certain some people here did get the adjuvant therapy. Hopefully one of them will chime in.

  • Averygirl
    Averygirl Member Posts: 17 Member
    #3

    hi my husband has been diagnosed with renal cell after a hand wringing o er the pathology. He has a 3cm tumor on his right kidney and swollen lymph nodes. Today the tumor board and our oncologist unanimously agreed the best way to start is immunotherapy. Have not sat down with him to go over the process but two drugs are involved as the best. One is Keytruda and I did notice many people have had this particular new therapy. It’s been a nightmare for my husband as my oncologist could not identify the type of cancer. Now we no it is renal cell. We are feeling better because they now have a plan to treat. Does the majority of people have surgery first or is there others who started with therapy. I would be interested to know any successes. Thank you all. It’s been a very tough journey

  • babrede
    babrede Member Posts: 5 Member
    #4

    I know I’m late to the party but for WIW,

    I’m stage 2 grade 3. Had a radical nephrectomy. I received conflicting guidance.

    We decided based on this:

    since I’m young-ish (59), know the Keytruda certainly won’t help if I don’t take it, side effects are not horrendous, I can certainly stop at any time if it becomes harmful…

    To go ahead with treatment if insurance approved it.

    They did and I’m 4 months in so far fatigue (has improved) mouth sores and a few hives. Annoying but nothing devestating

  • DanF
    DanF Member Posts: 12 Member
    #5

    Get a medical second-third-fourth opinion sometimes its needed not to question your own provider especially if you like yours as much as I love mine. It is always good to leave no stone unturned in case there is a facility with a different treatment therapy or guidance to help you rest easier making the decision for yourself.

    In my case MD Anderson turned me off so badly th Mayo and UChealth just made it clear and simple what I needed to do so the decision became a no brainer. Its the research and work up front that can be tiring and exhausting but once you are confident in yourself the power of positive mental attitude will support you the rest of the way.

    Besides all these drugs react different for everyone however Keytruda does sound to commonly have minimal side affects it is usually paired with a chemo then followed with radiation for optimal results based on current data. This is what I am personally experiencing and finding out as we go. The radiation I received in 2018 wasn't even available as a treatment option in 2014 when I was diagnosed so you just never know. I had 7 partial nephrectomies to start until dialysis was eminent hence the need for these other therapies and treatment as well.

    Take care and best wishes for success and remmission in your future no matter which path you take. Sorry for some grammar errors this site is horrible at letting you go back and fix.

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