Would like to hear from those who have had Surgery & HIPEC..

[mslaurie]

Hello,

Just wondering how well HIPEC and cytoreductive surgery actually work. So would like to hear "real" stories, success or otherwise from those who have had it done or who are or have been the caregivers.

Pro's and con's.

*How soon after the surgery was a recurrence?
* IF no recurrence how long have you been NED?
* Still on chemo after for maintenance after the surgery?
* Any complications experienced?
* Did you have colon removed and jpouch put in or other?

DH is a candidate to have done about 4 months (currently has peri mets and two less then 1cm mets to liver). The surgeon performing the procedure has done over 500 of these procedures basically its his main career/profession.

Surgeon said slight chance of cure but said 2-5 years life extension would be conceivable said cure is higher for appendix cancer (75-80%) but not so for colon.

When you google you get different stats all over the place would rather hear from actual people who have had it done or the caregiver of someone who had it done.

Thanks much.

[Pyro70]

I would look at the Prodige 7 trial results on HIPEC. It basically says HIPEC has no benefit but CRS can extend life to 4-5 years.

I’ve had two CRS/HIPECs. Both times I had recurrence within 6 months.

[mslaurie]

Thank you, not necessarily the HIPEC part. I know the HIPEC chemo may or may not have much difference one way or the other in doing it or not.. but the surgery part can be the main benefit and depends on how good the surgeon is and/or how much spread one has as far as what I have read.

The surgeon my husband said he has done over 500 of these surgeries with HIPEC so I guess to him maybe he feels the HIPEC must have some benefit.

So you had the surgery 2 times along with the HIPEC and both times recurrence in 6 months? That's not very promising.

[Rock_Robster]

Hi Mslaurie,

Do you know your husband’s Peritoneal Cancer Index (PCI) score? I understand this can be quite useful in attempting to predicting the likely benefit of CRS/HIPEC.

[mslaurie]

No and realistically they cannot tell the PCI index until they look inside. CT, PET, Xrays or Ultrasounds do not show accurate peri mets involvement.

[Rock_Robster]

No and realistically they cannot tell the PCI index until they look inside. CT, PET, Xrays or Ultrasounds do not show accurate peri mets involvement.

Understood, thanks mslaurie

[Pyro70]

Thank you, not necessarily the HIPEC part. I know the HIPEC chemo may or may not have much difference one way or the other in doing it or not.. but the surgery part can be the main benefit and depends on how good the surgeon is and/or how much spread one has as far as what I have read.

The surgeon my husband said he has done over 500 of these surgeries with HIPEC so I guess to him maybe he feels the HIPEC must have some benefit.

So you had the surgery 2 times along with the HIPEC and both times recurrence in 6 months? That's not very promising.

My surgeon, whom I respect, has done a similar amount and still does HIPEC. I would like opt for CRS only based on the latest data. I also suffered serious complications in terms of a bowel leak. Twice - once after the first HIPEC. The second HIPEC removes the rest of my large bowel and created a j-pouch due to recurrence. And then a bowel leak on ostomy reversal. So yes. Surgeries carry risks. I’m lucky to have survived and frankly it is now interfering a bit with chemo and medical treatment from an unresolved fistula. I doubt that skipping HIPEC would have made a big difference. When I did my surgeries we didn’t have data that HIPEC helps so I went with “expert opinion”. Now we have data it doesn’t work. So I’d go with that. I’m sure if you ask though your surgeon will say something like “we use different drugs than in the trial”. Fact of the matter is it likely doesn’t help most patients and there are risks. My 2 cents.

[Canada777]

You can see my signature below. Dh had Hipec Oct 2016. He's young and recovered well from surgery. High pci (20) but we were told they removed it all. No chemo after. Recurrence 9months later. Just one small spot he's been getting chemo for (on and off) and it's stayed stable this whole time. He may qualify to have it removed at some point.

[Pyro70]

You can see my signature below. Dh had Hipec Oct 2016. He's young and recovered well from surgery. High pci (20) but we were told they removed it all. No chemo after. Recurrence 9months later. Just one small spot he's been getting chemo for (on and off) and it's stayed stable this whole time. He may qualify to have it removed at some point.

I’m glad DH is doing so well. One thing to consider for others is that the prognosis after HIPEC for appendiceal cancer is vastly different than for colon cancer. HIPEC is more or less proven to work for apppendiceal cancer and the 10 yr survivals after HIPEC are very high. Few CRC patients survive 10 years post HIPEC.

[mslaurie]

Yes Appendix cancer has a 75%-90% survival rate for surgery and HIPEC and colon and other types of cancer it is more around 25%-35% for 5 year. Many will have multiple Surgeries with or without HIPEC with colon cancer during their treatment.. its almost a chronic illness until no more surgeries or chemo can be done.

[4us4]

No and realistically they cannot tell the PCI index until they look inside. CT, PET, Xrays or Ultrasounds do not show accurate peri mets involvement.

I am on the road to Cytoreductive and HiPEC... possibly October? I am think were are moving forward at University of California San Diego. My surgeon said he would do an "exploratory laparoscopic" before hand. We also meet with surgeons in Oregon, who did not offer this prehand surgery. I'm not sure if there is a benefit or not. Just sharing my plan. Looking forward to seeing your updates.

[bitchslapped]

I created the following thread Dec. of 2017 detailing my BFF's CRS/HIPEC experience b/c we didn't have it on here really ...in detail that is. There are links within the thread to more info:
viewtopic.php?f=1&t=59200


My BFF was told by someone @ UCSD that Oregon (OHSU) HIPEC team was trained there. So surprises me that OHSU does not perform presurgical laparoscopic assessment of PCI Index. Candidates w/PCI of over 20 (if my memory serves me correctly) are not candidates for the surgery. I'd want to know that UPFRONT. Additionally, OHSU has only been performing HIPEC for about 5-6 years. If I had a choice (insurance permitting), I'd choose elsewhere.

If you use the search box above you will also find others on here who have had HIPEC, however some years ago.

Hope this is helpful.

Best Wishes
BS