The Colon Club

prs wrote:See this thread on Watch and Wait:

viewtopic.php?f=1&t=53498

I was going to link this one as well, butt press beat me to it.
Lots of good info in that one.

Best Wishes,
peanut

My Rectal cancer was fairly low as well and I only had a temporary illostomy. Was reconnected without much of a problem. I would check with another surgeon. My tumor was 1.3 cm .

Sphincter sparing surgeries are well known.

The details however, are where the devil dwells !

It may work for you or may not ....
another opinion may well be warranted

my primary was also very low, to the extent my surgeon commented at my first follow up c-scope :
" Wow ... I really did get low on this ... didn't I ? "

Best wishes
CRguy

Things have improved, it will get better from here.
There is no guarantee, surgery or no surgery, with surgery oddss are in favour of being cancer free.
There are so many studies out there, its confusing, one could support any theory.
W&W approach is fairlly new, offered to very small percentage of patients, most studies include only chemo/rad therapy, chemo offered after is not very common, started few years ago, no studdies yet.
There was one study, patients were offered 3 rounds of folfox after initial chemo/rad, results came as 50% CCR, versus 25% if only chemo/rad.
When I was on rad/chemo back in january, met someone who had radiation only, 7 years ago, was CCR, W&W approach, rectal polyp started to come back last year, no mets, so they gave him chemo/rad treatment, dont know what happen after.

Radiation have improved so much compared to years ago, now they can pin-point targetted cells.

Why do people start this threads? Do you want to hear that is fine to avoid surgery from us? My doctor told me "it will kill you" that's all I needed to hear. Going on to 8 years NED.

rickker20 wrote:Why do people start this threads? Do you want to hear that is fine to avoid surgery from us? My doctor told me "it will kill you" that's all I needed to hear. Going on to 8 years NED.

Hi!!! Good to see you still going strong. You and I had similar discussion back when I was first diagnosed. I'm 6+ NED, and my first Dr told me that an out patient procedure - TAE may be the way to go based on pre surgery chemo and radiation. I seeked the opinion of 2 others and each had a different perspective - all different degrees of surgery. No surgery was never an option.

The answer is it depends on the person, their cancer characteristics and how it responds to neo adjunctive treatment. Medically driven.

Agree strongly with your point, the decision should not be based on "I want to avoid surgery".. It should be based on probable outcome and quality of life.

Hoping you and I have this same conversation 6-8 years from now!!! Actually for the sake of others, wishing that science is able to eliminate the need for this thread altogether!!!

Thanks to everyone who provided a ton of information.

Some people like Peter (userid: prs, mozart13) have been lucky to avoid surgery and go on await and watch approach because they have had a complete clinical response. Did you all do something special in addition to the chemoradiation? Like vigorous exercise? Vegetable juicing? Yoga? How can I be in your camp?
Please advise!

Nothing unusual, just took beta glucan before chemo/rad, dont think it had much to do with final result.
My activity was normall, walked every day 4-5 km, rain or shine, was off work during therapy, so that was my main job for time being.
Gym,first time over killed it, felt it for 2 days.
Avoided anti oxidants, vitamins, stayed on high protein food.

At the end its luck, stage, some cancers respond completlly, some dont.

Radiation peak is about 16,17 weaks from initiation, in some people it might take 6 months.
There is another tread where I posted some links about radiation, some info about folfox 3 doses in 9 weeks, post chemo/rad, inreases cCR to 50% from 25%.
Also you will find info in those links what is considered cCR.

Radiation plays major role, how they program it, my radiologist told me that they gonna focus on lymph nodes.
After radiation, was told not to touch antioxidants for at least couple of weeks.

There is no guarantee in this bussiness, surgery or no surgery, surgery is still considered king,
some people had pCR, they probablly had cCR as well, maybe re staging wasnt donne, or it wasnt an option,...
With surgery it is important to get clear edges if posiblle, otherwise if cancer cells present at the edges, cancer is still left and distrubed.
Chemo after chemo/rad is important, to kill any small microcells , if any.

Good luck to you!

I quit smoking the week before radiation began, and chewed nicorette gum all thru treatment.

I too walked for an hour or so most days, but this became more difficult towards the end of treatment when the burn blisters on my butt became too sore. You may want to be prepared for this eventuality by purchasing something like this:

http://www.cvs.com/shop/home-health-car ... uId=641712

My husband just came home today from his open Abdominal Perineal Resection with permanent bag (Surgery was 4/21). He is 44, stage III low rectal cancer, (so low the surgeon who did the colonoscopy could not decide if it was rectal or anal by looking at it) with mesenteric lymph involvement. If I remember correctly his tumor was about 7.8cm. He actually refused to discuss the bag option at all (like foot down I will ignore you if you try), even though 2 doctors told him before chemo/radiation that the tumor was too close to the anal exit to save anything. The tumor shrunk significantly (to everyone's surprise) and the operating doctor said he could save some muscle, but he couldn't promise him he wouldn't be living in diapers the rest of his life. So, he went with the bag. I've already learned to care for it and aside from having to clean the opening and change the bag every few days... it's not that bad so far. Our 2 girls age 5 and 2 have already seen it and were like cool Dad... so can we go to the park now?

tldr: To answer your question If the tumor (7.8cm) had completely disappeared... I don't think he would have done the surgery. He actually had a few choice words for the doctor who did the colonoscopy who told him right off there was no avoiding it. The bag - so far it's a minor inconvenience and the kids didn't even give it a second thought

Hello!

Get a second opinion. Two surgeons told me I would need a permanent bag because of location of my own tumor. I had colorectal cancer. I went to Sloan Kettering, where Dr. Garcia Aguilar spoke to me at length--something neither of the other two surgeons did--told me all the pros and cons, and concluded that he could probably leave enough of my colon to do away with the bag after three months or so. He gave me no guarantees, as he could only be sure once he was actually doing the surgery..but as it turned out I ended up with a temporary bag.

Get the best surgeon you can.

That said, I did get used to the vag pretty quickly, and the story in your head is 100 times worse than reality.

Good luck! The important thing is LIFE!

Raquel

sreekanth wrote:Hi,
I am a 41 year old male with a wife and two children.

I was diagnosed with T3N0M0 rectal cancer on 3/23/17. T3 tumor of 4.5 cm, non circumferential in distal rectum, 2.5cm from anal verge. I am starting chemo and radiation next week after which the surgeons I am seeing are recommending a permanent colostomy because of the location of tumor. They say that they can't be sure if the cancer is cured unless they take out the entire affected area (resect the entire rectum) leaving me with a bag.

If the tumor disappears after chemo and radiation, should I necessarily go into surgery? Or should I adopt a wait and watch approach? Are there survivors who just did chemo and radiation and refused surgery? Colostomy seems very drastic and I am worried.

----
Dx 3/23/17
Stage 2 Distal Rectal rumor, T3N0M0
Chemo/Radiation with Xeloda/IMRT starting 4/18
in line for permanent colostomy- trying to avoid

Thank you Peter (userid: prs) and mozart13

How lucky am I to get quick responses from both of you, the rock stars of this forum who have achieved complete clinical response.

Looks like I will have to start walking a lot everyday like both of you if I need to even have an outside chance for complete clinical response.

When you said you avoided antioxidants, you meant you did not drink green tea or eat fruits and berries during the treatment? My wife has put me on a carrot juice regimen and I had no clue if it was interfering with my Xeloda. I asked my oncologist and he said there is nothing to worry about, keep having the juice.

I was diagnosed with T2, N0, M0 rectal adenocarcinoma on 3/21/17. After many discussions with surgeons and oncologists, I have decided not to have surgery and go with chemo radiation wait and watch approach. Studies have shown that with early stage rectal cancer, you can have a complete response and avoid the LAR surgery and a permanent colostomy. That's my goal. I am now on Day 3 of Capcitabine and radiation. After about 6 weeks of that, I take a month off and resume a CapOx chemo regimen for three months. Shooting for a full cure by October with rectum intact.

Radiology dep. gave me printed stuff to avoid antioxidants, so I avoided even green stuff, avoided vit c, whatever boosts imune system counteracts chemo/rad, buy boosting imune system one boosts cancer cells at same time, point of therapy is to kill it.

Good luck!

TheSquire wrote:I was diagnosed with T2, N0, M0 rectal adenocarcinoma on 3/21/17. After many discussions with surgeons and oncologists, I have decided not to have surgery and go with chemo radiation wait and watch approach. Studies have shown that with early stage rectal cancer, you can have a complete response and avoid the LAR surgery and a permanent colostomy. That's my goal. I am now on Day 3 of Capcitabine and radiation. After about 6 weeks of that, I take a month off and resume a CapOx chemo regimen for three months. Shooting for a full cure by October with rectum intact.

Thats very good choice, and it is good idea to start therapy earlly, to have better result.
Will you do re-restaging, mri and colonoscopy between or just continue, just wonder?
It helps when you have people around you thinking out of the box.

Good luck!