Finished 28 Proton Therapies

Posted by saxman911 @saxman911, Nov 12, 2023

Notice that ejaculation was very painful but after 3 weeks every thing started to flow - prostate discomfort faded again-maybe I got lucky. Getting my 1st PSA ON Dec 11th 2023
I only had 1 core with a Gleason 7 - my doctors told me prior to treatment most likely I nipped it in the bud.

Alan.

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it is extremely important to fill up your bladder before you lay down on the table for pro beam therapy you need to respect the Hydro gel spacer that's giving you ultimate protection.
The technicians before they start the radiation should always look at your bladder and of course your colon to make sure nothing is in the way of the beam for efficiency and your bladder is protected with a lot of water in the capacity. get to know your technicians this is very important

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@marlow2

Jim volunteered to do a trial where they fill up his bladder before doing the proton beam treatment. He'll probably have to go before, during and after.

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I did the five treatments at Mayo. They have you empty your bladder then drink a bottle of water before your treatment. With the five treatments you also get a rectal balloon to keep your prostate from moving while under the beam. After the first treatment and I knew what was going to happen I always asked the technicians "Ok which one of you drew the short straw today"? Holding a full bladder was the hardest part but five treatments was a piece of cake. I felt guilty ringing the bell. My 3 month and 9 month PSA's were undetectable. Good luck Jim.

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@marlow2

Jim volunteered to do a trial where they fill up his bladder before doing the proton beam treatment. He'll probably have to go before, during and after.

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@marlow2
This is standard procedure at UFPTI. When you do simulation (this procedure sets up a specialized bed for each patient and the parameters techs will use during actual treatments) e there they have you drink water 30 minutes prior to procedure. Then do low dose xray to monitor your bladder position with water and adjust drinking more up or down.

This is done to help move bladder away from prostrate and lesson the amount of radiation that bladder receives. They also look at Space/Oar to see it has moved the rectum down and away. If not they will use a baloon to do that before procedures.

Everyone is different and how they absorb water and time needed to do it, along with size of bladder ect. My plan revealed I needed to drink 12 oz of water 30 minutes prior to treatments.

Thus I would urinate prior to drinking the water and after treatment urinate again regardless of urged to do so as had a 45 minute drive home. This work out for me without any issues with urnination urges from drinking all the water and the increases in urnination and urges when doing radiation treatments.

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everybody has to find their sweet spot when it comes to drinking.

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If you have Proton therapy first, and later in life you experience recurrence, what kind of treatments will be still available to you? Can you still do surgery, or go back to do Proton therapy again?

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@frank1956

If you have Proton therapy first, and later in life you experience recurrence, what kind of treatments will be still available to you? Can you still do surgery, or go back to do Proton therapy again?

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@frank1956
I had 30 rounds of proton radiation at UFPTI. I was told by May Clinic Jacksonville at a Prostrate Seminar that most urologists do not want to do surgeries after radiation treatments. If makes doing the surgery very difficult.

The commentator did say it can be done but only a few will do it.

Hope this helps and this came from Mayo Jacksonville Prostrate Seminar and not my personal
opinion. When and if you have recurrence your urologist, radiologist/oncologist would be best to asked about what treatments for you. I believe it would be based again of degree of cancer (risk levels) and where and how much it has spread outside of prostrate or still in the prostrate only.

Just know that there are still many treatments that can be done outside of sugery.

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@jc76

@frank1956
I had 30 rounds of proton radiation at UFPTI. I was told by May Clinic Jacksonville at a Prostrate Seminar that most urologists do not want to do surgeries after radiation treatments. If makes doing the surgery very difficult.

The commentator did say it can be done but only a few will do it.

Hope this helps and this came from Mayo Jacksonville Prostrate Seminar and not my personal
opinion. When and if you have recurrence your urologist, radiologist/oncologist would be best to asked about what treatments for you. I believe it would be based again of degree of cancer (risk levels) and where and how much it has spread outside of prostrate or still in the prostrate only.

Just know that there are still many treatments that can be done outside of sugery.

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jc76

Thanks for the reply. I see some people underwent 30, 40 rounds of Proton treatment. Some only went with 5 rounds of treatment. Is this by choice or decided by their Radiation Oncologist in Cancer center according to their level of PCa?

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@frank1956

jc76

Thanks for the reply. I see some people underwent 30, 40 rounds of Proton treatment. Some only went with 5 rounds of treatment. Is this by choice or decided by their Radiation Oncologist in Cancer center according to their level of PCa?

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you're oncologist makes that decision-, do not compare your projected treatments to other patients - you medical status is solely yours and supposedly he knows what's best so you do not have to repeat the proton beam therapy a second time if you have a reoccurrence.

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@frank1956

jc76

Thanks for the reply. I see some people underwent 30, 40 rounds of Proton treatment. Some only went with 5 rounds of treatment. Is this by choice or decided by their Radiation Oncologist in Cancer center according to their level of PCa?

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Depending on where you go the radiologist/oncologist will decide and possible offer you different options. There are some oncologist/radiologist that prefer the longer doses over shorter ones based on their experience with side affects.

Some will prefer shorter citing both have equal cure rates. So it can be your choice if you are given options to do them. What I have seen is major providers will give options for treatments. I know UFPTI (My particular oncologist/radiologist) does not like to do the shorter treatments. He cited some increase in side affects which I would expect due to high dose. This opinion and comment is not just from him but my PCP at Mayo said his research showed the same thing.

I thing the biggest benefit of the 5 dose versus longer treatments is that it far easier to manage and deal with (over quick). That might encourage those hesitant to do it versus not wanting to have to deal with 6 weeks of treatments or longer. It comes down though if you have options make them in what is best for you not what is best for others. Do research, get second opinions and then pick what is best for you.

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@jc76

@frank1956
I had 30 rounds of proton radiation at UFPTI. I was told by May Clinic Jacksonville at a Prostrate Seminar that most urologists do not want to do surgeries after radiation treatments. If makes doing the surgery very difficult.

The commentator did say it can be done but only a few will do it.

Hope this helps and this came from Mayo Jacksonville Prostrate Seminar and not my personal
opinion. When and if you have recurrence your urologist, radiologist/oncologist would be best to asked about what treatments for you. I believe it would be based again of degree of cancer (risk levels) and where and how much it has spread outside of prostrate or still in the prostrate only.

Just know that there are still many treatments that can be done outside of sugery.

Jump to this post

Data from Dr. Kwon (of Mayo Clinic) indicate that if there is recurrence following initial radiation, 45% of the time the recurrence is not in the prostate - it’s elsewhere in the body, so surgery to remove the prostate isn’t even a consideration.

If recurrence following radiation is in the prostate, there are many other options, other than a salvage prostatectomy — all depending on the nature of the recurrence. I personally know 2 guys who have had repeat SBRT because recurrence in the prostate was just a single spot.

Surgery following radiation is a last and final option only if there are no other options available.

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