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  • Post Chemo Advice Regarding Active Surveilance/RPLND

    Hey all

    I am 29 year old, who was diagnosed with TC in February, below is my exact diagnosis. On May 10th I finished 3x BEP, and just had my first scan post Chemo last week. As you can see from the CT scans it has been shrinking, but isnt the magic number <1CM? Would RPLND be something that I would have to do, and or has anyone had instances where it takes some time for it to shrink all the way to that magic number? Secondly, my concern is if it takes time to shrink or doctor suggests surveillance, could it spread to other areas during that time? Lastly, I had a lung nodule, which hasn’t changed, and doctors most likely say it could be from an infection, any concerns there?

    Diagnosis
    - Mixed germ cell tumor, stage IIB - Mixed germ cell tumor‐ 90% seminoma, 10% embryonal ﴾pT1b N2 M0 S0 possible IIIA 5 mm lung nodule

    CT Scan on Lymphnodes
    - Pre Chemo: 5.0 x 2.4 CM
    - After Cycle 1: 3.8 x 1.6cm
    - First Post Chemo Scan: 3.2 x 1.4cm


    AFP
    - 2/25: 2.1, 3/3: 2.3, 3/22: 5.5, 3/29: 7.9, 4/5: 3.7, 4/12: 11.7, 4/15: 7.6, 4/22: 7.1, 4/22: 7.1, 5/3: 20.7, 5/10: 10, 5/17: 6.8

    LDH
    - 2/25: 192, 3/3: 181, 3/22: 166, 3/29: 252, 4/5: 222, 4/12: 229, 4/15: 120, 4/22: 241, 5/3: 197, 5/10: 143, 5/17: 187

    HCG
    - 2/25: <0.6, 5/3: 6.5, 5/10: 0.8, 5/17: 0.6







  • rpk5078
    replied
    Mike - thanks for sharing, very interesting. That makes sense. And given my AFP is lower than that rate mentioned, thats good to know.

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  • Mike
    replied
    Your AFP may never be <2. Here is a Op-ed from Dr. Einhorn on how they consider any level less than 25 as normal. https://ascopubs.org/doi/pdf/10.1200/JCO.2014.56.0607 Hopefully, it makes you a bit more comfortable with fluctuations at lower levels.

    Mike

    Leave a comment:


  • rpk5078
    replied
    I absolutely will, be in touch soon. Thanks again for all your support.

    Leave a comment:


  • Davepet
    replied
    Please continue to keep us posted

    Leave a comment:


  • rpk5078
    replied
    Thanks guys. Just an update had my follow-up with Duke Onco and surgeon. The Tumor board maintained their decision, what it was after the first PC scan, in that its shrinking, there is no concern of continue to survey it. But he said its also okay to opt in to RPLND. Its ultimately preference rather than "we have to do it now". I have decided (with the help of you folks), to continue to survey it and wait till October scan as I feel confident its necrosis. In the mean time I will continue to get in better shape, so in the situation I need the RPLND, I can recover faster. Below are most updated markers.

    Is there a point at which AFP goes to like normal <2?

    AFP
    - 2/25: 2.1, 3/3: 2.3, 3/22: 5.5, 3/29: 7.9, 4/5: 3.7, 4/12: 11.7, 4/15: 7.6, 4/22: 7.1, 4/22: 7.1, 5/3: 20.7, 5/10: 10, 5/17: 6.8, 6/7: 6.3, 7/19: 3.6 7/26: 3.3, 8/10: 3.7

    LDH
    - 2/25: 192, 3/3: 181, 3/22: 166, 3/29: 252, 4/5: 222, 4/12: 229, 4/15: 120, 4/22: 241, 5/3: 197, 5/10: 143, 5/17: 187, 6/7:185, 7/19: 155 7/26: 131, 8/10: 150

    HCG
    - 2/25: <0.6, 5/3: 6.5, 5/10: 0.8, 5/17: 0.6, 6/7: <0.6, 7/19: 8.6, 7/26: <0.6 (repeated), 8/10: <0.6

    Leave a comment:


  • Davepet
    replied
    In your case, I would request close monitoring, but not rush to surgery. Just my opinion.

    Leave a comment:


  • rpk5078
    replied
    The one interesting thing was MSK redid the pathology analysis, it different just a little bit, but was still dominant seminoma. Not sure if thats significant, as I am told different labs/technicians looking at it could have different conclusions. MSK had it at 70% Seminoma, 30% Embryonal Carcinoma vs 90% Seminoma, 10% Embryonal Carcinoma. Is that significant?

    I saw Dr. Mchugh, as Dr. Feldman was away, but they work together on TC research. I think because Dr. Sheinfeld already recommended surgery, I think Dr. McHugh, also would recommend the same since they would be in agreement. But he said 'if you were one of my high risk patients, it would be more critical you do the rplnd". Im doing my current treatment at Duke, and should have updates on what their board thinks early next week.

    It seems like since the two PC scans have shown its shrinking and its on that borderline size. Mike thats interesting, yeah it seems RPLND is the go to, but since my current institution has seen significant shrink since I started this process, im assuming they want to survey it. Is there anything else I should ask, as I meet my current Onco next week, just finalize any remaining questions?

    Leave a comment:


  • Mike
    replied
    Who did you end up seeing from the oncology perspective? Dr Feldman or Dr Funt by chance?

    I am not sure that there is going to be great data regarding your situation. One the data is old and thus hard to find. The protocols were developed off of that data and thus, most new publications just refer to the need for RPLND. For example, at 90% seminoma, and seminoma can shrink for some time, would it really correspond to the nonseminoma cutoff of 1 cm vs the seminoma cutoff of 3 cm? Most people with bulky seminoma will have persistent disease and often it is just fibrosis.

    Instead of a hard number, I would find comfort that the oncologist at MSKCC sounds comfortable with the reevaluate in October plan.

    Mike

    Leave a comment:


  • Davepet
    replied
    Any statistics will depend on exact % of each type, I think higher amounts of embryonal obviously gonna have worse odds, but thing is, guys with 100% stillget cured most of the time. I would be comfortable waiting till Oct. Doubt it will change the outcome & you might avoid overtreatment'

    Leave a comment:


  • rpk5078
    replied
    Hey Mike - I just got back from MSK, spoke to both Dr. Sheinfeld. As expected Dr. Sheinfeld recommended that their solution would be RPLND, but no urgency. I also met with the oncologist, and he said you have good prognosis, so the rplnd is more about "therapeutic and diagnostics, and there is no right or wrong here". He also said some folks feel short changed when they find out its just dead cells after rplnd.. The surgeon at my current institution is keeping his recommendation that he had after first PC scan, that its continuing to shrink, lets wait till the October scan. I actually asked MSK would it be okay if I waited till October, see how much more it shrinks, and in the meantime get my body in better shape if I have to do RPLND, they seem to be okay with that.

    My question is - given that its predominant seminoma, and the rest is embryonal carcinoma, which is aggressive, would you be concerned about continuing surveillance. Secondly, is there data on reoccurrence of folks to who chose Active Surveillance vs who do RPLND?

    Leave a comment:


  • Mike
    replied
    There can always be laboratory abnormalities so always good to verify the tests before acting too quickly. Seminoma can take a while to continue to shrink and your original path had a large seminoma component but I would see what the surgeon has to say. If you are at MSKCC, then it will be interesting to hear their opinion.

    Mike

    Leave a comment:


  • rpk5078
    replied
    HI Guys - Just had the bloodwork results for the redo, and its back to less than 0.6. So it seems last week's results were just random? Do these type of things happen? Also my oncologist has measured the two lymph nodes in question one lymph node around 1.2 cm and another around 1.7 cm in long axis, and run together along the retroperitoneum. I am getting a opinion from a surgeon. But what would your thoughts be? RPLND now vs waiting till October scan (next scan), given its shrank so much.

    Leave a comment:


  • rpk5078
    replied
    Thanks Mike and Dave. I will further update once I have the repeat bloodwork on Monday, given the unusual high HCG. On the one side its fantastic the lymph nodes are shrinking, and on the other, its like "its still in my body, even if it may be necrotic". Appreciate the support.

    Leave a comment:


  • Davepet
    replied
    Thanks for explaining my shorthand, Mike

    Leave a comment:

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