confused...help

[Josh1982]

Hey, I'm josh and I was diagnosed in January with a germ cell tumor that is located in my anterior mediastium AKA chest. That's the only place, no spreads. If you've never heard of it, it's testicular cancer but in my chest. [B][I]Non-seminoma to be exact. I guess I caught it earlier even though the mass seems huge to me, 5cm by 7cm. My afp was 751, and hcg normal. I underwent 4 rounds of the lovely BEP mix. Glad it's over, wasn't fun. Well my afp got down to 20 which isn't good enough. I have to get surgery to have the tumor removed. The Doc isn't to forthcomming about anything. He acts like everythings going good. I'm going to have two rounds of chemo after surgery to kill the microscopic cells or if there's none just to be safe. I'm 23, I just want to get back to normal or someware close, and this whole deal is overwhelming most of the time. Death just staring at you teater totering, like a game or something. I guess that's the way it goes. I've read a lot of stories and I wish I would have thought to look for a site like this sooner but I'm glad I found it. You guys are inspiring. What's the deal with the afp not going down all the way, am I screwed or what. Does anyone know? I had the test a week after chemo, I get another one tomorrow, and I'm praying it's down more, but I don't know if that's possible. Anything anyone knows would be helpul. Thanks

[AdrianB1971]

Hi

The chemo has debulked your tumour. Of course, there still may be active cancer [in the tumour]. The surgery will remove it and the AFP will drop down. But the additional chemo is still required because the probability of ocult micrometastasis. This is the good case. On the other hand, if the AFP is produced not by the unresected tumour, well, it's not so good. That means there are ocult chemoresistant cancerous sites somewhere in the body and a different chemo regimen must be considered after surgery. The evolution of AFP level after surgery is the key.


All the best

[jdunn]

Hi Josh,
I can't offer you any valuable informtion on your upcoming treatment but there is alot of knowlegable people on this site who are so helpful. I know you will be just fine. I'm here for ya.
Prayers for you Josh.

[Josh1982]

I can't thank you guys enough. Just to know people who have been through this is comforting in an unfortunate way. Thanks for taking the time to answer. very helpful, and the support is really cool. Have a good day peeps. Josh

[dadmo]

Josh:
Welcome to the forum. Your case isn't as desperate as you may think. With the removal of the primary tumor and a second round of chemo it’s quite likely that you will be cured. If, after your second round of chemo, your markers don’t drop it will simply mean that you will need a different combination of drugs to clean you up. I just have a few questions, if the primary tumor is in the chest what were your symptoms, and where are you being treated? Keep us posted.

[Josh1982]

I had no symptoms. I pulled my back at work and went to the doc, and it was discovered on a routine chest x-ray.

[dadmo]

Wow, what a great luck. This seems to have been caught early and should be very treatable.

[Scott]

Thank goodness something else brought you to the doctor! Keep us posted as your treatment continues. We're rooting for you.

[Josh1982]

I have to get surgery May 9. Ouch!! I went to the doc's today to get an AFP test result back and it was 16. It started a 751, then 2 rounds later 80 something, then 38 I think and then 20. I haven,t had chemo since April 4. The bep mix, and it's been over a month since I've had the full week. How long does chemo keep dropping the afp for. I was pleasently suprised to see it still going in the down direction. I thought it had become resistant though. Can anyone make sense of this better than me. I don't know what it means if anything. I still have cancer but just a little bit or what, and will it keep dropping without the surgery or go back up. A little bit is a little to much since it's likes to reproduce so much, so surgery is a 100 percent thing, I'm just curious about the infamous and dreaded, but loved when non existant afp level.

[petep]

hi josh...

I just finished my 3 BEP -

but each monday while at Jackson Memorial in Miami I'd run into a guy who had the same thing you have, by your description...testicular cancer, but only in the chest..

he was misdiagnosed several times at other hospitals/docs and finally an oncologists had the sense to send him to dr benedetto in miami. By the time he had gotten to miami he haad already been operated on.

he had surgery first, when they did not know what it is...is going through 4 BEP and doc said he may need surgery afterward if the tumor does not go away entirely...they did not remove it all the first time, as some tissue was close to a major vessel and the doc was not comfortable.

pete

[mrb1980]

Mediastinal Cancer

Josh,

My understanding is that mediastinal TC is a tougher nut to crack than "regular" TC, thus the surgery after chemo. I had primary embryonal cell carcinoma in ol' lefty, which apparently bypassed the lymph nodes in my pelvis and jumped straight to my chest. My condition was diagnosed when my AFP levels failed to drop after the I/O and a CT found an enlarged mediastinal lymph node. I was treated with 4XBEP, which is standard treatment for mediastinal cancer. It worked, my AFP dropping from about 300 to 1.9 after four (grueling) chemo cycles. I'm still clean after 6 months.

I agree with dadmo, your upcoming surgery plus possibly more chemo has a good chance of success. Look, I'm almost 50 and I survived mediastinal cancer, at least so far. Please let us know how you're doing.

[Josh1982]

Halo

You guys rawk!!! I love hearing back...sometimes I feel like the only person in the world going through this. It's too bad I'm not, but cool to hear from people who are. Chemo, sucks!! It's seems so barbaric. 2006. We're on mars, but no cure for cancer. I have a feeling down the road we'll be telling war stories of chemo and no one will undrstand what we mean. Anyway, I have surgery in four days. Yikes!!! What a creepy feeling. Go under the ol'e saw. Death to the TUMOR!!! dIE!!

[mrb1980]

Good Luck Tomorrow

Josh,

We'll be thinking of you tomorrow. Hope things go well and when you can let us know how the surgery went.

[IowaBrian]

Good Luck "Death To The TUMOR!!!!!!!!!!!!!!!!!"

[jdunn]

Hi Josh,
Thinking and praying for you today. Be tough, young soldier.