Orchiechtomy - 1 year later...

[Arnie335]

Hello all,

It's been roughly 1 year since the removal of my left testicle. I lost about 15 lbs. during and after my Radiation treatments and have been taking Megestrol Acetate to gain some wieght back. I've managed to gain 10 pounds back so far! sweet! But I am experiencing some new problems and Im not sure if they are related to my current medication. I'll also list my post surgery problems that still exist. Any help is appreciated.

1) Underneath my belt line, about 5 - 10 times a day there is a wierd Muscle Spasm that occours.

2) I still have very sharp pains in my scrotum. The pain increases when im in a cold environment.

3) Is it still normal to be numb in my upper thigh and left side of my pubic area?

4) Loss of Sexual interest. I no longer have the urge. My significant other has been very understanding, but I feel terrible. Is my testosterone low?

Thank you guys so much. My insurance isnt the best, so I can not always just waltz in my Dr's Office.

[Karen]

Hi Arnie,
Male impotence is a side effect listed for Megastrol Acetate. Do you still need to be on it? Now that you've gained back 10 lbs pehaps you can alter your diet to keep the weight on. Symptoms 1-3 may still be nerve damage, but I leave it to the guys to comment on that.

[fuse929]

Low testosterone was the first thing I thought of when I saw lack of sexual interest. It probably wouldn't hurt to get your t-levels checked. Did you have them checked pre-I/O to form a baseline?

I can't comment on the other things due to not suffering those effects, but I does seem like nerve damage is possibly to blame.

[Fish]

Hi Arnie:

I have complete numbness directly over my scars, and partial numbness extending about 1-1.5 inches away from the edge of the scars. What you're describing sounds more extensive. The scrotal pain is unusual, I have not experienced it. If it's worse when cold, it sounds like it is related to muscle contractions in the scrotal skin.

[Arnie335]

Thank you for the quick responces. No, I have not had my Testosterone Levels checked. Ive talked to my Dr about how I've been feeling lately (sad, tired, waking early, constant thoughts in my head, irritable etc) and he is referring me to a head Dr to find out whats going on. I think all the symptoms ive listed could have to do with low testosterone. Wouldnt he see the connection there and ask for some tests? Welcome to the wonderful world of HMO.

Is it wierd that I have not had any blood tests since my Surgery? I think this is something they would want to monitor, or at least check once in a while. Anyhoo, i'll keep you guys posted on my progress. Thanks for listening.

arnie

[Margaret]

Thank you for the quick responces. No, I have not had my Testosterone Levels checked. Ive talked to my Dr about how I've been feeling lately (sad, tired, waking early, constant thoughts in my head, irritable etc) and he is referring me to a head Dr to find out whats going on. I think all the symptoms ive listed could have to do with low testosterone. Wouldnt he see the connection there and ask for some tests? Welcome to the wonderful world of HMO.

Is it wierd that I have not had any blood tests since my Surgery? I think this is something they would want to monitor, or at least check once in a while. Anyhoo, i'll keep you guys posted on my progress. Thanks for listening.

arnie

You have not had blood work done since your surgery a year ago? I would think they would be doing blood draws every 3 months or so. And yes, your Testosterone being low can cause many of the things you are feeling.

[Fed]

Whoa... no blood work at all? Even in the case of seminoma treated with radiation, markers are a necessary component of your post-Tx surveillance (every 3-4 months is recommended for year 1, every 6 months thereafter).

[fuse929]

The "no-blood work" is shocking to me too, Arnie, due to surveillance for seminoma lasting up to 10 years before doctors will finally say "you're cured." I would shoot an e-mail to your doc and see if you can get it checked at your next visit, just to ease a bit of worry.

[Arnie335]

The "no-blood work" is shocking to me too, Arnie, due to surveillance for seminoma lasting up to 10 years before doctors will finally say "you're cured." I would shoot an e-mail to your doc and see if you can get it checked at your next visit, just to ease a bit of worry.

I just called to speak with my Dr. and he is out for the day. Now Im a little paranoid.. with all the pain and weird sensations. How common is it for the cancer to come back after radiation? Is there were traces leftover, could they spread to my right testicle? Thank you.

[Fed]

The 5-year relapse rate for seminoma treated with radiation is about 2%, hence the need for check-ups. The testes are encapsulated inside hard, shell-like tissue, so spread from one testis to the other is highly unlikely. For the same reason, it's almost impossible that part of the tumor "stayed behind" after the I/O. Something like that would have become evident during pathologic assessment. You should, though, keep getting markers and chest X-rays as part of your surveillance. Check out the NCCN Guidelines for details on follow-up.

[fuse929]

Usually if you get cancer in the surviving testicle, it is a completely new situation, and therefore has no connection with the previous case (that is why TC2 is so rare). I believe that TC survivors have a 2% chance of getting cancer in the remaining testicle, which is significantly higher than getting TC in the first place (.03% if I remember correctly), but still quite low.

As for your other question, I believe that radiation after a pure seminoma diagnosis gives you between a 95-98% chance of being completely cured, so I would have to say by the numbers the chance of a relapse is quite low.

I hope this eases your mind a bit.

Bobby

[Arnie335]

Hey guys! Sorry it took so long to respond. I was on Vacation in Cabo san Lucas

Anyway, I saw my Oncologist and he had me take a Blood Test to test HGC, testosterone and some other things. He also made me an oppointment with my Urologist here in a few weeks. No CT Scan until April 2008 (whew). My results should be in soon and I will post them. Thank you guys!

Arnie

[Arnie335]

another update.. I called the Nurse for my results and she said my Testosterone was Out Of range.. She said they were Higher than they should be! What does this mean? I was taking Megestrol Acetate (Megace) and ubruptly stopped taking it. But as far as I knew, it LOWERED your testosterone. Anyway she is having the DR call and explain what would cause this..