Ovarian sex cord stromal tumor

[Winikor]

I have been diagnosed with lutenized sex cord stromal malignant tumor..  i had the 1st one removed along with a Hysterectomy 11 years ago.  The pathology report came back as a Spindle Cell fibrothecoma. I was told this would not come back and no further tests needed.  5 years later, I went to the ER with abdominal pain.  A CT scan showed a tumor in my pelvis.  Had it removed in 2017, it was the size of a grapefruit, and it was peeled off my colon, which ripped and was sewn up during surgery.  Again was told it was a fibrothecoma, it would never come back and no further testing needed.  Wound up in the ER again with abdominal pain and after a CT scan another tumor was found.  Went to Cleveland clinic in FL and the oncologists I saw (gyn and gastro) said they would not operate bc it would be too risky.  I went home and went on with my life not knowing what to do until I ran into a friend doctor who referred me to a gyn/onc colleague who had a suspicion that it was not a fibrothecoma.  He sent the slides to John Hopkins and it came back as a lutenized sex cord stromal malignant tumor.  Had CT scans, was put on Hormone blocker and oncologist kept watching it. 3rd CT scan showed that it had grown and now there were 2 tumors instead of one.  I insisted on having these taken out.  During the preop tests, a chest xray showed nodules on my lung.  Dec of 2021 I had double laparascopic robotic. Surgeries one after the other.  Part of my lung was removed with the tumors along with some lymph nodes.  Lymph nodes were clear but the lung nodules were a metastasis of the pelvic sex cord stromal tumors.  I am told this is such a rare tumor that most oncologists do not know how to treat it.  I had a telehealth appointment with a Sloan-Kettering oncologist who told me he has only seen a handful of patients with this cancer, that it does not respond to chemo (which I'm glad), that it's slow growing and to have CT scans every 3 months for now and exemestane Hormone blocker.  I have read that the life expectancy of this cancer is 5 to 10 years.  I've had it now for 11 years.  At this time it seems like I'm tumor free but I know it will come back.  If anyone has any new information as to how to treat this, please advise.  I'm 73 years old.  My mom died at 97 from Omentum cancer which was not diagnosed until 2 months before she passed.  Thank you to those who took the time to read this.