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Upcoming Radiation: Any advice about process, prep, time commitment?

Posted by bwparker @bwparker, May 1 10:06am

I’m looking at an upcoming radiation treatment. Hopefully it will be the proton beam type radiation, which I’ve heard is less invasive with fewer side effects. I’m 67, fairly good health, and my cancer is small and in early stages. Any advice for what I’m heading into? The process, prep, time commitment, etc? Success rates? Probable side effects? Limitations or restrictions during and after? Thank you.

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crawdog | @crawdog | May 8 10:33am

After undergoing radiation treatment and taking Orgovyx x 1 per day my Mono#kul and Imm granulocytes blood tests were high while my RBC, Hemoglobin and Hematocrit levels were low in my CBC tests

Prior to the radiation and Orgovyx treatment all these levels were fine but shifted when I started the treatments .

I experience some minor fatigue and hot flashes and shortness of breath with exertion.

Will these levels stabilize over time or could there be another underlying concern I should be discussing with my doctor(s)

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bwparker | @bwparker | May 8 10:42am
In reply to @bens1 "@bwparker I looked at all my removal and radiation choices. I narrowed my choice down to..." + (show)
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@bwparker
I looked at all my removal and radiation choices. I narrowed my choice down to Proton or the Mridian radiation machine because it was one of two machines in the marketplace (The Elekta Unity being the other) that had a built in MRI so everything the doctor treated was in real time so the margins around the Prostate that exposed healthy tissue were less (2 mm vs 3-5 mm with most other radiation machines including Proton). That meant fewer side effects and better quality of life.

I was treated with 5 doses and finished in February of 2023. I was 69 with 3+4 Gleason, low Decipher and cancer was contained in my prostate. Get pre-prescribed for Flomax. After the third treatment, I had greater urine restriction which Flomax took care of overnight. Be aware that they will be checking the amount of liquid in your bladder as they need to balance the help you get from it being filled and away from your prostate and your comfort level. They can see that in real time as well because of the bult in MRI. Have a plastic hospital type pee bottle in your car as a temporary side effect for me was having to get to the bathroom faster for a while and I was happy to have it. Do get Spaceoar or one of the gels inserted to try and avoid any rectum damage.

Also, ask questions about why they choose a specific machine or treatment. Every institution has its own protocols and process for their choice and given that most choices, they say have equal outcomes, demand for a doctor or a specific type of machine can impact whether you get your choice or not.

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@bens1 Thank you, this is very helpful and lines up with my treatment plan. I start the process for 5 radiation treatments in June. Glad you are doing well. Thanks again for the advice.

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Jeff Marchi | @jeffmarc | May 8 11:47am
In reply to @crawdog "After undergoing radiation treatment and taking Orgovyx x 1 per day my Mono#kul and Imm granulocytes..." + (show)
Profile picture for crawdog @crawdog

After undergoing radiation treatment and taking Orgovyx x 1 per day my Mono#kul and Imm granulocytes blood tests were high while my RBC, Hemoglobin and Hematocrit levels were low in my CBC tests

Prior to the radiation and Orgovyx treatment all these levels were fine but shifted when I started the treatments .

I experience some minor fatigue and hot flashes and shortness of breath with exertion.

Will these levels stabilize over time or could there be another underlying concern I should be discussing with my doctor(s)

Jump to this post

@crawdog
Having the low RBC, Hemoglobin And hematocrit are not at all unusual, you went on ADT. I’ve been on it eight years and my blood count for all three of those things have always been low. They’re not low enough to cause anemia.

Your fatigue could very well be due to the Orgovyx (ADT) Alone. It is very common for people to feel minor fatigue have hot flashes, and shortness of breath. They are just normal side effects of ADT. Believe it or not exercise can frequently help with a minor fatigue a lot. Running on a track or even the sidewalk, and doing weight exercises can all help with The other side effects of ADT, and help with the fatigue. You may notice you’re getting a belly and your muscles will definitely get weaker unless you regularly do weight training exercises.

I had terrible hot flashes on ADT at first. Still get them eight years later while I’m still on it. I’ll get from 2 to 8. Hot flashes a day. Nowadays, they are mild, Usually. Had one last night where I had to blot the sweat off my forehead with a towel a few times to stop it from dripping in my eyes. Happened while I was brushing my teeth and an electric toothbrush, a real pain.

If you have severe hot flashes, there are drugs that can help, Come back and ask For help if they are really a major problem. I have found many Solutions.

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crawdog | @crawdog | May 9 7:19am
In reply to @jeffmarc "@crawdog Having the low RBC, Hemoglobin And hematocrit are not at all unusual, you went on..." + (show)
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@crawdog
Having the low RBC, Hemoglobin And hematocrit are not at all unusual, you went on ADT. I’ve been on it eight years and my blood count for all three of those things have always been low. They’re not low enough to cause anemia.

Your fatigue could very well be due to the Orgovyx (ADT) Alone. It is very common for people to feel minor fatigue have hot flashes, and shortness of breath. They are just normal side effects of ADT. Believe it or not exercise can frequently help with a minor fatigue a lot. Running on a track or even the sidewalk, and doing weight exercises can all help with The other side effects of ADT, and help with the fatigue. You may notice you’re getting a belly and your muscles will definitely get weaker unless you regularly do weight training exercises.

I had terrible hot flashes on ADT at first. Still get them eight years later while I’m still on it. I’ll get from 2 to 8. Hot flashes a day. Nowadays, they are mild, Usually. Had one last night where I had to blot the sweat off my forehead with a towel a few times to stop it from dripping in my eyes. Happened while I was brushing my teeth and an electric toothbrush, a real pain.

If you have severe hot flashes, there are drugs that can help, Come back and ask For help if they are really a major problem. I have found many Solutions.

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@jeffmarc Thanks for the info. I am starting my 2nd year of Orgovyx and will definitely try to get more exercise. The hot flashes have subsided to where I am only having about 5 per day, and they are short and so far quite mild.

Its awesome to be able to share info with other patients for more perspective. Thanks so much.

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Colleen Young, Connect Director | @colleenyoung | May 15 5:33pm
In reply to @bwparker "@bens1 Thank you, this is very helpful and lines up with my treatment plan. I start..." + (show)
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@bens1 Thank you, this is very helpful and lines up with my treatment plan. I start the process for 5 radiation treatments in June. Glad you are doing well. Thanks again for the advice.

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@bwparker, glad you have a treatment plan now. You might appreciate these related discussions:

- Starting radiation (SBRT): What potential side effects can I expect?https://connect.mayoclinic.org/discussion/sbrt-side-effects/
- After radiation: Any advice on next steps, what to expect next 12 mos? https://connect.mayoclinic.org/discussion/advice-on-post-radiation-treatment/

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Darin M. | @darinlm1 | 19 hours ago
In reply to @xahnegrey40 "if you are just having prostate radiated and you are doing a short does..either photon or..." + (show)
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if you are just having prostate radiated and you are doing a short does..either photon or proton will work fine...just make sure it is the newer equipment :

The best radiation machines for prostate cancer today focus on high-precision stereotactic body radiation therapy (SBRT), allowing for5 treatments instead of 40-plus. Top technologies include MRIdian MR-LINAC, CyberKnife, Varian Edge, and Varian Halcyon, which enable extreme targeting accuracy to minimize side effects on nearby healthy tissue.Top Radiation Technologies for Prostate CancerMRIdian MR-LINAC: Integrates MRI imaging with radiation, offering real-time, adaptive planning to track prostate motion during treatment.CyberKnife: A robotic, non-invasive system specialized in SBRT that delivers high-dose radiation in 5 sessions, reducing rectum and bladder exposure.Varian Edge & TrueBeam: Advanced linear accelerators that use enhanced image guidance and high-dose rates for fast, precise treatments.Varian Halcyon: A system designed for high efficiency and improved, precise dose delivery.Proton Therapy: Uses proton beams to target the tumor with superior precision compared to traditional X-rays.Key AdvancementsSBRT (Stereotactic Body Radiotherapy): Delivers highly focused radiation, making it possible to complete treatment in about 1-2 weeks (e.g., 5 sessions).

RECTAL SPACER prob a must with photon beam radiation

very important : drink plenty of water before each session ..empty bowels...

most people have minimal side effects such as some fatigue, urgent urination ( you drink 40 oz water before each session) and sometimes bowell issues - you will prob meet with radiation oncologist weekly to discuss how things are going.

it is prob the least troublesome of all treatments for most people...( I had 45..mostly no big deal except for travel time to and from and urgency to pee after wards.)

Good luck !

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I have been under the impression that MRI guided proton beam therapy for prostate cancer is the gold standard during treatment. Why then is Mayo telling me they will not be using MRI for my treatments next month?

Here is what they told me: For external beam (protons and photons) therapy planning, we routinely use both CT and MRI scans to plan treatment, because they provide the detailed information needed to plan the treatment accurately.

When delivering the radiation treatments, we do not have MRI guidance for either modality- protons or photons. Our image guidance for protons is done with x-ray. We have the ability to use CBCT guidance when doing treatments with photons.

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xahnegrey40 | @xahnegrey40 | 18 hours ago
In reply to @darinlm1 "I have been under the impression that MRI guided proton beam therapy for prostate cancer is..." + (show)
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I have been under the impression that MRI guided proton beam therapy for prostate cancer is the gold standard during treatment. Why then is Mayo telling me they will not be using MRI for my treatments next month?

Here is what they told me: For external beam (protons and photons) therapy planning, we routinely use both CT and MRI scans to plan treatment, because they provide the detailed information needed to plan the treatment accurately.

When delivering the radiation treatments, we do not have MRI guidance for either modality- protons or photons. Our image guidance for protons is done with x-ray. We have the ability to use CBCT guidance when doing treatments with photons.

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@darinlm1 X-ray guided radiation therapy (IGRT) and Intensity-Modulated Radiation Therapy (IMRT) are not competing technologies, but complementary approaches. IMRT shapes the precise dose of radiation to fit the tumor, while IGRT uses X-ray imaging during treatment to ensure the tumor is exactly in the targeted position.Intensity-Modulated Radiation Therapy (IMRT)What it is: An advanced, highly precise form of external radiation that uses computer-controlled X-ray accelerators to deliver customized radiation doses.How it works: The intensity of the radiation beam is varied—or modulated—to conform precisely to the three-dimensional shape of a tumor.The Benefit: It allows oncologists to deliver a highly lethal dose of radiation directly to the cancer while minimizing the exposure of surrounding healthy tissue and sensitive organs.X-Ray Guided Radiation (IGRT)What it is: Image-Guided Radiation Therapy uses imaging technologies (such as CT scans, X-rays, or cone-beam CT) immediately before or even during your radiation session.How it works: Because tumors and organs can shift slightly from day to day, IGRT takes real-time images to verify your exact positioning.The Benefit: It allows your treatment team to adjust the patient's position or the radiation beams on the fly. This ensures pinpoint accuracy, compensating for internal movement and protecting surrounding healthy tissue.

Basically, both are used in IMRT..from what I understand..whether you recieve proton or photon radiation. you will have slightly more radiation "splash" with photon but that can be useful when doing pelvic areas when not sure if cancer is present or not...the 'splash' knocks out small patches of cancer that may not have been seen by PETSCAN even

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chippydoo | @chippydoo | 5 hours ago
In reply to @crawdog "After undergoing radiation treatment and taking Orgovyx x 1 per day my Mono#kul and Imm granulocytes..." + (show)
Profile picture for crawdog @crawdog

After undergoing radiation treatment and taking Orgovyx x 1 per day my Mono#kul and Imm granulocytes blood tests were high while my RBC, Hemoglobin and Hematocrit levels were low in my CBC tests

Prior to the radiation and Orgovyx treatment all these levels were fine but shifted when I started the treatments .

I experience some minor fatigue and hot flashes and shortness of breath with exertion.

Will these levels stabilize over time or could there be another underlying concern I should be discussing with my doctor(s)

Jump to this post

@crawdog While on Lupron I went anemic and huffed and puffed when lifting heavy stuff. Switched to Orgovyx and at the end of 3 months anemia had corrected itself and lipids were rising. Seems we get gigged either way. Great to hear the medical community is starting to consider whole health rather than just their micro lane.

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