My story so far, and a question?

[MarkOne]

Really sorry to hear things aren’t quite going to plan. The RPLND sounds like a good call with just one lymph node involved and bloods not raised when they were significantly elevated in your original diagnosis iirc. Have you got a hospital / surgeon in mind?

You will get through this, it won’t be easy but you have already proved you can beat this once so you know you have the strength needed.

Keep us updated and best wishes.

[singa76]

Very very sorry to hear this. I have been following your case closely since I was more or less going through the same at the same time. But I had my RPNLD right after 3XBEP last March. If this can help, just consider that the surgery was way easier than the chemo. After two weeks I was back to work and to normal activities, I am sure it will be even better for you since your chemo is already quite distant.

[Trekga]

NISH~ Oh No!!!! Sorry about this, so if tumor markers are normal again, than you will proceed with RPNLD? I would highly suggest open for this, as in my son's case, they found far more Teratoma than was visualized on CT scans (3 post chemo). But, without pathology can't assume it is Teratoma. Keep us updated, and again sorry.

[biwi]

Bummer! RPLND sounds appropriate here. Your case is fairly similar to mine, except my post I/O ct had a larger lymph node than yours. My RPLND revealed only mature teratoma...

[JoeTheAstronaut]

So sorry to hear that, man! Hopefully your body has recovered from chemo now and RPLND will be easier on you... Hope it goes well!!

[Nish115]

Hey all, thanks for the support! I am waiting 4 weeks for the RPLND, and then we'll see how it goes!

[Nish115]

Hey all,

An update, been given a choice between robotic and open. My urologist says it's equal, and it's a bit different as he specializes in both and can start with robotic and convert to open if required.

Anyone got any opinions? Not a fan of being given a choice, i'm leaning towards open..

[ScotSteve]

Nish,

I’m an infrequent visitor here now (I guess there are + and - points to that) but I was literally floored when I read your update. We were diagnosed around the same time but different pathology.

I’m sure this will sort you but I’m so sorry to read that you have to experience this. I guess in relation to your question there must be papers out there drawing a comparison but best to await feedback from those with actual experience.

Best wishes.
S.

[Davepet]

Hey all,

An update, been given a choice between robotic and open. My urologist says it's equal, and it's a bit different as he specializes in both and can start with robotic and convert to open if required.

Anyone got any opinions? Not a fan of being given a choice, i'm leaning towards open..

Everything I've read says open is better at making sure they get everything, but robotic has easier recovery. I can't recall anyone posting that they had a relapse after robotic, but the experts seem to not favor it. Personally, I think I'd go for open, but that's me.

Dave

[Trekga]

Some Urologists prefer robotic. For Grant it was not an option. I do know that with Grant additional Teratoma was discovered during his open RPLND that was not visualized on any CT Scans.Wishing you the best as you decide.

[Nish115]

Hey sorry all, couldn't find my password and the reset was broken for a while!

Just an update, I chose to do a robotic surgery in the end, as that was recommended by my surgeon.

I had it a couple Fridays ago (23rd March). It went really well, they made 5 cuts in my lower stomach, my surgeon said that it went better than doing it openly and no complications (no ejaculation nerves cut etc).

They actually sent me home the next day which was very surprising. I am now about 10 days out, and I am moving around pretty easily. Still some pain when sleeping (if I sleep on one side a lot), or if I move quite a bit, but I think because I started moving around the next day it's helped strengthen me.

Only time will tell if robotic was the right path to go down, but in terms of pain, i'd actually say it was on par with the orchiectomy, maybe slightly worse. I think it will take a bit longer to return to fitness than before though, as for example my stomach is still swollen.

Get my pathology results in about a month from now, so fingers crossed..

[JoeTheAstronaut]

Good to hear the op went well, Nish, and you are recovering as well as you can expect!!

[biwi]

I would say full open RPLND recovery is 10x worse than orchie recovery, so your path definitely has an easier recovery!

[Davepet]

A month seems a bit long for the path report?

[Nish115]

The whole process was quite long to be honest, my actual operation was about 2 months after they found the cell in my stomach, which felt very long but they said they weren't worried about waiting. And now it'll take about a month for path results. I imagine they'll have the results about 2 weeks after, so if it is something serious they might bring it forward, but they were quite confident that it was teratoma as my markers were low so that might be why they've said it'll be 4-6 weeks?