My Story - Scared to Death

[ronniereb]

Based on the discussions I had with the oncologist yesterday I think I am taking the same route. Surveillance he told me would have to be every couple of months for the rest of my life, I guess I am willing to deal with the radiation to try to avoid that.

On another note I am still having trouble getting over the orchietomy (sp). Its been 12 days now and I had to have the incision re-opened today because it got infected

[Matt_24]

Fortunately my incision is healing fairly rapidly. It has been 20 days since my surgery, and I just have some very moderate soreness...but still the weird sensations which the doc said is normal. My radiation doc did a checkup on me the other day (the other testicle felt normal - yeah - I already knew that, but was nice to hear it from a pro) and said, "Wow, they did a nice job on your incision."

I'll tell you, it all seems a bit overwhelming still. Even though I've already received my results, I have to do a PET scan tomorrow......and I still have that eery feeling of "What if" they see something on this one that they didn't see on the CT. My Doc said there is only a 10% chance that they will see anything. Monday I have to go for my radiation simulation.....and then back Friday for an additional test (not sure what...perhaps a 2nd simulation) and the following Monday I start radiation (for 5 days a week, 3 weeks straight). So, still a lot yet to come --- but taking it one day at a time. Beating cancer is a full time job, but someone has to do it.

I'll also share that I'm kind of going through this, "Ooh..I feel a pain, could it be cancer." Driving my wife nuts....but she is a sport and asks, "Did they not just check your tumor markers and they were negative?". This brings me down to earth, and hopefully I won't become a full-fledged hypochondriac. LOL

Good luck, and keep up the good fight!

[djmac]

Based on the discussions I had with the oncologist yesterday I think I am taking the same route. Surveillance he told me would have to be every couple of months for the rest of my life, I guess I am willing to deal with the radiation to try to avoid that.

Not true... You will get CT scans, chest x-ray and blood work at 4 month intervals for the first 2-3 years, and 2x yearly until year 5 or 6. Then once a year.

Don't forget, radiation does not guarantee a cure, and you will still have to do follow-ups...albeit not as frequently and with no CT in the irradiated areas (you'll still have to do pelvic if you get paraaortic only). So I would carefully weigh your options. Your age is one prognostic factor in favor of surveillance, so is the absence of LV invasion. If you had a small tumor with no rete testis invasion, you might consider surveillance.

Good Luck!

djm

[ronniereb]

Here's just a little update on my story. Although pathology indicated a stage I seminoma my CT scan revealed 2 enlarged lymph noded between 1-2 centimeters in total size. My oncologist said there was absolutely no way to tell if they were related to the seminoma, were swollen because of an infection I had in my incision or if mine were just normally a little bigger. He said I should absolutely go with the radiation (24 treatments). I am not sure how to take this news, he seems to think it is nothing to be overly concerned about but 24 treatments seems like a lot.

[Margaret]

Ronnie,

I am coming in late but I have been following you and your progress. 24 treatments is scary and I am sure it would be a lot for anyone to endure, but keep telling yourself that those 24 treatments will lead to a cure. Some try everything the doctors throw at them and a cure never comes, but I am certain with your case...that you will have a a very happy future. Come here all you want for support, there are many caring people here who are pulling for you.

Margaret

[Fed]

Hey Ronnie,
Under the circumstances you described, radiation sounds like the right approach. Even though 24 treatments seems like a lot, the total amount of radiation you would be getting is somewhere between 25-45 Gy. This really isn't a lot; for other cancers, the doses are considerably higher. Many have posted here on managing side effects and the like, and RT is a well-proven method for the treatment of metastatic seminoma with 5-year survival rates of over 98%. Hope this helps ease your mind a bit.