Began Proton Beam Treatments

IIS,
I think it's usually a relief once you get the treatment going. Get ready to settle into your routine.

For Proton, do they want your bladder full? That can be the trickiest part of the whole thing.

Good luck!

Does anyone know the status of hypofractionaction for proton therapy? Is there concern about adverse skin reactions with higher session dosages?

Djin

IIS - Don’t really want put anything into your mind…… but…….I developed an itchy pelvic rash about a week into IGRT/IMRT. The rash is not unusual but happening that soon was, at least to the doctors. The techs said it happens and have seen everything. I think my skin has gotten more sensitive as I get older.

The most consistent radiation side effect seems to be the tiredness near the end of treatments and thereafter. Hard to believe that something you can’t see for 5 minutes a day can do that but it does and you can have a couple of really bad fatigue days.

I suspect the ADT will make its presence known soon. Hope you don’t experience any of nasty side effects of ADT or radiation that you read about sometime and keep on trucking to the finish line.

Mumbo— yes regarding the lymph nodes as one pelvic lymph node was “hot” in the PET scan. In fact it was explained they would hit the entire pelvic cradle but to a lesser degree as in the areas of established malignancy. MRI, CT, PET, and bone scans showed no mets elsewhere. But I’m aware micro-mets may prove to be an issue down the road. I think my PCa had advanced beyond the ability to expect a “cure”. This is the first step of a life-long treatment plan. Hopefully a LONG life-long plan. (Mom is 96 and still going strong so the genetics are good.)

Sounds reasonable, your thinking appears to be solid. Most cancers are a long term curse and given enough time, they seem to come back and beat the immune system once again. I think most of us hope that medical science keeps marching along with ways to control the beast so that we get reasonably long lives with a reasonable amount of treatment and side effects.

DjinTonic said...
Does anyone know the status of hypofractionaction for proton therapy? Is there concern about adverse skin reactions with higher session dosages?

Djin

I was in a Phase 1 trial to test 20/16/12 fractions of proton therapy to find the maximum tolerated dose (https://clinicaltrials.gov/ct2/show/nct04486755). I was in the 20 fraction cohort (315 cGy per dose). Got a permanent suntan on my hips, but no real adverse reactions either during the radiation nor so far afterwards (I am now 6+months post PBT)

Side effect differences between Proton and Photon are negligible, if at all. Both have the same effect on cancerous and benign cells. The past hype of Proton being less damaging never proved true for PCa, thus it’s very limited use. Photon does pass through the body so it has entrance and exit but at the same strength. The Bragg effect of Proton stops the radiation just past the target so it doesn’t pass through but, it is much stronger upon entry, negating any advantage. Both use a rotating gantry to limit exposure to healthy tissue and focus the bulk of the radiation on the prostate. Both achieve this in an equal manner. Plus, being matter rather than light, Proton experiences a lot more bounce and refraction scatter of radiation upon entry and probably does more damage to healthy tissue at that point than Photon.

You should expect some bowel and urinary inflammation during the radiation period and about two weeks after the last fraction. It is best to eliminate carbonated, caffeinated and acidic beverages as they are tough on the urinary tract. Expect increased urgency and frequency of bowel movements. Stools will likely become looser and more gassy with a few men experiencing some diarrhea. Keep Imodium-D on hand. Increase fluid intake with water and green tea to stay hydrated and step up activity with an additional 30 minute walk each day. Very few men experience radiation sunburn, but you might and a good aloe lotion can help.

Djin, regarding hypofractionated Proton, it is used with some cancers like Head and Neck and some pediatric, but, to my knowledge, isn’t used in any meaningful numbers for PCa. The Proton beam can be modulated and formed similar to Photon SBRT. I did read one report several years ago indicating that entry scatter was much more significant than Photon and that could lead to unwanted toxicity particularly at hypofractionated doses. As I remember a few years ago an institute posted a paper showing experience of a limited study and a few centers reported it being available, but with the great reduction in the use of Proton for PCa in the past seven years or so, I haven’t heard any more about it. Proton therapy for PCa has become rare and will continue to be so long as centers charge much more for it than Photon.

The latest information from Medicare I saw indicated Proton reimbursements being about three times as much as Photon for PCa. Medicare and most all third party payors will not reimburse for it unless the center reduces the cost. When Mayo started it’s center a few years ago it charged the same for Proton as they did for Photon and I understand they are one of the few centers using it regularly for PCa. A radiation oncologist friend here in Atlanta says the Emory Center advertises it for PCa, but then doesn’t use it due to limited reimbursement and then pivots to patient to Photon. I think that is pretty common at many of the centers. IIS is the first man in several years on the forum that is using it. As I remember a few others have tried, but pivoted to Photon when their third party payor balked at the additional expense. Amazing that IIS got the center and insurance company agree.

I believe it is necessary for those posting their personal beliefs without considering both sides of the issue need to consider the impact of misinformation. Reference post by JNJ- veteran member posted 3/16/2022. Subject Proton therapy vs. Photon therapy. I too am a veteran with more than 30 years of active duty and in my 61st year of service to my country. After removal of my prostate in 2009 Gleason 8, cancer returned because the urologist surgeon did not remove surrounding lymph nodes even though the biopsy showed cancer on the margins. I changed my urologist. At Penn medicine at Princeton in NJ the oncologist offered both photon and proton therapy with benefits of a cure with both as well as possible side effects. I choice proton and glad I did, in 2017. NO side effects and PSA remains below <.0016. I had treatment at The ProCure, proton therapy center in Someset, NJ. It is world renoun. Folks come from all over the world to get ptroton therapy. Medicare pays with no problem! In fact, Memorial Sloan Kettering in NY sends their cancer patients there for treatment pending completion of their own photon treatment center. Problem is many Urologists (not all) do not believe in proton therapy treatment. Many have financial interests in Photon treatment therapy.
This is my experience and I would recommend to any one considering choosing between proton or photon therapy they should ask their oncologist of the advantages and disadvantages of both. Additonally, get a list of patients treated with both and find out their experiences. You can do this. I did it and it helped me make my decision.

Best of luck for those trying to decide.

Thanks for the update IIS and glad the end of treatment is insight. When I was diagnosed Proton would have been self pay so I really didn’t look into it. For recently diagnosed guys it seems like an option worth considering and this thread has plenty of valuable information.

I would mention that SBRT is photon with an advantage of typically only five sessions. I had only some mild burning when urinating that quickly resolved on it’s own following treatment. Cost wise SBRT was $10K cheaper for our insurance than IGRT. Although I see a lot of comments and concerns regarding photon treatment I believe the experience of most SBRT guys is same as mine and no significant issues. I’d appreciate any comments from SBRT guys that have experienced any negative problems.