Recurrent seminoma

[BrendanF]

Hello everyone. I'm so glad to be posting to this forum which was such a great reference when I was diagnosed with stage Ib seminoma in June 2014. I can't imagine how much time and effort it saved me finding answers to the questions I had regarding what, at that time seemed like a scary and mysterious condition even though I came to find that my case was routine and very treatable. As it turns out that experience was valuable preparation for where I am now with recurrent seminoma with distant metastasis.

With my first bout in 2014 I decided to be treated by a local oncologist after a very kind response from Dr. Einhorn and a consult at Columbia. After the right orchiectomy I was treated with 1 dose of carboplatin with hopes to put it all behind me. Follow up CT scans and bloodwork were clear.

When my tests were done for this recent recurrence I sent an email to Dr. Einhorn again and he said "this is a very unusual case."

I have metastasis to the left clavicular lymph nodes and left pelvic lymph node. A large metastasis in a right aortocaval node (the PET report says 5x5cm but I can easily palpate it and it feels like it's at least 10cm long). A cyst on the left kidney. A 1.6 cm metastasis on the right adrenal. Metastasis in the subcarinal and paraesophageal region with a 1.8 cm met. Abnormal metabolic activity in the hila. A possible lesion and necrosis of the posterior right lobe of the liver.

Strangely(?) tumor markers are normal. In 2014 I had elevated HCG but not now.

Because I presented right before Christmas (and due to everything else that's happening) things have moved slowly, but I had a port put in this past Wed. and I'll be seeing a testicular and kidney cancer expert at Sloan Kettering Memorial next week, so hopefully treatment is not far off now. I have no idea what it will be but I suspect it will not be easy. Looking forward to hearing from others and sharing as this unfolds. Thank you all!

Brendan

[BrendanF]

I saw a couple papers that mention seminoma which secretes androgen. Both of my cases (2014 and present) were accompanied by a significant elevation in testosterone, so much that I was able to stop replacement testosterone and still have a normal testosterone level (I have primary hypogonadism). Both times I didn't recognize this as a potential warning sign and wishfully thought that the primary hypogonadism was somehow healed. In the first case in 2014 I stopped taking testosterone a few months before the seminoma diagnosis and my total testosterone was around 500 ng/dL without supplemental testosterone. After the orchiectomy I became depressed, tired, confused, irritable but knew enough to have my testosterone level checked. It had dropped to 90 ng/dL.

Again, last spring when I saw my urologist he said my total testosterone was 600; higher than the usual 400-500 I expected, so I decided to stop taking the testosterone as I was out of work due to the lockdown and figured I could hazard an experiment. I was ok for around 2 months but then the hot flashes and tiredness started, so I got back on the testosterone gel. My most recent testosterone bloodwork from early December 2020 shows my testosterone level was 1135 ng/dL. Unfortunately, I was not notified of this and only caught it myself when looking over my bloodwork as I was passing it on to Soan Kettering yesterday. Needless to say, I didn't apply testosterone gel today!

[Davepet]

I really don't know what to say but I think it might be wise to biopsy one or more of those masses to be certain of what you are dealing with. It might be a different type of TC, or even not be TC at all.

[BrendanF]

Thank you Davepet. I looked back and realized that I didn’t mention the biopsy or pathology. I just added a signature that includes that. Apologies for the confusing post.

Fwiw, before the biopsy and PET, my GP and local oncologist who ordered the tests both suspected lymphoma.

I had 2 left supraclavicular lymph nodes biopsied and the pathology says “metastatic seminoma in two lymph nodes with extensive necrosis.â€� This was from a local hospital. I think Sloan Kettering has the slides now. I’m awaiting an initial appointment with them this Thurs.

[Axel]

Hello, BrendanF. Welcome to the forum, although I'm sorry to welcome you in these circumstances. Your case is indeed a peculiar one.

It's odd that a relapse would occur after such a long time (although it is possible) and it's strange that your seminoma elevated the serum HCG in 2014 but not now. Is it certain that this is the same seminoma from back then? It is possible for a second cancer to develop, unrelated to the previous one. TC can have its primary in the retroperitoneum, not just the testis, and could have spread from there this time. This is just my speculation though. I'm sure the experts at MSKCC will have the answers about what you're dealing with soon enough and bring more clarity to all this.

Even with numerous metastasis, there are many treatment options which are highly efficient, especially for seminoma. I know how devastating it is to be in this situation, but keep in mind that TC is curable. Even if it won't be an easy one, it's a fight you can surely win.

[BrendanF]

Thank you for the encouragement Axel. It is heartening to see recoveries like yours.

After a second opinion this seems to be a somewhat less peculiar case. I had the consult with Sloan Kettering today and the Dr. and their radiologist both disagree with the original PET reading wrt to reported adrenal metastasis. They both think that the metastasis is of a lymph node adjacent to the right adrenal. They observed patchy sugar uptake in the liver but suspect it is something other than cancer. So they recommended a CT or MRI specifically targeting those areas and that I should proceed with 4xEP with my local oncologist and if a CT or MRI shows actual adrenal or liver involvement the treatment should switch to 3xVIP.

[Mike]

So glad to hear that you saw the tear at MSKCC and that their interpretation is a bit different from your original team. MSKCC sees a ton of TC patients per year and their opinions are so important. So are treatments just pending the more specific imaging studies?

Mike

[BrendanF]

Hi Mike, thank you commenting and helping me to register for the forum!

The recommendation from MSK was to start 4xEP and not wait for the CT or MRI of the adrenal and liver. I believe the plan is to have imaging after the first week of EP which starts this coming Monday.

Though, there is some pain, and seems to be some enlargement of the liver, like a sensation that it’s pressed against the lower right ribcage area. Maybe it’s not cancer as they say, but something seems not right there. It may be that some tumors have burned out there because in recent days there’s a bit more pain and less of the enlargement sensation.

Fwiw, the larger of the nodes in my neck was almost entirely necrotic by the time it was biopsied, it felt and appeared smaller and softer the day I went for the biopsy than it was when I first noticed it 3 weeks earlier.

[TampaMatt]

Hey BrendanF. I'm new to the TC Resource Network but I am in a similar situation. I was first diagnosed with a pure seminoma nearly five years ago now and had a recurrence into a retroperitoneal lymph node, which I had proton treatment for start 5/19. The cancer must have travelled microscopically before the proton treatment to lymph nodes in my chest and axillary regions. I now have two enlarged axillary lymph nodes, two subpectoral lymph nodes, and a supraclavicular lymph node. They range in size from about 2 cm to close to 4 cm and I started BEP x3 nearly three weeks ago (CT scan was 12/28/20).

I am seriously contemplating switching to EP x4 as I barely passed my Pulmonary Function Test for the FEV1/FCV with 71% and feel that my breathing is already restricted yet they said they cannot hear any respiratory lag. Were you offered BEP x3 or did they automatically go to EP x4. Also, I know that MSK does post-chemo resections often but I'm assuming not for seminoma?

[BrendanF]

Hi TampaMatt, sorry for not noticing your post until now and for your recurrence. It is indeed unusual as far as I understand.

BEP was not offered to me because I'm in my early 50s and I believe 40-45 is the generally accepted cutoff age. Dr. Feldman at MSK did mention possible post-chemo resection depending on the size, I believe > 3cm. I'm somewhat encouraged after the first chemo week, the largest mass I have was actually palpable under my stomach muscle but I checked today and it seems to have shrunk significantly.

I hope you've already found an answer wrt to BEP by now, and if not that you will soon

[Davepet]

BEP was not offered to me because I'm in my early 50s and I believe 40-45 is the generally accepted cutoff age.

I am unaware of any age cut off for BEP, indeed I had it at age 55 as dis quite a few other 50+ on this board

[Mike]

Some physicians use a cut off of 50 to avoid bleomycin toxicity that can occur more frequently as our kidneys work less with age. MSK goes with EP almost exclusively, with good risk disease. Dr. Feldman at MSK has some work published on patients over the age of 50, so I know he is well experienced in that age population. He suggested using prophylactic neupogen/neulasta, for example. https://acsjournals.onlinelibrary.wi...002/cncr.28025

Mike

[BrendanF]

I’ve transferred to MSK for my last two cycles and after a second consult with Dr. Feldman (who is managing my case now) I will be switching to the carboplatin + etoposide (EC) and discontinuing the cisplatin due to the neuropathy and tinitus after only 2 cycles (I actually had onset of both during the first cycle).

Because of the transfer to MSK I’ve had 3 weeks off since the second cycle of EP and the neuropathy and tinnitus have lessened some but still remain. I’m told that it would be cumulative with the third and fourth cycles of EP and to a degree permanent. Given that I need to retain my hearing for my work, I made the decision to discontinue EP, which I’ve come to understand is a recognized treatment option for cases like mine.

The downside is that there is no significant data for cases that switched from 2xEP to 2xEC. An educated guess is 8-12% lower success than 4xEP. Also, the third line treatment would be TIP in a hospital and worse neuropathy and tinnitus. So this is a gamble, but it’s the one I’m making. God willing, I’™ll finish the 2xEC and not be back.

On a positive note, I had a CT scan after the 2xEP which was very positive which made it a bit easier to decide to go this route.

[Mike]

Best of luck on the switch and yes, no data that I am aware of but sometimes treatment is more of an art then a science and you are in great hands with Dr. Darren Feldman, he's an awesome person as well as expert TC doc.

Mike

[raincrow]

Wishing you good health and a speedy recovery!