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linda4765
@linda4765

Posts: 2
Joined: Dec 11, 2018

HIPEC

Posted by @linda4765, Dec 11, 2018

Has anyone had HIPEC surgery?

REPLY

@linda4765 Let me welcome you to connect. I have not had this type treatment, however I found this study released by Mayo Clinic that maybe helpful for you. It has numbers you can call with question you may have. I believe this what you are talking about?

Hope this helps? Wishing you the Best.
Jackie

https://www.mayoclinic.org/es-es/medical-professionals/cancer/news/cytoreductive-surgery-and-hipec-offers-effective-treatment-for-selected-patients-with-peritoneal-carcinomatosis/mac-20429726

Hello @linda4765 ,
I would like to add my welcome also to you as you have recently joined Connect.
If you are comfortable sharing more, is this type of procedure something that has been recommended for you?

@hopeful33250

Hello @linda4765 ,
I would like to add my welcome also to you as you have recently joined Connect.
If you are comfortable sharing more, is this type of procedure something that has been recommended for you?

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It’s being considered. They have to do some scans and tests to see how many nodes/lesions I have and whether I would qualify. It’s pretty serious surgery I think.

I’d also like to hear from any patients who have actually had hipec. I will be in undergoing it in January 2019 to treat appendix cancer that has metastasized, and Dr Grotz in Rochester stated he has done approximately 1 per week since Sept of 2017. I’m surprised that no one on connect has an experienced response as, yes, it sounds like an intense and rather rare surgery. Would love to read some testimonies. Thanks

Hello @juliedl

I can understand your wanting to hear from others who have had this surgery. It is great to hear what others have to say about their experiences. Perhaps in the near future someone will post and share what they know.

I am impressed with your doctor's experience with this rare surgery. While I have not experienced this type of cancer, nor this type of surgery, I have had a rare form of cancer, neuroendocrine tumors, and I have had three surgeries for these lesions since 2003. I know when you are dealing with something rare the anxiety increases because there is no one nearby who has ever even heard of it before.

I do think that your doctor's experience should provide you with some sense of confidence. My first two surgeries were done by a good oncology surgeon, however, he had never done this type of surgery before and the last surgery, just two years ago, was done by a surgeon who had a lot of training in the technique but said that he had not done a lot of these either.

If you are comfortable doing so, could you share a bit more about previous surgeries, treatments, etc. I would be interested in getting to know you better. Those of us with rare disorders often feel better when we have other people in our corner.

@juliedl

I’d also like to hear from any patients who have actually had hipec. I will be in undergoing it in January 2019 to treat appendix cancer that has metastasized, and Dr Grotz in Rochester stated he has done approximately 1 per week since Sept of 2017. I’m surprised that no one on connect has an experienced response as, yes, it sounds like an intense and rather rare surgery. Would love to read some testimonies. Thanks

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Hi! I would also like to hear from anyone who has had this surgery! My dr is suggesting it for a couple of enlarged lymph in the peritoneal area. I underwent right colectomy and a liver resection in July 2016, followed by chemo. One year later I had radiation to treat one spot on my lung. My liver and lungs have been clean-now this lymph has enlarged! I am healthy and strong – just not sure if I will be that way after HIPEC? And I can’t find anyone who’s actually had the surgery?

Hello… In August 2018 I was diagnosed with appendix low grade mucinous neoplasm; had appendix removed. In Nov 2018 another tumor was found in my colon; I had an ileocecal resection. Please go to PMP appendix cancer support group on FaceBook or google ACPMP… a lot of the members have gonethrough HIPEC…

Welcome to Mayo Clinic Connect, @jellen619,

Are you comfortable sharing a few more details about yourself? What has been your recovery experience after the resection?

@kanaazpereira

Welcome to Mayo Clinic Connect, @jellen619,

Are you comfortable sharing a few more details about yourself? What has been your recovery experience after the resection?

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My recovery has been good. I'm learning what foods are best not to eat because of the reaction I get from them. My bowel habits have really changed. My new bathroom habit is normal bowel movements about 5 times a day verses going 1 or 2 times a week. There are days when certain foods trigger a bathroom episode; I find myself rushing to the bathroom and staying there for sometime; my back side ends up feeling like its on fire and raw. They say this is caused by bile salts. I have been blessed with the outcome of this disease and right now have to do every 6 months CEA test and CT scans for the first 3 years and than yearly as long as there is No Evidence of Disease.

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