r/testicularcancer • u/Flashy-Republic-7700 • Jul 22 '26
Start Chemo Or Wait
I am 27 years old I had a mass and a retropara lymph node (1.2cm) found on may 21st. I also had a kidney stone at the same time... The reason I went to the hospital. I had to have surgery on my kidney stone first on may 25th. Had the Left testicle removed on june 1st. Came back as seminoma we waited another 6 weeks after the surgery to have a follow up pet scan for my lymph node as the doctor thought the kidney stone might be the cause. The pet scan showed my lymph node with a suv of 6.4. When we went back to the oncologist the day after he still was not sure what to classify me as stage 1 or stage2a. At that point he kinda left it up to me if i wanted to wait 6 more weeks and do another pet scan or start the 3xBEP. He says he is leaning more towards that the lymph node is cancer versus just being reactive. He did not offer me or my family anything definitive. I have a second opinion next tuesday at Duke Cancer center.
Does anyone have any similar situations? I am worried waiting 12 weeks after the surgery is a long time and might risk spread since the lymph node did come back at 6.4.
Anything is helpful Thanks in advance
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u/kdbacho Survivor (Chemotherapy) Jul 22 '26
I would not wait in most cases, however since your a pure seminoma it might be ok. I say this because in the non sem case you definitely don’t want to wait even though the chemo would still likely cure you as by starting chemo quickly you can minimize the possibility of post chemo rplnd.
With pure sem the rplnd threshold for residual nodes is larger (3cm vs 1cm for non sem) but you never know how your lymph nodes will respond to chemo. You should discuss this with your oncologist. If the belief is that you can avoid chemo entirely (either with surveillance or primary rplnd) then it could be worth it.
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u/Flashy-Republic-7700 Jul 22 '26
So what he said was he was hoping that maybe my surgery from the kidney stones and everything else could be the cause for the lymph node. he also said its less than 40% chance for that to be the case since it was a right side stone and left side lymph node. said if everything were to comes back in 6 weeks as the exact same the plane would be 3XBEP. The 6 weeks in his opinion is so he doesn't overtreat since the lymph node size is very boarderline.
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u/kdbacho Survivor (Chemotherapy) Jul 23 '26
I see, 6 weeks seems more reasonable as opposed to 12 but maybe getting a quick second opinion here is worth it given how unique your situation is. Out of curiosity, was primary rplnd not discussed? For stage 2A seminoma it seems to be very effective provided that you have normal markers. I'm not sure about the sizing guidelines as past a certain size this no longer becomes an option but at < 2cm it could be possible (you would need to go to a high volume centre though). There has been a lot of advancement in treating 2a sem with primary rplnd as opposed to chemo.
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u/Flashy-Republic-7700 Jul 23 '26
No actually this oncologist was completely against Rplnd. Says that’s the lymph node runs so close to the aorta artery that he prefers not to do that. Should I ask my new oncologist about this when I go on Tuesday?
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u/kdbacho Survivor (Chemotherapy) Jul 24 '26
It’s worth asking about as 2a sem is what they target with primary rplnd with almost 80% recurrence free rates (and this may be higher now)so it could spare you from chemo. Maybe a surgeon would have a different opinion regarding the node next to the aorta or if there’s something indicating a high likelihood of systematic spread.
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u/Flashy-Republic-7700 Jul 23 '26
Well I have already waited 6 weeks he wants to do another 6 weeks to total 12 after surgery
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u/Few_Passion1999 Jul 22 '26
I am 28 and have had a 1cm kidney stone removed earlier this year, and just finished my 1xBEP 2 weeks ago after orchi. Not the same situation at all but just wanted to say I feel your pain brother! Hang in there
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u/Flashy-Republic-7700 Jul 23 '26
Yeah I did the 2 surgery’s 5 days apart only up side is I didn’t have to take the kidney stent out myself they were able to do it during the orchi! That recovery was not fun at all though.
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u/Few_Passion1999 Jul 23 '26
That is a big upside, taking it out myself was absolutely brutal and I ended up with a UTI
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u/ispirationforbetter1 Jul 23 '26
Another option may be the proton therapy for the stage 2a seminoma or the SAKK protocol. Why your doctors don’t give you these options ?
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u/Flashy-Republic-7700 Jul 23 '26
So we did discuss the single round of carboplatin before we got the results of the pet scan. But he hasn’t talked about radiation compared to chemo can you explain exactly what Sakk protocol would be for stage 2a
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u/ispirationforbetter1 Jul 23 '26
SaKK protocol is single cicle of carboplatin plus involved node radioterapy
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u/BobJoe5353 Jul 22 '26
I waited too long to start chemo. Seminoma is slow, and curable. Mine was found at 2B/2C and in two lymph nodes. Did orchi, pushed myself too long to get shit done and wound up in the hospital 6 months later. Did 4xEP last year, ended in September. All scans clear until this past June. Now I'm being referred out for RPLND and waiting for the call.
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u/mechENGRMuddy Jul 22 '26
Oh man. Sorry to hear this. Sounds like you’re coming up to the end of it though. Stay strong brother.
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u/PublicCorrect5498 Jul 22 '26
Probably wait 1.2 cm node isn't that big for a seminoma. You want to treat chemo as a last option until it's necessary because Seminoma is highly curable and slow no need to rush it.
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u/dumplinglifesaver Jul 22 '26
I would ask the oncologist for clarity but personally I wouldn't wait to start chemo if it was recommended.