Ovarian CA with Mets to mesentary

Hi Lilacs, I hope I can help. I was diagnosed with ovarian cancer at age 61, stage IIIc, in 2021. I am also a physician, so I knew most ovarian cancer is not diagnosed early enough to be curable. My first surgery was extremely minimal, so I transferred care to Mayo and had very aggressive surgery with HIPEC (heated intraperitoneal chemotherapy). I’ve been through chemo three times. I’m now on immunotherapy with Elahere, which is given indefinitely.
I don’t recall having a lot of pain after either surgery, but they recommended I take 6 weeks off after the second surgery, and I did.
I didn’t mind losing my hair three times as much as the fatigue. I’ve had profound fatigue since my second time on chemo. They encourage regular exercise, but it’s very hard.
I worked for a year after diagnosis, then got on disability and retired because of the fatigue. Ovarian cancer practically automatically qualifies you for disability. I encourage all people with cancer to consider getting on disability, if they think it’s right for them.
This is an aggressive cancer. I strongly encourage aggressive treatment. Get second or even third opinions if necessary. Keep us posted. Ask us more questions.
Best of luck in your journey!

Hi Lilacs, first of all I wish you the very best as you start on this new chapter of your life. I was diagnosed at 72 in 2024; stage 3b HGSOC. I had a total hysterectomy with debulking and a 2-3 cm resection of the colon. I returned to work part time after 3 weeks but I have a sedentary job (I’m a psychotherapist). I found the pain manageable with a few doses of oxycodone and then Tylenol. I then had 6 infusions of carbo/taxol and was able to work around 20 hours/week, taking 3-4 days off after each infusion.
I had a small recurrence after one year and opted to do a clinical trial which was a CAR-T trial, not a drug trial. Initially it looked really promising (tumors shrunk by 60%) but after 5 months the scan showed 3 new tumors in my abdomen. I’ve now started a course of Doxil/carboplatin infusions. I’m very fatigued and developed a nasty rash so I’m in the process of retiring. Hopefully this round of treatment will give me a decent period of NED.
I apologize if that was more than you wanted to know! I’ll be keeping you in my thoughts…let us know how things go for you!

@lilacswaterbelize. I want to welcome you to our Support Group.

I see that you've already received support including detailed descriptions from @amywells and @lathomasmd on their experiences and treatments for ovarian cancer.

It may be that you cannot completely plan out when or how you will continue to work after surgery and treatment. Your cancer care team may have a social worker who specializes in oncology and can help you with emotional support and making decisions about work. You might ask your doctor about this at your appointment that is coming up.

I have a suggestion. It helps to write your questions ahead of time. With prepared questions you won't forget to ask something. In addition, I've found that writing my worries in the form of questions helps me to get them out there and away from turning them over and over in my mind.

When is your next appointment scheduled? Is there someone who will go to your appointment with you for support?

Hi. I am sorry you are going through this. Someone once said this is a club no one wants to join—how true! I was 68 when I was diagnosed with primary peritoneal cancer stage 3c. It is HGSC, which is treated exactly the same as ovarian—but it spreads via the peritoneum. Some people say up to 15 percent of ovarian cancers are actually PPC. I had tumors on my liver, diaphragm, ovaries, etc—everywhere this nasty stuff could reach. To avoid too much cutting, I was given seven rounds of carboplatin and abraxane (a substitute for those allergic to taxol with the same active ingredients). I had what they described as a moderate response to chemo. I think they were reluctant to do debulking surgery but I knew I had no chance without it, so I was persistent. MD Anderson does not yet do HIPEC for my cancer or HGSC, so I had simple debulking surgery in November 2024. They found less disease than expected and after they scraped out everything they could see I was told I had no visible signs of cancer. I then had “second look” laparoscopic surgery in March 2025, which found microscopic disease after biopsy. Since then, I have been on a clinical trial with Keytruda, Avastin, and low-dose cyclophosphamide. It calls for infusions every three weeks, which is time-consuming because I have to travel to Houston. I have tested negative for microscopic disease (using the Signatera test) since December 2025, with two exceptions. The most recent test came back minimally positive, so we shall see what that means with my next test. I have not found treatment onerous so far, although I did lose my hair during the carbo/abraxane phase. However, I am retired, which obviously helped. I ate well, exercised and never missed a treatment. I was careful around others, but continued to care for my husband and shop for groceries, etc. I was vigilant with icing, so I did not get neuropathy. There are lots of posts online about what to do during chemo, which you might find helpful. Sugar made me nauseated, but that’s me. Surgery was not great, but it was not horrible either. I was on my feet the next day and walking the block within the week. I used minimal pain medication and did fine. You have restrictions on lifting, but I recovered fairly quickly. My doctor stressed nutrition, nutrition, and nutrition, so that’s what I focused on. I am hopeful that you have some of the genetic mutations that make treatment more successful. I do not have the BRAC gene, have a low FRA positive score, am HER negative, and etc, but new treatments come online every day. I will keep trying to beat this back for a while. Can you work? It may depend how much support you have and how you personally do. Some days I feel like managing my health is a full-time job, but I have other issues which make my life more difficult. Do ask for a port—it makes life (and treatment) much easier. You can always get it removed if you are one of the lucky ones. Be brave, find the best doctor and facility you can, and continue to live your life. There truly is more to come. Hugs!

i was diagnosed 3c ovarian at 57 in early 2024, local docs offered me comfort care, i went to UVA which is one of the top cancer centers within a 8 hour drive of me (its 4) and i had chemo and surgery that year...by Oct was cancer free.. then jan of this year it had shown back up so just finished 6 more rounds of chemo.. the fatigue is hands down the worse part for me...now 24 was a ROUGH year as anyone can tell from the posts I made back then, i had 2 skin cancers removed and reconstruction surgeries done, in addition to the big surgery where they removed half my insides i think lol...and the gall bladder surgery 2 weeks later.. as well as supporting and taking care of my best friend who was going through pancreatic cancer... but there ain't no way i'd have been able to work...nope no way no how.. but if you can thats great...i did the carbo/taxol first go around... this go around because the cancer wasn't spread as far before i caught it, we opted for carbo/doxil but the fatigue was every bit as bad... i personally also recommend finding a REALLY good trained acupuncturist... mine was a gold mine and still is with dealing with a lot of the side effects including nausea...(didn't help much with fatigue unfortunately) and like one of the others said i did a lot of nutrition... for example i learned in my case shellfish countered the metallic taste in my mouth from chemo...so i ate mostly things like scallops, oysters, clams etc...and i ate a lot of mushrooms...i struggle with blood building back so had to have multiple transfusions during both series of chemo...but nutritionist told me to eat lots of red meat and organ meats like liver lol...anyways if you have questions, just ask...these folks were a great support to me going through all this...oh and like others have said GET A PORT....save your veins...can't stress that enough... i promise it will make all the difference in the world...