Tough decision - your input welcome!

[Claudine]

The cancer board met today to discuss DH’s case with regards to post surgical adjuvant treatment. According to his onc, based on his staging and tumor location, probability of recurrence is small - in the single digits. But, that’s not null.
In addition, the tumor was quite low and DH only has an inch of rectum left; the surgeon already warned him about post reversal issues such as clustering, and told him that adding radiation (which stiffens tissues) will likely exacerbate problems.
Current plan is to wait until DH has recovered from renal failure, then meet again with onc and radiologist to decide on course of action.
I lean towards no adjuvant radiation, and if that’s what we decide, I know the onc won’t try to make us change our minds since he’s somewhat leaning that way already. I know that there’s always the option of a permanent ostomy, should reversal prove really challenging, but knowing DH he will want to go with reversal first.

Thoughts?

[Rock_Robster]

Hi Claudine, really interesting and tough question.

As you know radiation for rectal cancer is usually done neoadjuvantly, so much of the tissue that was radiated ends up being removed (and the primary target is the tumour, with wider field coverage on marginal tissue and lymph nodes). In this case given it’s post-op, have they discussed what they would actually be targeting with radiation? I assume they wouldn’t be aiming much dose toward the neorectum itself given it’s so far from where the primary tumour was - perhaps it’s more for the lymphatics which might not impact bowel function long-term as much. Also, what was the lymph node pathology after the ULAR?

Although, to be blunt, with an inch of rectum left I’d say it’s almost inevitable he will experience some degree of LARS after surgery regardless. I’ve had radiation, an ileostomy, reversal and LARS, but thankfully 2+ years later my function is now really good. But my primary was 10cm high so I think I had about 2 inches of rectum left post-op (which stretches/expands over time). It’s true that a permanent ostomy is always an option after reversal, although many colorectal surgeons aren’t prepared to go down that path until at least a year of recovery has been observed - so may be worth testing that with them too.

Everyone is different so of course take this with a massive grain of salt, but if it were me in his case and knowing what I know now, I’d probably go for the radiation and a permanent ostomy now. Severe LARS is an extraordinary drain on quality of life, whereas lifestyle with a colostomy can be very good, and the radiation should be very tolerable if he isn’t worried about bowel movements. But to each their own - some people can’t stand the bag, and I totally get that.

Cheers,
Rob

[Claudine]

Thanks Rob, I really appreciate your input. From what DH was told (I wasn’t there), radiation would be focused and target only the area directly adjacent to where the tumor was; all 16 lymph nodes tested negative for cancer, and he has no perineural or perilymphatic invasion. We’ll know more and can ask questions when we meet with the radiation oncologist (next week I think).

Right now DH is in the really early stage so of having a bag, meaning lots of very loud gas, high and liquid output, etc; I’m sure the notion of a permanent one would sound nightmarish, but that may change once things settle down and he gets used to it. But I still think he’ll lean towards reversal, although now that the subject of LARS has been brought up by the surgeon, I will be a lot less hesitant to ask pointed questions (I was reluctant at first, not wanting to stress out DH too much before a major surgery!)

[Rock_Robster]

Totally get it. And the first few weeks/months with an ileostomy are definitely an adjustment until it settles down and your skills become second nature. My understanding is a colostomy is significantly easier to manage.

[Peregrine]

...Thoughts?

Yes, I have a few thoughts on this matter.

First, let me preface this by saying that I in fact had 5 weeks of pelvic post-surgery chemo/radiation about 10 years ago, and I have never had a recurrence in all this time. In these 10 years I would say that the dominant concern in my life has been the management of persistent LARS along along with the long-term peripheral neuropathy arising from my oxaliplatin experience. All of this has significantly changed the way I run my life and the way I decide what I can do successfully, and what I must not try doing anymore. In other words, over the past 10 years I have developed a "new normal" that is considerably different from my previous life-style.

This is not to say that a drastically different new life-style will be unsatisfactory. It just means that you may have to be a bit flexible and a bit versatile. In the 10 years since my reversal I have traveled to more than 30 different countries, but each trip has presented its own problems. Last month we traveled to a country where the only toilets available were the squat-type Turkish toilets -- a definite challenge when you have LARS. But now we have a photo archive of over a thousand different photos from all these different places, with a lot of good memories.

When we show our travel  photos to our friends we never mention anything about LARS. None of our friends know that I once had CRC. We never bring up the topic.

So, what I'm saying is that if DH decides to go in the direction of post-surgery radiation, it's definitely challenging, but it's not the end of the world. Post-reversal LARS is manageable, but only with a lot of planning and determination.

If you need some suggestions for pointed questions to ask the radiation oncologist next week, just let us know.

Take care ...

[Claudine]

Thank you Peregrine, this is heartening! My husband already had to do some seriously adjustments over the past 4 years; he too has permanent neuropathy (in his feet) from oxaliplatin, and the consequences of his lumbar met are a loss of about 80% volume and power in his right quadriceps he’ll probably never get back. That means no more skiing, very limited hiking (with poles), but fortunately he can still bicycle a lot (he’s an avid cyclist).
We really love traveling, have a house in France we go to every summer (although not sure about DH going this year, it will all depend on what happens next, timing of reversal, etc). But knowing it’s still a possibility, even with some degree of LARS, is great! I’ll keep you updated on what happens next

[utahgal7]

Hi,

I wanted to say that LARS is definitely challenging but your spouse can definitely learn to manage. I had low anterior resection surgery 2 years ago (2020) and I had a ileostomy reversal 4 months after that. I struggled with the ostomy bag and LARS. For me, the ostomy bag was WORSE than LARS. With the ostomy bags, I had constant leaks. I was extremely self conscious, anxious and depressed about it. Excuse my language, but the ostomy bag was a complete mind fuck

Each person has their own way of dealing with LARS. My solution for dealing with LARS is using a large volume tap water enema every morning and it gives me 6-8 hours of freedom to run errands, exercise, get things done, etc. without worrying about multiple trips to the toilet.

So, each solution (ostomy bag or LARS) has it own pluses and minuses. Only the patient can decide what is best for them. I have heard that colostomy is easier but my father who had stage IV colon cancer really struggled with the permanent colostomy.

Best wishes to you and your spouse,

Paige

[Claudine]

Thanks for your input Paige! Right now DH's body is really struggling with adjusting to the ileostomy - he went from too much output, to zero output after being given guar gum, and was so bloated last night he vomited (again). The surgeon checked that there was no blockage and didn't see anything obvious. At least rehydration is working and his creatinine levels dropped back down to 2.25 - still too high but way better than 5.2!
Even if things do settle down and he gets used to the bag, my feeling is he'll want to try the reversal.

[utahgal7]

Claudine,

Have you tried Metamucil to slow output? My colorectal surgeon recommended it. Also, eating marshmallows can slow output. It sounds silly but it really does work.

[Claudine]

I bought Metamucil for home, but right now I think we'll go with whatever the docs are recommending. Good tip about marshmallows!

[Peregrine]

... Even if things do settle down and he gets used to the bag, my feeling is he'll want to try the reversal.

If DH is seriously considering reversal surgery, then there are some things that he should probably consider doing right now to prepare for the eventual surgery so that his pelvic floor muscles are still in good shape by the time reversal surgery takes place. This was mentioned earlier in this post:

viewtopic.php?f=1&t=65983&p=511268#p511268

Kegel exercises may be indicated right now, before the pelvic floor muscles have had time to atrophy too much:

Some Kegel exercise posts
search.php?keywords=Kegel+exercises&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

In addition, it may be advisable to make contact with a local pelvic floor rehabilitation clinic such as the one indicated below. They do "Men's Pelvic Health" procedures and related therapies.

Pelvic Floor Rehabilitation Clinic
https://www.threeriversphysicaltherapy.com/

[Claudine]

Great suggestion, thanks!

[Rikimaroo]

Claudine,

I think you know my story fairly well. But 1 year after ileo reversal it was just to much to manage for me. I would find myself going to the toilet way to much even, with Metamucil and all the other things, between clustering (going to the bathroom to poo, every 5-10 minutes), not able to hold it, feeling bound to the bathroom, etc..I went back to a bag. I agree with the fact that the bag makes you feel less attractive, hurts your libido and just annoying to have. I am used to it now and its been fine, I have had leaks, but not so much and once you figure things out its easier.

I would say try the reversal see how it works out and if within a year things are not better make the decision on what to do, if to keep going or get the bag back. The bag is not perfect and sometimes you run into issues where your stoma gets a little fatter or prolapsed then you got to figure out hole management on the bag, etc..It's annoying.

Other than that, bag is not bad, not great, but gives you a lot more control of your life then feeling tied to the toilet.

Thanks
Rikimaroo

[Claudine]

Riki, it’s your story that makes me feel that DH can try the reversal first, knowing it’s possible to get back on the bag, so thank you, it is nice to know that it is always an option. You’re alive and can watch your children grow - that counts for a lot!

[Rob in PA]

--Right now DH is in the really early stage so of having a bag, meaning lots of very loud gas, high and liquid output, etc; I’m sure the notion of a permanent one would sound nightmarish, but that may change once things settle down and he gets used to it. But I still think he’ll lean towards reversal, although now that the subject of LARS has been brought up by the surgeon, I will be a lot less hesitant to ask pointed questions (I was reluctant at first, not wanting to stress out DH too much before a major surgery!)[/quote]


I'm surprised that surgeons are starting to actually acknowledge and discuss the issue of LARS! I've got LARS but is hasn't quite got me yet. I'd suggest going for the reversal, see how it goes for a couple of years and then make the decision of a permanent colostomy. I've had 3 ostomy reversals and each one had their own "issues" but it takes time. I did start doing the occasional enema treatment for the clustering and it has definitely helped. Good luck to your husband, hope everything works out for the best.

Rob in PA