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Little to no info from Dr prior to starting Proton 1-2 weeks out
Starting proton therapy next week after a 5 months of research, consultations and finally deciding on proton therapy for my 3+4 prostate cancer. I chose a well known center and well known Dr. My consult with this Dr made me feel confident and comfortable with my decision to go with him. I went to the center couple weeks ago for fiducials and Barrigel/CT and MRI.
As I was leaving I asked when I would discuss my treatment plan with the Dr after he looked at my imaging. They told me there were no plans to. I am supposed to show up Monday for my first treatment. I would get 10 min the following Wed with him. My consult was way back in July so I had several questions. I wrote requesting an appointment and a nurse told me to call her. We spoke and it became clear I was not getting an appointment. She told the Dr and he made a poor attempt at answering a couple big questions with no option for follow up. Then yesterday I get results of my MRI which showed my lesion had grown from 9mm to 1.6cm. Pi-Rad’s went from 4 to 5. Maybe that’s no big deal but it concerned me. I sent a message to the Dr asking if there was anything concerning about those numbers and was told the Dr would discuss things next Wed.
Maybe I am too sensitive, but every surgery or medical procedure I have had I have spoken to the Dr ahead of time. Am I expecting too much from a busy Dr? In my career I was very busy too, but always had enough empathy to meet with my employees when they needed. Am I asking too much?
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@jeffmarc I misspoke. I had a video appointment at the time of selecting an option. Where I left thinking Proton Therapy was my preference. From there, everything happened without much interaction and no in person meetings. Until the 3rd day of my treatment. The PA I interacted with I never met in person. TBF, I had a 5 fx proton so there wasn’t much time. Now that it is over, my follow up is 3 months. When I suggested an earlier meeting, I was told it wasn’t necessary. Now, I’m happy with the results so far. Healing well. But there was none of the personal connection, I was expecting. More interaction with this forum 🙂
@robertov
When I had IMRT for 8+ weeks I met with the radiation oncologist Before the treatment and we discussed a lot of issues related to it. I don’t think we discussed many of these side effects that we know about these days.
After that, I did not meet with him again until the treatment was finished. I really didn’t need to meet with him. All the treatment is automatically loaded onto the radiation machine and the techs who run it Know how to position the patient and know when the bladder is not correctly filled (I’m pretty sure this is done by the computer doing the radiation). The RO was never involved in any of that. Same thing was true when I had SBRT radiation on my spine. Spoke to the RO during planning and at the very end.
There was never a PA involved. If I had had issues with the radiation, I would’ve emailed the RO right away, to come to a resolution.
The thing is there really isn’t much to discuss with the RO Once treatment is completed,. If you have issues, further tests are done, and then you speak to someone who will help you make a decision About further treatment.
@jeffmarc That is true. It is more like conveyor science. The work done up front and executed. At the same time, most of what I do know about prostate cancer, the various treatments, and success and failure rates is what I learn from you Jeff, Jc, and others here. And, of course, my own research. Not from my RO. It would have been nice if he had discussed outcomes, likelihood or recurrence, if so, next steps. What would I feel during the recovery period.
Having said that, the treatment went fine. I never felt the radiation caused any problems. I’m recovering nicely. I am glad to know I don’t have to think about it for 3 months.
Best to all of us, I’m one of the lucky ones, I think. Having access to this technology.
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