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New diagnosis, conflicted next step!

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  • dt216
    started a topic New diagnosis, conflicted next step!

    New diagnosis, conflicted next step!

    I'm new to TC. Just wanted to thank everyone for their contributions here! My diagnosis has been a bit easier thanks to everyone and their sharings.

    I have done alot of research since my recent I/O and I am stuck between just doing surveillance and doing 1 or 2 rounds of BEP.

    There seems to be a new push towards active surveillance vs adjuvant RPLND/chemo.

    Im "high risk" due to the 50% Embryonal component, however I have no lymphatic/vascular invasion.

    CT of chest down was all clear. AFP levels started at 159 and have dropped to 28 since my last blood test (as expected).

    I understand there is new info linking embryonal and LVI for high risk. However my embryonal component is very close to the cusp of high vs low risk at 50%

    In other words, I'm torn between subjecting myself to possibly unnecessary chemo, or possibly needing 4 doses of chemo down the road. Any thoughts or advice is greatly appreciated!

  • dt216
    replied
    My hcg has normalized as well as LD after orchiectomy. I took a blood test with labcorp on the 27Nov and Im awaiting the results of AFP. hcg and LD were completed and still normal (of course not the one im awaiting). I meet with my oncologist december 3rd and id like to make a decision by then. I think im leaning towards surveillance but im seeking chemo if that makes any sense. My onco/uro both think im high risk but good enough for surveillance. Thanks for the input/advice all.

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  • wolff516
    replied
    I was 90%+ EC with LVI. I chose 1xBEP over surveillance due to the higher risk of relapse. The two choices given to me by my Oncologist were either 1xBEP or surveillance. I finished my one round in May and so far so good since then. Based on everything that I looked into, if I were in your shoes (which of course I am not), I would have done surveillance since there was no LVI. But that being said, since I did the 1 round of chemo and the studies out there show my relapse rate is now 3% or less (fingers crossed), I have avoided a lot of future stress. I don't ever worry about my checkups and the only time I remember that I even had cancer is when people I haven't seen in a while ask me about my health (recurring questions also come from the fact that I decided to not let my hair grow back - I like the new look, but it's also a reminder to others of the cancer). Good thing is either way, you'll get through this. I hope my comments are useful. Let me know if there's anything else you'd like to know from my end.

    Leave a comment:


  • AustinsMom
    replied
    Hi there,

    First of all, welcome to the forum. Although no one wants to be here, you will find it invaluable as a source of information and support as your journey continues.

    Thankfully, it looks like you caught this quite early. Its fabulous that your scans are clear and your AFP is in a downward trend. You should have another blood test soon to see if it has normalized, as Tony mentioned. This typically happens within 30 days or so. What about hCG? Did you get numbers for that. It's 1/2 life is much shorter, so by now it should be under 2.

    You are correct in that the higher the % of EC, the greater chance of relapse. However, there is also a good chance you won't, which is why surveillance is often recommended. That can be very stressful though. I had thought about BEP x1 for Austin but our Oncologist talked us out of it. Of course now I wish he had gone with that option, but.........

    In my opinion, I would opt for surveillance in your case, because of your pathology report. Chemo will not touch teratoma and a RPLND would only be for staging purposes at this juncture, since there is nothing visible to be removed. Also, EC can sometimes bypass the abdomen and go directly to the lungs. EC and Yolk Sac are aggressive and if they spread it is usually quickly, which is why you must get your monthly blood work, though they respond very well to chemo. Scans will be helpful for picking up (mature)teratoma, which tends to grow much slower, as well as any enlarged lymph nodes.

    There is no right or wrong decision here ( as long as your markers normalize, that is). Just be comforted by knowing that this is very treatable as long as you are diligent with your check ups, you will be fine.

    Wishing you the best,
    Diane

    Leave a comment:


  • TonyTigger
    replied
    Has your AFP normalized (single digits)? It looks like it is on track to normalize, if so I think you are a good candidate for surveillance otherwise you are looking at 2 or 3 cycles of BEP.

    Leave a comment:

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