Coping with ovarian & peritoneal cancer

@leighklock
It's a journey for sure and, if I've learned one thing is you can't rush this.
Treatments take time. And you are correct about learning from each other.
I reached out to Mayo Clinic before when my husband was diagnosed with Prostate cancer
And I find talking to others who are experiencing some of the same issues really helps.

@lathomasmd Yes, of course. Once my surgery was done and all chemo was completed, I had no visible signs of disease (for the naked eye and on scans). At that point, I think most people take a watch and wait approach, doing periodic scans and checking their CA 125 levels every so often (and now Signatera levels as well) to see if the cancer has come back. Those who qualify take drugs like Lynparza. However, I did not qualify for Lynparza or any other therapies. So, I opted to take part in a clinical trial at MD Anderson that called for a “Second Look” surgery four months after my main surgery, during which they “washed” my abdomen for microscopic cancer cells (I’m not sure Signatera was available in March 2025). When those tests came back positive, I chose to begin immunotherapy (Keytruda and Avastin), along with low dose chemotherapy (50 mg of cyclophosphamide) in an attempt to get rid of the microscopic disease. As I understand it, the clinical trial I am on is trying to ascertain whether I am using up a line of therapy before I have to or whether treating the microscopic disease early will produce a clinical benefit, as well as result in longer overall survival. I have a cycle every three weeks, and about two months ago I tested negative for microscopic disease for the very first time! We don’t know really what it means, as Signatera is so new, but I am hoping that my treatment will produce a lasting benefit. As for Mayo Jacksonville versus MD Anderson, each facility has its own clinical trials and protocols. Mayo Jacksonville, for example, believed strongly in HIPEC surgery at the time I had my surgery done, but MD Anderson was not doing that as standard practice, as I was told they were not sure of the overall benefit and there could be significant complications. I opted not to try for HIPEC but many have had good results with it. (If my disease comes back, I would inquire about the PIPAC surgery at Mayo Jacksonville). Both are great places, but MD Anderson appeared to me to have many more doctors, a bigger operation, and many more clinical trials than Mayo Jacksonville. Mayo Rochester may be a different story. Anyway, hope this helps!

I started chemo after my diagnosis in March. I had 6 treatments then 2 weeks later had a hysterectomy on Aug 20th. Several issues had resolved themselves before surgery like the mass and a couple lymph nodes. They all shrank so surgical field was smaller so to speak. I started chemo again on Oct 4th and just had my 6th one of this cycle on Monday, Jan 5th, 12th total and I'm going to need more. With your high grade aggressive diagnosis it's serious. Do you know what stage you are? I've just finished reading about foods and supplements to do without and those it's ok to take. Some interfere with the chemo and some benefit it more. I wish you the very best with your journey. ❤️🙏🏻

@ford1929 How is your husband doing? The cancer journey isn't new to the two of you, as you wrote. It's great that he is by your side for all of your appointments as I thinking you were with him. I'm so relieved that neither of you have been down this road by yourselves.

@carol1024
I do not know what stage I am. See my gynecologist/oncologist Thursday
I'm not as concerned about the staging as I am about understanding this whole diagnosis
This is the first time seeing my Dr since the results all came back. He is aggressive as he put me on the schedule for chemo before my biopsies were in. CT scans showed enough.
I keep up with results on my portal. And through the nurses, which are amazing.
So will know more tomorrow, not sure I want to know it all. I keep telling myself it can.t be this bad. I'm a little weepy today as I lost a lot of hair this morning
But feel if I cry I'm giving in. Wow sorry for all that

@ford1929 knowledge is power honey and you want power over this because it isn't going to win. Hair loss? I pulled mine out the first time a lot come out. I got tired of it falling all over the place. This is me after my 4th treatment the first time. I got the clippers and shaved my head. I don't wear wigs or turbans in public. I go like I am. I don't wear makeup either. It's a lot less stressful when I don't have to worry what other people think. I don't care. 😊

@ford1929 this is me with my hair.....it was dramatic but I'm ok with it now.

@ford1929 Oh, we've all felt like crying and have cried during this journey none of us wanted to traverse. We're all different in that way. I also found the nursing staff to be wonderful. I felt surrounded by angels.

When you are ready will you let us know what information you receive from your doctor tomorrow?

@naturegirl5
Yes I will
Went for acupuncture this morning. I’m a believer it helps.

I was first diagnosed in 2010 with HGS ovarian cancer stage 3c. The tumour was 20 cm in diameter, and I had no idea! I was told it was equivalent to being 6 months pregnant.
It’s recurred 8 times since then, with chemotherapy each time, as well as surgeries when the chemotherapy wasn’t enough to deal with it.
I’m still alive and fighting fit. I keep teaching 17/18 year olds, and looking forward to the new year starting soon. I live in Sydney, Australia, so having a summer holiday at the moment.
I have also been diagnosed with Sarcoidosis which has made life a little more interesting. The next PET scan is on 17 February and oncologist visit on 20 February. The last few times, even though there has been evidence of disease, he has advised watching and waiting. I trust him explicitly, and I have enjoyed the break from treatment.
I got to speak at an oncology conference in November 2025 about my experience as a patient. It was fun, but also sobering, to talk to doctors/nurses/medical students about what I have gone through. A little confronting for them. I got a standing ovation, and there were a few teary people in the audience.
I had quite a few people come and thank me afterwards, even the next time I visited the hospital!