Colonostopy one year after radiation treatment

Your mail on Radiation Proctopathy

Hi Steve,

Radiation proctopathy also known as radiation proctitis, are scars in the rectum liner done by radiation treatments. I believe that this is causing your problematic diarrhea issues. I have radiation proctitis too but they have not caused me much trouble till today, however the effects and symptoms (diarrhea) can be accentuated in a later stage.
Typically these scars never get cured but they do not cause much trouble too. Chronic cases are problematic if they involve bleeding, incontinence, and fistulization. This seam not be your case as per the conclusions of the colonoscopy. I wonder about your symptoms. Is the stool always sort of liquefied?

Diarrhea may be regulated with diets. Soft stool requires lesser intake of liquids or foods with fibers. You may look into this link for ideas of appropriate meals;
https://www.healthline.com/health/what-to-eat-when-you-have-diarrhea 

Your next PSA in February doesn't need to be lower than 1.0 to represent treatment failure. Bounce PSA is typical in prime RT therapies, with constant increaes and decreases of the PSA along a period that can last 4 years.
Regarding that cottonmounth feel, there are alternatives to Flomax (tamsulosin), such as Uroxatral (alfuzosin) or Rapaflo (silodosin) that express different symptoms. You may try them and find which one feels better for you.

You have demonstrated in all your posts that you suffer with the stress caused by the treatment and constant depression. I notice such in the way you write your comments. You may be interested in a study done at Johns Hopkins with Psilocybin. This refers to the compound found in the magic mushrooms known from the 60ths. At those times several researchers were involved in finding the benefits of this product and found it to be good in neurological issues. JH is now conducting treatments with this psychedelic prodrug. The conclusions seem to be good in the treatment of stress and depression. Please read this;

https://www.nytimes.com/2019/09/04/science/psychedelic-drugs-hopkins-depression.html

As we always say, If it doesn't hurt then .... ....

Best wishes,

VGama

Note: This post is the copy of my reply to your email. I pasted here for the many folowing your case.

Your mail on Radiation Scarring

You have sent me this e-mail:

"Hey hope you are well.i am slowly coming to grips  With all this ..but my mind won’t stop obsessing ...everything I think of makes sense to me and it’s all not good ..I have a question I would ask ,my radiologist but if I do they might stop seeing me ...maybe you can shed light .....after radiation to the prostate the prostate slowly becomes scare tissue I take it ..so if the ureathra is inside the prostate how does that not become scare tissue as well ..this is what is upsetting me the most .also heaven forbid if I have a relapse ..this surgeon said if need be they could remove it.  HA HA ..all i think is if the bladder neck is also scar tissue then how could they re attach the ureathra and how would it heal ...this is why I can’t find peace of mind because I think of all these things ..though I’m not a dr it makes sense to me and not good sense ..any thoughts"

My comments:

Steve,

I am not a doctor too but I will give you my lay opinion on scarring tissues formed by the radiation treatment. In any case, as I have told you before I prefer to post my comments in the forum to the benefit of those reading our threads.

My take on the matter is that the radiation rays cross all tissues along its path affecting all tissues in its way. However, the intensity of the rays differs at each type of tissue and place. Scarring is formed naturally to protect living cells and form a continuous tissue. These scars in time may be replaced by normal living cells disappearing for good, but some take years so that we may see them as permanent scarring.
Accordingly, the inner tissues of the prostate are different from the outer shell and from the urethra, so that, after radiation, the inner tissues of the prostate recover avoiding the formation of permanent scarring. However, the outer shell and tissues of the urethra (including the bladder walls) will take much longer to recover and disappear.

Scarring tissues if cut take time to be reattached or never manage to be repaired. For such reason, surgeons discard/dissect the whole scarring portion, reattaching only local normal tissues or try autotransplantation to help healing the place with tissue from other areas or from artificial manufacturing.
To such extent, your doctor's comment makes sense. He would use the good portion of the urethra for reattachment but he cannot assure you that the sphincter at the bladder neck is proper to be saved so that the reattachment would be more urethra to the bladder directly. That would make you incontinent for life or oblige you to install a urinary mechanism system like the AMS800.
In similar scenario, some guys do nerve grafting to improve erections after radical prostatectomy.

Best,

VG

Collateral damage
Hi all,

If you look at page 3 of the paper which I reference below you will see that other organs receive high doses during pelvic radiation and more importantly the doses seem quite variable over the organ.
The patients received 70GY each and this worked out to means of 67.2 and 68.1 Gy to the target zones with means of (66.6 - 67.9) and (67.4 - 69.9) respectively.
Interestingly the rectum and bladder were pretty hard hit as well with doses of 51.4 (38.6-54.7) and 45.1(39.2-62.3).
The higher doses are received by the lower part of the bladder where it joins the urethra and the area of the rectum immediately under the target zone, patients vary in their reaction to this as some patients are more susceptible to radiation damage than others.
https://www.researchgate.net/publication/224920097_Three_Years_of_Salvage_IMRT_for_Prostate_Cancer_Results_of_the_Montpellier_Cancer_Center

Best wishes,

Georges

Do not always trust your doctors, but you know that!

Hi Steve,

When Tigger sent me off to meet Eeyore, the French medical profession's answer to Vidal Sassoon, he told me that I would have 20Gy and it would not hurt!
I had already done a bit of research and I knew that this was as likely as unicorns farting perfume but I said nothing.
Between combing back his greasy locks Eeyore informed me that I was up for 66 Gy and not a lot else.
Thankfully the guy that was in charge of preparing patients had a lot of good advice like making sure that my rectum was as empty as possible and my bladder was as full as possible.
This leaves as little as possible of the rectum under the beam and pushes the bladder up so only the neck is in the target zone.
There should be a book of best practice that all doctors would use for patients but there does not seem to be, just like most doctors seem to be unaware of or unwilling to tell their patients about the interesting and varied side effects of ADT!

Best wishes,

Georges

Surprise, surprise

Hi Steve,

There you go.
You were well informed about all the short and long term downsides of prostatectomy which you did not undergo but were naive in the old fashioned sense as in not knowing all the effects of radiotherapy which you did undergo.
Most of the side effects of prostatectomy are short tail; the gas pains and constipation in a few days, the abdominal pains and bladder spasms are almost over after a month or two, in most cases the incontinence gets better quite quickly although becoming almost leak free takes longer and around five per cent will have long term problems. It really does do in your sex life, even young men with both nerves spared will have about a forty per cent rate of impotence and orgasm varies from not bad through a distinct non event to painful in a few cases.
Radiation has serious long tail consequences from serious damage to the bladder and rectum to impotence due to damage to the nerves and structures around the bulb of the penis.
I had both plus a side of ADT, I have had some nasty side effects, some of which I was aware of beforehand and others which were a bit of a gotcha. I was pretty lucky with the radiation as I was warned of various things that then did not appear. Some like proctitis could still arrive while others like skin burns are safely forgotten.
In my case it is quite likely that the cancer may reappear although that is not a given and the rate at which it will progress and how successfully it can be treated is anybody's guess.
I just have to keep my fingers crossed, hope for the best and get on with things.

Best wishes,

Georges