Tumor size after 4xEP

[dustumor99]

Reading the boards here, it sounds like there are some thresholds that need to be met as far as tumor size post-chemo. I've seen a couple of threads where people have referenced 1cm as the threshold, meaning anything less than 1cm is good, more than 1cm and you might start looking at post-chemo options like RPLND. How important is this threshold?

For example, I have a 25cm tumor in my right retroperitoneal--or at least I did have one, I've gone through 2 rounds of EP and after the first round, I could no longer feel the tumor pushing on my stomach, organs, etc. It's pure seminoma (or at least that's all we found in the biopsy). It's hard to imagine this 25cm mass shrinking to under 1cm with all the scar tissue, necrotic cells, and whatever else is left around, but is that a reasonable or expected outcome?

Or for larger germ cell tumors like mine, would the threshold be different?

[Pwsuba]

I’m not sure on the sizes, my original tumors were ~10cm after chemo. IMHO the RPLND was easier than chemo.
However I would say focus on the EP rounds left. One step at a time.

[dustumor99]

How big were the original tumors? Was it pure seminoma? And I'm assuming you did 4xEP or 3xBEP?

Very sound advice on one step/one day at a time. I have to remind myself of that sometimes, it's easy to get lost looking at the whole experience/process, but so much easier to process when I just think about what I need to do today.

[Pwsuba]

I was non-seminoa. I was dx 09 3xbep 1xep I wish I could remember but I think one was 15cm the other less. Both shrunk a bit but I wanted them out in any event.

As I’m going through a late relapse I am very much one day at a time mindset. And of course every day is a gift.

But relax let the chemo do it’s thing, you’ll be fine. Then after chemo figure out the next step. Tackle that. If it is RPLND the name is scarier than the action.

And since I said I’m late relapse (7.6years clean) odds of late relapse is LESS than 2%. So once you’re cured now you’re good.

[biwi]

Yeah, if that is 25cm and not 2.5cm then I would probably mentally plan on a post-chemo rplnd, and be pleasantly surprised if you don't need one.

[dustumor99]

Yes, unfortunately that's 25cm and not 2.5cm... At least I have a cool story to tell when all this is said and done, hah!

Can't say I'm not nervous about RPLND, I've never had surgery, not even an orchiectomy because of the size of my tumor and the need to give myself relief from the tumor was deemed more important. But as we all learn with cancer, no need to worry myself with possible outcomes...

[AussieDan]

Mine was 20cm (you win!) non-seminoma and they were initially hoping to avoid RPLND. I got my tumour markers back to normal during 4xBEP and the pain of the tumour went away for a little while but the scan following chemo revealed likely teratoma (which wasn't in primary pathology) so RPLND was required. I've now had 3 RPLNDs and five other ops... you get used to it but it's not fun.

If they're confident you're left with just scar tissue, necrosis after all this they may just watch it for a bit but surely you need the orchiectomy sooner rather than later?

[dustumor99]

Hi AussieDan,

I'd high five you if I could, large tumors for the win!

I'm actually not sure about the orchiectomy. My doc at MD Anderson thought the tumor was more important and I think was worried about my health doing a simple surgery like this. I was dealing with tons of nausea and a lot of pressure on my organs, and an inability to eat, which probably would have made recovery more difficult even for something simple like orchiectomy.

He said when we're done with 4xEP, in his words, "we'll need to decide what to do with the testicle." He said that, in his experience where chemo is done first, they extract the testicle and find no signs of cancer because the chemo has destroyed it. So it seems like its an unnecessary operation, yet so many doctors don't hesitate to do it because it's the normal prescription for someone like me. Basically, he sounded like he was on the fence with it.

That said, I'm certainly not opposed to doing it if he recommends it, I think I'd rather not take the risk, and I'm also wondering if normal scans would pick up on it, or if I would need to order an additional testicular ultrasound every time I follow up for my scans.

Good luck to you with your progress, that definitely doesn't sound fun with multiple RPLNDs and operations, but sounds like you're in good spirits. I still find it amazing how the human condition allows us to adapt to things like this over time and gain new perspective, even when we sometimes feel like we're going through hell.

[biwi]

Removing the testicle after chemo is relatively common in high volume or higher risk disease cases. In those cases, hitting the metastasis quickly is more important than removing the primary, since the primary is easily removed later on.

edit: see here: https://www.ncbi.nlm.nih.gov/pubmed/11989561

[Davepet]

25CM?? That is larger than a basketball! Are you sure you didn't miss a decimal point?

[dustumor99]

I promise I’m not missing anything. I’ve read stories of retroperitoneal tumors over 30cm, so it’s not completely uncommon. My stomach, liver, aorta, etc can all attest to the fact that it was massive.

It’s been a crazy ride, I’m now through 3 cycles of round 3 of EP, just 1 more round of EP after this week. This is my first time doing outpatient chemo and it’s so much better than being stuck in the hospital!

[AussieDan]

Sounds like you, your people and others here have a helluva lot more knowledge than I do about when the orchiectomy should be done in cases such as these so I will trust their judgement.

When my teratoma got to 20cm, I was in a similar situation with the pressure on organs and not being able to eat (less than a handful of food was the most I could get in). I would vomit if I got full, once from a simple bowl of soup... I was like surely I can finish a bowl of soup so I kept going after feeling full and then brought it all up. I'm sure I wouldn't have lived that much longer if they hadn't been able to get most of it out on the second RPLND attempt.

I'm not someone who ever thought I was capable of enduring things like this but when you are faced with little choice it turns out you can surprise yourself. Good luck with the last round of EP, keep in touch.

[dustumor99]

I wrapped up my 4xEP last week, currently on day 8 of my cycle, and have been reading up on tumor size post chemo. My biggest question has to do with RPLND and what triggers it. Some seem to suggest RPLND should be automatic if the tumor is above a certain size, others suggest observation, or if there's any activity in PET, etc.

I found an interesting study on this that I thought I would share since I seem to be the oddball here with the crazy large tumor, in case somebody else stumbles on this thread. While this doesn't directly speak to large tumors like my 25cm football, it does address one interesting point:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3904480/

The policy of the Indiana University Group33 is to observe patients with stable post-chemotherapy masses. The SIU/ICUD Consensus Meeting on Germ Cell Tumors suggests that even residual masses larger than 3 cm in diameter should be referred to close observation with all radiological tools.34

So it sounds like size shouldn't really be an indicator, assuming the tumor has responded to chemo. So in my follow-up PET, I probably won't be sweating (as much) about it being under 1cm.

[Mike]

With Seminoma, assuming that tumor markers are normal, if the residual mass is > 3cm then they will usually do a PET scan 6 weeks or more post chemotherapy and if it is positive a surgical resection/RPLND will usually be done. Sometimes biopsies are also possible but even then resection is usually preferred. If the PET scan is negative then they will usually monitor things with surveillance. If the residual mass is 3 cm or less, then they will usually monitor things via surveillance.

I am guessing that if the residual mass is large and interfering with other structures because of it's size then perhaps they would remove it regardless if it is PET negative. However, I am not a surgeon.

Mike

[Mick]

I asked Dr Einhorn a similar question regarding my sons 15 cm Seminoma tumor and he responded that a PET scan should be done 6 weeks post last chemo. If the standardized uptake value is 4 he strongly suggested seeing him at Indiana University for possible surgery. My sons residual tumor was and still is 5cm but it is considered scar tissue and no surgery is needed. He has had 2 CT scans and 1 X-ray plus bloodwork (all normal) since finishing chemo last October.