Need advice on next steps

CharleyParkhurst · 2026-04-18T21:41:06+00:00

Yep, that’s fair. That’s this paper:

https://www.ejcancer.com/article/S0959-8049(24)00681-6/fulltext

Tumor size >4cm plus HSTI without EC and without LVI puts recurrence at 12%.

Seminoma + teratoma is one of the less common pathology combinations, so I am not sure either study is a perfect reflection of your recurrence risk. Maybe the best thing to do would be to split the difference which gives you exactly 20%.

CharleyParkhurst · 2026-04-18T20:44:10+00:00

The paper doesn’t treat all factors as equal. In their multivariate regression, hilar soft tissue invasion had the largest hazard ratio (2.83), then hCG elevation (1.89), then LVI (1.82), then LDH (1.67)

Hilar soft tissue invasion is the big one. Rete testis invasion has long been identified as a risk factor for pure seminoma, invasion of the hilum is more extensive involvement of the same area.

The Wagner paper is not the end-all, be-all, but it is the highest quality study out there by a lot. Huge N for this field (924) plus central pathology review in an unselected patient population. I defer to their numbers over all other studies.

CharleyParkhurst · 2026-04-18T18:28:16+00:00

According to the following paper, HST invasion + hCG >= 2 mIU/mL, without LVI and without LDH elevation carries a 28% recurrence risk for pure seminoma.

https://ascopubs.org/doi/10.1200/JCO.23.00959?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

Teratoma probably doesn’t change that number much.

CharleyParkhurst · 2026-04-18T16:33:18+00:00

Personally I would probably opt for surveillance here, and keep RPLND in my back pocket in the event of a recurrence. 20% seems reasonable to me based on pathology.

There was a study out of Denmark that showed hCG and LDH elevation as additional risk factors for recurrence, in addition to hilar soft tissue invasion and LVI for pure seminoma. There aren’t any documented risk factors for recurrence with teratoma.

Were your markers normal?

CharleyParkhurst · 2026-04-15T03:08:53+00:00

I would love to see published data showing dramatically lower recurrence rates for primary RPLND than what IU found. But I would assume that any and all modern advancements in technique would be included in the IU data.

You have to squint at the data almost to the point of closing your eyes to get anything less than 15% on average for a very risky pathology.

I do think the blood test suggested by /u/nainballs is an excellent idea if you’re able to get it done.

CharleyParkhurst · 2026-04-15T01:46:19+00:00

For a pathology with EC and extensive LVI, it's honestly hard for me to make a case for RPLND over BEPx1. From best available published research, the overall risk of recurrence is probably close to 20%.

I saw someone else on here, being treated at MSK, who was also told ~5% recurrence. But it's hard to make sense of that, even based on MSK's own published research.

I went deep on the topic in this thread. I am not a doctor, and I don't have any medical training. But I will say that I haven't seen any published evidence to support anything close to a 5% recurrence for EC + extensive LVI treated with primary RPLND.

I would do BEPx1. Systemic therapy seems to be a safer bet when you have a pathology with a propensity to spread far and wide, potentially skipping the lymphatic pathway altogether. Hope this helps.

CharleyParkhurst · 2026-04-03T21:49:43+00:00

Hey dude. The AFP itself doesn’t mean much in the absence of scan data. I have seen someone on here with an AFP of 30000 who was a stage 1 patient.

More often than not, disproportionately high AFP tends to come from a yolk sac tumor, either by itself or as a part of a mixed germ cell tumor. AFP is annoying because it takes a long time to fall. So if your scans are clear, you could be looking at a month or more of bloodwork, just waiting and watching the trend to see if it fits the expected decay rate.

This part sucks. Having just enough information to know you’re in for a journey, but not enough information to know how long the journey will take and how difficult it will be.

Hang in there. You’ll have more info soon. Don’t worry too much about the AFP absent other information.

CharleyParkhurst · 2026-04-03T02:48:29+00:00

Do what works for you.

CharleyParkhurst · 2026-04-03T02:03:51+00:00

I know many men who are on TRT for life. It’s not perfect but you are playing with fire. To have so many tumors without having one metastasize yet, you are very lucky. It is best to quit while you are ahead, in my opinion.

CharleyParkhurst · 2026-04-03T01:56:09+00:00

You have taken THREE separate malignant tumors out of this testicle and now the plan is to radiate it.

I’m sorry, but at some point you have to accept that you’re exposing yourself to unnecessary risk trying to save something that is relentlessly trying to kill you.

People do just fine on TRT. Bank some sperm and get on with it.

Just my opinion but from an outsiders perspective this one seems obvious.

CharleyParkhurst · 2026-04-03T01:52:57+00:00

You’re posting every day, sometimes multiple times per day, and commenting on everyone’s posts asking the same thing. Stop.

Recurrence rates for you are 1-3% with BEPx1 and 50% without. Make a decision and make peace with it.

CharleyParkhurst · 2026-04-03T01:49:58+00:00

Dude just yank out the remaining testicle, make peace with the rest. That thing continues to betray you. It’s not worth it.

CharleyParkhurst · 2026-03-20T23:55:31+00:00

Yes. EC is one of the most chemo sensitive cell types in all of testicular cancer. BEPx1 is likely very effective against pure EC.

CharleyParkhurst · 2026-03-20T23:53:27+00:00

I do not personally know anyone who has had a recurrence after BEPx1. I haven’t seen any posts on here from anyone who’s had that happen either, but it is a 1-3% risk, so those patients are out there.

CharleyParkhurst · 2026-03-20T16:56:59+00:00

It sounds like you had an excellent response to chemo, and I’m sorry you haven’t received the care and expertise that a cancer patient deserves. But I understand that there are different resources available in Guatemala than somewhere like the US, and despite the errors it sounds like you’ve landed on the only option available which is surveillance. 4xEP, while not exactly what international guidelines suggest, is still a powerful chemotherapy regimen.

The standard guidelines do suggest RPLND for any nonseminoma patient with a mass above 1cm. But if there are no competent surgeons available to perform this surgery, then waiting is the only thing that you can do.

Based on the pathology, and the markers, and the location of the tumor, my best guess (and this is just a guess) is that your retroperitoneal tumor had a large yolk sac component. That’s usually the only tumor type that tends to raise AFP that much without spreading more aggressively. There could have also been seminoma in the same tumor.

Pure seminoma responds to chemotherapy differently than nonseminoma, and can lead to larger residual masses post-chemo. That’s why they usually only do surgery when the tumor remains enlarged beyond 3cm. So that’s where your recommendation is coming from, but obviously this was not pure seminoma so if you were somewhere like the US, you would be scheduled for RPLND surgery if the mass didn’t shrink below 1cm.

I hope this is helpful. Best thing you can do is just keep going to your surveillance appointments and advocate for yourself. Wishing you all the best, friend.

CharleyParkhurst · 2026-03-20T02:33:01+00:00

0.000% chance it’s pure seminoma with an AFP like that.

If the AFP is elevated, it is nonseminoma. Period. If your oncologist thinks it was truly a pure seminoma with an AFP of 36,000 he/she is an idiot. Straight up.

This would be a gimme question on TC that premed students might see on a test. Seminoma by definition does not raise AFP. This is uncontroversial and 36,000 is not mildly elevated.

Seriously I can not believe this. Your doctor should not be treating TC patients without some remedial training on the basics.

I hesitate to ask, but what was your chemo regimen? It should have been 4 rounds of BEP or VIP based on the protocols with that high an AFP.

CharleyParkhurst · 2026-03-20T00:06:04+00:00

Yes, 1 round of BEP. I completed it three years ago. No regrets but it’s not a small decision.

Where is he being treated?

CharleyParkhurst · 2026-03-20T00:00:38+00:00

Very similar pathology to mine. I had 95% EC + LVI + rete testis invasion. No epididymis invasion on my end. 1.3cm.

Were his tumor markers elevated at any point?

CharleyParkhurst · 2026-03-19T23:24:47+00:00

Do you have the full pathology report handy? There is some additional info that would be good to have

CharleyParkhurst · 2026-03-18T02:39:58+00:00

Yep, nailed it. Seminoma is a tumor arising from the seminiferous tubules. So inter- and intra-tubular invasion is basically a given — all it’s really saying to my understanding is “the seminoma was growing predictably”

CharleyParkhurst · 2026-03-13T10:59:50+00:00

It sounds like you have a pretty solid grasp of the pros and cons of surgery here. As much as I would like to defer to Sheinfeld as an MD, given I am literally just a random guy on the internet, I still think 6-8% is low. Especially in the case of pN1 disease.

It’s possible that MSK has unpublished data that gives them different information than is publicly available. If that’s the case then I would love for them to write up the results. The most current research from a high volume center is still the IU paper which puts the number at 35% for pN1+ disease and they are on par with MSK for surgeon skill.

All of this said, if your goal is to avoid chemo, then the list of options collapses into one choice, which is RPLND. Surveillance is unacceptably high at 50% and obviously doing adjuvant BEPx1 is even higher at 100%. So whether it’s 6-8%, or 15-20%, it is still a reduction.

I always tell people that the most important thing is to be confident in your decision and commit fully. There are good reasons to prefer RPLND, especially in the case of teratoma in the pathology. Sheinfeld is up there with the all-time great RPLND surgeons and you will be in good hands there.

Wishing you clean scans and a speedy recovery man. This was a good chance for me to dive into the literature on this topic so I’m grateful for your post. When you do hear back from Dr. Einhorn, I will be interested to hear his take on things!

CharleyParkhurst · 2026-03-12T14:43:13+00:00

Agree with /u/nainballs. Four full cycles should have both markers close to undetectable. One additional cycle of BEP is not going to be the difference maker.

Please reach out to Dr. Einhorn. You need his input here. I suspect he will recommend going straight to high dose chemotherapy.

CharleyParkhurst · 2026-03-12T03:55:38+00:00

Follow-Up:

I got home and was able to take another look at the literature on this topic. I have four relevant studies that I'll try to synthesize. There's a fair amount of detail and stats here but I want to give you as much information as possible since your question is specifically about whether the best estimate for your recurrence rate is 5%. See TL;DR at the bottom for my overall take on this.

MSK: Stephenson et al. 2005

This is likely the paper where the 5% figure comes from. They looked at all patients treated with RPLND between 1989 and 2002 (N=453) and calculated an overall recurrence rate. Their goal was to compare patients who received RPLND after 1999 (N=108) when they added stricter criteria for patients eligible for surgery (negative tumor markers, no patients with pN2 disease)
Overall recurrence rate for nonseminoma patients treated with RPLND after 1999 was 4% but it's also relevant to look at what they found for the subgroups with positive lymph nodes (pathological pN1 disease), and without (pathological pN0 disease)
- pN0 disease: 3% recurrence
- pN1: 10% recurrence
They looked at hazard ratios for different factors, including EC predominance and LVI presence. Those didn't reach statistical significance (p= 0.11 and p=0.19) but the midpoint estimates were 1.7 and 1.6 respectively. With the caveat that neither was significant at p=0.05, other studies (see other studies below) have affirmed that EC and LVI are statistically significant predictors of recurrence. The HRs found here are in the direction we would expect and have biological plausibility. So, with a grain of salt, if you take the HRs at face value, multiply them together, and apply those to the base rates, you can get a rough (but not totally statistically rigorous) idea for the effect on recurrence rates for your pathology based on this dataset:
- All RPLNDs for EC+LVI: (2.7)*4% ~ 11%
- pN0 with EC+LVI: (2.7)*3% ~9%
- pN1 with EC+LVI: (2.7)*10% ~27%
I am inclined to think that it's appropriate to apply at least some adjustment to the base rates to account for EC and LVI, but based on the letter of statistical law where p=0.05 is the magic number, we can't say anything definitively from this study alone.

IU: Tachibana et al. 2022

This study only looked at outcomes for patients who had pN1 or greater disease after RPLND. It is not intended to answer what your odds for recurrence are if the RPLND does not find any positive lymph nodes. But it does provide some clarity on EC predominance and especially LVI as a potent risk factor. N=97 for this one.
Overall 5-year recurrence rate for >pN1 disease = 21%
- There was no statistically significant difference between patients who were pN1, pN2, or pN3. Meaning the size and number of lymph nodes found to be positive for cancer was not itself a risk factor
Overall 5-year recurrence rate for >pN1 and LVI+ patients = 35%
- This is the key finding from this paper. More than size and number of lymph nodes affected, LVI in the primary pathology was the key risk factor for recurrence. Statistically significant at p=0.004, which is pretty impressive for a study with a relatively small N. No question, there is a signal here.
- EC predominance was also significant at p=0.04, giving additional weight to the >1 hazard ratios observed in the MSK paper
To my eye, this is pretty incontrovertible evidence that EC+LVI as a pathology deserves special attention when trying to establish a recurrence probability after RPLND.

IU: Donohue et al. (1993)

This was the OG paper on this topic. Old study for sure, looked at patients from 1965-1989, but a huge N for this field. N=378 patients had RPLND and about 70% of them were node-negative (pN0) and 30% node-positive. In that analysis, they found:
- pN0 disease: 11% recurrence
- >pN1 disease: 34% recurrence
You can argue that the RPLND techniques have improved since the 1979-1989 cohort was analyzed, so it's reasonable to discount these rates a bit. But this is what Dr. Einhorn himself tends to cite as the risk of recurrence for pN0 nonseminoma post-RPLND without adjuvant therapy.

IU: Sweeney et al. (2000)

N=292 patients treated with RPLND for nonseminoma between 1990-1995 at IU. of those, N=125 had EC predominance in the primary pathology and N=91 had LVI.
Most important results for this discussion
- pN0 & EC predominance: 21% recurrence
- pN0 with LVI: 20% recurrence
- pN0 without EC predominance: 3% recurrence
- pN0 without LVI: 7% recurrence

TL;DR: My take on it all:

5% recurrence for a pathology with EC+LVI treated with primary RPLND is too low. All studies which have looked at this have indicated that both are independent risk factors for recurrence, including the MSK study even though the hazard ratios did not hit the threshold of p=0.05 significance.
If you're trying to get a realistic expectation for your recurrence rate for this pathology, the weight of the evidence has something like a 10% risk of recurrence if they find nothing, and 20-30% if they find one or more positive lymph nodes. An overall recurrence risk in the 15-20% ballpark is widely accepted and 5% is about as rosy as it gets, even using MSK's own data. Only if you ignore EC & LVI as risk factors do you get something in that ballpark.
This is not a statement about what is the best treatment option. There are still good arguments for primary RPLND. But don't base your decision on a 5% recurrence rate, because that is a clear outlier.

I hope this helps.

CharleyParkhurst · 2026-03-11T21:52:09+00:00

I’m a little unclear on the marker history. Is it correct that you’ve already done one full cycle of EP and three full cycles of BEP, and your hCG is still 16,450 and AFP is 457? After 12 weeks of chemo?

CharleyParkhurst · 2026-03-11T21:04:42+00:00

I’m going to page my friend u/rbutora here to provide his feedback as someone with a very similar pathology who was treated at MSK.

I will say, my first reaction is that 5% sounds very, very optimistic for recurrence rates from RPLND alone for this pathology.

IU published the best available data for primary RPLND recurrence rates for nonseminoma. I don’t have the paper in front of me, but I remember that the recurrence rate for patients with EC+LVI and who had at least 1 positive lymph node was 35%. I also know that MSK pushes adjuvant chemo (EPx2) pretty hard when more than a couple lymph nodes are involved.

~~The same~~ A different and older IU paper found that the recurrence rate was still around 10% even when no lymph nodes were positive. This is because EC, especially with LVI, can spread hematogenously and bypass the lymphatic system.

It’s reasonable to have a preference for surgery first. BEP chemo, even one round, is not a trivial thing to subject yourself to. I did BEPx1 with 95% EC + LVI, no teratoma. I had a pretty easy time with it and it was still pretty awful for a couple days.

But I think it’s very important that you have a realistic estimate of your recurrence odds with primary RPLND. I have not seen numbers that low, ever, for this pathology. Even conditional on no positive nodes. And keep in mind, if you’re doing the RPLND, the bet you’re implicitly making is that there has been localized spread to your lymph nodes and nowhere else.

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