Treatment advice for mixed clear cell and endometrioid ovarian cancer

Posted by hk4 @hk4, Aug 3 3:50pm

I have had at least two ovarian cysts since September of 2018, which at the time were considered benign endometriomas. The largest cyst was aspirated in December of 2021 but a pathology was never performed on the fluid that was drained. This past April, I started experiencing a series of four painful ruptures of the largest cyst, which rapidly grew back between ruptures. I had surgery this July to remove both cysts, which were leaking fluid and stuck to surrounding tissue, along with a full hysterectomy and ovaries/tubes removed. The final pathological findings, which were initially inconclusive and sent to Mayo Clinic for expert consultation, revealed a rare mixed clear cell (50%) and endometrioid (50%) ovarian cancer (FIGO 2B). Since very little is known about this mix and standard chemotherapy has been shown to be mostly ineffective for this type of cancer, we are unsure where to go for an effective treatment plan. Any advice on how to proceed with finding a treatment plan would be greatly appreciated. We live about 1.5 hours north of Los Angeles and 6 hours south of San Francisco. Thank you!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Helen, Volunteer Mentor | @naturegirl5 | Aug 3 4:06pm

@hk4 The experiences you've had and with pain sadden me. I'd like to offer my hand through virtual space to take yours in mine and share that you have come to the right place for compassion and advice. We, at Mayo Clinic Connect and in this Support Group can relate to your desire to find the treatment plan that is the best for you and will provide you with a good outcome.

I'd like to suggest looking over the website I have indicated below that provides information on the National Cancer Institute Designated Centers of Excellence. Given the Mayo pathology results if it were me or you were my relative I would urge you to go to a treatment center that is affiliated with a large Comprehensive Cancer Center at a University. You will notice that are several in California. My brother received treatment at Stanford. A friend of ours continues to receive his treatment at UC San Francisco.

NCI-Designated Cancer Centers

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

If you would like to request an appointment (or ask your doctor to make the referral) at Mayo Clinic here is the weblink you can use. Since the cancer you described was a difficult diagnosis to make that Mayo Clinic pathologists made you may decide you'd like to travel to Rochester, Minnesota for your treatment.

Request an appointment at Mayo Clinic:

-- http://mayocl.in/1mtmR63

Is this information helpful to you?

gisellef | @gisellef | Aug 4 7:39am

Good morning:
Given where you live, two clinics come to mind. City of Hope in the LA area has an excellent reputation. I know of two people who received state of the art care, and are in remission years later, at CofH. The second clinic you could look into is in or near LaJolla. It is affiliated with MDAnderson in Houston and is called Scripps Health.
You have given yourself the best chance for recovery by going to the best! All the best!

hk4 | @hk4 | Aug 8 2:22pm

Thank you for your suggestions! I'll check them out.

hk4 | @hk4 | Aug 8 2:30pm

In reply to @naturegirl5 "@hk4 The experiences you've had and with pain sadden me. I'd like to offer my hand..." + (show)

Thank you so much for taking the time to respond and for the links. I've looked over the list of designated cancer centers, but it's difficult to know which hospitals might be actively treating my rare cancer. My insurance only provides for a single second opinion, so before paying out of pocket, I'd like to try to ensure that there is at least someone at the hospital that would be a good fit. Any suggestions as to how to find this information out without having to do an official second opinion. Since it is so rare, it doesn't seem to attract clinical trials so locating doctors/hospitals that way doesn't seem promising. Thanks!

Helen, Volunteer Mentor | @naturegirl5 | Aug 8 4:00pm

In reply to @hk4 "Thank you so much for taking the time to respond and for the links. I've looked..." + (show)

@hk4 I have a few ideas:
1. Do you have a local oncologist who can do the search for you? Your oncologist could also search for clinical trials for you too.
2. Your biopsy was sent to Mayo Clinic for diagnosis. Would your oncologist contact Mayo Clinic Gyn/Oncology and ask for ideas?
3. You could search the faculty and providers at each of the centers you are considering and see if anyone lists your diagnosis as a speciality. You have more a few options within less than a day driving distance from where you are. This may take some time but you might discover a faculty member/provider with a gyn/oncology speciality who can contact directly and ask your question. You may to call as many websites do not list specific contact information for the providers on their website.

If I think of anything else I will post here.

Please sign in or register to post a reply.