The Colon Club

Hi there. new to the forum. I was just dx with recurrant mets to the peritoneum and my Onc said that surgery is no longer an option. I am trying to understand why he automatically ruled that out. Last February I had a liver and colon ressection (They also took my gall bladder as well) and I recovered pretty well. I have read a lot about CRS & HIPEC, and I only have 3 identified spots on the CT Scan. I am 48 and in relatively decent health (for someone who has stage IV CC with Liver Mets). My Onc is pretty well respected, but he made it seem as though surgery is no longer an option. Almost as if because we tried it once we can't try it again? Anyone else run into this?

Thanks!

I don't know the circumstances, but in my opinion the surgery call should be made by a surgical oncologist, not a medical oncologist. Medical oncologists love their potions, elixirs, and snake oil. Mine grudgingly allows surgery, but does not like radiation. My two cents.

Ditto to what Mike said. Surgeon should make surgical calls, Onc should make chemo calls. If you have not already done so, get opinions at major cancer treatment centers or major cancer hospitals. I'm passing this along, but something tells me you probably have already done this.

good luck,

Lee

This is a common "standard answer" based on a particular group's experience base, technology level, assumptions and viewpoints, about likelihood of success or futility with average talents and standard answers. These answers are typically considered "current" but are often obsolete when viewed from a more advanced state of the art somewhere else, or a higher service level. You can be turned down many times, but one good "yes", with a good plan, is enough.

The standard answers can change slightly between guilds e.g. average oncologists vs average oncological surgeons vs more specialized surgeons vs interventional radiologists. A tour through 1-2 of each is the usual starting point for the diligent patient; we added alternative therapeutic nutritional points of view. Calling around for different opinions, surfing/researching, looking for better options, perhaps globally, means climbing the pyramids of medicine at major cancer centers looking for the right heavy hitter(s), or doing things somewhat alternative or experimental.

The most likely pathways of success in these refusal cases are typically with multimodal treatments, some combination of surgery(s) and (immuno)chemistry(s), some steps recognized, others perhaps less so. A great preplanned package is seldom offered in a single place, start to NED. You, your friends, family, and caregvers' capability, insights and effort can make a big difference.

In our case, several major treatment steps with 2 surgeries were glued together with alternative chemistries to overcome the typical showstoppers that reflect the 6 inches of chain between some providers' ears. We had many opinions, mostly conventional medicine and some alternative MDs; each consultation is a learning experience. These peritoneal mets were the first to go, presumably because of the fortuitous timing with respect to diagnosis, available immune response, experimental/CAM neoadjuvant treatments duration (2-4 weeks before surgery), and degree of alt-experimental chemistry targeted, more than commonly tried.

Agreed. Medical oncologist said no to surgery and surgical oncologist fought for it. Contact them yourself if needed. We did.

Phatboy,

DH has been told the same thing (surgery never an option) by 4 oncologists. All give the same reason, that because of the multiple sites in both lobes of the liver AND the peri involvement AND some lung nodes, that no surgery would get it all. And they won't "go in" if they can't get every site, even tho' the liver tumors have shrunk. DH only had the hemi surgery because he was almost completely blocked. We are grateful OX has worked on/off for the past year and hope DH can continue a few more months with it before switching to IRI. Wish there were more complete options.

M

mhf1986: ...(surgery never an option) by 4 oncologists. All give the same reason...
That's the standard oncology view, and in fairness probably most surgeons' view too.

...because of the multiple sites in both lobes of the liver AND the peri involvement AND some lung nodes, that no surgery would get it all.
This is where one might attack the showstoppers, the other 2 out of the 3 sites. We got the peri mets right off the bat through several alternative/experimental treatments, combined, with the peri mets' necrosed remains scraped out during the initial resection for obstruction. (#1) The lungs nodes took longer to treat but did not interfere with next surgery. One small lung node vanished by 12 months (#2), before second surgery; the next lung node petrified in the second year under chemo with more (alternative/natural) chemistry added on. (#3) was prevention of new scanned mets and lymph nodes, where everyone's expectation was that significant spread should have occurred in 13 months. (#4) We had an aggressive and thorough anti-metastasis plan in place, including during surgery.

...And they won't "go in" if they can't get every site, even tho' the liver tumors have shrunk.
Some (top flight) surgeons may bend this if there is a multistep or multimodal treatment plan, previously described in the literature, or already working in the individual, or both. Usually the rule bending is at two met sites; three sites and/or (likely) metastatic dessemination is definitely a reach, but we did it.

...before switching to IRI. Wish there were more complete options.
There are, but they are not "standard" and their uses are usually too fragmented to be decisively effective enough to overcome blind objections of the "average" and the "standard".

phatboy wrote:Hi there. new to the forum. I was just dx with recurrant mets to the peritoneum and my Onc said that surgery is no longer an option. I am trying to understand why he automatically ruled that out. Last February I had a liver and colon ressection (They also took my gall bladder as well) and I recovered pretty well. I have read a lot about CRS & HIPEC, and I only have 3 identified spots on the CT Scan. I am 48 and in relatively decent health (for someone who has stage IV CC with Liver Mets). My Onc is pretty well respected, but he made it seem as though surgery is no longer an option. Almost as if because we tried it once we can't try it again? Anyone else run into this?

Thanks!

HIPEC sounds great on paper (a surgical procedure that can remove peritoneal tumors, sign me up!) but the 5-year disease free survival statistics for mCRC aren't actually very good. As with all cancer treatment there are trade-offs involved. When the disease is uncontrolled (actively spreading) surgery may very well achieve absolutely nothing for you long term except destroy your quality of life. Once the cancer is metastatic, removing the tumors without first achieving global control of the disease through treatment can be worse than pointless.

Just because surgery is not an option today doesn't mean it can't become an option tomorrow.

Unfortunately the prognosis for peri mets is poor, and the probability of success of HIPEC for curing metastatic adenocarcinoma in the presence of other mets is slim to none. Meanwhile chemo can give you fair quality of life for a significant period of time. If you shop around you might be able to find surgeons who would work on you, but the question is whether it would really help you or whether it would harm you. All surgeries carry risks, especially HIPEC, and if the surgery is not curative, you are really risking a lot of quality of life for a dubious or non existent extension of life. That's why these decisions are should be made by a multi-disciplinary tumor board who can weigh all the options for your particular case. If your case has not been reviewed by such a board, it would be worth your time to get a second opinion from a medical center that can do that.

phatboy wrote:Hi there. new to the forum. I was just dx with recurrant mets to the peritoneum and my Onc said that surgery is no longer an option. I am trying to understand why he automatically ruled that out. Last February I had a liver and colon ressection (They also took my gall bladder as well) and I recovered pretty well. I have read a lot about CRS & HIPEC, and I only have 3 identified spots on the CT Scan. I am 48 and in relatively decent health (for someone who has stage IV CC with Liver Mets). My Onc is pretty well respected, but he made it seem as though surgery is no longer an option. Almost as if because we tried it once we can't try it again? Anyone else run into this? You have to be your own advocate and not accept "no" as an answer.

Thanks!

Do you currently have liver mets? At any rate, I would pursue my options. My current oncologist is my fifth. It took me some time and effort to find the right doctor who is up to date and open minded.

Proton beam radiation may be an option for you.

Good luck! Hoping the best for you.

Thanks everyone for your response. I met with another Onc who basically explained to me that the reason many Oncs don't consider surgery an option is that the fact that the cancer came back is indicative of it being in the lymphatic system and thus only systemic chemotherapy is an option. This Onc didn't rule it out if the peritoneal tumors respond to chemo, but said, the first step is to treat systemically. Its a crazy ride. The highs & lows are exhausting, but we press on. I go for my CT scan first week next year and depending on how fast they grew will determine my chemo cocktail. Most likely FolFiri with Vectibix. Anyone have any experience with that particular cocktail? I finished my last round of chemo in June 16 and was on FOLFOX March through June. It was doable, but made me look like a cancer patient! Hope all get to enjoy the holidays and not spend too much time obsessed with this stinking thing!

Happy Holidays
Phatboy!

Okay, so got plan. FOLFIRI with Avastin. 4 rounds than Re-scan to see if its working. If it is, then on that for 6-9 months and then explore the possibility of a chemo break. My first Chemo treatment included 5 rounds of folfirinox and I did see 50% tumor reduction so My onc thinks that I should experience tumor reduction with FolFiri and Avastin this time. Not sure how to look at it, but with Lexapro I am taking it in stride. They say positive attitude doesn't matter to the disease, but it sure matters to me.

My Onc said MSKCC is doing some immunotherapy experiments and that if successful I might be a candidate for that. But too early in the experiment to know yet.

Keep fighting
Phatboy