Any reassurance/hope please

[Autumn222]

Hi,

This is my first time posting. I’m 34 and at the beginning of July I was diagnosed with 3C clear cell. There was a large mass at my ovary and a couple of deposits in lymph nodes in the fat layer. I also had blood clots on my lungs. I was told it was being treated as curative and that this type responds well to treatment. The plan was three rounds of chemotherapy then surgery, then three more chemotherapy.

I had three rounds of three weekly paclotaxyl and carboplatin (excuse the spelling) then a CT scan. On Wednesday this week I was given the results that the cancer had got worse. The mass was bigger and there were more deposits in a couple of lymph nodes. They are unable to operate because ‘it won’t get all of it’. I didn’t ask what stage i am now. The scan did show that i no longer have clots so i am now able to be put on avastin. The new plan is weekly paclotaxyl, fortnightly avastin and three weekly carboplatin.

I was told that they are no longer treating it as curative and that if this new treatment works it will keep things at bay until it doesn’t work anymore or i can’t tolerate anymore. I asked what the absolute best case scenario would be and was told that the new treatment shrinks it enough for surgery and the deposits disappear, but she thinks the chances of this are unlikely.

I am absolutely devastated and petrified at this prospect. My family are trying to be positive and focus on the fact that this treatment could shrink it but i can’t shake that my consultant is not hopeful for this and i am facing death but no one knows when. I thought i was going to go back to work and have my life back but now i am struggling that this won’t be the case and i’m going to be leaving the ones i love.

The anxiety i am feeling is overwhelming and I was hoping there may be somebody out there who has experienced similar who could give me some hope please.

Thank you for reading all of this x

[Doggies221]

I’m so sorry you are going through this. Some clear cell, depending on specific mutations/ molecular profile, maybe more or less responsive to carboplatin. Ask your consultant to test the tumor (by taking a biopsy) for specific mutations (next generation sequencing and immunohistochemistry) to find the specific features of this tumor. From there, the consultant should have a better idea how responsive to platinum this cancer may be (e.g., if it’s HRD positive or negative, etc.). Once specific mutations are known, maybe consultant can enroll you in trial testing specific targeted drugs for your mutations. Clinical trials seem to be very important in rare ovarian cancer. Just ideas here, but OC organizations really encourage molecular testing of tumors asap, earlier in treatment, not later. Wishing you best of luck in finding a treatment that works!💕 PS. Did this tumor arise from endometriosis?

[DianaPrince_]

If you're in the UK you are entitled to a second opinion and/or to move your treatment to a different hospital.

After being diagnosed I got a second opinion at a specialist gynae cancer centre the Royal Marsden, and my treatment and prognosis massively shifted.

Ovarian cancer is nuanced.

Clear cell is rarer and needs a specialist expert.

This is your first line treatment and there are still an array of treatment options in front of you that could help.

As for curative, it's term none of us hear very often when it comes to ovarian. However, it doesn't mean it's over. It could actually mean controllable or stable. In many cases Ovarian cancer can be treated like a chronic disease.

There are so many women on this site that have been down this path, and now live with Ovarian cancer as a long term condition or have even beat the predictions when they we first diagnosed.

Find your expert.

There is hope.