PRS wrote:A year ago I was diagnosed with a very low rectal tumor that had progressed thru the rectum wall and into the sphincter muscles. The three local Drs I saw all told me straight out that treatment would involve an APR and include removal of my sphincter. Fortunately my health care provider did not have a local colorectal surgeon and I was offered and accepted a referral for treatment at Kaiser Permanente's huge medical center in Los Angeles. A year later I am NED and still have a fully functioning sphincter, in fact I have had no surgery whatsoever. I thought I should share my story here and detail exactly what happened.
It turns out that this cancer center had just introduced the Habr-Gama "Watch and Wait" strategy with no surgery for those patients who had a complete clinical response to chemoradiation, and I was fortunate enough to be one of the 20% or so of patients who have a complete response. My colorectal surgeon explained that the Habr-Gama strategy had been around for a number of years but was only now gaining acceptance because new studies have shown that when patients on watch and wait do have a recurrence they can undergo "salvage" surgery and the outcomes of this surgery were just as good as if they had had surgery in the first place.
To sum up if you are lucky enough to qualify for watch and wait the odds are good that you'll never have a recurrence of the disease, but if you do have a recurrence then you get "salvage" surgery and the chances of a good outcome are the same as if you had surgery in the first place. To me this seems like a no-lose proposition.
My surgeon explained that the "salvage" surgery info is very new and it's really only colorectal surgeons who keep up with the literature and attend conferences who know about it. She said it was unlikely that the info had yet gotten thru to oncolgists or general surgeons. I asked her if she was the only colorectal surgeon implementing this strategy and she replied that she knew of a number of centers thruout the US that were implementing it. She indicated they were mostly teaching hospitals because the Drs at those centers were usually most up to date. I asked about Kaiser's position on this and she implied it had been blessed by the powers that be but they were leaving the decision to implement up to the colorectal surgeons at each facility. She indicated it was spreading rapidly thru Kaiser's facilities in Southern California.
Dr Angelita Habr-Gama is perhaps the most famous and recognised colorectal surgeon in the world, She is based in Brazil, is probably close to 80 years old, and has had an amazing career breaking thru many glass ceilings in a profession dominated by men. She's definitely worth a Google.
I can provide more detail on this Habr-Gama strategy if anyone is interested.
weisssoccermom wrote:9.5 years ago, when I was diagnosed with rectal cancer, I actually spoke (via email) with Dr. Habr-Gama and a surgeon in Pittsburgh (Dr. David Medich) who were collaborating on a similar idea. Instead of watch and wait....they were taking patients who had a complete clinical response, offering them an excision (either transanal or the newer transanal endoscopic microsurgery), seeing what the biopsy results from that showed and then proceeded with either a modified 'watch and wait' or the more radical surgery.
The studies done on over 2000+ specimens from patients who underwent the LAR procedure indicated that there was a strong correlation between a pathological complete response and any nodes affected. Obviously nothing is guaranteed but the results were strong. My excised specimen showed no cancer cells, all my pre-treatment tests (EUS, CT) indicated that no nodes were affected so I was comfortable with having the chemoradiation, excision and then follow up chemo. The excision isn't an open surgery, causes little to no bowel issues as the amount of tissue removed is miniscule and the rectum is able to heal itself. Personally, I feel better knowing that I had the excision and was able to get a pathology report on it indicating that in my case...no cancer cells were found.
In my mind, the problem with the 'watch and wait' strategy as a whole is simple. You have no way of knowing whether or not microscopic cancer cells are remaining in the radiated area of the rectum. I'm glad to see, at least, that chemotherapy was offered. Not to do mop up chemo would, IMO, be reckless. I know how hard I fought to have the excision and how nervous I was to find out the pathology report from my excision surgery. If I had to do it all over again, I would still opt for the excision as a biopsy tool (if nothing else). It was a relatively simple procedure....spent the night in the hospital only because of an unrelated complication and overall, I have excellent function and lead a relatively 'normal' life.
I am happy to see that in the last almost 9 years since my surgery, that surgeons and the medical community are warily starting to accept alternatives to the accepted 'standard of care' protocol. Hopefully this approach and or some modification of it will gain acceptance in the medical community that there ARE other ways to treat a specific subset of patients rather than just utilizing the more radical surgical approach. I remember reading a paper where one surgeon made an analogy to breast cancer surgery and rectal cancer surgery. The gist of it was that in breast cancer surgery we have evolved from the more radical surgery (radical mastectomy) to a less invasive surgery (lumpectomy...in some cases) while at the same time utilizing other medical treatments such as chemo and/or radiation. The author pointed out that with rectal cancer just the opposite has transpired. We've gone from excisions (without radiation and/or chemo) to the more radical surgery and have not bothered to look at potentially reversing that trend while at the same time utilizing the radiation and/or chemo to achieve similar results. I'm probably not explaining it very well but it has stuck with me and it is true. I'm not knocking the LAR procedure....there is no denying that it has improved survival rates, etc. but it does come at a cost.....one that I was very concerned about. Without surgeons who are willing to push the boundaries and without patients who are willing to participate in these 'trials', nothing will ever change.
Please, make sure you stay on top of your follow ups. I know I wasn't a fan of the every three month exams...either an EUS or a mini flex sig....but I faithfully had them done, along with a CT and bloodwork. As time passed, those exams were able to be spread out and now I am done with them, except obviously for my full blown colonoscopies. It's super important with this procedure that you stay on top of everything and IF a recurrence happens or even if you develop another polyp (which, btw, is very common in patients who have had pelvic radiation) that it is taken care of immediately.
I dx crc with mets to liver (solitary tumor)
After 4 rounds chemo liver tumor shrunk to shadow so had liver resection. Result was clean liver. I've been off chemo for 6 weeks. Due to restart. What is usual "downtime" before chemo resumes. I have tumor in lower colon/rectum which had shrunk after first four rounds of chemo.
Any thoughts or experiences would be appreciated
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