Ask your questions to our Clinical Nurse Specialist Sue, who has lots of experience...
I've been following a lot of the topics here and they've been great to follow.
My story so far:
Last March I was diagnosed with Stage 2b mixed germ cell tumour, I had the op to remove the little fella followed by 4 lots of EP. The markers all went down to basically zero which was great news.
Along with the faulty testicle I had 2.4 cm necrotic para-aortic lymph node, after chemo was done I had a pep-ct scan performed where it show that it had shrunk to 1.3 cm's with no definite FDG uptake.
I had a further ct scan last month showing that the node had reduced to 1.2 cm's, which was good news all round.
Now to my current situation:
A couple of days a go I felt a bit of discomfort down stairs on my remaining little fella, thought it's best to go and get him checked out. Thankfully the ultrasound came back clear, however my makers have risen slightly (AFP 4.10 & HCG 5.60). My oncologist has recommended I have surgery to remove the node immediately.
I understand it's quite a big op, do you all think it's going a bit gung-ho to do it without any further tests or to wait to see if the markers stay the same or go down?
Sorry if I've rambled just been a bit of a shocker these past two days!
Ps. Should probably add I live and work in Thailand, and although I've found the medical staff over here, all in all great, it's always nice to hear comments and advice from the homeland.
Interesting to hear your story, and glad you found us.
So other than some very marginal blood tests, everything else points to no problem - PET CT Scan was clear etc.
If those numbers were just one or two digits lower then there'd be no worry. For staging TC they have bands for the numbers, something like < 5000, 5000 - 50,000, >50,000 etc, and on those scales a change of 1 or 2 in a single digit is pretty much in the noise.
Having the lymph node removed, even as a laparoscopic RPLND (keyhole) is still more surgery than anyone would like. If it were me, I'd like to see a repeat of the blood test (quick and cheap). An AFP < 6 is considered normal by most labs, and bHCG < 5. Maybe they got the numbers wrong, maybe it was an off day. Another option is to ask Prof Einhorn whether it is significant enough to jump in to surgery.
I have a 3cm residuum from a 14cm para-aortic pure seminoma lymph node, and its been there 6 years now. PET-CT showed it to be scar tissue, hope this is all the same for you and that this is just a fire-drill.
Thanks for your response.
Once last thin Greg,
You mentioned Prof Einhorn, feel a bit silly asking, who is he? And how would be able to get in touch.
I was just about to respond to your first response today to say that in your position I'd e-mail him.
Prof Einhorn is the godfather of testicular treatment - a lot of the treatments we have today were developed and refined by him. He's a wonderful chap and has a seemingly infinite amount of time and compassion to respond to e-mails from all over the world.
I'll add you as a friend on here to pass his contact details. I would suggest that even though he always seems to respond, be succinct, give him all the facts you have, and no rambling!! If you want help composing the e-mail or a proof read, then send it to me by PM here.
That's awesome, thank you so much.
I've sent you a pm.
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