No, it did not take that long. It was about a month before I went back to the coffee. I did start getting drips at day 310 after radiation and I was leaving a fifty-cent piece size spot in my sheets at night. I used shields and a night pad on my penis for a little over three months. I saw my urologist at Mayo, and he said do Kegels and I did, and it stopped all leaks and everything is great. I would not at this point in time even know I even had radiation done. If I had done some Kegels from the beginning, I probably would not of had any problems at all.
In my own case, I have permanent damage to my bladder from SBRT to my prostate (or I assume so at this point, 3 years later). Most people don't get that, but sometimes you just draw the short straw. Still, I am stage 4, and wanted to hit it hard, so no regrets.
When they say don't drink caffeine believe them. I had the SBRT 5 proton treatment at Mayo Phoenix. I had my coffee waiting for me in the car for the drive home of about 35 minutes after my first session. Drank my mug and finished the pot when I got home no problem. Second treatment two days later and the same thing. Third treatment on Friday two days after that and my bladder said to me "YOU IDIOT". peeing every 15 minutes for hours and hours till the coffee wore off. Last two treatments the next week were WATER ONLY. I didn't have my morning coffee till my bladder and prostate calmed down. Two years later no problem drinking the whole pot and no bowel trouble, but I did have the SpaceOar gel.
When they say don't drink caffeine believe them. I had the SBRT 5 proton treatment at Mayo Phoenix. I had my coffee waiting for me in the car for the drive home of about 35 minutes after my first session. Drank my mug and finished the pot when I got home no problem. Second treatment two days later and the same thing. Third treatment on Friday two days after that and my bladder said to me "YOU IDIOT". peeing every 15 minutes for hours and hours till the coffee wore off. Last two treatments the next week were WATER ONLY. I didn't have my morning coffee till my bladder and prostate calmed down. Two years later no problem drinking the whole pot and no bowel trouble, but I did have the SpaceOar gel.
gshep . You may wish to aquaint yourself with the Phase 3 PACE " B " Trial and the more recent TOFFEE META ANALYSIS - European Association Of Urology .
The latter studies the effectiveness of 2 Fractions of SBRT vs 5 Fractions of SBRT.
I take Turkey Tail and Lion's Mane mushroom tea daily. There is evidence that it reduces the likelihood of
metastasis and may also reduce the size of the tumor. (One of these days I will start a discussion on Turkey Tail mushrooms.)
My advice for radiation is learn where all the bathrooms are that you can access on your drive home. Also carry a portable urinal (or wide mouthed jar) with you. There were a number of times when I used the bathroom after radiation and then needed another pit stop just 10 minutes later! (I had a 45 minute drive home).
I was not required to take any enemas for my 20 sessions of prostate SBRT. There really wasn't much I had to do, except arrive with a full bladder (there was a handout with foods I could limit if I experienced discomfort, which I didn't at the time).
North, Sloan Kettering pounded this into our heads every day. Did you eat this? Did you eat that? Did you move your bowels today? It was a very stressful time; all I wanted to hear was that machine turn ON and start its arc around my body. That meant I did everything right that day.
Phil
Vircet, I can’t believe you did not get that list of foods to avoid / it is KEY for successful SBRT!
Also, if there’s anything not on that list, but in your experience causes gas, bloating or burping, don’t eat it.
I ate nothing at all from dinner at 7PM to my treatments at 2PM the next day - and I still had some gas or stool in the wrong places.
Also, don’t SLURP any liquids! Seems like a small thing, but a dish of hot broth or cups of coffee can turn into intestinal gas and move your prostate to the wrong spot.
Phil
If you are undergoing SBRT (Stereotactic Body Radiation Therapy) for prostate cancer, certain dietary adjustments can help minimize side effects and improve comfort. Foods to avoid include:
• High-fiber foods: Whole grains, nuts, seeds, raw vegetables, and dried fruits, as they can cause bowel irritation and gas.
• Fatty and fried foods: Processed meats (sausage, bacon), fast food, and high-fat dairy like cream and butter.
• Gassy foods: Beans, lentils, broccoli, cauliflower, cabbage, and carbonated drinks.
• Spicy and acidic foods: Hot peppers, chili powder, citrus fruits, and tomato-based products.
• Caffeinated or alcoholic beverages: These can irritate the bladder and bowel.
• Raw or undercooked foods: To reduce the risk of foodborne illness due to a weakened immune system.
Stick to a low-fiber diet with soft, bland foods and stay hydrated to manage side effects effectively. Always consult your healthcare provider for personalized guidance.
Not sure I understand their rationale on the pre radiation BM.
I took enemas 4 or 5 during my 25 sessions - one even during since I had a gas bubble that wouldn’t move.
In fact, they make you take an enema for simulation set-up so I don’t get it.
If you’re one of those lucky guys who can have a second BM at will, I don’t see any harm in that either. I would advise further clarification from your team. Best
Phil
I was not required to take any enemas for my 20 sessions of prostate SBRT. There really wasn't much I had to do, except arrive with a full bladder (there was a handout with foods I could limit if I experienced discomfort, which I didn't at the time).
Thanks for this info @heavyphil I am surprised that I got very short list. I was asked to stop my herbal drink. No caffeine (coffee, tea) and no carbonated drinks. I found "unusual" that I need to eat many small meals (read: not my usual full breakfast, lunch, dinner that aren't small meals). Also I told my care team that I regularly move stool in the morning, and I planned to move a second time during the day an hour before SBRT. I was advised to not do the latter.
Not sure I understand their rationale on the pre radiation BM.
I took enemas 4 or 5 during my 25 sessions - one even during since I had a gas bubble that wouldn’t move.
In fact, they make you take an enema for simulation set-up so I don’t get it.
If you’re one of those lucky guys who can have a second BM at will, I don’t see any harm in that either. I would advise further clarification from your team. Best
Phil
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No, it did not take that long. It was about a month before I went back to the coffee. I did start getting drips at day 310 after radiation and I was leaving a fifty-cent piece size spot in my sheets at night. I used shields and a night pad on my penis for a little over three months. I saw my urologist at Mayo, and he said do Kegels and I did, and it stopped all leaks and everything is great. I would not at this point in time even know I even had radiation done. If I had done some Kegels from the beginning, I probably would not of had any problems at all.
In my own case, I have permanent damage to my bladder from SBRT to my prostate (or I assume so at this point, 3 years later). Most people don't get that, but sometimes you just draw the short straw. Still, I am stage 4, and wanted to hit it hard, so no regrets.
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2 ReactionsIt took 2 years for your bladder & prostate to calm down ?
When they say don't drink caffeine believe them. I had the SBRT 5 proton treatment at Mayo Phoenix. I had my coffee waiting for me in the car for the drive home of about 35 minutes after my first session. Drank my mug and finished the pot when I got home no problem. Second treatment two days later and the same thing. Third treatment on Friday two days after that and my bladder said to me "YOU IDIOT". peeing every 15 minutes for hours and hours till the coffee wore off. Last two treatments the next week were WATER ONLY. I didn't have my morning coffee till my bladder and prostate calmed down. Two years later no problem drinking the whole pot and no bowel trouble, but I did have the SpaceOar gel.
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Helpful -
Hug
3 Reactionsgshep . You may wish to aquaint yourself with the Phase 3 PACE " B " Trial and the more recent TOFFEE META ANALYSIS - European Association Of Urology .
The latter studies the effectiveness of 2 Fractions of SBRT vs 5 Fractions of SBRT.
I take Turkey Tail and Lion's Mane mushroom tea daily. There is evidence that it reduces the likelihood of
metastasis and may also reduce the size of the tumor. (One of these days I will start a discussion on Turkey Tail mushrooms.)
My advice for radiation is learn where all the bathrooms are that you can access on your drive home. Also carry a portable urinal (or wide mouthed jar) with you. There were a number of times when I used the bathroom after radiation and then needed another pit stop just 10 minutes later! (I had a 45 minute drive home).
-
Like -
Helpful -
Hug
1 ReactionNorth, Sloan Kettering pounded this into our heads every day. Did you eat this? Did you eat that? Did you move your bowels today? It was a very stressful time; all I wanted to hear was that machine turn ON and start its arc around my body. That meant I did everything right that day.
Phil
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1 ReactionHere is a list of food issues
If you are undergoing SBRT (Stereotactic Body Radiation Therapy) for prostate cancer, certain dietary adjustments can help minimize side effects and improve comfort. Foods to avoid include:
• High-fiber foods: Whole grains, nuts, seeds, raw vegetables, and dried fruits, as they can cause bowel irritation and gas.
• Fatty and fried foods: Processed meats (sausage, bacon), fast food, and high-fat dairy like cream and butter.
• Gassy foods: Beans, lentils, broccoli, cauliflower, cabbage, and carbonated drinks.
• Spicy and acidic foods: Hot peppers, chili powder, citrus fruits, and tomato-based products.
• Caffeinated or alcoholic beverages: These can irritate the bladder and bowel.
• Raw or undercooked foods: To reduce the risk of foodborne illness due to a weakened immune system.
Stick to a low-fiber diet with soft, bland foods and stay hydrated to manage side effects effectively. Always consult your healthcare provider for personalized guidance.
-
Like -
Helpful -
Hug
3 ReactionsI was not required to take any enemas for my 20 sessions of prostate SBRT. There really wasn't much I had to do, except arrive with a full bladder (there was a handout with foods I could limit if I experienced discomfort, which I didn't at the time).
-
Like -
Helpful -
Hug
1 ReactionNot sure I understand their rationale on the pre radiation BM.
I took enemas 4 or 5 during my 25 sessions - one even during since I had a gas bubble that wouldn’t move.
In fact, they make you take an enema for simulation set-up so I don’t get it.
If you’re one of those lucky guys who can have a second BM at will, I don’t see any harm in that either. I would advise further clarification from your team. Best
Phil