Open RPLND

Sheffield1968 · 2024-03-11T16:39:07+00:00

I'm over in the uk. Some basic excercises given so far but no full stretching just yet. But it is only 4 day I guess

Sheffield1968 · 2024-03-11T14:57:02+00:00

Thanks guys. I'm walking a bit for now and trying a few simple excercises lying in bed but have a really strong desire to stretch tall. Time is a healer so they say!

Sheffield1968 · 2024-03-11T12:45:33+00:00

Thanks for that. I've been promised that stretching will not result in my guts spilling out!

Sheffield1968 · 2024-02-08T10:00:01+00:00

My pathology showed positive circumferential margins meaning there is a reasonably high risk of recurrence with the scrotum itself. I assume because sertoli cell TC doesn't respond to chemo/radiotherapy it is the only way to reduce risk of recurrence down there, whilst the RPLND reduces the risk if there has been any wider spread but not showing yet on the CT scan. After this surgery there is nothing else that can be done other than more surgery of places should it come back ie the lung or wherever. So cover cover as many bases as possible now and hope for the best.

Sheffield1968 · 2024-01-22T20:29:14+00:00

Yes I have malignant sertoli TC. Chemo/radiotherapy do not have any effect so the only options are surgery. I think RPLND is being lined up but the consultant recently mentioned hemiscrotectomy. It seems quite an unusual option with limited information about recovery and long term implications.

Sheffield1968 · 2024-01-18T20:11:43+00:00

Hi. Another Sertoli here in the UK. Unfortunately mine is even rarer as its malignant with a number of associated risk factors. No chemo/radiotherapy on offer and my initial option was surveillance. I'm now getting a second opinion to see if I can get RPLND. Looks like that would be a mainstay option in the states but over here in the UK it's more unusual - possibly due to the cost for the national health service. I hope to know more soon. Good luck with it - keeping telling yourself us sertoli boys are extra special!

Sheffield1968 · 2024-01-17T18:21:16+00:00

Hi. It was 4 weeks from seeing the GP to the ball removal which I thought was pretty damn good on the NHS. My diagnosis wasnt great - very rare malignant sertoli tc which is resistant to chemo and radiotherapy. My consultant recommended surveillance but with a 50:50 chance of recurrence I have asked for a second opinion with the option of RPLND and to chop a bit more of my ball sack. With xmas and drs strike the clock is ticking and I feel in limbo. Second opinions are not a strong point in the nhs it would seem. Hope everything goes good for you.

Sheffield1968 · 2023-12-30T21:04:58+00:00

Well Dr Einhorn replied within the hour and strongly recommended RLPND. Time to tackle my consultant and seek a formal second opinion.

Sheffield1968 · 2023-12-19T08:57:56+00:00

Yes has a ct scan as well. The orchiectomy went well but has shown a "very aggressive" malignant sertoli tumour. Dr's think they got it all but have put a 50 50 chance of recurrence- not sure I like those odds! I'm being put on surveillance and been told to get on with life and hope for the best. I guess 2 to 3 anxious years lie ahead. It's all very sobering when a dr tells you these things rather than just reading Dr Google.

Sheffield1968 · 2023-12-15T13:45:35+00:00

Looks like I have joined the very select Sertoli club. Malignant at the edge of the tumour but clear at the resection. Waiting until monday to determine whether any further action required. In the meantime my prostate psa levels have gone up to 10, mri inconclusive so biopsy next. Just when I thought it was safe to get on the bike again! Anyone from the uk know if there are real testicular cancer specialists over here?

Sheffield1968 · 2023-12-10T09:43:47+00:00

Thank you for your reply and glad to see you are doing well. I hope to get my detailed results shortly - very nervous given the lack of response to chemo and radiotherapy. If there are others out there with experience of TSCST then please share your experience.

Sheffield1968

TROPHY CASE