Question about standard treatment

[muddypelican]

Hello,
My boyfriend was diagnosed with TC in early July, had a R I/O on July 19. His pathology results are:
RIGHT RADICAL ORCHIECTOMY:
1. MIXED GERM CELL TUMOR WITH EMBRYONAL CARCINOMA (MORE THAN
95%) AND CHORIOCARCINOMA ( LESS THAN 5%) COMPONENTS, 1.8 X 1.6 X 1.5
CM, CONFINED TO THE TESTIS
2. SURGICAL RESECTION MARGINS ARE FREE OF TUMOR
1. Procedure: Radical orchiectomy.
2. Tumor size: 1.8 x 1.6 x 1.5 cm.
3. Histologic type: Mixed embryonal carcinoma (more than 95%)
and choriocarcinoma (less than 5%).
4. Extent of invasion: pT1
5. Margins: Margins are not involved by tumor.
6. Blood/lymphatic invasion: Not identified.
7. Serum tumor markers: (HCG level, 33 miu/ml).
8. TNM stage: pT1, pNX, pMX, pSX.
ARZ/kmm

His tumor markers were normal after surgery, but his CT scan showed a few enlarged lymph nodes, the largest being 1.4cm.

His treatment is 2xBEP, he is starting his second cycle Monday.

My question is how often is 2 cycles enough? I don't think I've seen a single posting on here that had less than 3, and I just want to be mentally prepared for the liklihood of a third cycle. Another worry, is 1.4cm large enough to leave enough leftovers for a RPLND? So far there has been no discussion of that with the dr's other than that chemo is the best course for him rather than surgery.

Thanks, This site has been a great source of information for us.

[Margaret]

Actually I would rather my hubby have the RPLND over chemo. I know the RPPLND sounds super scary but he will make it through okay if he needs to have it.

As far as how many rounds of chemo, only his doctor could make that call. But I wish you all the best.

[jaybird]

The studies on tc patients that go through 2 rounds of BEP without a primary RPLND have shown great results. This is a fairly new approach for any hospital suggesting this curative method in the United States. It sounds like the ct results are in the range for him to be a candidate for this method. 2 rounds of BEP is usually associated with a primary RPLND.

If I were you guys I would get a second opinion from a doctor on the list of experts on the TCRC website. You want to make sure that he gets enough chemo the first time around. CT scans can be misleading sometimes.

[Jay68442]

When I was diagnosed I had a few enlarged lymph nodes as well. They were treated with 3 rounds of chemo but not removed. After a year of clean ct's they returned. I had to go through 3 rounds of high dose chemo and a bone marrow transplant. If confronted with the same diagnosis today I would opt for the RPLND before the chemo. I'm no doctor and I'm sure treatments have improved since I was diagnosed 17 years ago but I would take more aggressive approach. Having the RPLND first time around might have saved me lots of hospital time.

Like jaybird said get a second opinion from an expert.

[Fish]

Second opinions are almost always a good idea. TC is rather rare, making a second opinion from an expert even more important.

Go to http://tcrc.acor.org/experts.html

This is the experts list. Dr. Einhorn at IU is very responsive, and he is one of the best.

I would ask him very specifically about only doing 2x BEP.

Best wishes.

[TOP]

I did not get an RNLPD. I had 4 opinions including John Hopkins and Indiana. Only one urologist suggested it. The rest said no and one said it would be "a morbid procedure". Get as many opinions as you need to settle your mind on this. Tim

[MRMRSU]

Dear Muddypelican: I have a deep and profound respect for all of the guys who've had to go through chemotherapy. When my husband and I first embarked on finding the right course of action after getting the pathology results from his I/O, we were adamant against RPLND. But numerous consults later, that's the route that worked best for us. My two cents, don't be afraid of the RPLND...it has proven to be curative for many. A second opinion (even a third) is a must! Good luck to you both!

[muddypelican]

Thanks

Thanks to you all for your input, I have emailed Dr Einhorn and look forward to his reply. Writing this from the infusion room right now, in the middle of his second 5 day treatment week. He is doing well so far only a few bad days.

[muddypelican]

Dr Einhorn suggested we do a third cycle of BEP, but eliminate the last 2 Bleo's. We are going to follow his advice, better safe than sorry!

[Lori]

My husband was treated by Dr. E and he is the best! Good luck with the rest of treatment. Lori

[petep]

I had the orch and showed one enlarged node about 45 days later...originally on surveillance after IO...then it was 3xBEP...

I was told by Dr. Einhorn and my doc in miami, benedetto...that I could have had 2xBEP just after the orch, when I showed no enlarged nodes and all normal markers, as one option....my other option was RPLND or surveillance...

but as soon as I showed the enlarged node...it was 3xBEP....keep in mind my path was 95% embryonal / 5% seminoma....the embryonal component payed a factor in my choosing chemo over RPLND.

most important...given the early detection, einhorn said any of those options was a good choice and would not affect my ultimate cure rate....which really takes the pressure off.

[RTC]

Dear muddypelican,

I am just wondering when you ask Dr. Einhorn for recommendation . .
if you just describe the situation like you did on the forum . . and
Dr. Einhorn would just reply and give suggestion?

Wow Dr. Einhorn is so nice . . . . .

I have been thinking about writing him but wasn't sure if a top expert in the
world would have time to reply my mail . . .

A relative of mine who is a Urologist told me that they usually don't do that
for liability reason . . . . and I would have to fly in and be a patient . .
I guess my relative is wrong . . .

[mstlyn]

Dear muddypelican,

I am just wondering when you ask Dr. Einhorn for recommendation . .
if you just describe the situation like you did on the forum . . and
Dr. Einhorn would just reply and give suggestion?

Wow Dr. Einhorn is so nice . . . . .

I have been thinking about writing him but wasn't sure if a top expert in the
world would have time to reply my mail . . .

A relative of mine who is a Urologist told me that they usually don't do that
for liability reason . . . . and I would have to fly in and be a patient . .
I guess my relative is wrong . . .

RTC,

Your relative is not completely wrong.

When I tried to ask my sons surgeon at U of M an email question, he wrote back and said he would call me because they don't communicate about treatment through email.

However ...

Dr. Einhorn definitely will respond to emails from people that need help with TC.
We (me and my son) have been following all of Dr. Einhorns recommendations for months now, and all of it through email. For the first time since he was diagnosed, I feel that my son is receiving the very best advice, though he did tell me that should my son have another relapse, I should bring him to Indiana. I pray that will never happen, but if it does .. we're off to Indiana.

[Sharkiness]

RPLND Needed

Hey,

I haven't used this much as I have just finished my fourth cycle BEP Chemo. I now need an RPLND as the tumour is still there. It didn't shrink but not producing anymore AFP or HCG (i hope) I haven't had last two blooood results although doc would say iif anything to be woried about. I poke to my surrrgeon who will be performing op and frankly I am [email protected] myself , I haven't seen anything posted from anyone who has been through this and don't know how long it will take to recover. i had a holiday booked for Feb and the surgeon will not hint as to what I should do. Which is making me even more scared. Can anybody help with advce on what i should expect. Cheers.

[David1969]

I had an RPLND and too be honest the thought of it was worse than the actual op. I had mine on the Monday and was sent home the following Friday, a week later I was at my company's Holiday Party!!!!

It took me about 3 weeks to start getting active again and after that there was an improvement each week. 10 weeks after the ops I was snow mobiling, so recovery was not that long.