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Colonostopy one year after radiation treatment

Steve1961
Posts: 250
Joined: Dec 2017

 Well it’s been about 14 months since I had external beam and high-dose Breaky therapy. Course I have had all the side effects. Tomorrow I go for a colonoscopy and I must admit I am pretty nervous. Not about the procedure about what they might find. I had three hemorrhoids banded. And anal Fisher.  I have not had a decent bowel movement in almost one year. I hope and pray that they don’t find anything out of the ordinary but I just don’t see how they can’t.  It has been 2.5 months since my last PSA test which drop down to 2.5 I wonder if I should wait two more weeks  to make it three months which they want me to have it checked every three months or just go now and get one the anxiety is really really getting to me. I’ve been told that if it does not drop below one or more within 18 months that the treatment may not have worked I hope it did ..any thoughts thanks . I’m trying so hard to keep it together.thanks for all your advice and patience ..

 

 

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Steve,

We all get outbreaks of the horrors.
I had a dose of radiation as well and inevitably I have had a few hot movements plus a bit of anal irritation.
A lot of this is local and the treatment is something like metronidazole and aminosalicylates. Mine just seems to have cleared up on its own for the moment but as they say watch out for the last reel!
Your treatment has a good chance of working and you will most likely come out of this fairly OK, none of us come out of this 100%
I would have given up long ago if it was just me but the wife, the cat and the odd glass of wine keep me going.

Best wishes for tomorrow,

Georges

Steve1961
Posts: 250
Joined: Dec 2017

 I just hope I’m making it seem worse than it really is having anxiety like I have on top of all this it doesn’t help hopefully I can find some peace soon thank you very much 

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Steve,

I have been eating a couple of kiwi fruit a day when I have suffered from problems down there and they do seem to help.
They are a mild laxative and stool softener and they seem to cool things off downstairs so to speak.
We all suffer from the physical effects of treatment, I have a laundry list that I hope will lessen now I am at the end of the intensive treatment.
The anxiety that the whole thing has been in vain and so many years down the line the cupboard door is going to bang open and the PCa skeleton is going to come marching out is just the icing and cherry on a very bitter cake!

Best wishes,

Georges

Steve1961
Posts: 250
Joined: Dec 2017

my wife’s uncle had seeds put in 40 years ago ..I don’t know the extent of his cancer but he is 82 now and seems great ...my aunts husband I found out only 6 months ago damn it ..we r not that close ..had PC at age 68 he is now 83 and still smokes doesn’t look a day over 65 ....I mean they may leak and can’t produce sperm so I guess not a100% ...I really think if men get a physical at age 30 they should all get PSA tested ..that’s the key ..when I hear stories like yours  with PSA over 100 I wonder only if they were getting checked younger ..

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Steve,

You have to bear in mind that I am a rare bird.
8% of men get prostate cancer but only 5% of that total are men under 60, the average patient on Tigger's list is somewhere around ten years older than me.
So I am one in thousands, not only that but I had a fairly advanced case.
I should have had a check up but I felt fine with no symptoms so I did not.
Odds on I was fine by a long way, I had more chance of winning a small lottery prize than having prostate cancer.
We could do a lot of screening, happy days for the people who own the labs as they would see millions more blood samples come through the door but we would find very few cancers.
I am quite lucky in a way, I have been through my treatment and I have come out the other side fairly OK.
Not only that but I am a 7b, if my cancer does return, I have a good chance of holding it back for a decade or maybe two or more.
So swings and roundabouts like all things in life! :-)

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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.

Georges Calvez
Posts: 297
Joined: Sep 2018

Steve also wrote to me on the subject of polyps and proctitis and this is my reply to him.

Hi Steve,

I am not a doctor but this is my understanding of the situation.
Polyps are small lumps of tissue that form on the wall of an internal organ. Typically they are found in the nose and throat, in the lower digestive tract, etc.
They may be completely harmless, precancerous or cancerous.
Old people typically will have several polyps hanging about, in the vast majority of cases they are completely harmless and can be ignored, in fact treating them may result in complications that may be worse than just ignoring them.
You are young so as expected you have no polyps hanging around in your colon.
However you have undergone radiation treatment for prostate cancer and part of the wall of your intestine has been harmed, burnt if you like.
However the area of damage is small.
There are various treatments available ranging from oral medication , through colon irrigation to surgical repair.
In a case like yours where the damage is small the best thing is often to leave it to recover on its own.
You may find that your colon becomes more sensitive and you will have to be careful about what you eat, maintain regular bowel movements, etc but most people with minor radiation proctitis manage to live with it on a daily basis.
I have found, post prostatectomy and radiation, that I occasionally have a strong urge to urinate and I have to be careful about what I eat, more fruit and veg, no student style ring stinger curries, etc but I am managing to live with the side effects and they are getting better.

Best wishes,

Georges

 

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

Vasco, Steve, and all,

My late friend Gary received RT after his R.P. failed years ago.  He had terrible colon damage, but he got serious symptoms only a few years after the RT was performed.  He had to go in periodically for surgical cauterization of bleeding sections, but the cauterizing seemed to relieve symptoms for a good while until they recurred. 

I will note that his prostectomy was about 17 years ago, and the second-line radiation roughly 13 years ago, so RT delivery has undoubtedly improved and become more precise since.   It just makes the claims we hear here on occasion that RP is terrible, and RT wonderful and event-free seem all the more ridiculous.  I wish it were not so, and that all modalites worked well and without side-effects.  I wish RT were side-effect free.  Such is not our world.

Georges Calvez
Posts: 297
Joined: Sep 2018

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_Salvag...

Best wishes,

Georges

Steve1961
Posts: 250
Joined: Dec 2017

the more I hear about all this the more upset I get .i swear if I didn’t believe in karma I would seek a lawyer  for malpractice .YES not informing a patient of all the risks and side effects involved in a treatment is a case for malpractice.if I was informed about all these risks before hand by a certified DOCTOR if I was given the brochure about what to expect defore trestbtmrnt and not after i started there’s no way I would have done this ...but I believe in karma so hopefully if the C is gone then so be it that’s the bottom line 

Georges Calvez
Posts: 297
Joined: Sep 2018

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

Steve1961
Posts: 250
Joined: Dec 2017

well here in the states it’s different ...after I met with a surgeon st UCSF his scheduler came in immediately gave us a brochure about what to expect 28 pages ,....I didn’t think to ask the radiologist for the brochure...I met him twice ...SOB ...I was given the brochure after I started ..THAT WASNT RIGHT ....am I am upset still very upset 

Georges Calvez
Posts: 297
Joined: Sep 2018

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

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