Sertoli-leydig tumor

My sister consulted a GP 18 months ago and was told she had IBS and was sent off with colfac. She then went back 3 months ago as the symptoms had worsened and was told she was 6 months pregnant and even told to listen to the foetal heart! Anyway it turns out that she infact has ovarian cancer. A rare form of it called sertoli-leydig cancer. The surgeon told her that it was probably benign (it wasnt) and that he had gotten it all (he hadnt). The deal was if they detected cancer at the tumor removal they would do a full hysterectomy (she is 32). It was cancer and they left everything in. Now we are told they removed a lymph node at the original surgery and it was cancerous so they have to go back in in a month remove everything and then chemo.My questions are has anyone heard of this cancer. My sisters is unusual in that the tumor was outside the ovary. It hadnt escaped it was just there im not sure if it was encapsulated or not. Also she has been told they cant stage the cancer until they have done the hysterectomy is this true? The fact that it has spread to the lymph node...does this mean she will most likely die? Will waiting a month for the next lot of surgery hurt her survival? Why would they not perform a hysterectomy in the first place when they knew it was cancer? Finally can anyone tell me if any regimes of chemo have worked for this form of cancer?

[Annekathryn Goodman, M.D.]

Hi There,
Sertoli-leydig cell tumors account for only 0.2 % of all ovarian tumors. the average age of diagnosis is 25 years. Most tumors are slow growing and 97% present at stage I. This tumors can produce male hormone and 50 % of women will have irregular periods. most of these tumors are quite big. It is usually reasonable to only take out the one ovary.

In the case of your sister, it is reasonable that only the ovary was removed at the first surgery. Your sister has a Stage 3 cancer because she has spread to a lymph node. it is not clear whether removing the uterus and other ovary is useful. Usually chemotherapy is given when there is spread to the lymph nodes.

She may be cured with chemotherapy. it is very important that your sister seek a consultation with a gynecologic oncologist for this issue
take care