New to the group, IIA seminoma and a hard decision to make

[bollux]

Hello all! I´ve been following this forum for about a month and I like you all a lot, and I think it´s time to share my thoughts and fears with you guys, so here´s my story:

Left testicle pure seminoma with no rete or tunica invasion.
Left orchidectomy 11 august 2007 no AFP or BHCG
08-17-2007 CT showed one para aortic node with 1,2x0,8cm
08-29-2007 PET-CT showed the same node with 1,5x1,1cm
AFP and BHCG normal, LDH 208u/i (is this high?)

With the above data presented, I want to ask you what you think of my treatment options.

The doc said I could do 3xBEP or RT (probably 30Gy in 15 sessions)

I simply cannot decide which I should go, because if the is posterior recurrence I will damn my decision forever...

Is there any evidence of which treatment is best for this stage in a seminoma?

And a final question: I have been feeling for some time (months) a small temporary pain just behind the right side of my pectoral muscle, could this be a completely out of place metastasis? The scans didn´t show a thing in this area and the doc have not felt any swollen node.

I´m really afraid that if I get RT this little stuff will grow sometime in the future...

Thank you all! If someone had a similar experience, or anything to say, I´ll be so glad! =)

Daniel

[Fish]

Hi Daniel and welcome:

You do have a tough decision. If I were you, I would probably contact Dr. Einhorn at IU for a second opinion:

Dr Lawrence Einhorn
Dept of Medicine
Phone: (317) 274-0920
Fax: (317) 274-3646

He's one of the best and responds quickly to questions.

If your CT covered your chest and didn't show anything in the area where you're having pain, it's doubtful anything is there, modern CT's are very sensitive. As for the LDH, the lab that did the test should provide a reference range. If you look on the web you find a variety of ranges, so I would want to know the range specific to your lab's procedures.

RT should definitely kill any seminoma that is in the radiation field, the question is has it progressed beyond that node in amounts too small to detect, just a few cells. That's where the opinion from an expert comes in handy.

Also have you checked out http://tcrc.acor.org/
Lots of good info.

I'm sure some other folks here give will you some great info too.
Keep us updated.

Best wishes

[Scott]

Hey, Daniel, good to hear from you. The NCCN guidelines list only radiation therapy as a standard choice for stage IIA seminoma.

(Your LDH looks normal. As Fish said, the lab report should include a reference range, which will vary from one lab to another, and indicate whether a measurement falls outside it.)

Keep us posted.

[Margaret]

Hi Daniel, I am not as sharp as some of the guys in here as far as the medical advice goes. My husband was stage III so we had no choices to consider when looking at next steps. It was 4 X BEP, no questions asked. I know this is a tough choice to make, but I always lean towards being as agressive as possible. The cancer won't mind pulling out all the stops so fight it with all you have got. No matter what your choice, welcome and we are happy to have you here.

If there is anything you need from us, please just ask.

M

[Mom]

I would certainly contact Dr. Einhorn. However, personally, I believe in treating this cancer aggressively. I wouldn't trust the radiation to get it all. Dianne

[Fed]

Hey Daniel,

Welcome here. So far you have gotten good advice on all fronts, but now I'm going to say something that is a bit on the fringe here. I just mentioned this in a different thread, but I will bring it up again here with more detail because it actually concerns a case very similar to yours. Last year, there was a post by TSX, one of our members who was dealing with exactly the same dilemma you were: deciding a course of treatment for stage IIA/B seminoma. He was given the same options you were.

The thread is very well-written and quite self-explanatory, but in a nutshell (no pun intended), here's the take-home message. RT is, in fact, the standard of treatment for IIA/B seminoma as outlined in the NCCN Guidelines; however, Dana-Farber (where I work, am a patient, and where TSX was treated), has adopted novel stances for perfecting treatment. As noted in TSX's thread, the doses for RT for treatment of IIA/B seminoma are very high, and the long-term risks of secondary malignancies from the radiation treatment are rather high, especially at these high doses. 3xBEP, while not the "mainstream" treatment for IIA/B seminoma, is gaining traction as more effective and lacking the long term effects radiation might have. My oncologist here at DFCI also said the same thing to me: if I were to relapse (knock on wood), I would get 3xBEP and not XRT.

Looking at a second opinion is a good course of action. Seminoma is slow-moving, so you have some time, but don't delay too much. Keep the questions coming. Best,

[bollux]

You people are unbelievably kind to answer this quickly!

For sure I´ll get a second opinion, unfortunately I live in Brazil and cannot contact doctors outside here, but anyway those posts shed me some light about what to do. XD

Thank you a lot!! I´ll keep you all informed in the next days

Now I have to rush to find a cryopreservation clinic, don´t wanna lose my little guys since I´ve never used them seriously

Best wishes

Daniel

[Scott]

3xBEP, while not the "mainstream" treatment for IIA/B seminoma, is gaining traction as more effective and lacking the long term effects radiation might have.

It's important to recognize that chemotherapy may have long-term effects of its own. See this link, which describes potential issues with fertility, secondary leukemias, renal function, and hearing.

[Karen]

Daniel,

A consultation with an expert can be done regardless of location, as far as I know. The experts in the US are quite responsive to e-mails as well. It's a tightrope walk with early stage seminoma. You will need some treatment, and each has risks and benefits. An expert opinion as well as doing research on your own may help you make a choice, if you are presented with one. Please look through teh Research Library on this site for current publications on treatment of seminoma.

[Fed]

It's important to recognize that chemotherapy may have long-term effects of its own. See this link, which describes potential issues with fertility, secondary leukemias, renal function, and hearing.

All of these things are true, but there are things that should be noted to this effect. Issues with renal function and hearing are produced by cisplatin. Renal function problems are preventable by constant hydration and the use of diuretics. The hearing problems are a consequence of nerve damage which is cumulative and more common in people undergoing 4 cycles of platinum rather than 3. Secondary leukemias are likely caused by etoposide, since it's really the only one of the BEP triad that has myelosuppressive activity.

Like I said before, the issue of chemo vs. RT for IIA/B seminoma is currently part of the clinical debate. This is just like the choice of surveillance vs. RT for stage I seminoma. Each treatment has its trade-offs, and other factors such as family history and extent of disease should be taken into account when making a decision on treatment when there is no clear-cut way to go.

[dadmo]

Daniel,
I wish I could help with your decision. Both courses of action can cure you and as you are aware both can have serious side effects. If you have any chance discuss this with an expert so that your comfortable with the choice, and the choice is yours and yours alone. My only real advise at this point is to tell you once you pick a course of action don't ever second guess yourself just keep moving foward. For me I would pick the one with the best chance of a cure now and let tomorrow take care of it self.

[Fish]

A consultation with an expert can be done regardless of location, as far as I know. The experts in the US are quite responsive to e-mails as well. It's a tightrope walk with early stage seminoma. You will need some treatment, and each has risks and benefits. An expert opinion as well as doing research on your own may help you make a choice, if you are presented with one.

Daniel,

Karen's right. I think if you email Einhorn, or one of the other experts with the details of your case, they will offer their opinion.

Best wishes.

[Scott]

I remembered today that I meant to add one more thing to this thread: Isn't it awesome to be talking about the possibility of long-term effects? The most important effect of these treatments is, of course, saving lives.