My 23 year old son has just been diagnosed

[Already Bald]

Great news!!
The RPLND will clean him out. Hopefully SSI will come through for you.
Best regards,

[discodolly]

Update

We have had some good news. Eric's AFP is down to 3.3 and his B-HCG is 1, all within normal limits. The recommendation is that he get the RPLND, which he elected not to get last time. This time however, I think he will go ahead and have the surgery. It wont be until sometime in March, we are going to try to wait for the SSI hearing. If they approve him and give him Medicaid he can have the surgery close to home. If not he will have to go about 300 miles away. He did get a shot today to replace his testoterone and hopefully in a few days he will be back to normal.

[Karen]

Debbie,
Sorry I just catching up on this. I agree with Fed, a second read on the pathology and get 1-2 experts in the loop.

[Fed]

Debbie,
Thanks for the more detailed information. This certainly helps out. Though I would still try to get a second read on the pathology, it looks like this was indeed caught early. I also think that it might be necessary to consult with an expert, since the surveillance is likely to be different and perhaps more comprehensive. This is because of the "new nature" of the cancer cells. I have sent you a PM with some info that might be of use. I'll be in touch,

[discodolly]

Here is a copy of the Pathology Report. The good news is that there was no spread to the cord. Again, I can not thank you enough for your help.

[Fed]

Hey Debbie,

With Fish's help, I've been able to do some more digging on the issue of immature teratoma with malignant transformation. As it turns out, it's not that uncommon. There is a study performed on patients showing teratoma (any kind) with malignant transformation which shows that almost half show a presentation in the testis. One of the authors of this study is Victor Reuter, who is the pathologist at Sloan-Kettering (he actually did a second read on my pathology).

The thing that is key is figuring out whether there is any evidence of spread beyond the testis -this should be noted in the pathology report you already have- and whether there are plans for futher CT scans. They should also note what somatic elements were found. Somatic elements are what the teratoma turned into, and these can be, from most common to least common, sarcoma (usually rhabdomyosarcoma), adenocarcinoma or primitive neuroectodermal tumor.

Let us know how we can help more.

[dadmo]

Dolly:
Please be agressive with your follow-ups. If the teratoma has morphed it will require a completley different treatment protocol. The experts at Sloan have worked with this in the past so they may be the people to contact. My sons oncologist was Dr. Motzer. Here's his contact information.

[discodolly]

The offer is grealty appreciated. Not sure what our next step would be, we have a wonderful Urologist who has worked with Eric since day one. He is contacting the docs at MD Anderson in Houston. Hopefully, we wont be limited on the assistance as Eric has no insurance. He finally got a hearing date with Social Security but that isnt until 2-26. I will keep everyone posted on how things are going. Again, thank you so much for everyones kind words and especially Dadmo with his offer.

[Fish]

Hi Debbie,

Definitely, a consultation with an expert is in order at this point. Sloan is one of the best places.

Dadmo and Nancy's offer to help is genuine, don't be afraid to take them up on it. They're really great.

[dadmo]

Debbie:
At this point I have to believe that you need to get in touch with the folks at Sloan. Our house is open and and we are less then and hour from the city. If needed Nancy and I can be your shuttle bus. We've done it before so don't be shy. This is way more important then thinking you might be an inconvience.

[Margaret]

I know you have been going through a lot Debbie, we are thinking of you and hoping for the very best.

[Fed]

Hi Debbie,
My first instinct here is that this being an unusual pathology report, that you get a second read elsewhere just to be sure (Sloan comes to mind; some insurances cover it). Immature teratoma turning malignant is not unheard of, but I've only heard of it happening after it spreads. Were they able to identify what the teratoma transformed into? If this is what I think it is, the teratoma usually becomes either a sarcoma or an adenocarcinoma, which requires a completely different regime because the cancer is no longer TC. I'll research this some more, and I'll post more when I find out more. In the meantime, I would get working on getting the second read on the pathology. Hang in there, and please give my best to Eric.

[discodolly]

Pathology

Just came from the Doctor and the news is kind of scary. Eric had his surgery last Monday and everything went great. The scary part is the pathology report. It is a teratoma, immature, with somatic type malignancy (malignant transformation). The Doctor says he has never seen this before in his whole career. He is going to do some research on this and come up with a plan. Eric will get more blood drawn Friday to check his markers and that should give us more answers. If anyone knows about this type of tumor and could give me more information I would appreciate it.

[a12curlyq]

Hello Eric and Dolly,

I am the girlfriend of a 2X TC survivor, also. He is young too, 20, and his recurrence happened within a very short time, also. It sucks, doesn't it? It looks like you have caught it early this time, which is good news!

My boyfriend has been on the testosterone replacement therapy for a little over 2 months, now, and it is working really well for him. He was getting really bad headaches, and the testosterone made him feel MUCH better. He uses the androgel, and it works out really good for him. He was worried about adding another step to his routine because he's always running late and stuff, but he said it's really not a big deal. He just rubs the gel on his shoulders after he gets out of the shower in the morning, and he is good to go!

Here's to good health and a speedy recovery in 2008!

-Tiffany

[dadmo]

Dolly:
He's being stubborn within reasonalbe limits. We all need to let our children enjoy sometime without cancer getting in the way of our activities.