Just got back from Urologist

[ramfan13]

Hi all. I saw another urologist today at Barnes in St. Louis. Quick backround, I was diagnosed with Sertoli cell tumor and had left IO 8/05. No signs in pathology or scans that there was spread or malignancy. Then my last PET/CT scan, something lit up on right side pelvic lymph node. Only one apparently lit up. The doc said that my path was checked by 2 doctors and they came up same result. He is also going to have a third Dr. look at it. He was giving me options of bilateral RPLND since left side tumor does not usually go to right side. He also said that we could just take out the one lymph node and do path on it. I was a bit scared since I was not expecting RPLND and Sertoli does not respond to chemo. Since my situation was so unusual, he is going to take it before a committee of like 30 urologists to get different opinions.
While we were waiting there, he said that he talked to another radioligist who did not think that this was a light up on my lymph node and may have something else like urine. At that point, I was more hopeful, but still unsure of the whole situation. He is going to call me after they meet on Wednesday and let me know what they come up with. I feel priviledged to get such attention, but wish I could just get a definitive answer even if it is RPLND. I have had pain in my right side for a while, but he did not think it was related. I asked about new PET scan and he said that they may do this, but he will wait until after committee meets on Wednesday. I have been through the gammet of emotions this last week. I hope I am on the right track and hope this is nothing, but still have some anxiety. Does anybody have any other advice or I am I doing all I should. Thanks again.

[Jens]

Hi ramfan13.
I think there is a lot of activity and a lot of speculation.
You need some facts soon, but to get there you need to play the good old waiting game.
I had biopsys taken from enlarged lymph nodes (3 in fact, ultrasound guided thin needle aspiration) to establish (beyond any doubt) that the cancer had spread.

Eventhough Sertoli cells are not germinal precursors, they are still a large part of the testicle and therefore a tumor arising from Sertoli cells is in effect testicular.
I think you should await the 30-doc evaluation and then perhaps get a 31st. opinion from a real pro. But in any case, get a biopsy, it's ever so inferior to a real operation.

Best wishes
Jens

[Don]

Maybe now would be a good time to see one of the Experts list on the TCRC web page --Dr Coogan @ Chicago's Rush Presbyterian St. Luke's Medical Center is about 260 miles from St. Louis-- It Would probably be worth the trip!! Just a thought... Good Luck

[ramfan13]

Thanks

I will probably go to Dr. Foster at Indiana if I am not satisfied with what I hear from my urologist. I think my pathology and PET scan need to be reviewed. I am wondering if I should get a follow up PET scan. Does anybody know if you have to wait a certain amount of time to repeat this test. My urologist did not want to do it yet. He is going to wait until after he meets with committee on Wednesday. I am kind of in a hurry to get something going if I need it. If I have Sertoli, my only chance is surgery to remove it and I am not even sure how good my odds are then. Thanks everybody.



John