New here: Decision between RPLND and 2 x BEP

[Mizu]

Hi All,

I'm new here, but found already some pretty good information, thank you for that. Here's my current status:

10/03/05 - I notice an enlargement in a hydrocele on my right side that I had had for a long time, and that my urologist at the time said did not need fixing. I go see my local urologist, he sets me up for an ultrasound the next day.
10/04/05 - Ultrasound confirms hydrocele, no worries, but also shows microcalcifications on my left testicle (micro lithiasis), which puts me at risk for TC, no sign of any malignancies, though. After talking to the doc decide to fix the hydrocele early in 06.
12/05/05 - Go see the doc to talk about scheduling the hydrocele procedure, he recommends blood test and second ultrasound, to be safe
01/06/06 - Bloodwork done, comes back AFP 2.1, HCG 1.6. Ultrasound however shows shadow mass in left testicle.
01/11/06 - Doc is concerned about Ultrasound, sends me for MRI
01/23/06 - MRI done
01/26/06 - Doc confirms testicle mass, wants to schedule orchiectomy, does not do too many of these per year and the hospital he works with has not the best reputation. I ask to be referred to NYU medical center for a second opinion, thanks to my wife's preexisting relationship with them I get an appt fast.
01/31/06 - Meet with Dr. Taneja at NYU medical center, he confirms diagnosis, is well informed about treatment, schedules surgery. Have another Ultrasound done.
02/06/06 - CT scans of chest and abdomen come back clean, do pre-surgical testing (bloodwork etc.).
02/10/06 - Radical left orchiectomy, right hydrocele (while we're at it...), go home the same afternoon. Feel suprisingly good.
Over the next week I have recovered very well, am pretty much back to normal, and don't walk like John Wayne anymore (thanks to the hydrocele there is some inflammation on the right side which will take 6 weeks to subside)
02/21/06 - Follow up meeting. Pathology puts me at pT2, mixed tumor, 99% embryonal, 1% immature teratoma, multifocal lymphovascular invasion, but surgery margins are clear, and it turns out there were actually 2 tumors, 1cm and 0.6cm in size. Dr. says I have a 50-70% chance that microscopic cells are in my lymph nodes. He recommends RPLND, but also refers me to a medical oncologist to discuss the option of 2 cycles BEP, which I will see on Monday. Have blood drawn to see how AFP and HCG are doing now.

I'm going to see Dr. Sheinfeld at MSKCC tomorrow, and Dr. Benson at Columbia Presbyterian on Monday, to get more datapoints on what to do.

So that's where I am, and I feel the more I know the less sure I am about what the right decision is. 2 x BEP would cure with 97-98% probability, but there is a 30-50% chance I might not need it. And the side effects (and long term effects) sure don't sound like fun (in particular the lung issues associated with Bleomycin). The surgery may find that I need chemo after all, and the chance of nerve damage is also pretty unsettling (yes, we're banking sperm just in case). NYU prefers the open RPLND and does not to laparoscopic RPLND, I will see what Dr. Sheinfeld suggests tomorrow. At NYU they do RPLND maybe a dozen times a year, while Sloan Kettering clearly does the most in North America. Yesterday before the meeting I was leaning more towards chemo (like 60:40), but now I am completely undecided. I went ahead and scheduled surgery at NYU for 3/8/06 just to get on the schedule, but if I decide for surgery I may want to go to Sloan (even though it means out of network for my insurance).

Any word from the wise?

Best

Michael

[nzsteve]

Welcome to the club!

Youve done the right thing by getting the appointments to speak to people sorted. Having the high embryonal content does increase the chances of spread, but I would ask them their thoughts on surveillance, although you would need be ultra sure to keep your appointments.

Having gone through chemo and RPLND I would probably pick the surgery if I had to have one or the other. As you say, you might still need some chemo after the surgery. But you might not. Without any mass in the abdomin at the moment the chance of them performing a nerve sparing op should be good. There would be a chance of spread directly to your lungs after the RPLND - I dont know the odds, but its worth asking the docs about before you make a final decision. Im not in the US so dont really know your insurance system, but the general opinion is always get the most experianced surgeon you can. Some of the other guys might beable to recommend some people in your area that you would be covered with.

Ref chemo now, check their view on 2xBEP. The jury still seems to be out on it as a treatment. The arguement seems to be that as 3xBEP is so effective if you do relapse, why take 2xBEP now when there is only a 50% chance you might need it. If you did relapse after 2xBEP future cisplatin based chemo might also be less effective.

Hope that helps somehow! If you havent seen it you might want to take a look at
this doc, which outlines treatment guidelines.

Steve

[AdrianB1971]

hi

I dont think the RPLND is an option in your situation. Why ?
Because you have high percentage of embryonal elements witch are more likely to skip lymph nodes and spread directly to your lungs [like in my case]

So, if there are normal markers and CAT scan clean, you have two options :
1. surveillance.... but be very very carefuly with check appoiments !!!
-in case of relapse, if detected early, 3xBEP will cure you 80-90%
2. 2xBEP adjuvant right now with a cure rate of 90-95%

So, its your choice

[Scott]

If I were you, I would start surveillance and save the big guns, chemotherapy, for when you know for certain you need it.

[Mizu]

Thank you guys, I really appreciate the insight. I met with Dr. Sheinfeld and his team today, and am scheduled for RPLND next Friday. The decision became a bit easier after I read the research literature (J of Urology currently has free access) on RPLND vs. the 2 cycles of chemo. I have three risk factors for spread (EC, pT2 and LVI multifocal), and the relapse rate for a combination of these factors rules surveillance out for me. I've emailed with Indiana and while they mentioned a single round of standard chemo as an experimental study option, I discussed possible long-term relapse and complications due to EC turning to teratoma with Dr. Sheinfeld and am fairly confident that I'm taking the right step. To quote from the email from Indiana:

"None of the options are wrong choices, and people make their decisions for different reasons—with surveillance, the thought of monthly CT’s, and is this the month my disease will come back? Insurance issues, travel plans. Fear of surgery. Fortunately with this disease you do have choices and most certainly a 100% cure rate, even if the disease does return."

Best

Michael

[dadmo]

Dr. Sheinfeld is a world expert in threating this disease. Even with my own son I took his advise as gosple. But, I will admit that I did alot of research on my own, which greatly increased my level of confidence.

[wolken]

good decission !

[Scott]

It's great that you've reached a decision and can get on with it and put this behind you!