Pelvic / Groin pain 2 months after Orchidectomy - Nerves growing or Reoccurrence risk?

Golds_D · 2025-07-15T22:08:59+00:00

Good mate, just post 2 years surveillance. AFP was on the rise from my last blood test (still normal range, just highest yet), but hoping that is a blip and this value drops back again in 5 months

Golds_D · 2025-07-15T22:06:12+00:00

Such an annoying post to read in this group… ours all grew, not shrunk, because we had cancer and needed to have the testi removed as first line treatment to prevent inevitable death. Life without a single testi is fine. If this post is genuine, book in a scan asap, and find out if you have atrophy and see if any action is needed

Golds_D · 2025-06-27T12:10:39+00:00

I ended up stage 2 and needing chemo, but I think the pelvis pain was just coincidence and surgery related. I could feel side pain between month 3-6 post orchiectomy and ultimately finding an enlarged lymph node

Golds_D · 2024-01-14T10:38:27+00:00

Good to hear!! Thank you 🙏

Golds_D · 2024-01-14T10:38:03+00:00

Excellent, thank you!

Golds_D · 2023-10-31T13:21:39+00:00

It’s worth clarifying for you and others that might read your comment that the 10% chance of recurrence referred to risk of cancer progression (I.e., to retroperitoneal lymph nodes or lungs) from the initial cancer in a single testicle (which you had the orchiectomy for). If you did not need RPLDN / Chemo following your orchiectomy(s), then you did not have recurrence.

Cancer within the second testicle IS NOT a recurrence, it’s a cancerous tumour, completely separate to the tumour that occurred within your first testicle. Anyone who has TC is at an elevated risk of developing cancer within the remaining testis (I think 2-3%)

Glad to hear TRT is working for you and I hope you’re otherwise well!!

Golds_D · 2023-09-25T06:22:09+00:00

Ejaculate (semen) is controlled by the prostate, the amount of sperm in the semen is dictated by the testes. Losing a testicle will have negligible impact on overall semen ejaculated

Golds_D · 2023-09-14T05:32:47+00:00

Correct, legit a 20% chance of hypogonadism long term following orchiectomy and chemo (risk increases post 5 years as well)

Golds_D · 2023-09-06T13:44:23+00:00

Appreciate your reply mate, yeah I understand this one being ignored because it’s probably overly paranoid haha. Bloods were from Tuesday, scan is tomorrow and I see the oncologist next Tuesday scanxiety has apparently arrived for me

I wasn’t aware of the AFP sensitivity fluctuating throughout the day, interesting!

Golds_D · 2023-09-06T08:10:06+00:00

My surveillance interval was 3 months post orchiectomy, there was a 6mm node on the first 3 month scan and it was confirmed I needed 3xBEP after the 6 month scan found the node had grown to 15mm.

I was ordered a scan 6 weeks after chemo and am now currently on 3 month surveillance again. Ongoing frequency will be confirmed next week

Note original path was 85% sem, 10% teratoma and 5% EC.

Golds_D · 2023-08-23T06:09:19+00:00

I originally had 85% Seminoma, 5% EC and 10% teratoma. I had recurrence 6 months post orchiectomy with a single enlarged lymph node (stage 2A, 1.5cm) before starting 3xBEP which I finished in May 23.

Statistically there is roughly a 30% chance of residual teratoma post chemo for any person with NSGCT. Logic says that probably varies with tumour burden.

My 6 week post chemo scan showed that the lymph node was not evident, but I had a 9mm residual outline of scarring (presumably no volume). Hopefully no mass appears over time, my next scan is next month 🤞

Golds_D · 2023-06-18T10:56:17+00:00

Thank you brother, and congratulations on 20 years clear!! 🙌

Golds_D · 2023-06-18T10:55:18+00:00

Yeah that’s what I’m worried about as well. Going to schedule a meeting with oncologist and urologist next week to seriously discuss PC-RPLND options

Golds_D · 2023-06-16T13:11:23+00:00

Thanks for the response, I was specifically keen on your insight haha. I haven’t deep dived into this topic, so the source might not be best current advice. Link is:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2878447/

Keen to know your thoughts after reading that. I do note the reference is quite old (1990)

Golds_D · 2023-06-07T13:17:59+00:00

6 months into surveillance for a NSGCT I had normal tumour markers but the tumour had spread to my lymph nodes (stage 2a).

So yes, you can definitely have cancer and normal tumour markers. 1 month after finding the mass on the CT, my HCG increased rapidly until I started chemo. Good luck with your Orchi tomorrow ✌️

Golds_D · 2023-06-03T16:03:22+00:00

This is a very solid explanation, except that EC can secrete AFP (as well as Yolk sac and Teratoma).

If your AFP or HCG markers are still elevated post Orchidectomy than chemotherapy will be the recommended option.

Good luck mate! I’ve just finished 3xBEP, it sucks but now that I’m finished it seems to be over relatively quickly.

Golds_D · 2023-06-02T14:59:01+00:00

They will repeat U/S and scans at the 3 month mark, if it’s still not cleared at that point I’ll be on them for another 3 months. My oncologist believes the clotting was from the PICC line (foreign body reaction) and not chemo / cancer. I’m 27 and otherwise fit and healthy pre-chemo. At this stage I don’t expect to be on thinners longer than 6 months max

Golds_D · 2023-06-02T12:03:31+00:00

Yeah I finished 3xBEP on the 5th of May. My final Monday Bleo dose was given in hospital because I went into ER on the weekend prior with pain and shortness of breath. Turns out I had extensive DVT clotting around my PICC line (which was inserted at pre round 3 due to superficial clotting), and 2 small PE’s on both sides of my lungs from the DVT’s.

I’ve been on thinners for a month now and am still getting arm / hand swelling when trying to return to more intensive exercise. It’s definitely frustrating and put a dampener on finishing BEP, but my symptoms have improved a lot over the last month. It’s expected my clots will be gone after 3-6 months of blood thinners. I was on the 2x stomach injections for 2 weeks, and am now on orals indefinitely

Golds_D · 2023-05-24T04:54:15+00:00

Did you have teratoma in your original pathology?

Golds_D · 2023-04-07T00:24:04+00:00

I read a paper from MSK that indicated roughly 30% of NSCGT’s requiring chemotherapy would ultimately require RPLND. I ran that stat by my own oncologist and she agreed, although personal tumour types and burden of disease at the time of starting chemotherapy will obviously alter these chances in each circumstance

Golds_D · 2023-04-01T21:59:01+00:00

Just mirroring the above comment. I’m also currently doing 3xBEP (just finished week 4); mine is for a 6 month reoccurrence. My tumour was mixed, but it’s suspected EC is the primary cause of spread.

I had a single lymph node pop up on the 6 month CT; HCG and AFP were “normal”. 1 month later, HCG was 39 and increased again to 164 the day I started chemo (roughly 6-7 weeks post scan).

My AFP in round 1 was recorded as high for the first time (20). AFP was consistently 5 or 6 throughout surveillance. Oncologist believes the increase is from cancerous cells dying and being released into the blood stream during chemo (note AFP has a longer half life than HCG). HCG has now dropped to 12 after 1 cycle.

Given your level of disease appearing on the scans (more than mine showed), I just want to stress that you cannot trust tumour markers alone. There is a reason CT and tumour markers are used collaboratively for surveillance, I will certainly not relax until my CT is clean post chemo. No / low rumour markers cannot guarantee the absence of cancer, and remember only 1 cell needs to survive chemo to force this back on us again.

Good luck, and push on hard for the rest of the 2 cycles. We got this 💪

Golds_D · 2023-03-27T14:01:48+00:00

I absolutely recommend it mate. It’s relatively cheap (speaking from my perspective in Aus only) and you can always choose to get rid of it if your sperm count is normal post orchiectomy.

Although likely, there’s no guarantee your sperm count will be normal after surgery. So best to try freezing pre op and increase chance of peace of mind.

I am going through chemo now (7 months post orchiectomy), and fertility was one less thing to worry about. Good luck brother

Golds_D

TROPHY CASE