Little to no info from Dr prior to starting Proton 1-2 weeks out

miewelling, you might post some of your questions here.
There may be nothing that you actually need to know before treatment. But some of the gentlemen on site have gone through proton treatment for prostate cancer.
Not getting adequate answers would scare me off, even with my barrigel and fiducials.
Not having concerns addressed would bother me even if they actually were "too sensitive."
It isn't a lack of empathy, but a lack of adequate medical care. What kind of care can you expect if you have problems after and during treatment.
I'm curious, too, why your aren't on ADT shrinking your tumors instead of growing them.
I had a similar problems with Proton treatment doctors. I had a very difficult time getting a copy of my treatment plan.
You are probably in excellent hands, but I agree with your worry.
Best wishes for your successful treatment.

The way you’ve been treated leads to only one conclusion. You need to go to a different center of excellence and get treated there. Your doctor doesn’t care about you and doesn’t care about your knowledge about what’s going on. Any decent doctor would give you a lot of details about everything happening.

If you continue along with this place, you will be in ignorance for years and it could lead to a shorter overall survival because they don’t seem to care enough about your survival To inform you about exactly what’s happening.

You should be given choices about what treatment to get not be told what treatment to get. You should’ve spoken to a urologist about surgery as well as somebody about proton radiation. The risks and benefits of each.

Did you have a biopsy? If so, did they discuss anything else in the biopsy that could be a Problem? Did you have a PSMA pet scan to see if the cancer had spread anywhere else in your body?

There are so many different things you should’ve known about. You are being Mistreated you need to Seriously, consider moving Your care..

Not sure where you live, but you could definitely get some information here, about a doctor that will treat you with care, and explain exactly what’s going on.

I have very little tolerance when doctors try to ignore my questions and concerns. Your treatment did not even start and you already feel dismissed. Any kind of radiation treatment can cause multiple side effects and I would be worried that there will be nobody to guide you and give you advice of how to deal with side effects or explain what they mean and for how long will they last.

BUT, the biggest concern is that tumor changed in size and possibly even aggressiveness ! What if the gleason is now 4+4 (???) , would it change the whole treatment plan ? Would it involve obligatory ADT in that case ? I can totally see how upsetting and alarming this must be !

Maybe you can call and explain that you will cancel your appointment if you do not get clear answers and have one more consultation with your doctor. They probably think that you will never cancel treatment since you already got markers - that is really neither professional nor fair. I am so sorry that you have to go thorough all of this and I hope that you will find solution and answers very soon and before you start your RT.

@mlewelling
Most doctors at experienced and highly used facilities usually have PAs and nurse assistants for contacts between visits. I know I had a PA that I saw, and contacted through portal. He would answer all my questions or would add a caveat of will talk to Dr. and get back to you.

When I had my proton radiation after my appointment with R/O the medical information went to their physics department who set up the parameters for the treatment. That takes some time.

The biggest thing I see here is your discomfort in not having acccess and response from your doctor. That is important to feel you do. Have you actually told the nurse you are feeling umcomfortable with not having another appointment with doctor prior to your procedure start? If not do so.

I had little contact with my R/O after my first visit with him. He as there on the day of my first procedure. But I was seeing a PA for several times prior to that and he fill and answered all my questions. What I liked at the center I went to was my R/O gave me his personal cell phone number and said call or text me if you are not getting your questions taken care of.

I felt I was (and am) in the same situation. I’m at Mayo. I never met by R/O until my 3rd Proton treatment (out of 5). That was because I insisted. Only talked to PA’s thru the portal just as described above). I was given minimal info on possible side effects. After the treatment, I was told to come back in 3 months. No further discussion. When I was concerned about certain side effects, I was put off by PAs. I am waiting for the 3 months to have some conversation. Fortunately I feel I am recovering well

I wouldn’t stress over it. I had proton therapy 34 fractions in 2022 and my RO scheduled weekly consultations with me just to see how it’s going and to see how I’m feeling, etc. after the initial planning like yourself I was just told to report for my first session. They do do a lot of background planning work based upon your initial set up and there’s really no need to concern yourself after your initial set up because all the background work has been completed during the simulation.

@robertov
Which Mayo Clinic did you go to?

I’m sorry to hear about your lack of ability to talk to the people most involved with your treatment.

I’ve not heard of somebody having radiation without first seeing an RO before any treatment was begun. They discuss what the treatment will be and how it will affect you, normally. To have a PA not answer questions About side effects must be very frustrating.

@robertov Wow, your situation sounds worse than mine!

Thanks for the great comments. After getting finances set, apartment rented, kids plane tickets for Thanksgiving booked that I am pretty committed to the Center I chose. I had to remember the many personal folks I spoke to and other reviews I read that raved about the treatment and minimal side effects at the Center I am going to. After being diagnosed and first being convinced by my Urologist that surgery was my only option (whole other discussion thread!), I dove into the info out there and had consultations with my local Oncologist, Mayo Scottsdale, Georgetown, UCLA and finally the Center that I picked. My Dr. is very well known and I was happy to have him as mine. I am still very disappointed at the lack of communication leading up to my treatment. I will stay positive about it all and will express my concern when I have the chance. The one redeeming thing is that I do have weekly (10 min) appointments with the Dr. so hopefully things will smooth out.

@mlewelling Please don’t ever feel you are being too sensitive or asking too much—it’s your health and you will be the one who knows the most about your situation. I think sometimes doctors forget, or aren’t very aware, of the stress and emotional duress patients may be experiencing when faced with cancer and all of the treatment options (not to give uncommunicative doctors a pass or anything, it just falls on you to communicate what you need). We did find that those weekly appointments during the radiation treatment were helpful and my husband was able to get all of his questions answered during his treatment. Best of luck to you.