surveillance can be a pain

[ramfan13]

Hi all. I have been scanning the forum and keep coming back when I feel a little anxious. I was diagnosed with Sertoli cell tumor and had left IO 8/05. I have been on surveillance ever since then since the DR. did not think it showed signs of spread. I know of course the facts about Sertoli and if it does spread, there is no treatment for it. I keep worrying about this and every pain I have, I think it is spread. CT and x rays at the time were negative.
I think I do have some reason to be a little apprehensive and I wanted to get everybody's opinion if I am worrying needlessly. Here are my worries:

AFP continues to be elevated. It has been a little up and down, but always slightly elevated. It was 14 pre IO and same a month after. Since then it has been as high as 16.5 and as low as 12.5. My liver checked out ok with no elevated enzymes and had ultrasound on liver negative. My oncologist is not worried about AFP, but I cant help but think there is reason to be high.

I have been having Pet scans every 3 months. I had my last one 1/06. At first it came back with one right lymph node enlarged. Then my results were sent to cancer board at Barnes st. louis and they said that it actually was the ureter that lit up, not the lymph node. There did not seem to be total agreement on this, but my oncologist and urologist were satisfied with this. I still am a little uneasy about this. I asked about ct scans and x rays and he said that the PET would show him what he needs to know. I have another in 4/05.

I would leave it at that, but for over a month, I have had pain in my right side around the rib cage. It seems to be in front and go to back. Sometimes it seems to be in lower abdomen and my chest also hurts at times on right side. I just have not felt all that well also. I know that your mind can play tricks on your body with all of this, but this pain seems very real. I had it before I heard about my Pet scan results. Is this pain anything to worry about it. My oncologist did not seem to worry and did not order any further tests. Any thoughts. I know Sertoli is rare bird and nobody really has experience with this, but any thoughts would be appreciated. I read a blog from somebody who had Sertoli and it appeared to be benign also and it spread 6 months later and he died from this. I have 2 kids and need to be here. Any help appreciated. Thanks all for being there.

[Scott]

Surveillance really can be a pain, and I fully appreciate your concern. On the other hand, I think you're doing everything possible, so it's best to take each day as it comes. (That reminds me of a recent comic in which a woman says to her psychiatrist, "I was taking each day as it came, until they ganged up on me!")

Hang in there! I predict you'll be fine.

[AdrianB1971]

Hi

I fully understand your feelings. I'm thinking day and night about the posibility of reoccurence too. My AFP is oscillating adn I'm very anxios about that. This is our's curse and there is nothing to do. Try to be strong and I hope the cancer never returns to you...to all of us. And maybe we'll live enough to see the cancer cure becomes a reality. But I'm very sceptic about that. The cancer is a malfunction of the basic programming code of life. Therefore the the mankind is helplless. We have to undestand the life itself, the full mechanism of creation, before to cure a disease like cancer. Keep your tets up to date and try to be optimist. [I give you advices but I'm scarred too ]

Best regards

[ramfan13]

Thanks

I appreciate your thoughts. We just have to take it day to day I guess.
Scott, do you think there would be any benefit in getting a CT scan rather than the PET for me. My oncologist seems to be set on the PET, but I know there is some question about it for TC. Would A CT show anything different than the PET. I just want to make sure I have all my bases covered. I know if it spreads to lymph nodes, I have to catch it early. Thanks.

[Scott]

Are you having just a PET scan and not a PET/CT scan? Here's one description of the difference in purpose, quoted from http://www.petscaninfo.com/ (emphasis mine):

PET (Positron Emission Tomography) and CT (Computed Tomography) scans are both standard imaging tools that physicians use to pinpoint disease states in the body. A PET scan demonstrates the biological function of the body before anatomical changes take place, while the CT scan provides information about the body's anatomy such as size, shape and location. By combining these two scanning technologies, a PET/CT scan enables physicians to more accurately diagnose and identify cancer, heart disease and brain disorders.

[ramfan13]

thanks

I think it is a PET/Ct so I guess you get both, but my oncologist said that the CT portion is to just to give a contrast for the PET and is not the same as a regular CT. I dont know, I dont quite understand the whole imaging thing. I just am hoping the docs know what they are doing. I am betting my life on it at this point. Still got the nagging pain in right side and the elevated AFP which keeps me a bit on edge. I still wonder about AFP. I have seen others on the board who have been slightly elevated 12-18 which I am at. It seems like a lot of them have had a recurrence of cancer. I wonder if it is an early warning sign. I know docs dont worry until over 25, but I wish there would be more studies on slightly elevated AFP and TC and what it means. My gut feeling is that it means something is wrong. I mean it is very rare to have TC and very rare to have elevated AFP. What are the chances of both randomly happening together. I think logic should say that even slightly elevated AFP means something, but what do I know.