Ultrasound on second, remaining testicle

[Davepet]

Tough call, my advise would be to try to locate an "in network" urologist willing to contact the IU docs to get up to speed on your case. You don't really need the best taking care of you, but having their knowledge guiding things would be good.

[Mike]

If you are looking at doing a testis sparing surgery then it isn't just the surgeon. The pathology department needs to have the availability and hopefully experience with inter-operative frozen sections, so that may be something to ask about if you are looking to go elsewhere. If you were just doing the orchiectomy, then I personally wouldn't be overly concerned where I went.

Mike

[GD1345]

Thanks. I definitely feel better knowing time is not a major factor. I found Dr. Michael McGuire (https://www.nm.org/doctors/182101818...-s-mcguire-mdc) who is part of Northwestern Medicine. I have a Telehealth appointment with him next Wednesday,

Meanwhile, I don't feel any changes in my self-exams.

[GD1345]

I had my appointment with Dr. McGuire this afternoon. He seemed awesome. He read over my records from IU-Health and told me basically the same plan that Dr. Cary had proposed. I am scheduled for the outpatient surgery next Tuesday. The plan is to do the pathology during surgery to determine whether it is cancerous. If it is cancerous, then he will go full orchiectomy. If it is not cancerous, then he said he will leave the testicle inside. He did say that there is a 10% chance that the full pathology shows a later positive result for cancer and I would need to return for a full orchiectomy again.

[GD1345]

Update: Today, I had surgery for partial orchiectomy with the possibility of full, left orchiectomy. And, it turned into a full removal of the left testicle when the initial pathology test, done during surgery, showed cancer. I am awaiting the full pathology report. The recovery, as of now, does not seem as bad as the first orchiectomy and definitely not as bad as the RPLND surgery.

Next week I will meet with my doctor for follow-up and to discuss TRT. I am bit worried about life going forward. I have read from others on here that things aren't super different once on hormone therapy. But, I still have specific questions, like sexual function, facial hair growth, bone density.

[Davepet]

Seems like in 90+% of the cases reported here, the frozen section results in a full I/O, I could be wrong. In any event, as long as TRT is used as prescribed, bone density, facial hair & sex should stay the way they were before, you shouldn't even notice a difference, however I would try to discuss TRT sooner than a week, I went two weeks without it and that second week was hell. I will never again find hot flash joke funny....

[GD1345]

Thanks for the positive input. I appreciate it and will keep you all posted on my progress. One thing I plan to ask at my follow-up is if this will change the scheduling of my surveillance scans for the initial year. Currently, I am not due for tumor markers until July and then scans until September, Since this past Monday, 06/09, cancer was found in the left testicle, does this change the pace of surveillance scans even though I had clear scans back in last month of May?

[GD1345]

I got the pathology report on the left testicle that was removed this week: Residual embryonal carcinoma with focal lymphatic/vascular space involvement.
Pagetoid spread into rete testis.
Negative for spermatic cord involvement.
Margins are free of involvement.
See testicular tumor checklist and comment below.




1. The tumor is positive for cytokeratin AE1/AE3, CD30, D2-40 (weak), and PLAP (focal) and negative for CD117, bhcG, and AFP, supporting the above diagnosis. CD117 and PLAP highlights areas of intratubular germ cell neoplasia.
2. Immunostains for CD30 and CD31 confirm the presence of tumor cells in lymphatic/vascular space.

[Davepet]

Technically, you have had two primary cancers. It IS unusual they were so close together, although we've seen cases were both testicles were affected at the same time. My guess would be a reset in the schedule to coincide with #2, but I'm no doc & with a clear scan in May, you can be pretty confident that you don't have any spread, even from #2. I would think surveillance should be an option still.

[GD1345]

Okay, thanks. I will keep people posted here with what I hear from my follow-up on next Monday. I also emailed Dr. Einhorn to get his thoughts as well since he has been treating me, too.

[Davepet]

Sounds like you've got a good plan.

[Mike]

I would assume, if scans and tumor markers are negative that you could enter into a "new" surveillance program with more frequent monitoring but I am not sure, given that you have already had an RPLND so that may play a role in the schedule.

The path showing IGCN in the surrounding tissue is like a 50% odds of it turning into cancer in 5 years so even if they could have salvaged part of the testicle it likely would have meant radiation therapy with long-term effects on testosterone. Personally, as hard as it is, I would be happy to have had it removed.

If you have access to NW, Dr. Robert Brannigan there is a top thought leader on testosterone and a nice guy as well. https://www.feinberg.northwestern.ed...html?xid=10530

Mike

[GD1345]

Thanks for the doctor recommendation. I will see what happens at the follow-up appointment on Monday with my Northwestern urologist who did the surgery last Tuesday.

I don't know what IGCN means?

On the pathology report, the lesion on the left testicle was classified as T2Nx. When I looked up the meaning of this, it says that "T2" means spread beyond testicle and Nx means unknown if cancer has spread to nearby lymph nodes. If this is true, is there any way to have indication of where the cancer would have spread? Is it possible that the doctor labeled it "T2" because the lesion was on the outer layer of the testicle and not actually inside of the testicle?

[GD1345]

Oh, I forgot to include in the previous post. that Dr. Einhorn emailed me yesterday to share his input after he saw the pathology report from my left testicle. He recommends that the continued surveillance schedule is sufficient based upon my 05/12 surveillance scans and bloodwork.

[GD1345]

I met for my follow-up today. The tumor in my removed left testicle was Stage 1 nonseminoa, embryonal carcinoma. There is no sign of metastasis elsewhere. The urologist recommended a new round of surveillance scans in August including bloodwork, CT abdomen, and chest x-ray.