sertoli-leydig ovarian cancer. Anyone heard of it?

[nelliepud]

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?

[ChrisP2236]

Please insist that your sister insist on seeing a gyn/onc asap - if the original surgery was performed by a gyn/onc it sounds like she needs a new one.  You can do a google search for sertoli-leydig and find out more information.  I've heard of it in researching my own form (graulosa cell) but don't know much about it.  Best wishes to you and your sister.  Chris

[Brownie3321]

Hello there. I was staged 3c this past July because the cancer had spread to my stomach lining, bowel, and lymph nodes. I plan on being here for a long time, and my onc does not see this as a death sentence at all. Good luck to your sister, and try and stay positive. With love, Deandra

[Jan214]

They should have done a full hysterectomy at the last surgery and it does sound like a malpractice case to me.  I would not let that Dr near your sister again.
They really can't stage until the samples get to the lab.  Does your sister have a GynOnc doing the surgery?
Having it spread to the lymph node is not a death sentence.  Mine had spread like that and I plan on being around for a long time.  I was diagnosed 3c last year and i am still here.
Waiting a month is outrageous in this situation and I would push to have it done sooner.  Definitely get another doc and make sure he is a good gynonc.
Good Luck to your family
Jan

[diamond333]

by diamond333, 2 minutes ago
Hi , Im sorry to hear of your sisters experience ,  I have lost a lot of faith in the NHS also and am presently fighting the system for negligence . I was fobbed off many times going back and forth for nearly 2 years with symptoms and scan reports that indicated suspicious cysts . May I ask where you are from ? Im from west sussex and attend the st lukes cancer centre in guildford but I have complete faith in the doctors there it was the hospital that I attended for 2 years previously that were negligent . It is true that complete staging can,t be done til after the surgery as the staging is done  in the path lab where they grade the cancer also .  I would ask if they can move the surgery forward , I think they owe it to your sister to get their backsides into gear !!. Im sorry but it makes me so mad when doctors think they know your body more than you and they call agonising pain that keeps you awake at night discomfort !!.  I  have heard of this cell type before but don,t know alot about it . If  you google it be careful not to apply too much to your sisters case as we are all different and you will only get the correct picture from the oncologist . Hoping you get some answers soon , thinking of you and your sister  love angie

[AliceZan]

I never heard about this type of cancer before but I am so sorry to hear it and it sounds like a good case of malpractice. How do the doctors explain all this? Why could not they perform hystorectomy right away? If the spread is in lymph nodes probably the stage is 3 and when they do the surgery they can determine if other organs are affected.