hbr777
Registered User

Thank you for the friendship! If I can do anything to help you psychologically feel free to write to me! Hugs!

Hi Megan,

Oh, good to know about the 3XBEP. My heart skipped a beat thinking a doctor was telling him he just needed 2 rounds. Let's hope for 3 rounds. Seminoma, I have been told, "melts like butter" in the face of chemo.
They originally thought my husband's cancer was lung cancer and the first oncologist was thrilled that it wasn't. Then they also thought thymic which is a death sentence. Then, we were on pins and needles knowing it was a primary mediastinal, until we found out it was seminoma, as the non seminoma primary mediastinals have a much worse outcome than seminoma. Pure, terror, isn't it? Seeing that giant tumor on a CT scan and knowing it is in his chest? My husband had a cough, night sweats, and severe upper back pain. And he had been tired for about a year. But nothing that points to a cancer. Good Lord, it gives me the chills to just think about it.

Just an FYI. These messages are not private. Anyone who looks at my page here can see our conversation. You can send me a personal message or an email. It might be more private.

Long term effects: chemo can destroy testosterone, so it is important after chemo and a few months have passed to get that tested if he has any systems. My husband has some ear ringing but not bad (from the Cisplatin) and has permanent dark scratch marks from where he scratched his skin during chemo (from the Bleo).

As for the oncologist, it is not necessary to be treated by a specialist, but your husband's cancer is rare, and does require some decisions that are not run of the mill, in terms of surgical intervention after chemo (it is not usually done). Also, oncologist who are TC specialists know the ins and out chemo - for instance, that in this situation, chemo is NEVER, ever delayed. Not because of holidays, low blood counts - nothing stops it. Unless an oncologist is a TC specialist, he or she might be inclined to skip a day of chemo or delay it for whatever reason. It is NEVER delayed unless the white blood count is zero. To keep that from happening, Neulasta or Neupogen shots are given. It is very important for a mediastinal seminoma treatment to rigorously follow the chemo schedule.

As for chemo side effects, my husband had a hard time with them. Everyone is do different though -some people sail through chemo and others have it rough. The effects of chemo are cumulative - each round builds on the other in terms of effect on the body. Is your husband able to work? Mine was not able to do anything. But, the thing to remember is your husband will recover quickly when chemo is over! And he will be CURED. Not just in remission. CURED.

If you tell me which state you live in, I can give you the names of TC specialists. Even if your husband is not treated by one, it might be a good idea to have his case overseen by a specialist, since primary mediastinal is not a run of the mill case.

I know it seems like forever right now, but you all will get to the end of this. There will be ****ty days, and other days believe it or not, where you all will find humor in the situation. Patience was my key word. You probably need to be his eyes and ears for the next couple of months as his thinking may not be the sharpest. And when this is all over... then you can relax!

Take care, and email me or Facebook me,
Heidi

Hi Heidi,

Thanks for responding to my message so quickly. I really appreciate it.

Oh, and I realized that I meant to type BEP x 3 and then maybe another round after if the tumor is more than 3 cm...I must have been more tired than I though last night when I wrote that

I am coping well, considering how hard the past month has been in general...I think the not knowing was the most difficult part, especially since the radiologist who did the CT scan thought it was thymic carcinoma originally, which has a much worse prognosis

I am very grateful and relieved to know that it is a curable form of cancer, although I was upset and worried about the chemotherapy treatments. All of the chemotherapy side effects make me a little nervous, but I am just very grateful that it is so effective in treating this type of cancer. If you don't mind me asking, did your husband have any long term side effects from his chemo treatments? Also, did the side effects seem to get worse or change with each additional round of chemo?

My husband is being treated by a local oncologist that was referred to us by his primary care doctor. We have an hmo insurance plan, but his doctor was more than willing to refer us to a different oncologist if we did not like the one he referred us to. We do like his oncologist enough, and after researching how this is treated, I do feel comfortable with his treatment recommendations thus far. But after reading a lot of posts on this forum, it does look like a lot of people do go to oncologists that specialize in this type of cancer, which has me a little worried. Do you think that it is a better idea to go to an oncologist who has specific training/experience with this type of cancer?

I am glad to hear that your husband is doing so well I will keep my fingers crossed for you two this month, although I am sure that everything will come out great. It's really encouraging to see other people who have gone through this treatment, especially your husband's case.

Thanks so much for all of the encouragement and information you have given me

- Megan

Hi Megan -

How nice to hear from you! Wow, your husband's diagnosis is almost exactly that of my husband. My husband's tumor was a bit bigger but other than that, almost identical.

How are you doing? Coping well? Your husband will beat this and he will be healthy again. This is a terrible disease with a brutal cure, but it is a cure. It is probably one of the most curable forms of TC.

Where is he being treated?

The protocol for primary mediastinal seminoma is always 3X BEP for good risk disease and never 2X BEP. Chemo is what cures this as surgery in that area is really tricky. Chemo melts seminoma like butter, so to speak but it is important that the 3 rounds be done, even if the residual tumor is less than 3 cm. After 3 rounds, after 6 weeks you have a PET and see what is left. Usually, nothing is left but dead, icky residual tissue.

I'd really clarify with his oncologist the 2 versus 3 rounds of chemo. Standard procedure is never 2 rounds of BEP. You can also check the NCCN guidelines for TC - it is a recipe, so to speak, for TC treatment. You'll need to make a user name and password to get access but it is what the doctors use for guidance in treating TC.

https://subscriptions.nccn.org/gl_lo...testicular.pdf

My husband is doing really well. Chemo was rough and it took a few months to recover from it. He has a CT scan this month, to see what's up with the residual tumor, and he also had some possible tumors in the lungs (or maybe not, maybe they were just scar tissue) so they monitor those too. It is nerve racking each time he has a CT scan and blood work, but we are 1.5 years out of chemo and everything is just fine so far.

This site is chocked full of info - it really was a life saving site for me and my husband. Each step of the way through chemo when I had questions I always got knowledgeable answers.

I am so glad you contacted me! I am sorry for what you are going through but please know that he is going to be fine and all will be well again, even though right now it might not seem like it.

Please feel free to contact me on Facebook - Heidi Barry-Rodriguez or via email heidirodriguez777@yahoo.com.

Take care,
Heidi

Hi there

I am new to this forum, as my husband was recently diagnosed with primary mediastinal seminoma on 4/6/12. And while I it's horrible to be going through this, I feel very lucky to have stumbled upon this site...it has been hard to find information about anyone who has seminoma in the mediastinum as their primary location.

So, anyhow, my husband is 26 years old and feeling well for the most part (knock on wood!), we were lucky to have found his tumor coincidentally on a chest xray that was ordered by his PCP to check for an upper respiratory infection. His tumor is ~ 8.5 cm x 4.5 cm per the CT scan he had, and his biopsy (obtained via chamberlain procedure) came back as pure seminoma. I believe his LDH is 197 and his b-hcg and AFP tests came back at 1 for each level. My husband is currently in his second week of BEP x 3, and it is going okay now that we have his heartburn under control, however, he has his ups and downs with each treatment.

My husband is suppose to have another CT scan after round two of the BEP, and if his tumor is less than 3 cm he will be monitored, otherwise I believe we are in for another round of BEP and possibly surgery...it seems, per my research, that this standard procedure for his type of cancer.

So, I just thought I'd check in to see how your husband is doing, and to see if you have any advice. I am a little worried about the next CT scan, as I think I the original CT scan result has traumatized me a bit! This has truly been a life changing experience, to say the least!

Thanks for letting me share my story, and any any advice would be so appreciated

-Megan