Ah man, I am right behind you sister! I just had left ovary/tube and pelvic washing cytology done in 4/2022 and left it at that (followed by gold-standard permanent paraffin section and genomic/molecular testing thru Caris). She wanted go back in and do a complete staging and radical hysterectomy for good measure, but I couldn't justify it as washings were negative (so didn't see point in going back to remove omentum), research shows lymph nodes only involved in 0-2% of cases (but 30%+ chance of various complications) and they are starting to trend away from lymph nodes for majority of cases anyway (so didn't see point in going back for lymph nodes for my stage/grade), and I don't care if I'm past childbearing I'm not getting radical hysterectomy surgery done for Stage I, Grade 1-2 with apparent confinement to ovary (So many lifelong complications from all that!). If I were pre-menopausal, my case would qualify for fertility-sparring, so I'll just call it endocrine-sparring in my case! It sounds like you are in good hands where you are at; they are getting creative. Its dawning on me I could be in your shoes by year 5, one never knows! So many holes/differentiation in care for MOC depending on where you live. Everytime I get heartburn or GERD symptoms it shakes me a bit second guessing things (especially since she didn't order an upper scope when she ordered the colonoscopy to check for GI primaries, like others apparently do).

I thought this was an interesting update on surgery/chemotherapy options, published around Oct 2022: https://ijgc.bmj.com/content/32/11/1455
You might need a cup of coffee while you read :)

I also like the idea of Cytalux if I ever have recurrence and/or need additional debulking (finding who offers it is another matter): https://cytalux.com/

So many new technologies coming thru the pipes every day (ie, LOCOcyte (TM) microbead tech https://avengebio.com/#technology ). We just have to hang in there long enough to benefit from one of them. So hang in there!

Wow!! You are a waterfall of information! Thank you for that. I’m super super lucky that so far every attempt has yielded positive results. You are on top of it! So impressive! Good luck to you! I hope you are like most MOC patients and it’s just a rando run in and you get to go merrily along your way!!!

Hello there mucinous sister! I had my first run in and surgery in 2018. We saved my uterus and other ovary, just took the appendix and some lymph nodes for testing. We just did surgery and monitoring like you said you are doing. I was almost to the 5 year clear mark when something showed up on a CT I had for a completely unrelated issue. I was having digestive trouble for months and once I was on track to get a PET and more testing that part cleared up... Funny how my body broke in one way to find the actual broken part...

Once this shit showed up in my lungs I called in the big guns at Sloan Kettering in NYC. I feel pretty confident in my team, luckily. I did chemo last summer. It was effective which is a tiny miracle and just had thoracic surgery a few weeks ago. Another successful approach. I still have a few tumors left in my lungs but I am talking to the department that could ablate most if not all of them soon.

I'm super lucky because I was told they don't often do surgery or ablation on metastatic cancer. I love that my team is willing to do whatever it takes. I think mine became metastatic because I had a part of it burst in me weeks before the removal. I just thought I had pulled a muscle, so that stuff was just floating all around. I'm lucky it's only in my lungs!

We went from my doctor saying "I don't think you're going to die THIS year" to potentially being cancer free for a bit! Frickin crazy! They still have me on a couple of waiting lists for clinical trials and the maintenance drug Avastin was mostly successful in slowing/stopping the growth of most of my tumors.

I know metastatic mucinous oc is pretty rare. I wanted to shout into the void and see if anyone would answer.

Hi Liz, we are rare birds in this fight, you are rarer still. Because of that, it is going to be very important to keep up on your own research and make sure your are working with knowledgeable providers. I can tell you, I am more up to date on this particular cancer type than my own oncology gynecologist, who is the best in my area, and that has helped me make better decisions for myself. Was your cancer determined to be primary (originating from ovary/tube), or secondary (originating from gastrointestinal tract or other site)? Have you had genomic/molecular testing done yet on the tumor samples from your debulking surgery? Is your oncologist keeping you advised of clinical trials? Chemotherapy can be tricky with this type of cancer for sure.