Deciding between treatments?

[Marie25]

Long term radiation vs short term radiation (both with chemo) . I guess these are both called TNT. They said long term(5 weeks) is to shrink the tumor, then have surgery about 2 months later. The short term (1 week) is to kill/stop growth and surgery happens immediately following that. With the short term, a permanent colostomy is required. The radiation oncologist said both options give about the same outcomes. DHs tumor is pretty low in the rectum, so the surgeon doesn't know untill he is in there if he will need to do the permanent colostomy. If he does the long term radiation and still ends up with permanent colostomy then doing all that radiation was a waste. (In my opinion. Correct me if I am wrong !) On the other hand, if he is able to get the reversal there could be problems with that and the onc told us he just had a patient come back and ask for the permanent colostomy. And who wants to go thru an extra 2 surgeries! Anyways, if you have advice or articles on stats please send them my way!

[boxhill]

Did they mention distance from the anal verge? That seems to be the most critical factor.

I don't have rectal cancer, but I've observed that people almost always report their doctors saying "they won't know until they re in there" and it seems as if an awful lot of them have permanent colostomies. Then there is the matter of ability to predict quality of life with colostomy vs Jpouch or whatever.

Maybe if you can get the cm from the anal verge figure you can do some research/poll treatment veterans based on that.

[NHMike]

The MRI indicated that my distance from the Anal Verge was a bit over 5 CM so my surgeon told me that she was 95% sure that I wouldn't have a permanent colostomy but she would decide during surgery. I didn't get a permanent colostomy but dealing with the reversal has been very challenging and I'm 13 months out from the reversal. Still, I do like having the choice. I can get a permanent colostomy if I can't live with the reversal but I'm going to give it a very strong try.

[Marie25]

Did they mention distance from the anal verge? That seems to be the most critical factor.

I don't have rectal cancer, but I've observed that people almost always report their doctors saying "they won't know until they re in there" and it seems as if an awful lot of them have permanent colostomies. Then there is the matter of ability to predict quality of life with colostomy vs Jpouch or whatever.

Maybe if you can get the cm from the anal verge figure you can do some research/poll treatment veterans based on that.

It is very close to the sphincter muscles. He also did say that he will not know until he's in there. It is pretty low just don't know the exact distance. I will ask!

[Rock_Robster]

This is a tough call, and there isn’t really a “wrong” answer.

I believe the evidence suggests long-term oncological outcomes are similar between the two.

I ended up deciding on long-course radiation for a few reasons:
- I had a fairly “bulky” primary - a T3b tumour, about 3.5cm. My rad onc believed I had better chance of down-staging with long-course.
- With lymph node involvement, I believe (check this) that the long-course spends more time sterilising the nodal field around the tumour - reducing risk of recurrence
- The short and long term side effects potentially seem to be fewer
- It does allow the possibility of “watch and wait” in the case of a complete response - not that I would consider that as a stage IV patient

The biggest downside is the time taken - the 5 weeks of treatment plus 8-10 weeks to recover and have full effect. In my case I had a very good response (complete metabolic response), so that was encouraging. However I had a small liver met grow when off full-dose systemic chemo - of course I’ll never know if that would have happened anyway.

Big advantage I see from short-course is it gets you done and back to your ‘normal’ life sooner, minimising time for cancer cells to spread.

My tumour was about 10-12cm high, so the risk of a colostomy was never really on the table. I do have a temporarily ileostomy however (min. 3 months).

If your husband is young and capable, I see no harm in trying for the no-colostomy option. If he ends up having one then you’re no further behind; but if he ends up avoiding it then all the better. Yes it’s true - people do struggle with adapting after the surgery/reversal, but there are also many people who are able to get on and have a very normal life (in some cases with modest adaptations). In the absolute worst case, they can always convert to a colostomy later (not a major operation like the original resection).

If he doesn’t need the colostomy, do you know if they will do a temporary ileostomy instead? This is fairly common in rectal surgery after chemo and radiation to allow the anastomosis (join) to heal and minimise risk from leaks.

Good luck,
Rob

[Punky44]

One potential benefit to short course is not dealing with any side effects. My mom still says her 5 days of short course were the easiest part of her whole journey. (Btw, she did not need a permanent colostomy with short course—did they say why that would be the case in your situation?)

[Marie25]

One potential benefit to short course is not dealing with any side effects. My mom still says her 5 days of short course were the easiest part of her whole journey. (Btw, she did not need a permanent colostomy with short course—did they say why that would be the case in your situation?)

Thank you and yes, they said he would need a colostomy since it is low and extremely close to the sphincter muscles. And the surgeon would definitely make sure to have good margins that way.

[CF_69]

I would go for the option to not have a permanent colostomy if the success rate is the same.

Also I think the radiation dose is the same total amount with both options. Someone will correct me if I’m wrong about that.

[Gravelyguy]

I had 4 rounds of Folfox with Vectibix then short course. My tumor was less than 1 cm from the anal verge. I got the same message as your husband. very likely APR but would see when they got in there. I am convinced that it all depends on the surgeon. I had THE guy at Mayo Rochester who works on low tumors do the surgery.

I agree with Punky, no problem with radiation. I did have proton beam radiation and I think Punky's mom did too. This is the latest and greatest I am told!

Dave

[Marie25]

I had 4 rounds of Folfox with Vectibix then short course. My tumor was less than 1 cm from the anal verge. I got the same message as your husband. very likely APR but would see when they got in there. I am convinced that it all depends on the surgeon. I had THE guy at Mayo Rochester who works on low tumors do the surgery.

I agree with Punky, no problem with radiation. I did have proton beam radiation and I think Punky's mom did too. This is the latest and greatest I am told!

Dave

We went to mayo as well! May I ask your surgeon's name?

[Marie25]

This is a tough call, and there isn’t really a “wrong” answer.

I believe the evidence suggests long-term oncological outcomes are similar between the two.

I ended up deciding on long-course radiation for a few reasons:
- I had a fairly “bulky” primary - a T3b tumour, about 3.5cm. My rad onc believed I had better chance of down-staging with long-course.
- With lymph node involvement, I believe (check this) that the long-course spends more time sterilising the nodal field around the tumour - reducing risk of recurrence
- The short and long term side effects potentially seem to be fewer
- It does allow the possibility of “watch and wait” in the case of a complete response - not that I would consider that as a stage IV patient

The biggest downside is the time taken - the 5 weeks of treatment plus 8-10 weeks to recover and have full effect. In my case I had a very good response (complete metabolic response), so that was encouraging. However I had a small liver met grow when off full-dose systemic chemo - of course I’ll never know if that would have happened anyway.

Big advantage I see from short-course is it gets you done and back to your ‘normal’ life sooner, minimising time for cancer cells to spread.

My tumour was about 10-12cm high, so the risk of a colostomy was never really on the table. I do have a temporarily ileostomy however (min. 3 months).

If your husband is young and capable, I see no harm in trying for the no-colostomy option. If he ends up having one then you’re no further behind; but if he ends up avoiding it then all the better. Yes it’s true - people do struggle with adapting after the surgery/reversal, but there are also many people who are able to get on and have a very normal life (in some cases with modest adaptations). In the absolute worst case, they can always convert to a colostomy later (not a major operation like the original resection).

If he doesn’t need the colostomy, do you know if they will do a temporary ileostomy instead? This is fairly common in rectal surgery after chemo and radiation to allow the anastomosis (join) to heal and minimise risk from leaks.

Good luck,
Rob

If not permanent, then yes, loop ileostomy.
As far as lymph node involvement goes , i was hoping they would be removed with good margins anyways to reduce reoccurance. Thank you for the info I will bring some of these questions up to the surgeon.

[Phillypatient]

Have the docs mentioned watch and wait? Sometimes chemoradiation followed by chemo or vice versus results in a complete response at which point surgery is delayed.

MSK leads the study

https://www.mskcc.org/clinical-updates/ ... ut-surgery

Good luck and ask questions!

[Gravelyguy]

I had 4 rounds of Folfox with Vectibix then short course. My tumor was less than 1 cm from the anal verge. I got the same message as your husband. very likely APR but would see when they got in there. I am convinced that it all depends on the surgeon. I had THE guy at Mayo Rochester who works on low tumors do the surgery.

I agree with Punky, no problem with radiation. I did have proton beam radiation and I think Punky's mom did too. This is the latest and greatest I am told!

Dave

We went to mayo as well! May I ask your surgeon's name?

Dr. David Larson did the rectal surgery and Dr. Nagorney did the liver surgery. Everyone we talked to there asked how we got the “A” team. Feeling very fortunate I did!

Dave

[Gravelyguy]

I would go for the option to not have a permanent colostomy if the success rate is the same.

Also I think the radiation dose is the same total amount with both options. Someone will correct me if I’m wrong about that.

I believe the total amounts are fairly close but gory course is slightly less.

Dave

[Gravelyguy]

We all react differently to chemo and radiation but my primary went from a pretreatment length of 3 cm to 1 mm. So there is some hope of being spared a permanent ostomy.

I will say that I was ready for a permanent one and would have been fine with it if that meant some more time with my family.

Dave