Primary peritoneal, ovarian

[Molste]

Hi is there many ladies with this diagnosis and how did you go on?thanks in advance

[Alice77]

Primary Peritoneal cancer is considered extremely rare and when I was diagnosed the figures were something like 7 in a million, but from what is appearing on this site and others my suspicion is that the incidence is actually much higher than this. As it is treated in exactly the same way as Ovarian cancer, oncologists do not seem to differentiate and correspondence often refers to my having ovarian cancer. When my ovaries were removed they were found to be perfectly healthy. I was initially treated with some scepticism when I was referred to a gynaecologist because prior to CT scan, which I had to push for, I was told I was perfectly healthy. In fact my CA125 was 1000 plus and I was at Stage 3C.

[Molste in reply to Alice77]

Thanks

[Hockeymom52 in reply to Alice77]

My story is almost the same. Went to gynecologist in December of 2022 as I had severe discharge and staining. I was told I was fine. Then went for routine calcium scoring in March of 2023 showed some ascites. Then went back to gyno as I feared the worst, had pelvic ultrasound that showed nothing but ascites. Since I had hernia surgery 4 months prior I decided to see my gastroenterologist and was glad I did. He was concerned and sent me for CT scan and that’s when they found the tumor in the omentum and lots of implants. Had 3x chemo then surgery in July and 3x more rounds of chemo. I am currently on Zejula but my CA125 has risen to 79 so now we are watching the trend. Hang in there we will all get through this and hopefully new treatments will come soon.

[Hannah54]

I was diagnosed with stage 3 primary peritoneal cancer or gynaecological cancer in 2022, had a big operation in the July. My ovaries were fine but this is treated as Ovarian cancer. I am NED so far and on Niraparib . Best wishes

[Molste in reply to Hannah54]

Thanks

[Itha]

Hi, I was diagnosed with primary peritoneal in Oct 2020. Stage 4B.

cancer was in peritoneal, ovaries and lymph nodes. Had Chemo, debunking and Chemo. I am BRCA1+. Had a NED response and on Avastin and Lynparza for 18 months then recurrence.

Major debulking again and chemo. Had a NED response but 4 months after treatment it came back. That was Sept 2023.

We decided to wait and not treat immediately -I had 6 months of great quality life and then the cancer made it very known ...sever bloating, cramping, ascites etc. Started chemo again (Caylex). 2 treatments down and looks like it is starting to work. I am hoping to have more relieve as tumors shrink (the bowl area is very impacted). Tumors are spread so debulking was not really a good option.

Current count is 9216 from 17 in Sept 2023.

I take one day at a time. I have to manage my energy carefully and what and when I eat as it is problematic. But I try my best. I have a dietician who gave me some good advice: ⅓ carbs, ⅓ protein and rest can be the 'healthy' stuff. Thus juicing and going vegetarian is NO GOOD! You have to eat as if you are running a ½ marathon every day.

I am struggling to eat enough...small meals..regular...early in the day ...else bloating and cramping keeps me awake. I am very aware of what is working and what not - learning every day. It is a process.

I still walk my dogs...albeit slowly and not so far. Chemo makes me very tired and HB is low. But the exercise is NB for overall health and recovery

Yes, it is treated exactly the same as OC and when people ask that I what I say as peritoneal is unknown and difficult to explain. (PS: I do have tumours in the peritoneal again this time)

Hope this is useful?

Itha

[Molste in reply to Itha]

Thanks

[NewtonEmma1900]

I was diagnosed PP stage 3c 1 October 2021, I was also usually referred to as having Ovarian. It was described to me by Professor Christina Fotopoulou as a a series of tiny spider like tumours.

Treatment was carbo/taxol avastin x 3, debulking surgery, and then 3 more. Avastin alone x 2. Rising CA125 and disease spread shown on a PET scan meant treatment was paused. I then had 6x carbo/caelyx which worked extremely well and brought the CA 125 down to 6 and NED.

From Feb 2023 until March 2024 i was on Niraparib. Following ring CA125 levels (but also NED) I am now on carbo/gemcitabine. I have always been very fit and this has helped me: I still walk on average 8,000 steps a day with my dog but have slowed down and sometimes am a bit out of breath recently ( that could be my age though). I have a small umbilical hernia which does not cause any issues and sometimes I have abdominal cramping. I have some residual neuropathy in my toes but I just live with it and my hair grew back, albeit a little thinner. If this treatment works , I will be going onto ‘watch and wait’. Hope that helps. Best Wishes from Katy