Choriocarcinoma

[emilyalex]

Hi all. Hope everyone is doing well and getting all good news! My fiance is battling non-seminoma extragonadal germ cell tumor/testicular cancer and yesterday while compiling all of his path reports and films for our visit with Dr. Einhorn, I noticed that one of the reports states that he has his cancer is choriocarcinoma and high grade adenocarcinoma. I don't remember seeing anyone else here with pure choriocarcinoma - and that scares me. Does anyone know how much worse that makes our situation? I've tried to do some research on the net, but between going back and forth to him while he's in the hospital getting chemo this weekend, etc., I am just too tired to try to make sense of it all.

Sometimes it's better when you don't see the severity of what the reports and films show. As recently as 11/24, the bloodwork suggested because of red/white cells being a certain way, bone marrow could be involved. He had a bone scan just after diagnosis and that showed no cancer whatsoever. Now I'm just more scared than I was before.

As of about 10 days ago, his HCG was down to 205 (from over 100K at dx) and the AFP was 292 (never heard the initial #). He just began his 3rd round of BEP on Thursday. It sounded like good news until I looked at all of the reports.

If anyone has any info on choriocarcinoma, please let me know. Thanks very much.

Emily

[Scott]

Emily, I'm sure you already know that pure choriocarcinoma is very aggressive and difficult. I'm so glad you're already working with Dr. Einhorn, and all the news about the results of his treatment so far has been really encouraging. We're all pulling for your fiance and you.

[ebfun7]

Choricarcinoma

Emily,

From what you say your fiance probaly has an element of choricarcinoma in his original tumor make up but it is not %100 choriocarcinoma because his AFP is also elevated. Chorio only elevates his HCG. This is from the testicular cancer website http://tcrc.acor.org/ which has lots of good information:

Choriocarcinoma - A rare, highly malignant germ cell cancer. When seen as a small component of mixed germ cell tumors, it has little bearing on clinical behavior or outcome. In its pure form, seen in less than 1% of all germ cell tumors, it requires intensive chemotherapy. It can metastasize via the bloodstream to the lungs or central nervous system without affecting the retroperitoneum.

My husband had an over 500,000 HCG upon diagnosis. His pathology report indicated seminoma and teratoma bu according to Dr. Einhorn somewhere in his metastasis there was Embroyonal Carcinoma or Choriocarcinoma due to the elevated HCG. He is great now and both AFP and HCG have been normal since July.

Please contact me if you have any more questions or need someone to bounce things off. :-)

[ebfun7]

Bone involvement

Also we were told by Dr. Einhorn that chorio spreads to lungs first then liver then brain then kidney then bone. My husband also had a bone scan upon diagnosis that was clear. I would think that if you finance's was clear upon diagnosis and his tumor markers have been going down and not up during treatment (so there has been no disease progression during chemo) then the bone would still not be involved. I could see involvement maybe happening if tumor markers had been consistently going up, and the disease has been progressing, but from what you said they have not.

What was wrong with his white and red counts? They will completley bottom out during chemo. Unfortunatly chemo kills the good and bad cells. MY husband still has a low white count at times and is still anemic.

Good luck and Dr. Einhorn is awesome. He followed my husband during his whole treatment. Again let me know if you need anything.

Erin

[Scott]

That's an important observation Erin made that this is a mixed non-seminoma. As another example, note that Lance Armstrong had 60% choriocarcinoma, 40% embryonal, and less than 1% teratoma, and we know things worked out well in his case.

[emilyalex]

Choriocarcinoma

Scott and Erin, thank you SO much for your responses. That was exactly what I was looking for - real world experience and knowledgable advice. I have read and read on the internet and all I do is lose hope when I research this.

As for the red/white counts, his Path Report on 11/24 said: "The peripheral smear shows the red cells to be normochromic and normocytic. There is a moderate anisocytosis and poikilocytosis. Macrocytes are fairly prominent. Nucleated red blood cells are also prominent. There is a leukopenia present with an absolute neutropenia. There is no significant left shift. Circulating myeloblasts are observed. The platelets are normal in number and morphology.

This patient has Leukoerythroblastic blood picture suggesting possible bone marrow disease. Suggest further hematological evaluation if clinically indicated."

I'm not sure what all of that means. I tried looking up all of those words and piecing it together, but honestly, I pretty much zeroed in on the last sentences. His oncologist has said nothing about this. Erin, it sounds like your description of what Dr. E told you about how chorio spreads is exactly what we experienced. He had lots of mets in the lungs, some in the liver, at least one in the kidney and it was starting to work on the brain.

I'm off to the hospital. I'll check back in later. And, thanks again for your replies. I was so depressed last night and this morning, I was afraid he would know I was upset. You've both made me feel better.

Emily

[Hopeful]

hi Emily.

Erin is right. If your husband has an elevated AFP, then he is not 100% chorio. Chorio has NOTHING to do with AFP.

My husband was 100% chorio. He was also treated at IU for high dose chemo/stem cell transplant, like Erin's hubby.

Like Erin said, 100% chorio travels from testicle to lungs, to brain, then to liver then to kidney and bone marrow. if cancer is in the brain there's a bunch of different treatments to help it (ie Gamma Knife or Cyberknife.). There is a gentleman on the TCRC site (Andrew from Ireland) that was initially diagnosed with 600K BHCG and 100% chorio. He was successfully treated and in remission for quite a while. So even with the crazier testicular cancer stuff, remission is feasible.

Hang in there. There are a few of us on the site that have dealt with the testicular cancer, especially the more stubborn stuff. if you need ANYTHING, person to talk to, support, etc, just holler. There's a great support network on this site.

Patti

PS Hi Erin.

[Scott]

I noticed that one of the reports states that he has his cancer is choriocarcinoma and high grade adenocarcinoma.

It wasn't until Becki's post today that this struck me. What are your doctors saying about the adenocarcinoma?

[emilyalex]

Adenocarcinoma

Hi Scott. Sorry for the delayed response. We were in Indy yesterday meeting with Dr. Einhorn. My fiance's path report stated that he had chorio and adenocarcinoma. Don't know if I should put this out there, but Dr. E said he would be very surprised to see adenocarcinoma with this particular cancer and he is having a pathologist at IU look at the slides for further evaluation. Because the cancer came on so quickly and aggressively, Dr. E just didnt think adeno would be there. The way it appears to have spread just doesn't indicate a slow growing teratoma that suddenly became malignant. It's very likely that the pathologist here in Houston who initially looked at the slides just doesn't see that much germ cell cancer like what we're dealing with and HOPEFULLY thought it was adeno in error. Of course, the pathologist here may be right, but obviously we hope not. Dr. E did seem to act as though that would make the situation more difficult.

I highly recommend second opinions on this type of thing. At first I felt bad "doubting" the doctors and hospital here (we're getting textbook treatment), but there is no substitute for going and consulting with someone who sees so much of this firsthand. Dr. E said we might hear some results from the Indy pathologist this week, so I will let everyone know what we hear back.

Take care.

Emily

[Scott]

I'm really glad to hear that, Emily. I hope the pathology report turns out to be in error. Hang in there and keep us posted!

[mercyriver]

Emily,

I am glad to hear you met with Dr Einhorn. My husband's pathology report mentioned adenocarcinoma also, but in conjunction with the type of Embryonal Carcinoma cells. And based off of what you said Dr Einhorn explained it as, it doesn't make much sense to be in my husband's pathology.

I hoping we both have an error on the pathology report.

Please continue to keep us up to date.

Becki

[tammytrull]

adenocarcinoma and Dr. Einhorn

Hi,
My boyfriend is saw Dr. Einhorn for the first time today after being misdiagnosed in California. Dr. Eihorn, tells us that he has adenocarcinoma. He said this was very, very rare. That he only sees it every five years approximately. Does anyone know of anyone who´s had this form of testicular cancer? And what the statistics are regarding curability? Anything would help.
Tammy