Who would have thought it

[phillymorris]

11 years clear since my mixed stsge 1 with BEPX2 and boom I have a scan on a slipped disc in my spine and they find enlarged parortic lympth nodes. They are 3 cm , bloods normal and scan on testicle is clear which in its self has got my oncologist baffled. Is it from the first cancer 11 years ago so the BEP did not work, is it a new cancer from remaining testiscle which is clear on scanning ( let's not forget my older cancer was right sided and this is left ) and to cover all bases has put me in got TIP chemo. Prof Einhorn and Dr Nichols suggest 4xEP, so yes I am confused but prof Clarke has changed to EP X 4. So start on Monday

[Daniel335]

If it was a new cancer, more than likely you would have some kind of mass on your remaining I believe. It is rare that testicular cancer recur so far into the future. But the slight chance of it happening is still there. Good luck with starting the 4xEP soon. Hopefully that can knock down those lymph nodes completely!

[phillymorris]

Thanks Dan , Yep I know a far few lads who have lost both, if mine is ocullt seminoma then yes I suspect there must be seminoma in the other testiscle even if it's unseen.

[Davepet]

Are they not even considering that it might be teratoma?

[Javan]

Philly, with all you have done advocating for so many others, be sure you let others advocate for and help you through this. You've been an inspiration to thousands and I'm sure that will continue to be true.

[JeskiM69]

Wow...that's nuts !

I am with Dave. Considering your 1st was Non Seminoma it may yet be a teratoma...in which case chemo will not work.

Another thought is that it may be a second (new) cancer; a non-testicular primary.

Is there anyway to get a biopsy before doing chemo ? I'd hate to get started on chemo only to find out that it was a teratoma and you need RPLND or something to that effect.

- Matt



....and yes the pun was intended.

[phillymorris]

Hi guys, yes the biopsy shows seminoma . And cheers for the kind ccmments . It's a strange one yes . If they can find a primary then it would of course be so much clearer. Let's be honest if it's from original tumour 12 years ago I would probably be dead at it was a mixed tumour

[phillymorris]

Are they not even considering that it might be teratoma?

Sorry yes it's seminoma , biopsy ct done

[J1981]

Hi Phillymorris.

I'm in a similar situation. 4 years post 2xBEP my markers were ever so slightly elevated at 28. A PET scan uncovered 3 slightly enlarged nodes, only 6/7 mm each!

I have just undergone 4 rounds of TIP and am now three weeks over it. Whilst most recent PET scan shows a total response, I am now being put forward for a RPLND.

Good luck with your course, here's hoping it goes well for yoo.

Joe

[phillymorris]

Hi Phillymorris.

I'm in a similar situation. 4 years post 2xBEP my markers were ever so slightly elevated at 28. A PET scan uncovered 3 slightly enlarged nodes, only 6/7 mm each!

I have just undergone 4 rounds of TIP and am now three weeks over it. Whilst most recent PET scan shows a total response, I am now being put forward for a RPLND.

Good luck with your course, here's hoping it goes well for yoo.

Joe

well done to you, my markers are normal and this time is seminoma so I have a decent chance of recovery, even if they can't find primary

[Davepet]

Well, since it is seminoma, it is possible it is a recurrence of your first primary. Although pretty rare, especially after chemo, seminoma *has* been know to recur at 10+ years before....

Dave

[phillymorris]

That's what's made them wonder, this is left sided preortic nodes enlarged and original was right testicle

[Davepet]

That's what's made them wonder, this is left sided preortic nodes enlarged and original was right testicle

That is a bit unusual for a recurrence, not sure if it's unheard of, though. Extra gonadal germ cell tumors, while quite rare, might explain this, it certainly seems like what may be happening here:

http://tcrc.acor.org/egc.html

Dave

[RWA]

Hi Philly not sure if they have done IO yet, but I had large paraortc nodes left side and no eviddence of testes tumor by ultrasound. However, when they performed IO pathology they noted evidence of Burnt out Tumor. if you had the IO already this is likely a mute point. if not Burnt out primary could be another consideration of your case. Best wishes in your further treatment.

[phillymorris]

There doing IO AFTER RWA, on EPX4 for a while , nodes are 3cm so it's not to bad, I have calcification in the trsticle which as we know can distort a clear diagnosis on ultra sound