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Active surveillance and relapse

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  • wjonw
    started a topic Active surveillance and relapse

    Active surveillance and relapse

    Hi all!

    First wanted to say thank you to all of you who take the time on this forum. I was diagnosed late June and this was an important resource for me in discovering, understanding and coping with the diagnostic. I look forward to participating back .

    I wanted to understand the literature out there. My tumor size was 6 cm but no rt. My oncologist don’t me to be high risk you need both, otherwise it’s not high nor low. That being said he gave me a 16% relapse and recommended surveillance , along with einhorn, gilligan and pretty much every other doctor I spoke with.

    I wanted to hear thoughts on this and opinions. I went with surveillance but get worried here and there- hopefully that’ll go with time.

    Interestingly my doc also says he thinks the one carbo rec will disappear for the two rounds. Was curious if anyone had seen anything about this.

    Thanks !

  • Davepet
    replied
    I was unemployed, but could not have worked during chemo, I was simply too fatigued. Some seem to manage to keep working to some extent, but I can't recall anyone saying the kept their normal work schedule 100%.

    Leave a comment:


  • wjonw
    replied
    Thanks Dave! I appreciate all the answers you've assisted, not just on my topic but throughout the forum.

    Its been a scary few days, we are working on the plan this week since i was only confirmed about my stage 2B late friday. I was wondering if its common for me to be the one following up on all the steps and not the onc dept? Like port, follow up consultations, chemo prepare convo etc.. As of now all i know is that they want to do 3 BEP for the single node in para aortic lymph node >3cm which from research seems like the common approach- is that correct?


    I'm at cedars sinai under dr Hoffman, hes emailed Dr einhorm and Claire Beard- hopefully someone has heard about them (beyond einhorn)?

    Also one quick question- did most of you take off from work completely? or slowly dialed back?

    Thanks!

    Leave a comment:


  • Davepet
    replied
    Stay hydrated, if you are not needing to pee every hour, probably not enough.Other than that most important part, eat whatever sounds good, even if not considered healthy. Chocolate was my best friend.The steroids will likely make you gain weight, it can be lost post chemo, but try to keep it reasonable, it doesn't just go away once chemo is done, it takes effort.

    You WILL be uncomfortable for much of this journey, just remember things will return to normal once it's over.
    Dave

    Leave a comment:


  • wjonw
    replied
    Just to update. Turns out I was never stage 1 so starting 3x bep in the upcoming week. First port and pulmonary tests. A bit In shock but I guess this is better than the not knowing .

    Will be looking throughout the forum but any tips to prepare?

    Leave a comment:


  • Harxxony
    replied
    My friend had lymphoma 20 years ago, I remember that he had various symptoms like high fever, weight loss, tiredness, blackouts when exercising, even some psychiatric issues like sudden paranoia attacks, even before any lymph node serious enlargement. Doctors suspected he had lymphoma but couldn't find good node for biopsy for verification for fays, they performed biopsies for several nodes and they were able to find just a single cancerous cell for verification. Its a tough desease, he got six or seven chemo cycles and also bone marrow transplant. Of course, there are many types/subtypes/grades/stages of lymphoma. So I think that chances for lymphoma only on base of single enlarged node are just around 0,00001 percent, but they must be 100% sure because if you start with chemo for TC, and it turns out to be lymphoma somehow, then there will be mayor problem with changing the treatment. So, if node is large enough and well shaped for performing biopsy without surgery, it is a good idea. I'm no expert, off course.

    Leave a comment:


  • wjonw
    replied
    Ya that’s my understanding also. So is the thought that this would not be related to my testicular cancer but something else?
    Especially since my left testicular was pure seminoma

    Leave a comment:


  • uno_cojones84
    replied
    I think seminoma grows much slower than non-seminoma. I had one lymph node > 2cm stay same size from August till my RPLND surgery in December. My urologist and surgeon believed they would find teratoma post RPLND, instead they found seminoma.

    Leave a comment:


  • biwi
    replied
    It is for non-seminoma. But I don't know enough about seminoma to know if it can grow that fast.

    Leave a comment:


  • wjonw
    replied
    Thanks Biwi!

    I'm set for a biopsy next week, will be CT guided biposy so they are just taking out a piece to analyse.

    What you are saying makes sense and i'll make sure to bring it up when i see my oncologist. I'm just amazed that this lymph went from 1.1 to over 3 in 3 months when it was small since 2014,
    I guess that is my other question- does that growth rate feel plausible;e?

    Leave a comment:


  • biwi
    replied
    I don't know much about lymphoma, but it seems given the timing and your TC diagnosis chances are much higher that it is TC IMHO.

    If you have normal markers, and a single 3.2CM node and pure seminoma, you could potentially avoid chemo and have an RPLND. I believe this is not standard of care but is currently being trialed at some centers right now because it has shown to be effective after some recent testing. This would have two benefits - 1) being able to confirm exact pathology from a biopsy, and 2) likely avoiding chemo if it is found to be TC. If it is found to be lymphoma, then I'm not sure what the chances you would need further chemo.

    Leave a comment:


  • wjonw
    replied
    Hi All,

    So i now have a node near para aortic that is 3.2 cm and was 1.1 a few months ago.

    So clearly stage 2 but doctor wants to check it ins't another type of cancer as this lymph was in my body (at 1.1 cm) 10+ years ago. Because it was in me years ago they downgraded my Cancer to a stage1 seminoma.

    In october was first surveillance, all good. Today that node is 2x + and the doctor is saying either i was misdiagnosed at stage 1 or this could be another cancer (lymphoma).

    Has this happened to anyone? is this kind of increase not normal in that small of a time?

    I'm concerned about the chance of it being lymphoma- and now having to re-go through the wait and what it is...

    Thanks for any replies..

    Leave a comment:


  • JesperDK
    replied
    I think it is a good choice. You are closely followed by the tjeck-up protocol and if anything should happen, they have the treatment ready that can cure you :-)

    Leave a comment:


  • wjonw
    replied
    Hi All! Sorry for not following up. I had pure seminoma 100%

    I opted for surveillance after the recommendations and my desire to move on - will keep fighting this regardless !

    Thanks all!

    Leave a comment:


  • Davepet
    replied
    I could be wrong, but I don,t think tumor size is a risk factor at all. LVI is a much bigger risk factor, especially with Embyonal TC. You didn't mention your tumor type, but that is a very important factor to know when making these decisions.

    Dave

    Leave a comment:

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