Thanks Guys

[TommyTwoTimes]

I just wanted to say thank you to everyone that contributes here. As of May 8, I am a member of the 2x club. Even though I was pretty calm this time around, it is still comforting although unfortunate that I am not the only person in the world going through this.

I have been fairly lucky in my journey. My first bout was non-seminoma in September 2001...mainly embryonal carcinoma. I went through surveillance without a glitch. I did however have many microcalcifications in my remaining right testicle, so I knew there was a realistic chance of that one having to come out at some point. I felt a lump in early March, but it was at the very bottom and I had a glimmer of hope it was a cyst. After it didn't get any smaller, I started the familiar battery of tests.

Seminoma this time around. No lymphatic or vascular invasion, so I feel good about my prognosis. I am 32 now, and luckily banked sperm before my first surgery...although it has such a low count ( < 1 million/ml) that I need to do the petri dish thing if need be. It was one less thing to worry about this time.

Now for the decision. I talk to the doctors Wednesday. I am leaning towards carboplatin...for the simple reason there is no better time for me to go with it since insurance is a real ??? over the next 5 years in this economy. My tumor was 2cm, but I have never registered positive for any tumor markers and I am built like an Offensive Lineman and the CT scan sometimes isn't 100% definitive. I have already had 20 CTs and 30+ Xrays from my first tour of duty, so I am not thrilled about having to almost double that total. If I opt for radiation, that is even more zapping.

After going through this twice....and sort of keeping one eye open for the microlithiasis to sprout up into a tumor, I would love to give myself the best chance to not have to battle again. I know the pure numbers play leans towards surveillance, but given all the tie-ins, Carboplatin looks to be a great choice.....one that would have been nice to have the first time even though it was non-seminoma. I'm not even sure which way they will lean, but they are pretty progressive as they offered the potential for a partial orchiectomy which I declined given that my testosterone was 125 and I am infertile anyway.

Any suggestions would be appreciated. I feel pretty good even though I have been without HRT so far. I pounded them the day of surgery, but the fact that I was so low to begin with led them to want to wait for the pathology before starting me on anything. I have been getting a bit flushed the past few days, so I am going to make sure I at least get an injection Wednesday even if I have to wait to get some gel.

Thanks for the support. Now that I'm part of the crew, I'll try to offer any help I can.

Tommy

[Kiwi]

Hi Tommy

Hey mate - there are others here too in the same situation.

What ever the Docs Tell you head for the Testosterone replacement start ASAP - don't wait too long.

Cheers

Kiwi

[Aegean]

Hey Tommy,

Welcome to the forum and, as we tend to say, sorry for the price of admission.

You seem to have a great attitude and that is important, but, as Kiwi said, you should get your doc to get you on HRT asap. Those flushes or hot flashes will not go away on their own, as your T levels are now near zero.

Carbo is a good option and I would tend to agree with you about getting RT after so many CT's (even 30 CXR's do not equal 1 CT BTW). Just remember that after the carbo, you will be on surveillance anyway and the CT's will continue, just at a slower pace than on pure surveillance (so once every 6 months at first).

Although opting for the carbo sounds like a sensible choice, at least discuss the option of surveillance with your doc as there could be valid reasons to consider it. You have 6 to 8 weeks, generally speaking, to get that carbo injection(s) and then fall on surveillance by default.

Good luck and keep us posted.

[TommyTwoTimes]

Thank you for the replies.

Kiwi....just got my Androgel packets. I didn't expect there to be so much to put on with only 5g! I am interested to see the results as my testosterone was 300 before my first surgery in 2001 and 125 before this one. If I am at 600-800.....Katie bar the door....and any other ports of entry!

Aegean....thank you for the timeframe on starting chemo. I only was told over the phone last week that it was seminoma with no Vascular or Lymphatic invasion....but what the resident failed to tell me was that there was rete invasion and the tubules were filled with cancer cells. The doc says radiation or Carbo makes sense, but he trusts radiation more at this point. I will talk to both departments next week and decide. The end of next week makes 4 weeks so I know not to lallygag here. No matter which way you are right....CT in 3 months to start.

[Aegean]

Aegean....thank you for the timeframe on starting chemo. I only was told over the phone last week that it was seminoma with no Vascular or Lymphatic invasion....but what the resident failed to tell me was that there was rete invasion and the tubules were filled with cancer cells. The doc says radiation or Carbo makes sense, but he trusts radiation more at this point. I will talk to both departments next week

Carbo and RT both have nearly the same cure rate, with a possible relapse of 4-5%. With rete teste involvement, your relapse chances would move to 25-30%.

Docs usually prescribe RT because it is the textbook treatment and has been around for decades while Carb is relatively new with only a 10 year, or so, track record with TC (although longer than that in other cancer therapies). The research is promising and the cure rates seem to be excellent, and you avoid possible secondary cancers in other areas (colon, rectal, kidneys). On the plus side for RT, most centres are now using very precisely targeted methods and do not do a general ab/pelvic "carpet bombing" approach anymore. The amount of radiation used has also decreased a bit as seminoma responds extremely well to it.

Talk it over with both oncs and make your decision based on what is right for you. Either way, the cure rate will be close to 100%, and bang on if you stay on protocol after treatment.

[AdrianE]

Hello there,

Welcome to the club, as always sorry to welcome you to the club.

Our cases are very similar, both in our ages and the fact that we had both seminoma on one, and non-seminoma on the other. And the sperm count, lower than low. I opted for the surveillance route myself. I understand why many guys will opt for the added peace of mind of single dose chemo. But not for me, a strict surveillance schedule will catch any later problems. And if I can avoid having to put any chemo into my body then I am very happy.

As for the HRT, that will probably be a bit of a trial and error process. But for a big guy like you, 5 grams Androgel seems a bit low of a dose. I was on 10g daily, and I'm more the wide receiver type.

Let us know how it all goes for you,

Adrian