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What to ask the radiation oncologist about prostate cancer?
Tomorrow we have zoom call with radiation oncologist that was recommended to us by prostate surgeon. Our meeting with surgeon was somewhat confusing since we did not expect to be told that my husband's case is not "urgent" and that we should talk to radiologist and as well to a doctor that does focal treatments. We were convinced that RP was the best approach, as we still think that RP is a way to go with cruciform and IDC but since we were told that we should have consultations with radiology, we agreed. I can say with whole honesty that we were like two deer caught in headlight after we were told that there is no rush, and we both failed to react with NEW questions and stared at "old ones" on our paper in confusion. So, in preparation for tomorrow's appointment I am asking for help with possible questions - any suggestion and advise is welcome. Thanks so much in advance < 3
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Yeah, nothing is perfect for every case. Sounds like you did your homework which is the important thing and cane to a reasonable pathway.
Good luck!
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1 ReactionCan't thank you enough for putting this together. My first visit with my RO is tomorrow.
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1 ReactionExcellent!
My only recommendation would be to not bombard the RO with all those questions at once. Pick a half-dozen or so on one topic (like radiation, for example) for this first visit; then another half-dozen or so on one topic (like hormone therapy) for the second visit; then possible complications; then…….
That way you’ll have good in-depth conversation in each topic area, give you time to review and understand each one, (and won’t bog him down too long).
Good luck!
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1 ReactionIf you have the option of radiation vs. surgery vs. other treatments, just look at the incidence of post treatment long term side effects. It took me five minutes to realize I did not want a week of post procedural catheterization, surgical drains and up to 50% chance of long term incontinence and impotence. So I chose radiation.
I can say the 23 IMRT external beam treatments were painless and quick. The single high dose brachytherapy procedure was far less horrible than I thought. And I have been blessed with virtually no hot flashes or weight gain from six months of hormone therapy. J
I just today got my first PSA post treatments and I've gone from a 7.1 PSA to a 0.04 PSA. So far, the three phased radiation treatments seems to be working well. Here's praying for a long term low PSA score and cure
Obviously, I am a big fan of targeted prostate radiation at a "center of excellence" facility that does lots of it!
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2 ReactionsHi, folks, I am soon be "radiated," and I am hoping to find some folks who can share their post-procedure experiences. I had my first consultation with my Dr. yesterday, and I'll have my meeting with the team that will do the radiation in about 3 weeks. My Dr. mentioned that I will have bladder "irritation" and I'm wondering of the extent of how irritated it will be. I had aquablation about three months ago. The first week was hell, the rest of that month challenging, and since then, things have been OK. Occasional urgency with minor consequences (Depend shields).
If I had learned about these Mayo forums earlier, those three months would have been easier because I really did not have a full understanding of or appreciation for what to expect.
So, folks, please prepare me. At this point, they are going to do 28 treatments, five a week. He offered a total five, but during our conversation, he did say that the irritation would be greater and the time for recovery could be many months. Since I'm hoping to travel in September, I'd like to know what I need to know.
Please, let the comments commence! (and thank you in advance).
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1 Reaction@garysc
before I knew about the Prostox test, which tests for sensitivity to higher dose radiation used in 5 doses of radiation, I had 5 treatments in January of 2023 on the Mridian radiation machine which has a built in MRI vs other machines that use fused images. This meant that the margins/healthy tissue around the prostate that get exposed to radiation is 2 mm instead of 3-5 mm. The Mirage randomized trial did the comparison between MRI based vs non mri based radiation machines and found a significant difference in toxicity. The Elekta Unity is the only other machine with a built in MRI.
Also, you might want to get spaceoar or biogel before your treatment to give your rectum from space from the prostate. Anyway, do ask your doctor about Prostox. Every body is different and toxicity and quality of life varies from one person to another. Doctors have their own institutional and other, unintentional biases.
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4 Reactions@garysc There are various drugs for bladder irritation and enhanced urine flow ( you were probably on them) and you should speak to your RO about perhaps getting on them before starting treatment.
Once inflammation starts, it can be hard to suppress; acting beforehand many times doesn’t give it time to begin. Best,
Phil
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2 Reactions@garysc
Bladder irritation. Asked about drinking water prior to being radiated. I did this and was told it helps move the bladder away from prostate and less radiation damage.
Were you offered Space/Oar? It is a procedure where they place a gel (than hardens) in between prostate and colon. This also helps reduce radiation of colon.
The difference between the 28 treatments and five is dosage at time of radiation. Are you having proton or photon radiation. There is a big difference in those types and talk to your R/O about them and the pros cons.
My primary care doctor at Mayo Jacksonville did say they were seeing sooner and little more higher with those who have the high dose versus low dose. You would think that would occur as you are getting a high dose radiation damage versus a low dose over a longer time. Again pros and cons of both but both per my R/O have same success rate.
Asked again about recovery times. Some patients have minor side affects for months and others can have more serious side affects for years. I am 3 years out from my 30 rounds of proton radiation and still suffer from dribbling (forget to do my Kegel exercises).
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2 ReactionsFrom one of our members in the local support group; He went through 29 radiation treatments over 5 years ago. He said fatigue during the last 10 treatments was the biggest side effect. His PSA is undetectable and he lives a very normal life now. I also plan to do the same treatment after consultation with the radiation oncologist this week.
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2 Reactions@garysc I would suggest SpaceOar or similar and something for bladder urgency before you start. I had 25 sessions of EBRT and ended up with extreme radiation proctitis which really manifested 9 months after treatment. Neighbor had 5 sessions and had bladder and urethrae irritation. My lesson learned is advocate for yourself as some of these doctors just want to do their thing without thought for their patients.
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