Radiation Oncology meeting: What questions should we ask?

Is a certain diet required during radiation?
I presume the Rad Onc will provide the necessary info, but curious about the procedure requirements. Thank you.

Questions to ask regarding prostate cancer external radiation treatments

You will want to weigh the risks, benefits, preferences, and outcomes of various external radiation treatment options; these can help guide your decision and help you start an open and candid conversation with your radiation oncologist.

> What are the different external radiation treatment options (IMRT, SBRT, Proton) for my condition?
> Which kinds of external radiation therapy would treat my cancer best (IMRT, SBRT, or Proton)?
> Which are available at this facility?
> Which would best maintain my quality of life?
> How many of these types of radiation treatments have you done?
> What are the procedures (When/Where/How) for each type of radiation treatment?
> What are the expected side and after-effects and risk factors with (the specific form of) radiation treatment?
> Will I require hormone therapy (Eligard, Lupron, Orgovyx, etc.) as part of my treatments?
> What side-effects should I expect from the hormone therapy?
> Is there a way to minimize the side-effects from the hormone therapy?
> What are the chances that I will suffer from complications during or after treatment (from either the radiation or the hormone therapy)?
> What are the chances that I will have GU, GI, ED, incontinence, bowel, rectal, problems during or shortly after, treatment?
> Should I be worried about side effects years after treatment has ended?
> What advanced technologies do you offer at this facility that can help reduce the risk of side effects?
> For the (specific form of) radiation, will I use a rectal spacer? If so, what type (SpaceOAR, Barrigel, or BioProtect)?
> Is there a chance the cancer will come back after treatment?
> What will the preparation for each treatment look like?
> What will the duration of each treatment be?
> Can you describe the entire treatment plan?
> Will there be an impact on my daily routine?
> Will I be able to continue to work?
> What activities will I still be able to do?
> What activities are not recommended during each type of treatment?
> How soon must a decision on treatment be reached?
> Is there anything that I didn’t ask that I should know?

Hope that helps!
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Be aware that the barrier protects the rectum, but not the bladder. The problems people have with burning irritation when peeing are still very common.

I’ve had two guys calling me recently about their radiation, wanting to know about what was happening what to ask, how well it would work. Many questions and you have plenty of them in the previous answers above.

They called me after radiation to tell me what’s going on. In both of those cases peeing became a real problem right away after two or three treatments. Both of them were on Flomax, but one of them worried about it, dropping his blood pressure too low and the other one had heart issues that made it difficult for him to use it. Diarrhea was another problem, which hopefully your barrier will prevent. Imodium does work if radiation causes diarrhea.

I had salvage radiation 12 years ago. But then they had a lot more sessions. I had 40. I had no side effects at all and went to work immediately after, for eight weeks I was going for treatment. They reduced the number of sessions and increased the amount of radiation, which seems to have caused the side effects people are having now.. One of the two guys had to stop getting treatments on Friday after three weeks so that he could recover before the next week of four sessions.

What I was most interested in when my RO first prescribed 20 sessions of external beam photon radiation treatment plus 2 years of ADT drug therapy was were there any other options that would provide a longer cancer recurrence free outcome?

My case was staged as "at least high risk", grade group III, cT3b, i.e. possibly, or perhaps probably localized but seminal vesicle invasion was present.

In a case like this, adding a brachytherapy boost to the external beam has a lot of data supporting it as likely to provide the longest period of freedom from cancer recurrence, provided the brachytherapy is done by experts.

My RO was initially reluctant that I could meet his fairly strict requirements he demands prior to accepting a patient for brachy boost, but when he saw my interest he re-evaluated my case and decided to do it. He is the chief of brachytherapy at an NCI designated institution - I felt in good hands.

Prior to undergoing the 20 sessions of external beam part of the treatment I asked about protons vrs photons. My RO pointed out that there is no clear evidence that one is superior to the other, and that he prefers photons. I asked whether it was worthwhile to travel to get the external beam at a facility where they have an MRI-Linac. He was skeptical. He pointed to various deficiencies some say exist in the most prominent study of the system, ie. the MIRAGE study. I still wonder about MRI-Linac. The docs that use and promote its use are generally recognized as some of the best of the best, as good as they come.

I accepted my ROs eventual prescription for 20 sessions of photon external beam plus brachy boost, but I didn't ask for details about the machine that he would be using. I would have had less anxiety prior to the treatment had I been more informed about the particular machine.

It was an Ethos Hypersight.

It has a cone beam CT imaging ability which gives operators a very good picture of where things are the day of treatment. The day of treatment scan is compared to the simulation day scan which helps them as they make the decision to turn the beam on. The machine has a certain amount of ability to tweak the day of treatment plan given what the day of treatment scan shows.

Compared to some machines, this machine can change the direction the beam comes from very quickly. This reduces the time the patient is on the table with the beam on. The shorter time is important as the longer the treatment lasts on the day, the more chance there is that something will cause the prostate to move and cause the beam to hit the wrong spots.

PS. I had no idea it was possible that I would be having the extreme fatigue and diarrhea I have experienced since finishing my 20 sessions of external beam. I had endured the brachytherapy HDR with no problems at all. I was doing great as far as I could tell with the ADT. But this period after the external beam has been difficult.

I could hardly eat as all food tasted bad. A few times when I tried to eat I couldn't finish the meal as the food seemed repellent, and nausea set in. The fatigue was not improved by resting or sleep. My butt was so sore it was painful to take a crap.

After about a week and a half, things started to very slowly improve. Each day is slightly better than the last which is very encouraging. The diarrhea went away after a week.

I'm retired. I don't see how I could have kept working at a job for several weeks at least. My goal during the worst of this time was to keep some minimal semblance of my exercise program going somehow. The minimalist plan was to do 30 minutes a day, but some days I could not do it. I'm back to my regular program now.

Its almost 3 weeks since I finished treatment and I still have a long way to go.

@climateguy
Did you have problems with burning upon urination? A slow down in how long it took to pee?

This seems to be a common problem with people I have talked to that have 20 sessions.

Sorry to hear about your problem eating, Hopefully you have been wanting to lose a few pounds and it does that. The problem with not eating is, if you don’t eat meals, your body goes into this emergency mode and starts to gain fat and burn muscle. You could try to eat a little bit at a time to make up for the overall reduction in what you are eating.

I gained 6 pounds over the holidays and It took me four months to get rid of it. It is so hard to lose weight on ADT.

There are reasons that centers of excellence such as Cornell Weill, MD Anderson, John Hopkins, and others are choosing an Mri based Radiation machine. The margins of exposure of healthy tissue is less, and therefore the side effects are less. It is worth asking your doctor whether you can have that type of machine and whether it is available. The two machines are the Mridian and the Elekta Unity. What they can see, they can treat. You might also want to consider a quick, second opinion via telehealth with a center of excellence.

Doctors are dedicated and do their best, but hospital institutions are competitive and make their choices accordingly and sometimes the in house machines are not the best choice for that particular patient. Outcomes may be the same, but side effects can vary significantly for a number of reasons, including the type of machine.

@jeffmarc I've experienced no burning on urination. The flow was worse for a few days after the treatment, now (at almost 3 weeks) it is usually a bit better. My nocturia seems to be heading towards twice a night as opposed to every hour immediately after the 20 sessions. Food is almost tasting as it used to taste at this point. I forced myself to eat during the worst period and weighed myself every day. I did try eating more often with smaller amounts. I kept going into food stores dreaming that I'd find something I'd like to eat. I bought a lot of different things that didn't work out. I lost 5 pounds very fast, but I've gained 3 lbs back and stabilized now.

I'm not sure all my problems are due to the radiation treatment. At various times in my life I've run myself down during somewhat manic periods, without really noticing, until suddenly I've crashed for weeks.

I think part of this crash after the external beam 20 session treatments is due to the accumulated many months of the stress of the diagnosis, deciding on a treatment, getting the HDR, moving to Seattle for a month to get the external beam, going through ADT, etc.

I felt almost normal right up to treatment 17 when I returned home for a 3 day weekend. I slept the whole weekend it seemed. I pulled myself together and didn't feel that bad until right after the treatments were done. Then - crash.

I assume with 28 sessions, your husband will get the moderate-hypofractionation treatment. My husband had 25 sessions and completed it in mid May. At the first appointment, I asked several questions including these following;
1. Are the sessions traditional radiation therapy or moderate-hypofractionation radiation therapy (higher dose but less time)?
2. What locations will be treated? And what are the dosage (GY) use at each location?
3. What machine will be used? and why they use this specific machine with my husband? I needed to know then so that I could look up the pros and the cons. In my husband case, they used Elekta with Monaco treatment planning system. The three centers we went for consultation have combination of Elekta Synergy, Elekta Versa HD, Elekta Unity (MRI-guided), Varian Trubeam, and Siemen Ethos (similar to the LINAC but not using MRI).
4. Do they have "in-house" physicists?
5. Will my husband need to be on strict diets? Ask for recommendations. Some RO do but some don't.
6. Will my husband need to do the protocol "empty bowel, full bladder"? If he does, will he be allowed to use enema on the treatment day.
7. I asked them to explain clearly how the planning day will be like and specifically asked them for the protocol before we coming in.
8. In case of emergency or sudden side-effect symptoms, who should we contact?
9. Will bloodwork be done half-way through and at the end of the treatments?
10. What are the possible side effects that you should be aware of?
11. What is the plan for post-radiation?

Depending on how large is the treatment area, the MRI guided radiation therapy machine (Elekta Linac) may not be good options. In my husband's case, he was not a candidate for both Elekta Unity (MRI-guided) and Siemen Ethos (similar to Linac but not MRI) because his treatment area was vast and needed shorter time to avoid his movement. Both Elekta Unity and Siemen Ethos required longer time for his treatments (20-35 minutes of laying still per session) whereas the VMAT system only took (less than 10 minutes of laying still per session). Two centers decided to offer the treatments with either Elekta Versa or Elekta Synergy (both with Monaco treatment planning system) that could use VMAT system to do the job mainly because my husband needed Simultaneous Integrated Boost (SIB) to one PSMA-positive lymph node. Another one center offered SBRT which was not approved by our insurance due to my husband's biological history. My husband got 25 sessions of the moderate-hypofractionation to his prostate bed and whole pelvic lymph nodes, plus the SIB to prostate bed and the one PSMA-positive lymph node.

@climateguy I am so sorry you are going through this. PCa is hideous.
Did you have a rectal spacer placed?
Hubby is scheduled for it on Sept. 17th.
Hopefully, it will help alleviate a lot of the issues associated with radiation.