Rectal cancer treatment without surgery

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Rectal cancer treatment without surgery

by pfswimgirl on Wed Jul 09, 2014 11:34 PM

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Has anyone experience with rectal cancer treatment without surgery. I have gone through 6 weeks of chemoradiation therapy.  My radiologist suggested I might not need surgery, and if I did have surgery they would remove my rectum completely.  I am going to talk to him more about this next week, but I can find very little about it on the internet. Seems there are trials and studies currently being conducted, but not alot of info out there.

RE: Rectal cancer treatment without surgery

by BarbaraJG on Wed Jul 09, 2014 11:47 PM

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I was diagnosed with rectal cancer 2 years ago.  My tumor was 7.5 cm.  I had radiation and chemo at the same time.  My tumor was about 2 cm after treatment.  I had my rectum removed and a new one built.  Had illeostomy until rectum healed and had reversal in January.  A co-worker had rectal cancer also.  Her tumor was pretty much gone after her treatment; therefore, she only needed to have the tumor removed and didn't need an illeostomy.  That could be what is happening with you.  My surgeon gave me an option of just having tumor removed as opposed to the illeostomy. He advised that if I had the illeostomy, he could get more lymph nodes for testing.  With just the tumor removal, he couldn't get as many.  After discussing it with him, he felt it was in my best interest to have the rectum removed.  It gave me peace of mind knowing he got enough lymph nodes and thank God I was in stage I. 

RE: Rectal cancer treatment without surgery

by rickker20 on Mon Jul 21, 2014 06:13 AM

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You odds of cancer coming back are really high without surgery. Listen to your surgeon he needs to remove lymph nodes to see if they have cancer .

RE: Rectal cancer treatment without surgery

by Hardunger on Sat Aug 30, 2014 02:54 PM

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Son had a few weeks of chemo by portable bag - and radiation - he had his rectum and tailbone removed last October - (cancer originally found April 2013 ) -  SURGEONS never had a scan done after surgery - surgeon said she didn't get it the first day - but they got it the second - I assume tail bone)  NO SCAN WAS PUT INTO ACTION TO SEE IF IT REALLY HAD ALL BEEN REMOVED) Start feeling uncomfortable again -  so he went to local oncologist who I had seen many years ago - he was upset that no follow up scan had been done - so son got one then = and he has cancer - - you may want to do a live chat with NCI - they have a lot of information - just remember to give them your email so that they can send you copy of chat including info. 

RE: Rectal cancer treatment without surgery

by firstchoice on Mon Sep 15, 2014 08:17 PM

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My Mother in law was diagnosed this year and have been doctoring at the Sanford Center Sioux Falls SD.  We live 90 miles from there, seeing radiologist/surgeon and doing a 24/7 Chemo pump and radiation at June E. Nylen Cancer Center in Sioux City, IA which is 20 miles for her.  For the basics, here is what we were told and they claim to have a very high success rate.  Surgeon did a scope (not colonoscopy) that would place the original mass in the rectum and then she will go through the treatments any where from 4-6 weeks, leaning on the lessor.  After treatment is finished, she will make another appt. in 2-3 weeks to have the surgeon do another scope to see how big if any the mass is.  Then another rest for 3-4 weeks for the body to heal and then what the surgeon does is remove the entire area where the ORIGINAL mass was no matter what is there after treatment, even if it appears to be gone.  They claim if the entire area is not removed that the % rate of it reoccuring is very very high.  Otherwise the success rate is survival!  She will need a coloscopy bag, which no one wants to face, but look on the positive side of it.  No more dirrhea, contipation, you clean it out be done.

RE: Rectal cancer treatment without surgery

by dharma19 on Sun Nov 02, 2014 08:00 AM

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On Sep 15, 2014 8:17 PM firstchoice wrote:

My Mother in law was diagnosed this year and have been doctoring at the Sanford Center Sioux Falls SD.  We live 90 miles from there, seeing radiologist/surgeon and doing a 24/7 Chemo pump and radiation at June E. Nylen Cancer Center in Sioux City, IA which is 20 miles for her.  For the basics, here is what we were told and they claim to have a very high success rate.  Surgeon did a scope (not colonoscopy) that would place the original mass in the rectum and then she will go through the treatments any where from 4-6 weeks, leaning on the lessor.  After treatment is finished, she will make another appt. in 2-3 weeks to have the surgeon do another scope to see how big if any the mass is.  Then another rest for 3-4 weeks for the body to heal and then what the surgeon does is remove the entire area where the ORIGINAL mass was no matter what is there after treatment, even if it appears to be gone.  They claim if the entire area is not removed that the % rate of it reoccuring is very very high.  Otherwise the success rate is survival!  She will need a coloscopy bag, which no one wants to face, but look on the positive side of it.  No more dirrhea, contipation, you clean it out be done.

Where are you getting the statistics that without surgery the odds of recurrance are very high?  Can you point me to the medical statistics that prove this?  I didn't have surgery and it has been almost 5 years.  Thank you.

RE: Rectal cancer treatment without surgery

by dharma19 on Wed Nov 05, 2014 02:39 AM

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OK, I must confess I am really afraid after reading this. I also had the portable chemo and radiation.  I retained my rectum and tailbone.  I have serious tailbone pain.  I never had any follow up scans because the doctor said tha there would not be much they could do if it came back (I don't believe this and I think she was a major jerk to say this).  Anyway, my doctor retired and I have not been feeling well at all. I have lots of sweating at night and day--sheets of sweat so bad I get candida rashes under my breasts from the copious sweating (sorry to be so graphic). The pain is bad, and I am now finding out my doc did not follow recommended regimen. I also had lymph node involvement.  I can't believe the pain is STILL bad. I am thinking of having my rectum removed but I also have colitis. I remember the surgeon telling me informally (on way to operating room to put port in) that I should have rectum removed.  My oncologist said no. I now have one of the worst cases of radiation proctology and cystology (bladder) ever seen by many docs. Anyone else out there who had this happen and still deals with the pain after the treatments are up?  My quality of life is severely worsened.  If it wasn't for pain management I would just ask to be put in a coma.  Any ideas on who to talk to about this?  No one KNOWS answers around my rural area.  Most onc docs have not seen a rectal cancer case or have seen one or two.   Any ideas about wher else the pain could be coming from? I also have mixed connective tissue disease (from before cancer) and would love to talk to someone who knows what I am talking about. The last visit to my well intentioned doctor ended in my crying in the car. He told me to take up dancing.  I can't walk 1/4 a mile without serious tailbone pain and then excruciating pain sitting down. I can't sit through a movie--my leg/legs will go numb.  I would give anything to understand what happened to my body.  I feel very alone and feel that no one understands the extent of the pain. I have tried not to while. I was in the military and that would get us in huge trouble, so I am conditioned to put up and shut up.  I also don't want to look like a pathetic person, which is what I feel I am going to look like when I read the post but I am going to go out of my comfort zone and force myself to post it because it is the real me and I have never disclosed how desperate I am to feel better and to understand. (Also, afraid cancer is back). Sorry for the chunk of bandwith.  I just had to see if anyone else has ANYTHING in common with what I am going through. Private message or public message me, I invite both, thank you very much.

RE: Rectal cancer treatment without surgery

by BarbaraJG on Sun Nov 09, 2014 09:42 PM

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Hi Dharma - Where do you live?  Can you find another rectal surgeon close to where you live?  No one should have to go through the pain you are having and you ARE NOT PATHETIC! No one knows what anyone goes through unless you've been through it yourself.  It could be that your surgeon just didn't know what she was doing and that's why you are having such pain. 

RE: Rectal cancer treatment without surgery

by cfisher8192 on Wed Jan 21, 2015 11:54 PM

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I was diagnosed with stage IIa (2a) rectal cancer in late 2007.  I started 6 wks chemoradiation in Jan 2008. I spent another month healing from radiation burns & had surgery in April 2008. My tumor was very low in the rectum & much to my chagrin & my doctors it looked as if a total removal of the rectum was inevitable.  Although my tumor was at the last stage before leaving the enclosed rectum, scans never showed any node involement & no mets. 

On the day of surgery I was marked for permanent colostomy placement. I begged my doctor as I had in dozens of conversations to take a close inspection inside the rectum before going in to just remove everything.

When I woke up I new I felt too good! As it turned out, upon close inspection only a burned scar was left of my tumor & although there was no way to inspect inside the lymph nodes, they appeared normal. My doctor decided to just remove the scar with clear margins & let me take my chances, with the promise I would follow up with more chemo.  I was so relieved & agreed to the chemo even though I don't believe it was necessary & I now have peripheral neuropathy from the side effects. 

My doctor told me they had been doing this in Brazil & Europe with great success.  I am so grateful that he went out on a limb to give me a chance to live bag free. I am now & have been cancer free ever since! 

Ask!! Most doctors won't agree to do this because it is not "standard protocol".  Thank God it isn't!

RE: Rectal cancer treatment without surgery

by susie7 on Fri Feb 20, 2015 04:35 PM

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HELLO, Im brand new here. So I'm just signing in. But I saw your post first. It sounds just like me.  you're not alone. I feel the same way. No one listens. All the doctors stick together. I've been to 6 oncholology doc, To find answers. Finally one ordered a specific type of Mri. It showed a bright spot again. But gi doctor said.. oh it's just nothing. Just radiation burns. He's gone ahead and just took biopsies. But I believe WRONG place. Since other doc said it had gone thru the wall of colon. (And you can't reach THAT... during a sigmoidoscope...) I've had

I've had 3 degree burns. Internally and externally. They feel I have neuropathy of the rectum. There'so so much more that I can share after I'm more comfortable here. I've had an incredible infection x 10 months. JUST WON'T GO AWAY! I'm at the point of bbegging for a colostomy, as the pain is unbearable to use rest room. I'm stuck at home. I'm afraid to go anywhere. 

But I'm seeing horror stories from ostomies.  2 doctor are in conflict, if it's scavenging gone. It's been 1 year this month first diagnosis. Radiation was like a bomb went off. I'm serious! I don't have much will left, to fight. But I'm trying. I have no support, at home... not much anyway. God bless us all.

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