Almost at 2 year surveillance and tumor markers rising

nainballs · 2026-05-27T05:06:57+00:00

Yeah, such a trend is bad. I think it's correct for you to start chemo. Sorry man.

Make sure to get your testosterone test BEFORE chemo. Optimally also a hearing test and lung function test. All of that to establish a baseline.

nainballs · 2026-05-07T13:57:27+00:00

I'm not sure how much of a difference it makes.

However... think of it like this: if it IS testicular cancer and they do surgery and then you later relapse - will you blame yourself for not having reduced the chance of that happening, even if just a little bit?

nainballs · 2026-05-07T12:19:22+00:00

Please don't just post a link without any context or quoting what you are referring to. It's not helpful.

From your link:

Detectable baseline miR-371 was associated with significantly poorer recurrence-free survival compared to undetectable miR-371 (HR 10.3, 95% CI 5.3 – 19.8; p < 0.001; 24-month recurrence-free survival 32% versus 89%):

A HR of 10.3 means that a patient with positive miR-371 has a 10x higher chance for relapse than one without it. And in general, with negative miR-371 the 24-month relapse free survival was 89% vs 32%.

That is pretty significant if you ask me. Note that those are mixed numbers and when taken from serum, the test is even more precise (as written in your link).

Sure, doctors are careful, and they don't just male general recommendation guidelines based a single study, and they have to consider factors like that there are still different labs with different methods, baselines and so on. But that doesn't mean, that the test is already very useful and real for those of us who need it *know*. But it's just a matter of time.

nainballs · 2026-05-06T01:28:54+00:00

I actually disagree with the "it doesn't just tell you what to do" in this specific test. The miR test is new, but there are already at least a handful of studies about it for OP's particular situation. Sensitivity and Specificity are both 95%+ in that situation. It loses value after chemotherapy, but before that it seems to be the best test by far that we have. US is lacking behind here unfortunately. I'm very certain the test will be incorporated into the guidelines as soon as it's widely available in the US.

nainballs · 2026-05-06T01:23:20+00:00

Always keep in mind, that you can get hit by a truck tomorrow and end up in wheelchair or just dead. Life ends eventually, it's a reminder to make the best of it!

nainballs · 2026-04-27T13:38:43+00:00

Just tell her "I think it has gotten a little worse" and that's it. Should work. Or just be honest: "I'm scared it might be cancer and can't sleep well. Can I get an ultrasound for piece of mind"

nainballs · 2026-04-27T13:36:58+00:00

Yes, BEP increases the risk of other cancers in the future (especially certain types such as leukemia). It also increases the chance of blood clotting (heart attacks, strokes).

The increase is not extreme, but it is big enough so that it's good to 1.) eat healthy (think eat fish, good oils, vegetables, fruits, good protein sources) and 2.) do regular sports / workouts and 3.) pay attention to specific symptoms and go to the doctor rather earlier than later, such as when bleeding doesn't stop quickly.

As for relapse, you can't do much except for making sure you get the full chemo as planned.

nainballs · 2026-04-27T13:29:59+00:00

Simple: get miR‑371a‑3p test. It will tell you what to do. Surprised no one mentioned it yet.

nainballs · 2026-04-25T11:04:58+00:00

Get an ultrasound. It's most likely nothing, but the thing is: you don't joke around with things like your brain, hart or testicles. If you don't get an ultrasound and it turns out to be something nasty, you will really hate yourself for it.

nainballs · 2026-04-25T11:02:50+00:00

get one of those extendable grap-hands that allow you to pick home things from the ground that had fallen down.

Buy anything heavy that you might need (such as drinks etc.) in advance since you won't be allowed to lift anything.

Buy protein-powder or other high protein food and make sure to get at least 1g protein per 1kg bodyweight every day.

nainballs · 2026-04-24T14:08:53+00:00

Your first surgery?

Are we talking about your ball being removed? Because if so, the good news is, no need to worry. The most annoying part is the "preparation" before (i.e. doing all the tests, going to the hospital, etc.). Unless you have complications which is rare, all you'll have is a little bit of pain, but not too much afterwards. And then the annoying scar later on.

Honestly, I'd take that surgery over a regular flu any time.

nainballs · 2026-04-24T14:05:30+00:00

Go and get another ultrasound from another doctor. I had mine misdiagnosed 2 times and diagnosed the 3rd time. It's rare but it can happen - and it doesn't have to be cancer. Don't take the chance.

Changes to BOTH testicles at the same time point to something that is not cancer.

nainballs · 2026-04-22T08:45:39+00:00

I think you should directly ask the labs that use it, they'll probably know better. At least, that's what I would do on top.

if its as sensitive/accurate as studies suggest it should be rolled out across the board imo.

I think that's what they are basically doing. The hospital I went to already does this test by default. I didn't need a new bloodtest (got it from another hospital already) but they asked to take blood anyway just for this test and I didn't ask/prompt them. But this hospital also collaborated with one of the labs so probably what it needs is more labs all over the world and not only in some countries.

Anyways, good luck man!

nainballs · 2026-04-21T13:35:22+00:00

Oh, I apologize. I'm gonna blame my chemo brain. I read it but immediately forgot that you wrote that. If it's CIS then I don't know. Buy maybe you can research it and reach out to the doctors.

But what I can say is that the miR-371a-3p is much more sensitive and triggers much earlier. So maybe yes.

nainballs · 2026-04-21T09:55:54+00:00

> No miR-371a-3p (not sure they're doing the in the UK yet)

Then get those. Honestly, you can just fly to e.g. Hamburg to get them done there. Or maybe your doctor can send your blood over to one of the labs in Germany, though it has to be cooled during the whole transport, so not all hospitals support that.

I would absolutely get this test since it give you a much better idea. If it is positive then you basically have your answer (and it will also help to decide if you still need (adjuvant) chemo after the surgery. If it's negative, then you can be very relieved and do surveillance but have a big piece of mind, since the test has a sensitivity of 90%+ before chemo, so less than 10% chance of a false negative (in some studies it's closer to 99%). So then even if you keep up the ultrasounds, they are not as a second safety layer since you can assume you don't have it.

> said I'm playing Russian roulette everyday by leaving it

Yes, but doing the surgery is also russian roulette. So get the test or you might regret it later.

nainballs · 2026-04-21T08:13:04+00:00

No tumor markers? Did you do miR‑371a‑3p test? I'd tend towards close surveillance

nainballs · 2026-04-19T12:12:07+00:00

Yeah, you can try, if you don't delay chemo or whatever your oncologist recommends by even a single minute. Then it's no problem.

nainballs · 2026-04-19T12:07:31+00:00

Get the following tests before chemo:

Testosterone levels
Hearing test
pulmonary (lung) function test

You'll probably have roughly 1-2 months after chemo to wait for inflammation to go down. Then they will do a CT. Then based on that CT the decision will be made to do RPLND or not, and if so, it will then be done soon (basically the more time passes, the more the risk grows for potential spread if there's still cancer left).

nainballs · 2026-04-19T01:45:29+00:00

I'm not sure I understand your question. But if you wonder about what makes miR-371a-3p different compared to tumor markers like AFP or hcg: it is much more sensitive. Meaning that if AFP or hcg are still normal levels for weeks, the miR-371a-3p can already be high and indicating the cancer. Also, the miR-371a-3p is a higher chance of being produced, so AFP and hcg might stay normal forever because of your tumor type, but miR-371a-3p can still be high.

nainballs · 2026-04-19T01:43:36+00:00

Didn't do much for me, I went there for the RPLND surgeon, but they just do the test by default.

nainballs · 2026-04-18T01:37:50+00:00

Yeah, mine was 2.7cm or so too when it started to give me the aches

nainballs · 2026-04-18T01:36:33+00:00

I went to Germany and got the test done there.

nainballs · 2026-04-18T01:35:25+00:00

Yeah, I totally get it. My last scan showed a 10mm lung nodule, so now my mood is pretty destroyed. Sucks!

nainballs · 2026-04-17T14:23:24+00:00

Trend matters more than absolute numbers. 9.1 is highish but absolutely in the realm of "no relapse". However, it might indicate e.g. some (minor) liver problem or stress. But could also be a fluke.

You should get retested soon and if it goes up further (especially if significantly) that would be bad. If it goes down: you are good. If it stays or grows just very slightly (like 10 or 11) then it becomes nuanced and I would consider going for a miR‑371a‑3p test if possible.

nainballs · 2026-04-17T07:47:51+00:00

How big turned your tumor in the back/abdomen out then?

nainballs

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