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.
It took my team almost 3 months after initial debulking surgery to decide my primary was appendiceal not ovarian. A very nervous wait. I then had 6 months of Folfiri + Avastin then HIPEC + Cytoreductive surgery + Peritonectomy. I’ve been NED for 2 years since HIPEC. Don’t be scared of HIPEC etc if you get a good surgeon who has done it a lot. While it was major invasive surgery it is very much worth it if you qualify. The pain management in hospital is great. My surgery was 12 hours including the 3 hours of hot chemo and I then spent about 5 days in ICU and 4 on the general ward. They got me moving the day they woke me up and that movement helps with recovery. All the best!
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!!!
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.
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.
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?
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?
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.
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
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?
Hi @dorcarvajal Welcome to Mayo Clinic Connect. Congratulations on your port removal! Wow, this is a moment of celebration for you! Three years is a really long time to have to deal with a port! Yes, it’s convenient for blood work and all the chemo, meds, fluids running through the ‘mixer’…. But I remember how long it took daily to put the waterproof barrier over the top just to take a shower and the inconvenience under clothing!
The biggest triumph is that you no longer need it! I can feel the jubilation in your words! It’s a feeling like no other…that visceral sense of accomplishment when you have faced the most aggressive battle of your life and came out the other side as a victor. Yes! The birds sing louder, you enjoy the buzzing of the bees, you have a sense of calm and patience. Do you also feel a brain shift in that you no longer have a tolerance for negativity and anger? There is a new appreciation for every moment and each day is a gift. Yes, I’ve been there! ☺️
Sharing your story is what Mayo Clinic Connect is all about. We are a community of people who have our own journeys to share. By doing so we help each other by offering encouragement, answering questions and most of all, giving a sense of hope.
May I ask what brought you to Connect?
Again, a heartfelt congratulations! I think all the fireworks for today, being the 4th of July, will be for you. Lori.
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 ❤️🩹🌺
Congratulations on your recovery but also your amazing strength and attitude 🙏❣️. I was diagnosed with stage 4 appendix cancer in 2021. Had debulking surgery to remove a mass, my ovaries and a hysterectomy. 6 months chemo and immunotherapy followed then HIPEC + CRS + peritonectomy. I have been 2 years NED with quarterly scanning. I’ve been told I’m not cured.
You are absolutely right how hard the mental side of this illness, diagnosis and treatment are.
We are so lucky to have such better treatments and they keep improving. Prayers up for continued health! 🙏❣️
@isadora2021 I hope this finds you still doing well. I was diagnosed with stage IV appendiceal adenocarcinoma March 2023. I had debulking surgery, appendix, gallbladder, 57 lymph nodes, section of liver, 1/3 peritoneal lining, and right hemicolectomy followed by HIPEC all in the same surgery. Operation took about 14 hours. I then had 12 rounds of FOLFOX which ended in Jan 2025. I was NED until Dec 2025. Although my follow up CT scans were clear, my CEA blood test results all of a sudden jumped up. There were consistently in the 3s during surgeries and chemo, but then 5.5, now 32 after my 3rd round of FOLFIRI!! This scares the heck out of me. In Dec I had a PET with 4 "hot spots" but oncologist and I were hoping the CEA and PET were false positives due to an open abdominal wound I'm fighting. We were hoping the inflammation from that wound was the culprit, but another PET in March and colonoscopy with positive biopsy for malignancy has me on round 3 of 12 of FOLFIRI. I'm looking for complimentary treatment (supplements or other) to go along with the current chemo regime to fight this escalation in the CEA numbers.
Are you still NED?
Connect
Connect
Like
Helpful
Hug
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.
-
Like -
Helpful -
Hug
2 ReactionsHow are you doing a year later?
-
Like -
Helpful -
Hug
2 ReactionsElizabeth- 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.
-
Like -
Helpful -
Hug
3 ReactionsOh 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?
-
Like -
Helpful -
Hug
2 ReactionsHi 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.
-
Like -
Helpful -
Hug
2 ReactionsHi @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?
-
Like -
Helpful -
Hug
2 ReactionsIt 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
-
Like -
Helpful -
Hug
1 Reaction@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 ❤️🩹🌺
@isadora2021 I hope this finds you still doing well. I was diagnosed with stage IV appendiceal adenocarcinoma March 2023. I had debulking surgery, appendix, gallbladder, 57 lymph nodes, section of liver, 1/3 peritoneal lining, and right hemicolectomy followed by HIPEC all in the same surgery. Operation took about 14 hours. I then had 12 rounds of FOLFOX which ended in Jan 2025. I was NED until Dec 2025. Although my follow up CT scans were clear, my CEA blood test results all of a sudden jumped up. There were consistently in the 3s during surgeries and chemo, but then 5.5, now 32 after my 3rd round of FOLFIRI!! This scares the heck out of me. In Dec I had a PET with 4 "hot spots" but oncologist and I were hoping the CEA and PET were false positives due to an open abdominal wound I'm fighting. We were hoping the inflammation from that wound was the culprit, but another PET in March and colonoscopy with positive biopsy for malignancy has me on round 3 of 12 of FOLFIRI. I'm looking for complimentary treatment (supplements or other) to go along with the current chemo regime to fight this escalation in the CEA numbers.
Are you still NED?
-
Like -
Helpful -
Hug
3 Reactions