Diagnosed with ascites in the perineal indicating breast cancer mets

@brendaae & @vissdoc : sorry to only now be jumping into this Ascites conversation as this was my story in 2021. I have posted elsewhere on Mayo. So in 2019, double mastectomy - lobular on right side, & lobular & ductal on left side. Set up to do Chemo but also had Lyme disease, and in treating an issue for that discovered cancer had spread to skin. So stage 4. No pain anywhere. Despite port placement, didn’t start chemo but pivoted to Verzenio & Arimidex. Worked great until it didn’t.

Eighteen mos later was super healthy, segment hiking AT & belly start filling up. Slowed me down, upper abdomen nerves & muscles increasing become painful. Doing every 2 weeks, 3 three paracentesis later - the last drained a little over 11 lbs out of my belly, docs immediately pivoted to chemo as was deemed to dangerous. The docs were doing my CA 27-29 blood test which went up from single digits to high 50’s. They were also testing my fluid which was positive for cancer. BUT we also tested my CA 125 which only once back in 2019 was randomly tested - went from single digit to mid 700’s. So docs put me on Taxol & Avastin infusions, & Fasoldex injections. (& premeds). Worked like a charm for ascites. Within one week, lost another 20 pounds or so. We were all shocked. No more pain meds and I became myself again. Did 20 weekly treatments.

I get my primary treatment from Moffitt, but I do 5 summer months of support from Yale Smilow. I have also had additional opinions from Sloane Kettering & MD Anderson. Standard of Care (SOC) for breast cancers would be to not use Avastin as was reversed by FDA as breast cancer drug for having little effect, but remained effective for other cancers. Every institution but Moffitt said they would not have used it but couldn’t disagree with the results. Fast forward to early 2024 and successful brain tumor removal confirmed that I actually also have Ovarian cancer. The 2021 treatment had worked on both cancers but couldn’t cross the blood brain barrier to get the little seed that had shot up there. No treatment needed until Dec 2025 when I started chemo again with the same previous drugs but also added in Carboplatin. My ovarian decided to rear its ugly head but we had been watching my numbers. Just done with weekly in early May, and all my cancer numbers look great.

Straight up, from my very lucky self who seems to live with my 2 stage 4 cancers, having ascites is serious. There are many reasons why someone might have it. Not all are cancer related ie liver. In my case the fluid tested positive for cancer - without a tumor or tissue specimen, there was no way for pathologists back in 2021 to know specifically what kind. My docs had previous experience with Avastin working well with Ascites. I am sure there are other drugs and methodologies. So much has changed over my 7 yr journey in identification, assessment and treatment for the better. But be like a dog with a bone as they say. What is causing it? What can be done? Good luck - just reaching out is a great step & we all have a great support team on Mayo Connect.

Thank you so much for your response. I am due to go to MD Anderson June 18 for screening for this new study. My home onc is MSK. I don't want any thing to keep me from the study so I am hoping I can manage until then. I notice the abdominal distention and it feels full but I'm hoping I can keep it under control for a few more weeks. My recent CT scan in early May and my CEA and alfa fetal protein are low, less than before. I'm hoping MD Anderson will decide whatever they do will not keep me from the study. I was getting surveillance every 3 months a Mayo which is an amazing institution. They have "released" me as it appears I will be followed at MD Anderson. Hopw the ascites stays managable until then. You give me lots of hope. Thank you

@keepmoving2 y
What a remarkable survival story. Your tone of voice in your writings sounds good. Care to share any tips on how you deal with all this emotionally?

How much fluid do they drain every 2 weeks?
Thank you for your prompt response. I am due to return to MD Anderson on June 16 for screening for a study I may be eligible for. I hope I can hold out til then. Thus far it's uncomfortable but no bad signs of fever, chills, pain or shortness of breath.
I am off all meds bc I am hoping to enlist in the study.
Fingers crossed until June 16.
All my best to you and thanks!

I am currently waiting at hospital to get drained. I get 4 to 5 liters drained every two weeks. I am petite and it’s a lot of added weight (11 pounds)!
I wish you success at MD Anderson.
I am going for a second opinion at Mayo.