New Radiation Side Effect- Rectal Bleeding: TMI Edition
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- Опубліковано 29 вер 2024
- To my dismay I recently developed a new radiation side effect- rectal bleeding. Radiation Proctitis can show up years after prostate cancer radiation treatment (in my case two years) and I had previously thought it was a rare side effect. Apparently it is pretty common! Doctors have treatment options if it gets severe. ** One Year Follow-Up Video- • Radiation Proctitis Up...
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Great video! I am debating getting my prostate radiated - depending on what this next PSMA/PeT scan says - and found your video very helpful. Thank you and good luck to you sir!
Really useful video. I was diagnosed with locally advanced prostate cancer about 2 years ago and had a course or 4 weeks of radiotherapy about 18 months ago. PSA values dropped from 13 to about 0.02 so "brilliant" I thought but about 6 months ago the bleeding started. The amounts of blood were small but enough to be worrying and I was also getting pain in the area. When I reported the problem to the hospital I was given a colonoscopy and radiation proctitis was diagnosed. I was given a course of steroids in foam form to be squirted where the sun don't shine. This didn't really work so I'm trying to get the hospital to follow up on it but this is the British National Health Service and things move very slowly..
What I lacked was any advice on diet and changes to behaviour which might help so it was really useful to hear the advice that you got from your hospital.
So thank you very much fot the very clear account of your experiences. I hope your health continues to improve and I'd really like to hear more aut your progress.
I wish you all the BEST.
Parris did you have the SpaceOre installed?
Same thing I was wondering. Im supposed to hae space oar and then the radiation. All of it is so not good.
Parris, I had proton treatment ended Nov. 22 2022 for prostate cancer at ProCure in Somerset NJ. Thank you for these videos, you’re great. Did you have Space OAR before your radiation? I did and am hoping I’m in some smaller percentage than what (half/10 percent/less than 5 percent ????) who have rectal issues as you described. (Otherwise I have been pretty side effect negative, so far at least…). John
BTW, my son and daughter in law live in Austin, may be your neighbors…
John, I am considering Proton treatment for prostate cancer at ProCure at Somerset NJ. Did you have to take hormone injections such as Lupron? I was just wondering what the side effects were and if they are managable. Would you recommend Proton Therapy over surgery?
Hi George, I had Gleason 3+4=7, low intermediate. So no, I didn’t have to do hormone treatment to shrink the tumor/lesion a bit before starting radiation. I met a couple guys who did have to do hormones first and it was not fun for them. With respect to my proton therapy treatment, hypofractionated 28 days, after the first week I had very painful urination - my Dr. at ProCure, Henry Tsai, proscribed Flomax, which fixed it fine in a couple days. Since finishing proton treatments, so far, no leaking, no rectal issues, minimal sex issues. I say go for it.
Thanks John! I asked about the SpaceOAR gel and was told it wasn't necessary with the pencil-beam precise radiation targeting. But now I am wishing I had pushed harder for it even if it only made a little bit of difference. Then again, with all the area they had to irradiate it may have been unavoidable that there would be collateral damage. It is good that you had it so at least you can know you did everything possible to avoid the side effects.
APC argon plasma therapy is good for radiation proctitis or not ....not having any improvement
parristx,, are your sexual relations being affected, and good luck with the rectal bleeding, hoping that heals in time.
Thank you so much for your brilliant video ....I have just finished a complete course of radio therapy for Prostate Cancer .and have been thinking to myself that it was not so bad . I will keep a watch on any changes that may suddenly occur . At least I'll be prepared .
many thanks for your presentation ...I wish you well for the future .......Giovanni ...UK
Thanks for "heads Up" Sir.
I think it is a good topic to discuss with your radiation oncologist so you have all the information to make the best decision.
I have a question. Did you have the option of having space oar hydrogel or a similar procedure which is supposed to distance the rectum from the prostate? Just wondering.
It wasn't offered to me. I had read about it and asked about having that but was told that the radiation was delivered very precisely and it wasn't needed. I do wish I had pushed more to have that put in having the radiation treatment, though I am not sure how much it would have helped in my case as the cancer was extracapsular and they likely needed to irradiate a larger margin around the prostate.
Best of luck going forward! 🙂👍🙏
Thanks Nat!
Update ,on my PROSTATE KANSUR, spelling due to triggers MY STRESS❤anyhoo: # BLeeding in toilet, T😮😮K,took me ronny m,to the E.R.immediately,then @2 months of RADiation,THEN😮Ongoing, diarrhea,CONstipation,SLEEPlessness😮ANDhaving FLU like symptoms 😮EVERY😮FluFFin' DAYyy😮I'm DIZzZz,ancious,QuEaZzZy,😮A MessSS, 😮BUT without RADiation,etc, I AM DEAD!G😮D/ GooD Luck❤to all CANnCcEeRr Patients❤fRoM 🇨🇦 💙 ❤️ cAnAdA 🎉😮
I am considering proton treatment in Japan (that is where I live) and the brochure clearly states 2% chance of rectal bleeding but interestingly. the research papers out of the States seem to indicate a figure closer to 5.
Also, the doctor is not recommending spaceoar gel explicitly saying that the 1% chance of complications inserting the gel essentially offsetting the 2% risk of GI (rectal bleeding).
I am right on the fence. I feel that in principle at least, spaceoar takes the risk down to close to zero. That’s a number I can live with!
I guess I would want to know what the potential side effects of the gel are so I could compare that to the ongoing "unannounced" rectal bleeding. If the gel side effects are less, or better yet- temporary, those are factors to consider too. Wishing you all the best in your upcoming treatment.
@@parristx Don't listen to that BS. Why wouldn't you get the gel for protection? I have a Gleason 9 score. Went to the radiologist and she said the same thing - small chance etc. She is no longer my doctor of choice. Check out PCRI for very info on this matter.
Thanks for sharing Paris. I'm sure if you had had someone like yourself before you started your journey, it would have helped. Take care and hopefully it will resolve itself. At least you don't have the cramps that go along with having a period :) lol
Thanks! I have been reading about a less invasive potential treatment- hyperbaric oxygen therapy. I am not sure if my doctor will prescribe that or if the insurance will pay for it (several thousand dollars for a course of treatment) but I am going to pursue it. And I am thankful for not having the cramps to go along with it. That would really knock me out of hiking or climbing. Though I know women continue being active even with the cramps- I wish I were that strong.
To use your word, 'undersold' is probably undersold. The medical profession have a lot to answer for. Thanks for your honesty. It's been really helpful to hear a patient's point of view.
Parris I think you should also contact your doctor. I love your sense of humor and it is amazing that you are exercising.
Did you watch his video? He is in contact w/his doctor
@@sunsetatshabooms4558 yes I did
Thanks Paula! I will see my medical oncologist next month for my next Lupron shot and will see if she thinks there is anything else I need to be doing.
❤Really very interesting dear gentleman, thank you for posting your experience sir❣️ How very brave of you to share these intimate details w strangers!! ❤😂I appreciate your quirky sense of humor about it all too!! You see, I'm a 61 year old mother of 7, grandma of 10❤diagnosed w/anal cancer over 2 years ago. Long story short, I mucked around tryingalternative less toxic cures until I nearly hemorrhaged to death 2 weeks ago & was admitted for blood transfusion. Though I continued to bleed & they did 3 urgent STAT radiation treatments on me bum and finally bleeding stopped. I'm now 2 weeks in to 6 weeks radiation and chemotherapy-both IV and by mouth. After the very first radiation my right leg swelled up badly, it's still bad. Had an ultrasound that ruled out blood clot-goodie. But I'm definitely being gaslit when I share that it has to be due to radiation (same day occurred) Drs both told me "No way that's related, it would be a first of its kind".....it's just a big coincidence😅!!😢😮
I'm a retired Director of Nurses, I really hate that they lie to me. I think nobody would take the poison road if we knew the entirety of truthful info about it. I'm so sorry you suffered so long after cancer gone. In my mind, I am only putting up with this for 4 more weeks to annihilate anal cancer then I want to live my life in peace without bleeding or pain.
It sounds like you are having a really hard time of it. I hope the rest of your treatments go more smoothly. And I understand that correlation doesn't imply causation but you are right to wonder when right after you have a treatment something happens to you that has never happened before. I think if it is not in the "playbook" for a treatment doctors aren't even willing to consider it. But of course there must have been a first time for every side effect that does get listed. Wishing you all the best.
It happens in women too,that have had brackey therapy, I know,,I am dealing with the same thing,,needed 2 bags of blood because of it over 5 months. Had lazer,,using sulfracate enimas 4 times a day. Thinking I need another treatment of lazer,,mine is pretty bad.
The radiologist here in canada didnt care I was bleeding for 5 months,,he knew what it was and just shrugged his shoulders everytime he seen me! It infuriates me that doctors dont want to say brackey radiation does this. He just let me suffer till I went by energency to a different hospital and was diagnosed through a colonoscopy! Canada has problems!
Sorry to hear you are having such a hard time of it. And two bags of blood to make up for the bleeding- that sound serious. I wondered if some of my long-term anemia was caused by that blood loss but since I have finished my Lupron treatment my anemia is improving so I am going to blame the Lupron for it. And is hyperbaric oxygen therapy (HBOT) a treatment that might work for you? I finally got my approval to receive HBOT and will start next week. Fingers crossed the bleeding will finally stop.
@@parristx I live in Canada,,there is no help for us after they hurt us through cancer treatments. Our closest hyper baric would be in toronto 2 hrs away. Even so health Canada wouldnt pay and would be so expensive and I read you need about 30 treatments.
Canada's " free" healthcare is very bad,,our hospitals are being held together with duct tape.
The cancer clinic will never admit its from the radiation! They kept that from me and they knew what it was. Its so hard to trust them now.
I have 2 yrs of immunotherapy to do, which has kept me cancer free, they think. They dont like to tell us,,cancer free here till 5 yrs are up.
Our system is very corrupt sadly.
So we just press forward,,making the most of every day in faith🫠
WHY DIDNT YOU REQUEST SPACE OAR OR GEL FOR PROTECTION?
Sorry to hear you are having more problems. I have had occasional bleeding similar to you describe but haven’t had radiation therapy yet (just at start of hormone treatment). I wonder if in my case the tumour could be causing this…?
I hope this clears up for you Paris, it can be quite frightening when something like this happens.
Take care and thanks for posting!
Thanks! Rectal bleeding can have several causes- and after the prostate radiation treatment you can add one more potential cause. I think I am seeing a pattern with it occurring after strenuous exercise (especially lifting). I can live without being a weightlifter 🤣 but I really hope it won't interfere with my hiking and climbing. Good luck with your treatments! 💪💪
Thanks for confirming that strenuous activity can bring on an episode of proctitis. I had ebert radiation + high dose brachy 3 years ago and 2 years ago proctitis started and I bleed approx every 3months. Due to blood loss and the radiation my haemoglobin of 12.5 is just below the thresho!d. I take iron tablets. But I still feel wiped after each episode. It seems like some parts of the gut wall have become fragile. Abrasive foods in the gut can tear it. So no nuts, chickpeas or insoluble fibre. Salads are risky. Steamed veg is best. Meat is ok but I believe that red meat contributed to me getting prostate cancer in the first place. Well cooked split red lentils are ok. Swimming is good gentler exercise for the fragile gut. On the plus side viagra not reqd. Still got function there. Ykwim
Same exact thing happened to me about a year + after the radiation. Your videos are a great help for those of us just now finding out that we are not out of the woods with radiation therapy side effects.
It love your story but it saddens me that you're going through so much suffering and I believe it's all due to the hormone treatments. The chemotherapy is killing you make you sick. This is just my opinion. You are a very brave man. I am leaning towards surgery..... listening to your story.
Everyone who gets diagnosed with cancer has to make their own decision on the best treatment for them. I know if I had gone the surgery route I would have been doing radiation as well- to get anything the surgery missed and they would have wanted me on Lupron as well. So sometimes surgery may be the end of it- but depending on how the surgery goes it may just be the beginning. Both chemo and radiation are said to be more effective when done in conjunction with Lupron or other androgen deprivation therapy drugs. So I can see it being worthwhile for a year or so. But when it gets to be years with no testosterone (and by extension- no estrogen) that is when the harm really starts to be felt. Good luck in making your decision.
@parristx Thank you for your reply. I am waiting for the proton radiation.People to call me for an appointment. I just sent them my decipher score papers. Now I've changed my mind and pursuing Proton therapy. We will have to discuss the.... ADT.
@parristx I just talked to a person who had radiation for his prostate ten years ago. He didn't take any formal treatments. None. His p s a is point four. So that's something to think about.I guess right. No hormone treatments. Another person just got finished with his radiation plus hormone shots. He said it was walk in the park. Only Hot flashes at night. So, So freaking confusing!! Very STRESSED.
Hormone
Treatments. I meant to say. Not formal treatments. My bad. Forgot to read my reply before I pushed SEND!
Your doctor didn't tell you about the Sucralfate enema? That's what I'm taken for my rectul bleeding.
No, I hadn't heard of it. But looking it up I see it is a common treatment in Europe. And it makes a lot of sense that it would work. I will see if I can get a prescription for it to give it a try. Thanks!
Okay but how did you fix your situation??
Apparently radiation proctitis is incurable(according to my doctor) .
I think a quarter cup of extra virgin olive oil in the morning and OMAD (one meal a day) helps. Give your system time to recover.
It works for me I think.
Thank you for sharing your story, my prayers are with you.I have this same thing and many more problems. I should never have done radiotherapy.
Thanks Serena. I am sorry to hear you are dealing with radiation side-effects, too. I just finished two months of Hyperbaric Oxygen Treatment and have seen really good results. I received the treatment at the wound care center of my local hospital.
Very interesting. You have a way about making any story you tell compelling. thanks
That's high praise for me- thank you!
Thanks for posting
Thank you.
Did the doctor use spaceoar when giving radiation?
I had read about SpaceOAR and asked if I could have that. I was told with their "high precision" proton beam radiation that it wasn't necessary. So I didn't have it. Now I am working on getting approval for Hyperbaric Oxygen Therapy for the radiation proctitis that I have had for over a year. Here is my update video- ua-cam.com/video/SUnD7UApf-U/v-deo.html
Wish I can talk to you!
Hey Parris, Checking on this issue. How are things? Hoping things are doing better than they were 9 Months ago when you posted this video.
Thanks for checking in. Not much progress, I am sad to report. My hope is that now that as I have finished my three years of Lupron and my testosterone can start getting back to normal that the wound causing that rectal bleeding will finally heal up. I only learned recently that testosterone is a key factor in wound healing. Maybe my undetectable level of testosterone the past three years has prevented the radiation damage in the rectum from healing. Here's to hoping! 🤞🤞
Some men have to take tetestorone after they have completed treatments for the cancer. Source Prostate Cancer Research Institute.
@@parristxIn the world would you take any hormone treatment. That is what making you bleeding. The hormone treatment takes Away
The Testosterone. So why would you want to take something that your body needs away. I don't believe it at all. I think it's a big money thing myself. Just saying my opinion only. Your story has convinced me to take the surgery route. Wear a diaper for a while and be done with this hormone treatment baloney.
Did you have a SpaceOar gel done before Proton Therapy? Or did the do the inflated “balloon” during proton therapy? How many days or sessions did you have for Proton therapy ?
Just read comments and your replies. Sounds like you did not have a SpaceOar (or equivalent) procedure before Proton Therapy. I am in the middle of 20 sessions of Proton Therapy at Loma Linda in Southern California and am glad I had SpaceOar, even though that short procedure, for me, was much more “uncomfortable” than having a biopsy. They also insert an inflatable balloon up my “backside” just before every proton therapy, which I believe is also to help protect and prevent too much exposure to the rectum, and the bladder (?). Not painful and only a bit uncomfortable/awkward. Having too have a near full bladder for each session can be more uncomfortable. So far, after only 4 of 20 sessions I am happy with choice of Proton Therapy, but may not know if I made the best choice for several months or even a few years?
One last point, they are recommending hormone therapy for 6 months +/- and I can have this in one months increments instead of a six month shot. I can deny this hormone therapy and my doctor does not seem overly concerned if I do. I am leaning heavily towards refusing hormone therapy. I would like to hear from anyone that had proton therapy, for prostate CA, who did not have hormone therapy. By the way my Gleason score was a 7, 4+3 with a PSMA pet scan showing the cancer was encapsulated or confined to the prostate gland and PSA has neveR gotten over 10. I am 60, in good physical shape, healthy weight etc and no other medical conditions…… other than I just had aortic repair 8 weeks ago for a 5cm aneurysm 😮
Through seventy and have basically the same numbers as you. I am debating on surgery or radiation. But in any case , I will refuse all formal treatments. There is recent studies saying that you do not need hormone treatments that cancer does not feed off of Testosterone. In fact, some studies say with low testosterone It's a worse case scenario for the cancer to grow. Testosterone is a healthy thing in my opinion and should not be taken from you.