If have a dear friend who grew up in Scotland, and she's told me countless times that here in the US people should count their lucky stars for our healthcare system, rather than complain about it! And here, you certainly confirm that. I'm wishing the best for you on Dec 4th. I just got a call from my cardiologist, and I've been cleared for surgery on Nov 30th. Whew - a big hurdle to clear.... Love and prayers right back to you! Ruth
I was diagnosed with peritoneal carsanomatosis . I had 8 chemo treatments and surgery . I am doing well. I am in a wait and see stage now as some growths that were left after surgery have grown and some have lessened in size. I have CIPN and that is getting better. I have an AFO brace and I use a cane when I’m out . It has been a difficult road but with good medical team and family and friends as support I feel very blessed
At 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
At 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
@livedinrochester. Go ahead and contact your previous GYN oncologist. I will save you lots of time and stress. Plus, if the doctor made a mistake, your phone call will be a wake-up lesson for him. Hopefully, it will prompt them to be extra careful next time. Was this doctor involved in your surgery at all?
As for you, you’ve already started on the way to self-advocacy. Good job!
What does HIPEC stand for?
Hello,
HIPEC stands for "HIPEC, the abdominal cavity is bathed with hot chemotherapy drugs, for 90 minutes to kill any cancer cells". Sounds so scary.
Anyway, my GYN Oncologist thought it might be Low-grade appendiceal mucinous neoplasm (LAMN) instead of Ovarian but could not be sure until she opened me up. Really liked her.
My pathology report shows peritoneal cancer but no one said anything to me about that but I now have an appt with a Gastro surgeon & oncologist for something. I agree with advocacy and I did contact the oncologist asking "what"? Not heard back yet. thanks for your concern. Cancer is the only thing that has really SCARED me!
At 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
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!
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!
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! 🙏❣️
Hi no I didn’t have HIPEC in fact it’s wasn’t even mentioned to me.. I’m meeting my oncologist on 20th August next so I’ll be sure to ask him about it… it sounds pretty full on. I had chemotherapy from December to April and seemingly I’m in remission… trying to get back to normal as much as possible … hope you’re doing well x
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If have a dear friend who grew up in Scotland, and she's told me countless times that here in the US people should count their lucky stars for our healthcare system, rather than complain about it! And here, you certainly confirm that. I'm wishing the best for you on Dec 4th. I just got a call from my cardiologist, and I've been cleared for surgery on Nov 30th. Whew - a big hurdle to clear.... Love and prayers right back to you! Ruth
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1 ReactionHi yes I’ve been diagnosed with peritoneal cancer
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3 ReactionsI was diagnosed with peritoneal carsanomatosis . I had 8 chemo treatments and surgery . I am doing well. I am in a wait and see stage now as some growths that were left after surgery have grown and some have lessened in size. I have CIPN and that is getting better. I have an AFO brace and I use a cane when I’m out . It has been a difficult road but with good medical team and family and friends as support I feel very blessed
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5 ReactionsAt 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
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4 Reactions@livedinrochester. Go ahead and contact your previous GYN oncologist. I will save you lots of time and stress. Plus, if the doctor made a mistake, your phone call will be a wake-up lesson for him. Hopefully, it will prompt them to be extra careful next time. Was this doctor involved in your surgery at all?
As for you, you’ve already started on the way to self-advocacy. Good job!
What does HIPEC stand for?
Hello,
HIPEC stands for "HIPEC, the abdominal cavity is bathed with hot chemotherapy drugs, for 90 minutes to kill any cancer cells". Sounds so scary.
Anyway, my GYN Oncologist thought it might be Low-grade appendiceal mucinous neoplasm (LAMN) instead of Ovarian but could not be sure until she opened me up. Really liked her.
My pathology report shows peritoneal cancer but no one said anything to me about that but I now have an appt with a Gastro surgeon & oncologist for something. I agree with advocacy and I did contact the oncologist asking "what"? Not heard back yet. thanks for your concern. Cancer is the only thing that has really SCARED me!
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6 ReactionsAre you willing to share more? Did you have HIPEC by chance?
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!
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4 ReactionsCongratulations 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! 🙏❣️
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5 ReactionsHi no I didn’t have HIPEC in fact it’s wasn’t even mentioned to me.. I’m meeting my oncologist on 20th August next so I’ll be sure to ask him about it… it sounds pretty full on. I had chemotherapy from December to April and seemingly I’m in remission… trying to get back to normal as much as possible … hope you’re doing well x
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