Path Report back

[wjhall]

Hi Everyone,

I got my PR back today. Tumor markers - Normal, Classic Seminoma, 2.8 x 3.2 x 2.3, Confined to within testes, Intratubular germ cell - absent , Angiolymphatic invasion - absent, Spermatic cord - neg for tumor, Tunica albuginea - neg, and rete testis - neg. Stage T1.

All sounds great, but 2 questions: Should I get a second opinion on the absent invasion of angiolymphatic? Do insurance companies usually agree to pay for second opinions? Doc says probably some radiation just to be safe. See an oncologist Aug. 16.

On a side note, I told a co-worker (57 years old) about my experience today and he has the same symptoms. Aching, enlarged and a large hard mass.

Another side note, I read in Men's Health Mag. that they can now look at your DNA to determine any genetic defects that result in disease ( ex heart disease) that you may be more prone to. Gives you a chance to maybe change habits that could prove extra harmful. Anyone heard of this?

Jay

[dadmo]

I would get a second opinion only because if you are clean, as the path report indicates, you should be a candidate for surveillance. I would save the radiation for future use if it is trulely required and not have it now to just sort of clean up a bit. I would think a second opinion that could eliminate treatment would thrill an insurance company.

[Rune]

I agree with dadmo. If there's no invasion, the risk of spread is around 20%, so if you can handle the extra stress that goes with surveillance, I'd recommend that.

[tlh]

wjhall,

Congrats on the good path report. I actually had the exact same path report (Seminoma stage 1 w/negative invasion) with the exception that my tumor was 1.0cm x1.0cm x 1.4cm. I spoke with the rad oncologist who suggested low grade radiation over 15 days for a total of 2700 rads. I agonized over surveillance vs therapy. I found many different percentages for the chances of secondary tumors down the road due to the RT. They were anywhere from 3-4% and less than 1% (what my Doc told me). I have decided on the RT only for my own increased peace of mind and raising the percentages of a cure. I have gotten great responses and support from the members of this forum (see the post "Treatment" under the Treatment and Surveillance Questions section of the home page) and it seems either way is a reasonable choice. I can't tell you about the insurance issue since I am in the military and haven't ever had to really deal with civilian insurance companies and how they work.

It's interesting the number of people that after you tell them about this they decide to get checked out because they have a problem. Much like your co-worker My younger brother is scheduled for an exam for much the same symptoms I had (small, painless lump). Too bad this disease doesn't get the attention and awareness ads that some of the others get.

[Fish]

I think the second opinion is a good idea also. Your chance of recurrence might actually be less than 20%, since you're over 35, tumor was less that 4cm, and there was no angiolymphatic or rete invasion. I had similar results, although my tumor was less than 1cm, and I opted for surveillance. It can be stressful, but I figured if anything showed up we could radiate then -- once we knew for sure it was necessary.

Of course, RT now or surveillance, either is an acceptable choice.

Best wishes.

[wjhall]

Update

Went to the Oncologist today. Opted for the radiation therapy. Insurance really made my decision for me. Co pay and deductable are zero for RT treatments. CT scans are 10%. With radiation you have far fewer CT scans. Also, I don't want to have to think about it anymore. Peace of mind is worth alot. I start treatments tomorrow. 2500 rads for 17 days.

Seems very insignificant compared to some of the other members situations. I keep you all in my prayers and look forward to hearing good news. Stay strong!

Jay

[dadmo]

Peace of mind is a great thing to have. I'm sure you will handle the RT without much problem. Good luck.

[Don]

Best of luck with the RT Jay!!!!!

[luckydog099]

Hello everyone, my name is Paul, and no offense Don, but it sounds like you've been through hell and back. I have been fortunate enough to have caught mine early. 1.2cmx1.6cmx0.6 cm 55% embryonal teratoma and 45% non seminoma completely within the right testicle. My orchiectomy was done 5/8/06 and right now I'm doing a 5 year sueveillance, due to a recent complication with my NS-RPLND. They tried for an hour and a half to put my breathing tube down my throat and I kept waking up, I pulled out my foley catheter, and ended up in the ER 5 days later, dehydrated and lost 20 pounds, and an inner ear infection. But, enough about me. Don, you mentioned you had peripheral neuropathy, being a nurse, I'm aware of a fairly new drug called Lyrica specifically targeted for neuropathy. I don't know if you currently take anything, like Neurontin or some of the other meds, but if your having any pain, it might be worth asking about. I have administered the medication myself to patients and have seen an improvement. I know it comes in 25mg, 50mg and 75mg capsules and usually given twice a day. So far, all my CT Scans have been clean and my bloodwork has been normal. Although my bloodwork was normal before my surgery too, so I'm hoping I'm in that 75% that is cured with the orchiectomy alone. If I can help in anyway, please let me know, and that goes for anyone. Sorry for the length of my post, but hope all is well with everyone, and we ALL have no further complications. Thanks. Paul

[Sans rt1]

wjhall - -

Now that you have made your decision to go with the RT, you can relax and know that it is a reasonable decision. There are alternatives, but all have their pros and cons. RT is a proven treatment for seminoma.

I wish you little discomfort during and quick rebound after your RT is complete. It will be behind you before you know it and you can look forward to being cured.

[Rune]

Jay,

Good luck with the RT - I hope you will soon have put all the worries behind you. I can definitely understand why you'd want to get it over with.. surveillance is quite stressful.

And welcome to the forums, Paul!

[luckydog099]

Thank you for the welcome Rune. And to Jay, good luck with the RT. And Jay, sometimes with RT you can get a radiation burn, depends on how sensitive your skin is and intensity of the RT. But there is a product called Rada-Gel, which is basically Aloe Vera gel, but you can't apply it 2-4 hours BEFORE RT. The aloe gel is alot cheaper and works just as well, and again, best of luck to you. Paul

Right radical orchiectomy 5/8/06, 5 year surveillance, CT Scans clear, beta hCG <0.5, AFP 2.9, LDH 184

[wjhall]

Update

Hi everyone!

Finished my 14th out of 17 treatments today. Radiation has not been that bad. I felt tired at first but not so much now. Felt nauseous when my stomach is empty. Eating usually makes it go away.

Treatment did not include the dogleg potion that I had read about. Only treated the para aortic?? (abdomen area). I was a little nervous but he gave me some literature that did indicate reoccurence in the dogleg area was very unlikely. I am happy with less radiation!

I will update again when finished and have follow-up urologist appointment.

Jay

[Fish]

Glad to hear its going well. It'll be great to get the treatments behind you.

Best wishes.