Recurrence….any advice

Please go to a cancer specialty clinic like MD Anderson or other like that (Mayo etc) and get a second opinion. Surprised that radiation was not discussed if chemo did not work.
Best of luck.

I have already requested a referral to Mayo as that is about a 7 he drive from my home.

Excellent! Wishing you the very best.

A second opinion would be good glad it's a 7-hour drive from your home that you don't have to fly there as both MD Anderson & Mayo want to do their own testing. I think Sex Cord Stromal is a rare type of OC. I think your Onc should have done a mid-way Pet scan and post scan for frontline when you initially had your chemo but that's water under the bridge. I think surgery is the recommended treatment for this type.

Just wanting to wish you the very best, @ljwallac79. When I look for more information about sex cord stromal oc, I see that it is a rare (< 5%) form of ovarian cancers, and that there are still several subtypes within that category. I wonder if you have further detail about the particular subtype and whether there are any Gyn-Onc specialists or centers that see this most often, so would have experience and wisdom for guiding you and whichever team you work with going forward. That may be Mayo, or they may also bring in expertise from elsewhere, if needed.

I can only begin to imagine how challenging it is, both practically, and on an emotional level, to take in how little may be known and how, within that, there can be such divergent approaches.

I, too, am so very glad to know that you are turning toward greater resources and expertise. I have felt so surrounded with both kindness and expertise while at Mayo. The first surgeon I met with after my comparatively common and simple diagnosis told me, when I later told her that I was choosing to go to Mayo for my surgery, that there was no way they could have put together the kind of team and could have offered the specificity of treatment at my regional medical/cancer center. Her reassurance was borne out in my experience at Mayo in 2-23.

I am sending my very best wishes for you to receive the level of care and the clarity of explanations for all your good questions that you need and deserve right now. I hope to hear how that goes for you.

And, there are many resources for helping you find places to stay, etc, that will meet your particular needs, so feel free to ask any of those kinds of questions, as well.

I have been diagnosed with peritoneal carsanomatosis in the fall of 22. I had 8 chemo sessions and 14 hour surgery with Hipec . I did well with chemo and did not have many side effects until about a month after. Then I was stuck with extreme CIPN. I have been going to an Asian clinic for acupressure,acupuncture,and PT. The acupressure has taken the swelling from my legs and greatly helped the foot drop. Now, last visit at Mayo shows cancer has returned. They are watching it and check again in 5 months. My question is has anyone else been diagnosed with this type of cancer and how are you doing? Also do they do radiation on lymph nodes after so much chemo has been done. Any advice will be appreciated

@pat2628 I can only imagine how rough this has been for you. I'm happy to know that the acupressure and acupuncture, and PT have all helped to reduce the peripheral neuropathy. It's good to that you are under active surveillance and so the recurrence was discovered in its early stages.

I'm going to tag @val64 She was diagnosed with peritoneal cancer and has come to our Support Group to provide us with updates. She has a background in science. I think she may be able to provide you with recommendations and advice.

Thank you so much!

Unfortunately my diagnosis was sex cord stromal, not otherwise specified....I guess they couldn't figure out which type it was. of course my luck would be that not only do I get cancer but I get a rare type. Trying to remain optimistic as I have 4 children, 1 in college and the other 3 still at home that are going to need me around for many years to come.

My situation is somewhat different, but I have some thoughts. Peritoneal carcinomatosis can develop from several different types of primary cancer, and the treatment depends on the primary cancer type. Mine is endometrial. Based on the fact that you had HIPEC, I'm guessing that yours is ovarian or primary peritoneal?

Are you currently on maintenance treatment of some sort? Is there a reason to expect your cancer to be slow growing? Have you declined further chemo? I ask because a doctor saying "Your cancer is back. See me in 5 months" seems strange, unless there's more to it. I went back on chemo as soon as it could be arranged (2 weeks).

To my knowledge, they use palliative radiation in these situations to shrink tumors that are causing symptoms because they're pressing against other organs. Otherwise I wouldn't expect them to use radiation.

When my cancer progresses, I'm planning to try to get into a clinical trial. If that might interest you, it might be worth mentioning it to your doctor ahead of time.

Best of luck.