follow-up for seminoma all clear

[rhoon]

I have not posted in a while, but wanted to share my good news with the tc-warriors on this site. Like FED I had my I/O the day before Thanksgiving 2006 with stage 1 seminoma. My recent scan and tests are normal and I am feeling great. All the wierd pains I had post-orchiectomy have disappeared and I feel almost normal now (as normal as you can feel with one down there). I don't even think about my cancer a million times a day anymore!

As always I will share my experience with this cancer with everyone on this site as it happens.

Sincerely, Robin

[kellyrulez]

That's great news dude. I have the same diagnosis and I'm torn b/w surveillance and RT.

Why did you choose surveillance if I may ask? Docs' recommendations?

[Fed]

My recent scan and tests are normal and I am feeling great.

Hey Robin!
That is awesome news to hear, bro! I was wondering what had been of you, but I'm glad that all is going great. My next follow-up is coming up a week from Monday, and I am awaiting it with some anticipation.

Now to Kelly's point. When I was Dx'd, I was dead-set on RT because I wanted my chances of a relapse to be as minimal as possible (ca. 2% with RT vs. 15-20% for surveillance, both within 5 years). However, when I went to see my docs, all of them advised against RT because they think that in my case it would likely have been overkill. Their reasoning was that 1) the viable tumor found in my pathology was very small (< 1 cm), 2) there was no evidence of L/V invasion, and 3) I work, of all things, at a cancer center, so compliance with the stringent surveillance schedule would not be an issue. They also pointed out that with RT, there is a small chance of developing a secondary cancer several years (20 or so) down the road. If it does come back, then I'll get whatever treatment is warranted (RT or chemo), but there's a very good chance that I might not need either one of them, so logic said to me, "if I don't need it, why have it?" In the end, it boils down to a personal choice. This may be a bit of a conundrum because you really don't have bad choices here. You'll have to do whatever makes you feel more comfortable and not drive you crazy. Hope this helps out a bit.

[fuse929]

I chose surveillance for almost all of the reasons that Fed did, besides the whole working at a cancer center thing. My urologist told me it was the earliest he had ever seen TC caught, and that he would have only recommended RT if he thought 1) that I couldn't handle the stress of wondering "what if" or 2) he didn't think I would be observant enough of my CT/blood work tests every few months. Plus, I only live a few blocks from the clinic where I lost my nut (fun reminder ever day when I drive to the lab, haha) so it's no big deal to get to my appointments on time. Beling lucky enough to have a 1A seminoma diagnosis, I'm glad that I chose serveillance.

Bobby

[Already Bald]

I have not posted in a while, but wanted to share my good news with the tc-warriors on this site. Like FED I had my I/O the day before Thanksgiving 2006 with stage 1 seminoma. My recent scan and tests are normal and I am feeling great. All the wierd pains I had post-orchiectomy have disappeared and I feel almost normal now (as normal as you can feel with one down there). I don't even think about my cancer a million times a day anymore!

As always I will share my experience with this cancer with everyone on this site as it happens.

Sincerely, Robin

TERRIFIC!!!

[rhoon]

My treatment decision was not easy

Kelly if anyone tells you this should be an easy decision, they haven't read the research. This is truly a dillema, with pros and cons of each approach. I originally decided to have radiation because my urologist and radiation oncologist both recommended it. They also downplayed the long-term risks of radiation, which the research shows is significant.
After studying all the info I could get my hands on, I met with a medical oncologist. He is younger, and therefore probably more apt to consider less traditional treatments. When I met with him I had some research showing a decreased risk of relapse with smaller tumor size. My tumor was right at 2 cm, which I was surprised to discover is relatively small. We both felt my relapse risk is probably 10% or less. He confided that if he were in my shoes he would choose surviellance.
What finally pushed me in the direction of surviellance was this: I really don't think I will have this cancer again.
I know that this is not certain, and I may not be finished with this disease yet. (After all I would not dare miss a scan!) But the reality for me is that because I don't think I will have it again, I have the confidence to face the uncertainty of surviellance.
If my tumor had been large, or if I felt less confident for any reason, I would have chosen radiation. I am now at peace with my choice, and never second-guess it. It gets easier every day.
As I get older and more experienced with this crazy life, I become more accepting of uncertainty. After all, nothing in life can be taken for granted. The only thing we can be certain of is that we all will die someday of something!
Hope my thoughts help someone.
-Robin

[djmac]

Hey Robin,

You and I are very similar. I had a small tumor as well, and we are about the same age. Moreover, I had the diagnosis around the same time. My urologist said the same thing to me, though he used different slang..."If the tables were turned, I would choose surveillance." The radiation oncologist agreed, whereas the DO oncologist who I'm thinking of dropping was pushing for surveillance. Interestingly, Sheinfeld suggested radiation... which took me by surprise, but he said that surveillance would be fine.

1.5 cm is pretty small (though Sloan called it 2 cm). Still, it looks HUGE when you see the actual slide. One troubling thing about my pathology is that I had INTERtubular germ cell neoplasia. That means that there were seminoma cells detected outside of the tubules, and outside of the primary tumor. I saw them myself. Evil little things. It's also referred to as 'microinvasive'. It doesn't seem to affect the outcome, from what I've read, but seeing it was not fun.

Anyway, it looks like we have a nice little surveillance group. I wish you all the best, and clean scans always!

djm

Edited to add: Lack of prognostic indicators for relapse do seem to reduce the rate of relapse for surveillance populations. The prognostic indicators for relapse are: Rete testis invasion, Large (>4 cm) primary, presence of lymph/vascular invasion, <35 years of age.

[kellyrulez]

Kelly if anyone tells you this should be an easy decision, they haven't read the research. This is truly a dillema, with pros and cons of each approach. I originally decided to have radiation because my urologist and radiation oncologist both recommended it. They also downplayed the long-term risks of radiation, which the research shows is significant.
After studying all the info I could get my hands on, I met with a medical oncologist. He is younger, and therefore probably more apt to consider less traditional treatments. When I met with him I had some research showing a decreased risk of relapse with smaller tumor size. My tumor was right at 2 cm, which I was surprised to discover is relatively small. We both felt my relapse risk is probably 10% or less. He confided that if he were in my shoes he would choose surviellance.
What finally pushed me in the direction of surviellance was this: I really don't think I will have this cancer again.
I know that this is not certain, and I may not be finished with this disease yet. (After all I would not dare miss a scan!) But the reality for me is that because I don't think I will have it again, I have the confidence to face the uncertainty of surviellance.
If my tumor had been large, or if I felt less confident for any reason, I would have chosen radiation. I am now at peace with my choice, and never second-guess it. It gets easier every day.
As I get older and more experienced with this crazy life, I become more accepting of uncertainty. After all, nothing in life can be taken for granted. The only thing we can be certain of is that we all will die someday of something!
Hope my thoughts help someone.
-Robin

That's exactly right, it's not an easy decision; "dilemma" hits the nail on its head. I too have 2 docs (urologist + rad onc) recommending RT and my oncologist favoring surveillance. You mentioned researching lending support for a decreased relapse risk for smaller tumors (mine is 1.9 cm). Do you still have these sources?

Hey Robin,

You and I are very similar. I had a small tumor as well, and we are about the same age. Moreover, I had the diagnosis around the same time. My urologist said the same thing to me, though he used different slang..."If the tables were turned, I would choose surveillance." The radiation oncologist agreed, whereas the DO oncologist who I'm thinking of dropping was pushing for surveillance. Interestingly, Sheinfeld suggested radiation... which took me by surprise, but he said that surveillance would be fine.

1.5 cm is pretty small (though Sloan called it 2 cm). Still, it looks HUGE when you see the actual slide. One troubling thing about my pathology is that I had INTERtubular germ cell neoplasia. That means that there were seminoma cells detected outside of the tubules, and outside of the primary tumor. I saw them myself. Evil little things. It's also referred to as 'microinvasive'. It doesn't seem to affect the outcome, from what I've read, but seeing it was not fun.

Anyway, it looks like we have a nice little surveillance group. I wish you all the best, and clean scans always!

djm

Edited to add: Lack of prognostic indicators for relapse do seem to reduce the rate of relapse for surveillance populations. The prognostic indicators for relapse are: Rete testis invasion, Large (>4 cm) primary, presence of lymph/vascular invasion, <35 years of age.

I too have intratubular germ cell neoplasma (see here ). What does that actually mean with regards to treatment options? For example, does it mean you're in higher risk of relapse, thus makes a somewhat stronger case for RT?

Thanks!