I don't want radiation

[drw]

I just had a lar with removal of the rectum on 6/18/14. I had 2 lymph nodes light up on my pet but since my rectal tumor was stage 1, I was told that I was probably being over treated with surgery. My. 4 hour surgery turned into 9 hours and a loop ileostomy... and yes, stage 3 cancer. The surgeon removed my rectum and approximately 26 lymph nodes. Only 2 came back positive. So now my oncologist says chemotherapy for 6 months with 2 months of radiation. I don't see why I need radiation because that whole area is gone. He wants me to meet with radiation doctor and discuss the pros and cons and I will. I have read so many horror stories about radiation damage and I'm scared I won't be able to have my reversal. So what are your opinions and experiences? I would really love to get your take on it. Thank you all.

[SkiFletch]

The reason to have radiation is that with rectal cancer, when lymph nodes are infected, there is a high chance for local recurrence. Radiation drastically reduces this risk, hence the recommendation.

Your radiation based side effects will be different with an ileostomy. Don't have to worry about all the constipation, fissures, diarrhea and other troubles from that. MOST folks have radiation before surgery. Few do it post surgery. Hope you can hook up with some folks with similar experiences

[nkoske]

SkiFletch is right...the radiation helps keep local recurrence at bay since everything down there is jammed together.

My radiation was before surgery so I can't help much with post surgery radiation.

[Peabody5422]

I went from T1 N1c MX to Stage IV 2 years after chem and radiation. I would go for all I could get. Now I have nothing left but the hope of chemo. I wish I had the extra choice of radiation. I don't.

Deb

[KWT]

No one wants it,butt it seems a necessary evil in our battles

[justin case]

When I was first diagnosed, I had a doctor who would go along with my requests. I agreed to chemo, and had 3 rounds of FOLFOX. I figured good I did some chemo, I should be good to go. Then radiation was discussed, and I thought surely I could do some more chemo, and not need this radiation stuff. My oncologist said OK, you can do FOLFOX with ironotican, and another chemo, which I cannot remember. There was another patient at my clinic, already doing this, as he wanted nothing to do with radiation. The chemo cocktail scared the hell out of me, so I did the radiation ( with full FOLFOX) as a side benefit.During radiation, the fellow who did the awful chemo cocktail, joined me at the radiation facility, only 4 weeks later. I thought with all this chemo and radiation, I would surely get out of surgery. After surgery and reversal, I did 12 more rounds of chemo, and I still worry about recurrence. The odds are in my favor now, and I'm happy I went through all the treatments I could. After about 2 years, going on 3 at this site, I am still alive and posting, probably because of the radiation I received.
Regards,
Michael

[drw]

Thank you all for your responses. I really appreciate all of your advice and sharing your experiences. I have an appointment in 2 weeks to discuss my treatment. My main concern is my rectum and local lymph nodes are gone so I don't understand the need. Obviously there is a need because it's standard of care and my oncologist is pushing for it. I was supposed to have my reversal 6 weeks after the lar but most of the posts I have read made me think that dealing with my new plumbing and chemo was probably more than I want to deal with, but I can't wait to get rid of this bag. It makes me sad.
Thanks again. You are all very helpful.

[SkiFletch]

OK, some clarification and description that I hope might help. Though the organs themselves (colon and rectum) are relatively similar, their associated lymphatic systems are quite different. The lymph system for the colon is a string of nodes lying on top of the organ in a relatively even line. The segments are connected to the body's other lymphatic vessels only at the ends of the line so to speak. Kind of like a limited-access, divided interstate. It's hanging out there by itself and that does not allow for easy spread beyond the portions removed surgically.

The nodes servicing the rectum however are connected in more like a mesh, or a spider web. To borrow the road analogy, they're like the roads of some old city. Twisting and turning with alleyways everywhere that extend out a long ways through out the rest of the region. The chance for spread through this "field" of nodes in the local area is very high, hence the recommendation for radiation.

Hope those descriptions can offer some insight into the reasoning.

[Rob in PA]

Nice description Ski! Never heard it that way before.

Radiation sucks, but as someone said earlier, it is a necessary evil. Especially early in the battle.

[newmexico]

SkiFletch, thanks for the lymph node description, that was really helpful!

My tumor was in the sigmoid but right at the bend where it goes into the rectum. My surgeon told me he took 2 inches of rectum (in addition to my sigmoid). However, when I went to the radiation oncologist, she said that because my tumor was above the peritoneal reflection, I was not a candidate for radiation. I was so happy, as I didn't want to fry my remaining rectum, which has adapted well to its shortened length.

However, after reading these posts, I wonder if radiation wouldn't have been a good idea.

Good information as usual!

[SkiFletch]

Well OK newmexico, time for more anatomy lessons . If you run a scope up through the rectum into the colon, you will never see the dividing line between the two from the inside. The organ looks the same. The anatomical definition for rectum is the portion of the bowel that is inside the pelvis. Once it travels out of the peritoneum (abdomen) into the pelvis, the bowel is termed "rectum". Though if you looked at your section of bowel that was removed, you'd not be able to tell what portion was rectum and what portion was colon. The changeover is gradual. Similarly is the lymphatic changeover. It's not like the system is incredibly different once you exit the peritoneal cavity. Using my street analogy, you'd be just at the very beginnings of civilization in those 2 inches of "rectum" that were removed from you.

One other thing to think about. The small intestine (which fills most of the lower peritoneum) does NOT tolerate radiation. So folks like you whom have just a little bit of rectum are NOT eligible for radiation, because they don't want the beam hitting the small intestine by accident and messing with your GI world. Rest easy, the right thing was done.

[PGLGreg]

I had 6 weeks of radiation after surgery for stage 2 rectal cancer. I have no medical training. Here are my thoughts about the situation:

(1) If the doctor recommends it, do it. If you try to self-prescribe, you're more likely to be mistaken than the doctor.

(2) The point of removing lymph nodes during surgery is not so much to get rid of any cancer they contain as it is to diagnose whether cancer is present in your lymphatic system. If it is, that's a way for the cancer to spread (as it may have already).

(3) The standard treatments for cancer don't necessarily have to make sense, because they may be derived from observing patient populations rather than a theoretical understanding of exactly how cancer works. That is, a therapy could be recommended because in the past patients like you did better when treated with the therapy than others who had some different treatment. But it might not be known why it works.

[drw]

Thanks again for your input. Skifletch - thanks for breaking it down. That was very helpful.

[newmexico]

Thanks, SkiFletch.

Why doesn't the small intestine tolerate radiation? What happens?

[Jachut]

Radiation enteritis for one - bleeding, scarring and adhesions (leading to obstruction), chronic diarrhoea, nutrient malabsorption and even necrosis. It happens sometimes even when the rectum is present during treatment - its why you get the joy of being bare ass up over a wedge for treatment - puts the target area in prime position and makes your small intestine and bladder fall back a bit, out of the way.