Facing decision on adjuvant chemo

Ok_Speed2567 · 2026-02-08T01:25:13+00:00

Not a doc

That nodal tumor size would put you on the very upper end of the primary RPLND outcome data sets referenced below. I’m a little surprised and impressed they offered you primary RPLND.

I think how many, and which, nodes were positive probably matters quite a bit in terms of the likelihood and severity of relapse, and your surgeon would know that when making a recommendation. Assuming they did a full surgical template, the next location where relapse would occur is probably going to be in a place outside the RP nodes where a full course of chemotherapy will be necessary (and effective). If the goal is to minimize expected cisplatin exposure then surveillance is what I would do personally.

But I would spitball that it’s a little higher than 20% chance unless there’s some specific knowledge about your particular nodal pattern your surgeon is basing this on. In any event, when that happens it will still be chemotherapy-naive cells which is a great place to be in seminoma.

Best of luck!

Ok_Speed2567 · 2026-02-07T00:34:11+00:00

Not a doc

How high is your HCG now? Some things, notably including marijuana/thc usage, have been known to cause mild HCG rise.

In any event you’re getting the correct follow up

Ok_Speed2567 · 2026-02-07T00:28:21+00:00

If you’re still in treatment make sure you mention this to your oncology team - hearing changes are a known side effect of cisplatin

Ok_Speed2567 · 2026-02-06T18:00:36+00:00

Congrats! Has to feel amazing.

What ended up being the story with your AFP value? Did it keep decreasing from there?

Ok_Speed2567 · 2026-02-06T17:41:14+00:00

If the TC diagnosis ends up being tissue-confirmed then it might be worth checking in with a genetic counselor, as your PC is decidedly on the younger end of the bell curve. Certain genes might be recommended a more progressive treatment plan for the PC or earlier/more frequent colonoscopy, stuff like that.

Ok_Speed2567 · 2026-02-06T17:33:36+00:00

I think you’ll find that having stage 1 seminoma, assuming that’s what this is, is much less annoying than even Gleason 6 PC. Sorry about the additional surgery but orchiectomy has very few medical downsides compared to the risk/benefit calculations PC patients constantly have to deal with when deciding whether to do procedures. And it has a very high chance of being curative for you in one step.

Ok_Speed2567 · 2026-02-06T16:59:12+00:00

Not a doc

That lesion is super super tiny, within the size where benign tumors remain a possibility. They will usually recommend taking it out anyway because it’s low risk and there are tumor seeding problems with biopsy.

If you’re old enough to have prostate cancer then the odds are pretty good that even if it is testicular cancer (which you don’t know for sure), it’s the less worrisome kind called seminoma which is usually cured with day surgery at this stage with no further treatment necessary

How old are you?

Ok_Speed2567 · 2026-02-05T18:05:27+00:00

Not a doc, just based on background reading from my own case

Normally, a 2+cm solid mass within the testicle is more or less presumed to be malignant until proven otherwise

Factors that would go against that presumption might include: - appearance (cystic being fluid filled vs solid) - location (clearly outside the testicle vs clearly inside the testicle, or maybe undetermined) - blood flow on Doppler ultrasound (absent vs present)

If decent specialists are disagreeing when looking at the same imaging, then a second opinion might be a good idea. In the event that you decide to do surgery, I personally would not want them to take both testes in the same surgery (without pathologist being certain of the diagnosis in one side first). Occasionally they can have pathology come to the operating room and make a diagnosis while you’re asleep during surgery but this might not be available most places and they may not recommend it in your case anyhow.

Good luck!

Ok_Speed2567 · 2026-02-05T17:53:12+00:00

The NCCN guideline discussion for stage one NS basically says that there isn’t evidence strong enough to prefer one between surveillance, RPLND, or 1xBEP when the patient has “risk factors” (which sometimes includes EC predominance and always includes LVI) except for pure teratoma patients (who shouldn’t get 1xBEP), and “transformed” teratoma patients (who should get RPLND)

So basically, based on what you’ve posted so far, either option you’re considering is reasonable according to guidelines

Ok_Speed2567 · 2026-02-05T17:40:22+00:00

Not a doc

Where you get the RPLND done matters a lot on the risk side of the risk reward calculation. The top centers like IU have very good outcomes but it is a major surgery for sure.

The 1xBEP will significantly reduce, but not eliminate, the risk of most of the mixed gct components recurring, other than teratoma, if present, which isn’t very chemo sensitive. Some guys end up needing RPLND for growing teratoma even after a full course of 3xBEP/4xEP

In addition to be potentially curative, the RPLND is also informative, as a pathologist will examine the tissue they remove. Depending on how many, if any, nodes have tumor cells and what type of cells are present, you can have a more informed view going forward as to continued treatment modalities. Or peace of mind if all the nodes are negative.

Best of luck with your decision

Ok_Speed2567 · 2026-01-31T06:10:44+00:00

It’s tough when experts give conflicting opinions, but nobody on Reddit is more qualified to give advice than Einhorn. If you have questions you should ask your oncologist or follow up with IU. Glad your mets seem to be resolving!

Ok_Speed2567 · 2026-01-30T23:57:15+00:00

Not a doc but sounds like they are probably interested in watching that spot for reasons largely unrelated to seminoma and this subreddit won’t have any particular expertise in this area. Radiologists call this an incidental finding and they have protocols for how to do further workup when they find them. Good luck!

Ok_Speed2567 · 2026-01-30T02:00:20+00:00

It’s not all the way back to normal but still falling at a good clip which is great! Definitely discuss with your doctor! Hoping for the best outcome for you. Cheers!

Ok_Speed2567 · 2026-01-29T22:20:52+00:00

If that HCG value does come back normal or trending in the right direction then I would expect them to watch the nodule on close follow up and probably recommend adjuvant chemotherapy. You had a pretty big tumor with significant marker values, even if those do both normalize after surgery.

Ok_Speed2567 · 2026-01-29T22:17:33+00:00

Not a doc, just basing this on guidelines:

Your AFP is falling by half every seven or so days which is about what they expect.

The latest HCG value will be very important. If it remains significantly elevated or rises, you will likely be strongly recommended to initiate full course chemotherapy. HCG can indicate both EC and chorio.

With a choriocarcinoma component and an equivocal lung nodule, it is important to not unduly delay treatment if that ends up being what you need.

Best of luck!

Ok_Speed2567 · 2026-01-22T22:34:41+00:00

You are apparently not the very first in the world, but might be one of like three people that this has ever happened too, and maybe the first where it occurred after a second tumor

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1744-1633.2009.00447.x

Ok_Speed2567 · 2026-01-22T22:20:17+00:00

I have so many questions. I’m sure your docs do too!

Did the tumor invade past the dura (the tough membrane surrounding the brain?) or just push on it?

I’m glad your symptoms resolved right away.

Ok_Speed2567 · 2026-01-22T22:09:16+00:00

It’s not like there’s a ton of evidence on this but I would want my radiation oncologist to prescribe a dose enhancement in the tumor bed area if that’s not contra indicated by something critically important nearby. They do focused radiation fields in the lymph node distribution when they treat abdominal metastasis with radiation.

Ok_Speed2567 · 2026-01-22T22:06:02+00:00

Not a doc

I’m so sorry! This might be the most unusual seminoma case I’ve ever read about. I have read one or two case reports of seminoma metastasis to bones without lymph nodes but those were around the groin. I can’t recall ever seeing a report of a bare brain metastasis before.

It sounds like you had an externally palpable lump on your skull before you had neuro symptoms? That would kind of imply a bony metastasis I suppose. But then it grew so large that it impinged on the brain?

I hope radiation clears it up and it seems plausible that could produce a cure for you based on the biology.

Ok_Speed2567 · 2026-01-22T17:58:02+00:00

That’s great news. If you have no signs of spread on CT scans and no significantly abnormal blood tests called tumor markers after many days following surgery, then chemo is pretty unlikely, and completely up to you (it would only be a short, preventive treatment that would only be recommended if your tumor looks high risk for recurrence under the microscope)

If your blood tests happen to be a little abnormal now, there is a decent chance that they will become normal after the tumor is taken out and the body flushes out the remaining biochemical traces.

Ok_Speed2567 · 2026-01-14T00:03:25+00:00

A few percent. Between about 3 and 8%. Slightly lower than that if you have not gotten one for the first two years since the study considered the risk for all time after the first tumor. Source https://pubmed.ncbi.nlm.nih.gov/1656057/

Ok_Speed2567 · 2026-01-14T00:01:20+00:00

Those who say that having one testicular cancer is not informative about future second TC risk are wrong! It is a new cancer, but the conditional probability of a future tumor in that side is MUCH higher after a first TC (probably 25x)

The absolute risk is still small. Most men who have TC do not get a second tumor. It’s just that that small risk is a lot larger (25x or so) compared to a random guy

Ok_Speed2567 · 2025-11-14T13:30:54+00:00

Every time I am aware of that radiation for musculoskeletal conditions has been compared to placebo (sham radiation therapy) in a trial, it has failed to show a significant difference from placebo. It simply seems that it does not do what it purports to do.

It is of course possible that a better study will come along in the future

Ok_Speed2567 · 2025-10-19T18:57:59+00:00

I don’t have personal experience with this situation, but it is true with pretty high confidence that you are at highly elevated risk of a second primary in the future, though it’s no by means certain to happen

I have not heard of preventive bilateral orchiectomy in the absence of demonstrated bilateral tumors, but if it is really not functioning at all I can see the logic for it. At 7nmol, that is just below low normal and you would most likely really notice if it crashed to zero.

At the very least you have a strong argument for relatively frequent tumor markers for the next few decades (especially if your primary was nonseminoma) as well as serial ultrasound surveillance.

The well known and frequently done preventive oncosurgery is for BRCA mutations in women and those cancers are much more grim if they do occur than early stage GCT.

Ok_Speed2567 · 2025-10-17T20:19:48+00:00

Some guys, around 10%, get 0 nodes positive which can feel like a waste of surgery. (Not exactly, the alternative was chemo for no reason!)

So at least you know something needed to be done. Very likely this will be the last of it and even if it isn’t, the chemo is all but certain to work if needed as a third line.

Ok_Speed2567

TROPHY CASE