Another Question - Chemo/RPLND or RPLND/Chemo?

[indiana9]

Hi Dave,
These are hard decisions and understandably, the whole process can be a bit disconcerting. Your doctors are experts so listen to their advice. After L-I/O my cat scan revealed a softball sized, 12cm x 12cm, tumor in my retroperitoneal lymph nodes. My AFP was elevated to 48 and my HCG was about the same. I completed 3XBEP at IU on Nov. 30, 2006. The tumor shrank to baseball size during chemo and after a PET scan showed that there was likely residual cancer, I underwent the RPLND surgery on 3/29, 06. Dr. Foster came into my room the next day to inform me of good news and bad news. The good news was that I had a false positive on the PET scan and the tumor was nothing but dead cancer cells. Hooray! He said the bad news was that I would have probably been OK without the surgery. I can live with that kind of bad news. I was only in the hospital for two days following my RPLND and returned to work 19 days after the surgery. Even though the tumor was still ginormous, all of my plumbing works great. I was able to walk a mile four days after surgery and have been cycling again for two weeks now.
I feel great except for some numbness in my feet and fingers from the chemo and I guess that might eventually go away too. Sloan is as good as IU with this cancer, so you are in great hands. Feel free to email me directly at [email protected] if you have any questions for me.
Brian

[Scott]

It's definitely sounding as though chemotherapy is the way to go.

[rlhawk]

I think you'd be less likely to need an RPLND after chemo than the other way around. I'd go with chemo.

[Karen]

Dave,
Sounds like 4xEP is a good choice for you. The chemo will knock that AFP down to where it belongs....and keep it down! Good luck!!!

[Dave40306]

The main reason for 4xEP is that my Onc. was at Sloan prior to being in New Haven, CT and because I have asthma, I asked if I could avoid the Bleo. The general consensus seems to be that 4XEP is just as effective as 3xBEP. At least that's what I've been told so far.

On another note, I got my latest AFP and it looks like it might be leveling off. It's only down to 115, 4 days after it was 138.

[dadmo]

Apache:
The standard treatment for most people treated by or at Sloan is 4EP.

[Apache]

I would do the chemo first and you may not need the RPLND. since I am responding a bit late, any reason why 4xEP vs. 3xBEP? just curious.

[Scott]

As we discussed back in this thread, I wouldn't assume you'll need RPLND surgery after chemotherapy. RPLND now to avoid (or need a shorter course of) chemotherapy could make sense, but to be sure that's an OK choice, you'd want to see your markers drop to normal, and that's going to take a while still.

[Mom]

It is my understanding that they only do post chemo RPLND if there are residual masses remaining. If you have the RPLND and your markers remain high or elevate during surveillance you will have chemo. If you have the chemo first and subsequent CT scans show no enlarged lymph nodes and your markers are normal you will be on surveillance. My son's markers didn't come down after I/O, he had LI, with the possibility of a slightly enlarged lymph node. He had the chemo but no RPLND. He has been on surveillance since 1/05. I would ask under what circumstances would you need the RPLND after chemo. Good luck. I know this is hard. Dianne

[Dave40306]

I've now seen 3 oncologists including one at Sloan and another that was at Sloan for many years. Since I was at Sloan, I've had additional AFP tests done and CT scans of the chest, ab and pelvis. I'm trying to work within my HMO since they denied coverage at Sloan. (I think I could easily appeal and win this decision if I need to, especially if I need the RPLND). So far, all 3 D.O.'s agree with each other on primary clinical staging and treatment path.

My pre-I/O scans showed 2 slightly enlarged lymph nodes and my AFP was 3300 with nothing else elevated. The latests CT's show nothing in the lungs (earlier x-ray said the same) but the same nodes "appear" slightly larger than before. Path report (verified by Sloan) is 100% Non-seminoma Yolk Sac w/vascular invasion. I don't have a new "official" clinical staging since the latest blood and CT's but when I asked about it, I was told "most likely IIa or IIb".

AFP has been progressing almost "as expected":
4/7 - 3300 (I/O 4/10)
4/21 - 600
5/5 - 138
5/9 - no results yet

At this point, the Oncologists want me to start 4xEP within a week or so and they all think that I should prepare myself for a post-chemo RPLND. I have yet to talk to an RPLND qualified Urologist but I should have that consult next week.

I'm really beginning to wonder if I should go for the RPLND first in hopes of being able to avoid the chemo. I understand that post-chemo RPLND can be a more difficult surgery and there 's more chance for retrograde ejaculation post-surgery since it's tougher to spare the nerves. Even if I need chemo after the RPLND, is it better to get the sugery first? Seems to me it would be after doing a bunch of reading and research about post-chemo RPLND.

Is this even an option for me at this point or is the standard protocol for my situation to go with chemo first then possible surgery?

Just wondering if anyone else has been at this crossroads and what your course of treatment was?