Peritoneal Cancer: Anyone else?

I’ve been they suspect me to have peritoneal cancer. I am 38 years old, hysterectomy 15 years ago. Any tips? Tricks, advice?

I read your treatment plan. Thank you. So helpful.
We are still in 6 month check ups for BC. That has been good, but I may have a met to the peritoneum.
We hold our breath each time and now more scary.
Again, thanks for sharing your treatment info. Wishing you all the best!

@drummergirl Thank you for asking 🌺 I had my 6 months bloods and PET-CT scans recently and saw my oncologist yesterday to hear the results. ( I always get them in the app but I prefer to wait and see him, especially if there are changes. I want to be able to discuss immediately. I’ve also misread the results and scared myself silly!!)

My scans are still good but my numbers are still slightly elevated. I was SO hoping they would go back down but they haven’t. But at least my oncologist is still relaxed. It’s watch and wait and keep up my walking ets.

I have my bloods in 3 months (canary in the coal
mine) and my scans and fresh bloods in January 2026. I’ll TRY to not to fret in the meanwhile.

How are you doing a year later?

Elizabeth- I fear I may be facing the same diagnosis. I truly hope you are still doing ok. I also started with triple negative BC and have been 4 years cancer free until possibly now.
My oncologist has been retesting me without expressing concern. My Nodule in the peritoneum is too small to biopsy right now, but after doing research, I have learned that these nodules have high likelihood of being cancer. If that is what they find, I am encouraged at the small size (1 mm) and reading about the relative success of your treatment and that you were at 5 years from it.
I have the ATM gene. Not like BRACA, but raises my chances for getting cancer.
Thank you so much for sharing this information. It was very helpful to me.

Oh gosh, @korinja, I’d love to wrap you in a huge blanket of compassion and peace. Honestly, I know that feeling of just having had enough. Chemotherapy, for the positive side of life it may eventually bring to us, can also have us plummeting to the lowest depths imaginable. Did I get that right?
Demoralizing and wretched were two words that frequented my mind through my many months of aggressive chemo for AML (a form of leukemia) followed by a bone marrow transplant. I know you’ve been there…there’s little dignity left after you’ve had a dehumanizing moment in public, or even alone! There are fog shrouded days that feel positively surreal. Pretty sure most of us who have had chemotherapy have had these moments. Few of us are unscathed by the side effects though we tend not to admit we’ve had moments of living scenes out of the exorcist. 🥴

It’s also important not to compare yourself with someone else. Your personal battles are as unique as you are! You shouldn’t feel diminished in any way just because someone else may seem to be handling a similar situation differently. You don’t live in side of their heads…so they shouldn’t be taking up space in yours rent free! ☺️ Do the best you can each day, or hour by hour, or heck, live minute by minute. Whatever gets you through the day. No guilt for having a down day but also don’t let it consume you either. Hope is the only thing stronger than fear…so try to hold onto that!

I applaud your efforts for trying to remain positive. I do believe it is a key to getting through the immense personal challenges of cancer treatment…mentally, physically and spiritually. When you feel so awful it can difficult to even imagine a positive future or normalcy again.
But I want to harken back to the positive side of chemo! It can and does work for the majority of patients. It’s why we go through it! To have a life on the other side. To have hope!

I’m not familiar with the surgery you’ll be having. Hopefully one of the members in the discussion links I posted for you will be able to assist with answers to some of your questions about peritoneal carcinimatosis. @markymarkfl had mentioned having peritoneal carcinimatosis in this comment: https://connect.mayoclinic.org/comment/929529/

I think contacting an end of life doula was very brave. Being prepared for end times can bring about a sense of peace for having a plan in place. However, don’t be too anxious to take advantage of your prep and planning. I recall a little joke from decades ago with my dad talking about buying a cemetery plot with time payments. LOL. He was in no hurry to cash in on early pre-payments or something like that.
Sending you positive vibes of strength to get you through the worst of times. And I hope you’re able to talk about the surgery and potential upside/downsides of this procedure and make decisions on how to move forward.
Do you have a support system of friends and family, or a spiritual leader?

Hi there,

Thanks so much. I have been wrestling with the idea of whether to have the surgery and continue with treatment. The prospect of making myself even more miserable, putting myself through all of this, with no indication about what kind of quality of life I might have (if I live at all) is daunting and overwhelming. I’ve met with a death doula through hospice to sort of ready myself for what I expect to happen in the coming months. Every time I have allowed myself to have positive thoughts or feel like I’m doing well, I’m knocked down with bad news or I pass out and vomit on myself during a blood draw or some other dehumanizing thing. I don’t think I have the strength or energy that everyone on here seems to have.

Hi @korinja, I did find some more current posts for you with members who also have peritoneal carcinimatosis. Although this discussion was started 4 years ago, there are a few more recent entries such as this one from @danyeltardy12 https://connect.mayoclinic.org/comment/1166757/
~~
There are other conversations with members who have peritoneal cancer. This discussion was started by @carrie40, earlier this year
https://connect.mayoclinic.org/discussion/peritoneal-carcinomatosis-how-do-we-cope-with-this-diagnosis/
~~~
And one more for you:
Anyone here been diagnosed with peritoneal carcinomatosis? https://connect.mayoclinic.org/discussion/anyone-here-been-diagnosed-with-peritoneal-carcinomatosis/

You have my deepest empathy for what you’re going through. Chemo is rough. I’ve been there too and it is darned frustrating and discouraging sometimes. We just want to be able to move on! If it’s any encouragement, it’s pretty common for blood numbers to drop during chemo therapy. Blood transfusions can help bring numbers to a more reasonable level. So please try not to be discouraged if you need a transfusion. It looks like you’ve already had good news with the rebounding of your platelets. So hang in there. You didn’t get this far to give up now. 🧡
Wishing you well with your upcoming surgery. Will the two subsequent rounds of chemo be after surgery?

It looks like most of these posts are from 4 years ago. I was diagnosed with metestatic peritoneal carcinimatosis in February. I have had 4 rounds of carbo/taxol chemo and am awaiting debulking surgery next month. I met with my surgeon yesterday who is not thrilled with the rate my CA125 decreased, and my hemoglobin number is low at 7.4. It sounds like I will need a transfusion prior to surgery. Overall I am feeling very discouraged about my prognosis (which they won’t give me until I’m through the 2 additional rounds of chemo, if I make it that far.) Is there anyone out there still reading this who has been through this? < 3

@stimstimpylegs Wow! That was the mother of all surgeries. How wonderful that your surgery and treatment have been so successful but I’m so sorry you’re dealing with scans showing some hotspots and blood tests showing some creeping numbers. My oncologist too has always said we will jump back quickly into the fight when he thinks it’s wise to go on the front foot again.

I too have had occasions over the last 3 years (while still considered NED) of some concerning info on my PET-CT but they have resolved by the next scans. I have a couple of spots on my lungs they’ve watched since 2021 when I was diagnosed. My bloods were always good after HIPEC.

I was recently put onto 6 monthly scans and midway through my first new period I had a 3 month blood check in April. My numbers had moved slightly for the 1st time since early 2022. My oncologist says he’s not worried and considers me still stable and NED.

I’m very worried what it may mean and whether I’ll need to go back into treatment in the near future. I have my next blood tests and scans in July and my oncologist hasn’t brought those forward.

I feel so great and I’m trying so hard to manage the worry as that causes inflammation (a Catch 22!). So I’ve reverted back to looking at the present and not ahead or behind, and taking it day by day. I do my part of eating very nutritiously, exercising well (I have a Fitbit to keep me honest!) and practising relaxation (eg yoga, Pilates, aromatherapy, reading, pottering in my garden etc).

I haven’t tried any alternative treatments and work closely with my oncologist on what goes in my mouth. He advised against supplements in my first Folfiri treatment as I was eating so well and didn’t need supplements. I would check in with your oncologist to see what he recommends to help your body deal with treatments and fight.

I pray that your current treatments put you back into NED 🙏🙏🙏🙏 Please do let us know how you go ❤️‍🩹🌺