Peritoneal Cancer: Anyone else?

newely diagnosed with the peritoneal ca. just had pet scan to determine the actual oragin of the cancer. maybe dumb question. Many years ago (30+yrs) i had a hysterectomy. Few years later my overys needed to come out. Was not a cancer problem. But they could not find one of the ovaries. Can that ovary still be there and become cancerous

According to what I have read you can get peritoneal CA if you’ve had your ovaries removed. Praying for you. 🙏🏻🙏🏻🙏🏻

@gramma22 This diagnosis must have come as a big shock to you. No one wants to hear "cancer" for a diagnosis. There are so many advances that occur almost daily that many cancers can be treated like a chronic condition that needs to be watched and treated. And people live for many years with the cancer.

We aren't medical professionals on Mayo Clinic Connect and so I couldn't say whether peritoneal cancer is related to an ovary. Here is a good explanation of peritoneal cancer that might help to answer some of your questions.

Primary Peritoneal Cancer

-- https://my.clevelandclinic.org/health/diseases/22721-primary-peritoneal-cancer

Have you already talked with your doctor about your medical history? The PET Scan will help your cancer care team in planning for your treatment. Are you seeing an oncologist?

I was diagnosed with this on February 7th. I finally get my biopsy results this evening. It’s been along 2 months. My cancer was only found because my Dr sent me for an ultrasound for suspected gallstones. Which is when they found my 7x7x10cm tumour.

Hi Turbo. I have peritoneal carcinomatosis, have had it for five years...first started out with breast cancer 10 years ago. I am BRCA 1 positive mutation. My cancer journey is triple negative breast cancer 10 years ago, thyroid cancer 8 years ago, peritoneal cancer 5 years ago, first recurrent peritoneal cancer 3 years ago and now metastasis to lymph nodes from what they think is probably peritoneal cancer. Mine is basically due to the BRCA1 gene. This gene is like quality control...my gene has a mutation so I have no quality control to get rid of the cells that are not growing correctly, hence they grow into cancer. I have the most amazing cancer team at the MCHS Eau Claire site and they have been by my side the whole way. I actually had my first chemo yesterday for the mets to lymph nodes. It was so nice seeing everyone again and catching up on their lives. I have had multiple surgeries due to the cancer over the years. I do have a port, but with my history I have kept it now for 5 years.

For my peritoneal cancer I had debulking surgery at Mayo Clinic Rochester and they basically opened, removed the big tumors and closed me back up again because there was just too much like "sandpaper" on the peritoneum and some was wrapped around organs and not able to be resected. Chemo took care of it!!! the chemo regimen was not bad, Carbo/taxol. some bone pain, fatigue....but watch out for that steroid premed they give you to help with nausea/vomiting and reactions....it loves to cause a burning pain for about 20 seconds in not so fun areas!! but it is short lived and does its job.

My oncologist in Eau Claire and in Rochester both said. I will not die from Peritoneal Cancer, but will die with it. Something that doesn't necessarily stay away for some people. But I have a good cancer marker with CA125 that if that spikes at all I know something is growing. For some people this is not a good marker, but for me it has shown to be 100% accurate. Once it spikes I have a PET scan and find out where the hot spots are, do a biopsy to confirm that it is cancer and then start chemo....get it before it attacks too many places.

I really feel that attitude is our #1 treatment or way to beat this disease. I have been through so much the past 10 years, but I still work fulltime, enjoy every minute with my husband, children and grandchildren that I can and stay positive for them. If they see me upset, it scares them. Yes, I do have my days where I am pissed, sad, depressed, hopeless and I allow myself that time, but then I look at my life (I am 57) see what I have to live for and put my big girl panties on. I look at all the other disease out there that have no treatment, no way to catch it early...I feel fortunate that I am able to monitor this disease and fight when needed. I am a very stern advocate for myself and my caregivers respect that.

Please feel free to ask me any questions you have about peritoneal cancer. No question is stupid or uncomfortable. This is your life and you want answers wherever you can get them. Good luck to you on your journey and keep a positive attitude!!!

@elizabethboie Elizabeth, thank you so much for posting your story and all that you have been through. You are such an inspiration to all of us. I had my surgery (hysterectomy) and radiation therapy at Mayo Clinic and decided that I would put myself in the very capable and skilled hands of my medical team. Yet, I will advocate for myself too.

Whenever I get anxious or down I try to remind myself of the blessings I have in my life. Today was a beautiful and sunny day in the UP of Michigan where I live. I spent two hours outdoors this evening just walking around a marina and docks enjoying the gorgeous weather.

I hope the weather is beautiful where you live today.

Yes I’ve been battling for 2 1-2 years. Oncologist gave me 3 months to 3 years to live

I have passed my two year checkup. I get CT scan every 6 months now and blood work every 3 months. All tests are negative. I’m golfing twice a week and traveling and doing everything I want. After my surgery for stage 3 Ovarian cancer.

I had my first bout with appendix cancer in 2015. I had an appendectomy, hemicolectomy and 12 rounds of chemo at that time. I was doing quite well and cruising along until my recurrence in 2021. It came back on my ovary. As strange as it sounds, my husband and I were somewhat hoping it was ovarian stage 1. Unfortunately, it was stage 4 appendix adenocarcinoma (goblet/signet cell). It's rare and aggressive cancer without much encouraging data. I went in for cytoreductive surgery with heated intraperitoneal chemo. I had a radical hysterectomy, choleycystectomy, peritonectomy, omentecomy. I will never forget how many times I was told this was a palliative surgery...that I would never be cured...that I needed to "get my affairs in order". I think I still have a little PTSD from all those conversations. I got lucky as the disease was not as widespread as they thought. I got to keep my spleen and did not require an ostomy at that time. It was a tough diagnosis and subsequent surgery. I'm 2.5 years out with NED. I've plugged back into the living world and I am finally feeling a bit more like my old self. I find the emotional and psychological aspect of carrying a stage 4 diagnosis to be the most challenging part of this entire ordeal. It changes you and it can be a little isolating. I'm still relatively young. I had to bid farewell to my fertility, my dreams of motherhood and learn how to live again in this new reality. Sometimes it seems unreal...like a bad dream; but then I look in the mirror and the scars remind me. I'm grateful for the grace I've been shown.... but wow....what a ride it's been!

@princessmaza Thank you for sharing your story and journey. Your strength shines through!
Ginger