Testicular cancer

Affected by testicular cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Question about further surgery

Will2017
Posted by

Hi all,

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!


Cheers


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. 

gregm
Posted by

Hi,

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.

Greg

Will2017
Posted by

Thanks for your response. 

I went back to see my Dr. She is concerned that if it is back it will spread quickly, I'm having another blood test on Monday to see if there is any change. 

As for the surgery, in thailand they don't seem to be able to do the key hole surgery so it would be quite a full on op, not really up for that if I can avoid it!

I'm talking with the royal marsden about doing the op there and waiting (which is always the best part!) for them to come back to me. 

My insurance won't cover the op in the uk so I'll have to self fund. Does anyone have any idea how much the surgery would be?

Thanks in advance to any replies
Will2017
Posted by

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. 

Thanks again. 

Will

gregm
Posted by

Hi Will,

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.

Greg

Will2017
Posted by

Hi Greg,

That's awesome, thank you so much. 


I've sent you a pm. 


Cheers,


Will