Mixed Germ Cell Tumor - Help!

[xuliette]

My husband had an orchiectomy on July 6th. Everything is going so fast, that we don't know if the advice we're getting from the urologist is logical or not.

Everyone here is talking about Dr. Einhorn, but we're in New York. How is everyone getting his input? Flying to Indiana?

Anyway, here's his story: After his orchiectomy (left side), the report came back that he has a mixed germ cell tumor comprised of 65% teratoma, 20% seminoma, 8% embryonal cancer, and 7% yolk sac. The doctors acted like this was really unusual, but after reading around on this website, it almost seems par for the course. Am I wrong?

After the orchiectomy, they did a ct scan on the abdomen and pelvis. The report says, "They are nonspecific left-sided para-aortic lymph nodes that are probably reactive as they do not measure more than 1cm in short axis. They are in small groups below the left renal artery. There are also nonspecific numerous nodes along the groin regions bilaterally, measuring no more than 1cm in short axis which are probably reactive as well....There are also numerous small subcentimeter mesenteric nodes that are likely reactive. The liver, spleen, pancreas, gallbladder, adrenal glands and kidneys are grossly unremarkable."

First of all, I'm not so sure what that all means, but it seems like they're saying that maybe the lymph nodes are cancerous, maybe they're infected? Since we don't have a catscan from before the surgery, how do we know if the lymph nodes are lighting up from cancer or from a reaction to the surgery?


The doctor said not to bother with a ptscan since it gives false negatives. Does that make sense?

At any rate, they say the next step is is RPLND, schedule for a week and a half from now. We have an appt for a second opinion, but my head is spinning.

The surgery seems so serious and the consequences so severe! Is surgery necessary for his tumor?

What do we do?

juliette

[Stgreed]

First.....take a deep breath! All of us have been in the sane situation on here and their are great people that offer great advice. The mixed cell tumor is not that big of deal. I had a mixed myself. The tricky part of your husbands tumor is the teratoma. Teratoma does not react well to cancer so surgery is the best option. However with that being said teratoma is also the slowest moving type so you don't have to have the RPLND tomorrow. You are definitely going to want to do your homework on who does the surgery. Dr. Foster at Iu seems to be the best although I hear great things from the guy in NY. Dr. Einhorn is currently the oncologist on my case and I have the upmost respect for him. Whatever he suggest I just shake my head yes!! I can get you the contact info if you want it. This is going to be a journey but make sure you have the best care lined up before you start. Feel free to message me if I can help with anything.

[Davepet]

Everyone here is talking about Dr. Einhorn, but we're in New York. How is everyone getting his input? Flying to Indiana?

Dr Einhorn answers emails promptly, & many on here get his advice that way.

The doctors acted like this was really unusual, but after reading around on this website, it almost seems par for the course. Am I wrong?

The teratoma part is a bit less common. Did they say if it was "mature" or "immature" teratoma?

First of all, I'm not so sure what that all means, but it seems like they're saying that maybe the lymph nodes are cancerous, maybe they're infected? Since we don't have a catscan from before the surgery, how do we know if the lymph nodes are lighting up from cancer or from a reaction to the surgery?

I'm not sure what "reactive" means in this context.

The doctor said not to bother with a ptscan since it gives false negatives. Does that make sense?

Not to me it doesn't, a PET scan was how I was dx for sure with stage 2 TC.

At any rate, they say the next step is is RPLND, schedule for a week and a half from now. We have an appt for a second opinion, but my head is spinning.

I would get Dr Einhorn's opinion by email. Teratoma does not respond to
well to chemo, so surgery seems likely,but if it's mature Teratoma, it might not have spread so maybe not. Ask the expert in the field to be sure.

Dave

[xuliette]

Thanks so much for your responses. It helps so much just to know we're not alone in all this.

Your recommendations to get in touch with Dr. Einhorn inspired me. So I wrote him and he said that it's true that a pets can offers no advantage at this point. He also said observation or RPLND is the way to go. So I asked him whether the cancer is so aggressive that it's worth doing the surgery. Well see what he says.

I'm curious to know whether anyone has heard of dr. Waltzer at Stony Brook and what their experience with him was. Or can anyone highly recommend a ny doctor? I think at this point were looking for the most experienced doctor with the best results for the RPLND.

Thanks!

[1lessball2answr]

Hey there,

Didn't you say you were in New York? Whereabouts? Memorial Sloan Kettering Cancer Center here in Manhattan is one of the best in the country for testicular cancer. I don't go there so I'll let the others chime in with who the right doctors there would be, but just wanted to throw it out there.

[Nut of Mordor]

The doctor said not to bother with a ptscan since it gives false negatives. Does that make sense?

Not to me it doesn't, a PET scan was how I was dx for sure with stage 2 TC.

Some kind of tumors (seminoma) show up on the PET scan, others (teratoma) don't. I don't remember about the others kind (EC, chorio, yolk). By the way, if you're looking for teratoma, the PET scan is not what you need.