Pales in comparison

[Apache]

After reading through some other posts tonight, I feel guilty putting my own saga on here. But, here it is:

4 months after 3xBEP and I just sorted this out.

Pre-Chemo Rx CT retroperitoneal lymph node 2.2cm x 1.7cm (AFP=22)

Got a bunch of opinions. Had 3xBEP

Post Chemo CT showed all nodes < 1cm. AFP 2.8. Others normal.

4 month follow-up CT shows retroperitoneal node back to 1.8 x 1.0cm, all markers normal. AFP=3.0. Lungs & pelvis = ok

So I was told to have another scan in 3month with markers work-up. I was told it could be infection, scarring or recurrence. In any case, I don't trust the state of oncology here.

I'm stressing out. Do I need to go and get another opinion? Or just wait? How could the same exact node be big and then small after chemo Rx and now getting bigger? I'm so confused. What is the criteria for a post chemo RPLND? I read the TCRC Q&A and checked a few other sites. Just curious.

[danebert]

If I had to guess its teratoma. Even though you only had 5% teratoma there is a high liklyhood its teratoma, because you didn;t have the RPLND.

[nzsteve]

Hi,

It cant hurt to get a second opinion, and its probably worth it so you dont spend the next 3 months worrying. At the very least Id arrange some blood tests in a few weeks just to see if your markers are stable.

Im not quite the same as your situation, but my lymph node kept growing during chemo, while my markers dropped. Path report after RPLND showed terratoma. Long story short, it is possible to have a growing terratoma (ie non cancerous tumour, but increasing in size). Its not that common, but does happen.

Good luck,

Steve

[dadmo]

The growth of your lymph nodes will have to be address no matter what the cause. The oncologist we used lost 2 patients to tc one to the actual disease and the other to teratoma. The one he lost to teratoma had an RPLND recommended but chose instead to became a free spirit, he moved to Alaska and lived a reclusive life never doing any follow-ups. By the time he sought treatment it was too late. That case is especially sad since it could have been taken care of so easily.

[Apache]

today's update 7 march 06

well I went to see my family doctor today. after consulting with the radiologist, she recommended that I go for another CT next week (that would be 1 month since the last one). she assured me that if it is growing, it would be detectable, since 1 month has passed. thoughts?

if it's not any bigger, I'm going to sit tight and have markers in 3 months and a scan in 3 or 4.

if it IS bigger, I'm going to see an expert. Probably Einhorn at IU. I will say, though, that IF I recommended to have a post-chemo RPLND, I would probably go with either Foster or Sheinfeld. When I was first diagnosed, I did see Foster, and he was an A/H but certainly knew his stuff...and that is what really matters. Any opinions on the two?

[Don]

I would think if you are having a reoccurrence that you would definitly want to go to one of the experts... I'm kind of in the same boat you are (I have a slightly elevated HCG level) and my Dr. at Moffitt already told me he would consult only Dr. Foster or Einhorn concerning my case especially seeing how bad my original case was.. I told him not to bother because if they find that I am having a reoccurrence Im flighing to Indiana this weekend myself.. You only get so many chances to get rid of cancer !!!! Hopefully neither of us are in the stagews of reoccurence but if so ....See ya in Indiana