Any others w/Sertoli Ledig dx?

I'm looking to start a discussion with others diagnosed with rare ovarian Sertoli Ledig tumors. I was originally given a dx in early Dec. 2011 of a benign granulosa cell tumor. Unbeknownst to me, my pathology slides were subsequently forwarded to Johns Hopkins for expert review, and the dx has now changed to a poorly differentiated Sertoli Leydig cell tumor. There is so little information available about Sertoli Leydig, and much of the info is inconsistent. Even the doctor I'm seeing at Memorial Sloan-Kettering wants to discuss my "case" with a group of colleagues due to the extreme rarity of this type of cancer. It's scary when the experts know little more than you do about a medical condition! I'm in the early stages of figuring out treatment options. Would love to share info, experiences and support with others diagnosed with Sertoli Leydig. Please get in touch.

I too have this same tumor, I too was diagnosed in early Dec. 2011.  I had the tumor removed on December 22nd but I still haven't gotten my pathology report back.  I think its because we live in a pretty rural area and they had to send it off and even where they sent it isn't that large of a hospital.  I have tried and tried to do research on it but an unsuccessful.  I would love to hear how things end up with you and what they decide your treatment should be.  We have considered traveling to a bigger area but haven't completely made the decision.

Thx for your reply, ksargent. It took over a month for me to get my final pathology report, too. This type of tumor is so rare, my local hospital sent it to Johns Hopkins for final evaluation. I had no apparent outward symptoms of Sertoli-Leydig prior to having my tumor removed via salpingo oophorectomy of my right ovary, and both my CA 125 and Ova-1 tests were negative. These tests, I'm told, are practically meaningless in my case. My original onc gyn surgeon has recommended removing my uterus, remaining ovary and Fallopian tube, and omentum, then biopsying my lymph nodes to see if I require chemo. I decided to go to Memorial Sloan Kettering for a second opinion since they have greater expertise with rare cancers. The onc gyn I met with at MSKCC has extensive experience both as a surgeon and as genetic scientist, but he's never come across a poorly differentiated Sertoli-Leydig tumor -- only "a couple of well-differentiated ones." He ordered a chest-abdominal-pelvic catscan on Friday as an initial step to reassess my condition. I'm worried they'll find something new, but hopefully that won't be the case. My tumor was intact when it was removed and the cytology report on abdominal fluid was negative for malignant cells, but this kind of tumor seems unpredictable at best. Best wishes to you. I will keep you posted as I find out anything more, and hope you will do the same. You'll be in my thoughts.

The only thing they have told me so far is that they do 5 stains total, the first stain came back as they expected but the following 4 did not, they forwarded the slides to a special pathologist in a local city.  He also told me that the washings they did during surgery also came back with something in them but he wouldn't get into that with me yet either.  He said that he removed the tumor in the ovary intact so hopefully that is a good sign.  After this last surgery where they removed both ovaries and tubes I have nothing left that way for them to go in to remove because I had my uterus and cervix removed 10 years ago.  They attempted to do this surgery laprascropically but was unable to because of the severe amount of scar tissue that I had from the first surgery. As far as I know in the tons of blood tests that they did before surgery they never did a CA 125 or Ova-1 but I could not tell you for sure but it sounds like it doesn't matter with these tumors.  I had been going to many different doctors for almost 7 years trying to find out what was causing some ongoing symptoms finally one of them tested my testosterone level and it came back at 396. Its hard for me to believe now that it took one simple blood test to lead them in the right direction but it took doctors in 3 different states over 7 years to run that test!  Considering now I know that I had all the symptoms of this tumor it actually makes me really angry!  After that is when everything started moving very quickly, they sent me to a hormone specialist then to a gyn surgeon and I was in surgery about 10 days later.  Considering how rare it is and because we live in such a rural area I would really be interested in what you think of MSKCC and your specific doctor since he has some knowledge of what he is doing. I am considering finding someone else for another opinion and so far you are the only person I have heard of that knows a doctor with any knowledge of this and I am not against traveling!  I appreciate your time and its comforting finding someone else who is dealing with the same things I am.  I REALLY hope that they don't find anything when they do your next scan, good luck and you too are in my thoughts!

So sorry you have to deal with such an agonizing wait, ksargent. If your doctors continue to be puzzled by the results, perhaps they could consult elsewhere.... My slides were sent to Dr. Robert J. Kurman at Johns Hopkins Reference Laboratories' Surgical Pathology Consult Service in Baltimore, MD. He is highly respected in the field as an ovarian cancer expert, and both of my doctors think the world of him. My path report from Johns Hopkins states: "Some stains/tests used in arriving at the diagnosis were performed here using reagents that have not been cleared or approved by the US FDA. These were developed and their performance determined by the Johns Hopkins Medical Laboratories. Their use does not require FDA approval." Johns Hopkins is tops both for gyn and for cancer. If I didn't have MSKCC right in my area, I'd go there. I am hoping you will have good news soon. The fact that your tumor didn't rupture or spill is promising. I received my catscan results today -- "no evidence of metastatic disease." I know that doesn't guarantee anything (my surgeon explained to me how much cancer can be hiding inbetween intermittent CT slices before it shows up on film), but it's still encouraging. I'll take any good news I can get at this point! My doc at MSKCC still wants to take my "case" to the Tumor Board Council (what a name!) on Thursday for further discussion. I will let you know if I learn anything that might be helpful to you. Keeping you in my thoughts.

Btw, CA125 is a blood test that is typically given to check for ovarian cancer. You'll see CA 125 numbers bandied about on this site as an indication of how much better (or worse) someone has gotten after treatment or chemo. I'd be very surprised if you weren't tested. Ova-1 is a relatively new test that was only recently approved by the FDA; it uses CA 125 and several other markers to test for ovarian cancer as well. The problem is that both tests have false positives and false negatives. They're useful for some people and to determine baselines, but often unreliable. My gyn oncologist said he was asked to be a spokesman for Ova-1 and he couldn't in good conscience do it.

Good to know!  In a weeks time they did so many blood tests and I tried to keep track of everything but I know I missed some, they took off some 30 vials in a matter of 3 days.  At times I almost feel like my Dr. is purposely keeping me in the dark about things...guess I need to be a little more pushy!

Also, thanks for the name of the pathologist that yours was sent to, I believe that I will be making a call tomorrow and requesting that they send it there for a consult!  I want true and accurate answers not just a guess because they have never seen it.

Hi k - any word yet on your dx? Hope you're doing ok. Sloan Kettering's Tumor Board got back to me w/their recommendations yesterday -- the consensus is that I need complete surgical staging *and* chemo due to the aggressive and unknown/unpredictable nature + high grade of my tumor. Bah. I let myself get too excited about the clear CATscan. Unfortunately, MSKCC knows as little about Sertoli-Leydig as anyone else. They aren't even 100% sure if my tumor was Sertoli-Leydig, but consider it the best guess... Since they can't really offer any add'l insight into this particular disease, I'm probably going to go back to my original gyn oncologist. He has more surgical experience than the doc I saw at MSKCC, used to teach at Johns Hopkins and has run several gyn oncology depts. No point in adding exhausting travel complications to treatment. Let me know how things are going for you when you get a chance.

I still haven't heard anything unfortunately.  I really hope that your surgery goes well, do you know when you will have to have it done yet?  I would agree with you, if traveling is not going to add benefits to your progression then there is no point in it, stay where you are close to home and you don't have the added expense and stress.  The DR I have here is a very experienced surgeon but like most others he had never seen one until now, I don't think the pathologist it was first sent to had either thats why the sent it away but that doesn't seem to be doing us much good.  I really hope that your surgery is successful and that you are able to do chemo without to much illness added.  Definately keep me updated on how you are doing!  Thanks for all your time here!