Best to you all. We are under an oncologist for care at Mayo and MD Anderson. Cholangiocarcinoma ( bile duct cancer) and now lesions found on CT in the peritoneal cavity per CT but awaiting doctor to confirm. It’s been a 2.5 year journey. Two surgeries and chemo and immunotherapy ( Keytruda). We are anxious about our visit tomorrow but we are both optimistic in nature and try to stay positive. My wife has two drains and had an abscess on the liver as well to deal with. Fluid into the abdomen always creates sepsis as bile is acidic and caustic to the body. She has gone through so much, recent week long hospital stay at Mayo and 50 day stay at banner with 3 bacterial and one fungal infection. She has lost 100 lbs in two years. She is a fighter however and had managed through two tough hospital stays. We are hoping for the best with our visit tomorrow for Pet scan and CT reviews and to discuss a new course of treatment. Each sepsis issue comes on faster to get her to the ER and takes longer for her to recover from. This is expected I was told. It’s a lot and very complex but trying to be a good advocate for her and ask good questions of doctors and care team. Best to you all in your journey and hoping for positive outcomes.
I also have peritoneal cancer, which I am told is somewhat rare. I agree that it is good to get a second opinion. MD Anderson in Houston is one of the best hospital for this type of cancer, and even though it wasn’t possible for me to relocate for treatment there, I found the consultation with them to be very helpful. My cancer was treated much the same way as ovarian cancer. The course of treatment was 3 rounds of chemo, debulking surgery, and 3 more rounds of chemo.
Getting a port was/is very important and helpful for me. It makes chemo and all of the bloodwork that goes along with it so much easier. I would recommend talking to your doctor about it if they don’t bring it up first.
If you are a patient at Mayo, you should also get a palliative care doctor who will help treat your side effects. This was the most helpful doctor I’ve had since I was diagnosed. They also have social workers who can help not only provide counseling but also recommend other services that might be helpful.
@lacey24 I’m sorry to hear you may have peritoneal cancer.
So important to take things a step at a time.
Waiting for an exact diagnosis is difficult but so important as you will then know exactly what you are or are not dealing with. It also directs what treatment plan is best for you.
Be careful about googling and scaring yourself silly! Remember every one reacts differently to treatments so if you see life expectancy on line it is NOT yours!
It’s also so very important to have a really good medical team around you who you have full confidence in.
I was diagnosed in 2021 with stage 4 appendix cancer. Part of my treatment plan included HIPEC with a peritonectomy. One of the major advances in treatment for abdominal cancers. I’ve been with no evidence of disease now for over 3 years 😊
Was your hysterectomy due to cancer?
To help you feel in control and for peace of mind I would recommend you seek a second opinion.
Here is a brief info piece from MD Anderson: https://www.mdanderson.org/cancerwise/peritoneal-cancer--8-questions--answered.h00-159697545.html
I recently was diagnosed with endometrial cancer; 12 years ago I had an appendectomy where it burst and all of the noxious contents spread throughout my inner cavity. Though they did not find cancer in the appendix I figure there was probably 1 molecule which escaped detection and seeded my Cancer. Who knows, certainly not the Doctors.
Here are the things I have found helpful for peace of mind:
-Research on treatment
-Supplements to avoid or add to chemo (ask your Oncologist)
-Meditation
-Spend time in Nature
-Unplug from daily news (this will reduce anxiety)
-Stay socially connected, volunteer if you have time
-clean up your diet (no sugar or alcohol), avoid blood sugar spikes
Wishing you peace and some good news as you move forward:)
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?
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Best to you all. We are under an oncologist for care at Mayo and MD Anderson. Cholangiocarcinoma ( bile duct cancer) and now lesions found on CT in the peritoneal cavity per CT but awaiting doctor to confirm. It’s been a 2.5 year journey. Two surgeries and chemo and immunotherapy ( Keytruda). We are anxious about our visit tomorrow but we are both optimistic in nature and try to stay positive. My wife has two drains and had an abscess on the liver as well to deal with. Fluid into the abdomen always creates sepsis as bile is acidic and caustic to the body. She has gone through so much, recent week long hospital stay at Mayo and 50 day stay at banner with 3 bacterial and one fungal infection. She has lost 100 lbs in two years. She is a fighter however and had managed through two tough hospital stays. We are hoping for the best with our visit tomorrow for Pet scan and CT reviews and to discuss a new course of treatment. Each sepsis issue comes on faster to get her to the ER and takes longer for her to recover from. This is expected I was told. It’s a lot and very complex but trying to be a good advocate for her and ask good questions of doctors and care team. Best to you all in your journey and hoping for positive outcomes.
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1 ReactionHi Lacey,
I also have peritoneal cancer, which I am told is somewhat rare. I agree that it is good to get a second opinion. MD Anderson in Houston is one of the best hospital for this type of cancer, and even though it wasn’t possible for me to relocate for treatment there, I found the consultation with them to be very helpful. My cancer was treated much the same way as ovarian cancer. The course of treatment was 3 rounds of chemo, debulking surgery, and 3 more rounds of chemo.
Getting a port was/is very important and helpful for me. It makes chemo and all of the bloodwork that goes along with it so much easier. I would recommend talking to your doctor about it if they don’t bring it up first.
If you are a patient at Mayo, you should also get a palliative care doctor who will help treat your side effects. This was the most helpful doctor I’ve had since I was diagnosed. They also have social workers who can help not only provide counseling but also recommend other services that might be helpful.
Sending positive energy and light to you. < 3
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3 Reactions@lacey24 I’m sorry to hear you may have peritoneal cancer.
So important to take things a step at a time.
Waiting for an exact diagnosis is difficult but so important as you will then know exactly what you are or are not dealing with. It also directs what treatment plan is best for you.
Be careful about googling and scaring yourself silly! Remember every one reacts differently to treatments so if you see life expectancy on line it is NOT yours!
It’s also so very important to have a really good medical team around you who you have full confidence in.
I was diagnosed in 2021 with stage 4 appendix cancer. Part of my treatment plan included HIPEC with a peritonectomy. One of the major advances in treatment for abdominal cancers. I’ve been with no evidence of disease now for over 3 years 😊
Was your hysterectomy due to cancer?
To help you feel in control and for peace of mind I would recommend you seek a second opinion.
Here is a brief info piece from MD Anderson:
https://www.mdanderson.org/cancerwise/peritoneal-cancer--8-questions--answered.h00-159697545.html
I recently was diagnosed with endometrial cancer; 12 years ago I had an appendectomy where it burst and all of the noxious contents spread throughout my inner cavity. Though they did not find cancer in the appendix I figure there was probably 1 molecule which escaped detection and seeded my Cancer. Who knows, certainly not the Doctors.
Here are the things I have found helpful for peace of mind:
-Research on treatment
-Supplements to avoid or add to chemo (ask your Oncologist)
-Meditation
-Spend time in Nature
-Unplug from daily news (this will reduce anxiety)
-Stay socially connected, volunteer if you have time
-clean up your diet (no sugar or alcohol), avoid blood sugar spikes
Wishing you peace and some good news as you move forward:)
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1 ReactionI’ve been they suspect me to have peritoneal cancer. I am 38 years old, hysterectomy 15 years ago. Any tips? Tricks, advice?
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4 ReactionsI 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.
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2 ReactionsHow are you doing a year later?
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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 Reactions