Just met w/ Dr. Einhorn

[sjsamgolf]

I just had a appointment w/ Dr. Einhorn this last Tuesday. What a Doctor, treated me like I was his patient for years. IU changed my pathology report from 50% immature teratoma, 50% yolk sac, less than 1% EC, to 50% mature teratoma, 40% yolk sac, 10% EC. No VI or LI. Doctor said I was a great candidate for surveillance. He mentioned to me that I had a 20% chance of recurrence. For me I am a bit of a worrysome person and have had trouble sleeping since being diagnosed. He told me about a new study of adjuvant chemotherapy in Europe. He told me 1xBEP would increase my chances to 99.5% cure. Maybe only the 1 in my case due to the lack of EC, I don't know. I am seriously thinking about this approach versus surveillance just for piece of mind. Any comments?

[dadmo]

sjsamgolf:
That news from Einhorn is great, congratulations. I'm with you on the surveillance, I don't know if I could do it myself. This is the first I've heard about IU doing 1 round of chemo. THe long term health consequences of chemo are troublesome but with only getting one round that probably isn't an issue. This will be a tough choice. Did Einhorn seem to lean in any direction?

[Scott]

I'm surprised to hear about a 1xBEP adjuvant chemotherapy option. Did you get any details about the study?

[sjsamgolf]

Dr. Einhorn said in 200 patients that did this, 199 of them had no recurrence. The 1 that did relapse was given more chemotherapy and was then cured.

[Krokar]

Nice to hear but what is the name of this Chemo ?

[Scott]

Are you absolutely sure? I asked about this on the TC-NET mailing list and was told that Dr. Einhorn has been opposed to two cycles of adjuvant chemotherapy, so it's difficult to believe he would suggest one.

[Apache]

I'm also surprised by this.

I saw Einhorn last spring when first diagnosed in essentially the same situation (but with different germ cell type) and he recommended surveillance and was opposed to adjuvant BEP.

Now, of course, if this new study has been recently done and published by a trusted colleague of his or published in a PEER reviewed medical journal, maybe he is buying into to it.

In any case, I would try to get the study and read it.

If you are a person who absolutlely must do something to sleep better at night, then seriously consider the 1xBEP. A good attitude and preparation will get your through it. But make sure to understand any side effects (like sterility etc).

Apache

[dadmo]

Apache makes a good point. Just because it's only one round you should prepare like your going to get the full 3-4 rounds. Get that sprem banked.

[sjsamgolf]

My original Oncologist wanted to do 2 cycles, when I read more into it I read also that alot of experts did not necessarily agree with this approach. I went for a second opinion w/ Dr. Einhorn. He told me about this recent study done in Europe and the new findinds were being presented in June. Patients were given 1XBEP and 199 out of 200 had no recurrence. I discussed my actions as my tumor makeup has 50% teratoma, 40% yolk sac, 10% EC. The way I see, if spread were to occur, I would need 3xBEP and possibly RPLND to remove teratoma. Maybe this study was done with patients with similar tumor makeup, that I don't know. He mentioned that with RPLND, my chances of recurrence would be 5-10%, and he said with 1xBEP my cure rate would be 99.5%. Like I said before I am the worrying type and am more inclined to do something early than later.

[Scott]

Perhaps this is the trial?

http://www.aio-portal.de/html/studien/studien005.htm

SYNOPSIS: International Multicenter Trial of the German Testicular Cancer Study Group (GTCSG) in Patients with clinical stage I “high risk” NSGCT, Randomized phase III trial of 1xBEP (bleomycin, etoposid, cisplatin) vs. 2xBEP adjuvant chemotherapy in patients with clinical stage I high-risk non-seminomatous germ cell tumors (NSGCT I)

[Jens]

I think it's well described here
Interesting...


Best wishes
Jens

[Scott]

Doug Bank says on TC-NET:

I do NOT believe that this is the correct trial. The trial in question compared different things and has not been published. I cannot say any more as results have not been published and it is very easy to misinterpret an abstract or summary.

I would actually say that this guy's tumor is a good one for surveillance and that is what I would recommend.

Doug

I would suggest trying to have a follow-up conversation with Dr. Einhorn. I suspect you may have misunderstood what he told you.

[AdrianB1971]

If, in my case, after 1 cycle of BEP the hcg has dropped to 0.5 [with lungs nodules] why it's so hard to bealive that 1 cycle will cure 99% of surveillance patients ?? I dont know, I'm just thinking, It's just an opinion. My onc said , after second cycle, she is sure the lungs nodule have dissapeared. And it was TRUE. On the other hand, Scott has right : the great risk is, in case of relapse, the cancer will be adapted to cisplatin based chemo and more more dificult to be treated. I think you should have 2 cycles because :
1. The side effects of 1 cycle is comparable with 2
2. Two cycles don't have serios side effects [I had 3 and I'm absolutely free]
3. You will realy have 99% chance to be cured and no regret in case of relapse.

[Scott]

sjsamgolf, what decision did you make? Another patient posted information exactly like what you heard to the TC-NET mailing list this week.