I am having trouble posting my entire response.
Here is more of what I tried to post:
If you click on the Keep Smiling profile I created here, you can see my posts about my husband, who is 58 and has had an outstanding outcome from the Proton Beam treatment he got in July -Aug 2013. (Unfortunately we cannot provide long term outcome details just yet.)
As a newly diagnosed patient I would encourage you to read as much as you can and to keep an open mind. Knowledge is power. Seek medical consultation about all the different treatments. Realize that you are going to get conflicting opinions from all the doctors. This is what happens. It is a shame, but it is reality. Reach out to forum members, sending private messages and asking to speak with them. Arrange for telephone conversations when possible with forum members. Keep in mind that staying optimistic is good. There is power in positive thinking. You will forge this path and you will find a solution that is best for you. Whatever treatment you select, the good news is that we are here for you.
Now- some words about Proton Therapy: To reiterate the information in the above video, Proton Beam radiation is unique in that the targeted tumor is treated with radiation and the radiation does not "bathe" or expose the normal tissue as the radiation dose exits or leaves the area of the tumor and leaves the body. There is no exit dose. When my husband and I made this decision to go forward with Proton Therapy, we were most worried about radiation techniques that left an “EXIT” dose. Proton Beam Therapy has no exit dose. This was a top concern for us.
Proton Therapy does involve many steps. We liked to say that the steps we took and the expenses we absorbed were important since they helped my husband continue working without any interruption after he had Proton Therapy. It would have been disastrous for us if my husband had lots of side effects and needed to take time off from his job and/or have cognitive issues and a long term disability. We saw the possibility that bad side effects might basically put the "college" years at risk for our family, among other negative outcomes.
There are some people at this forum who worry about Proton Therapy and how it offers range uncertainty. Per our doctor, this concern about how the tissue around the margins of the tumor in the brain could be exposed to radiation is alleviated because with Proton Therapy, a CT scan is performed in exactly the same position as for treatment. Presumably the team of radiation oncologists can avoid the issues of “range uncertainty” that critics of Proton Therapy discuss. It makes sense to ask proton therapy doctors questions about this and achieve answers that alleviate this range uncertainty concern. By asking questions, you might be able to listen to the answers and to discern which doctors have the most experience with Proton Therapy. Asking questions is very important.
Although Proton Therapy caused no exhaustion - NONE- and no cognitive issues- NONE- and only a few headaches within the last year, it was a logistically complex and an expensive endeavor. There were logistical challenges. Months prior to treatment, our insurance initially was denied a few times at a few Proton Therapy centers (see my earlier posts); but after months of effort we found one Proton Center where insurance was accepted and this center had excellent credentials, so we knew we'd be in good hands. For lodging, we researched many options and got many price quotes. We ultimately went to a website called Vacation Rental by Owner and we found lodging in an apartment across the street from the hospital. My husband wanted to earn full pay during the treatments, so we could afford the lodging and other expenses. We came up with a plan so he could work out of a virtual office. My husband packed a large monitor and a laptop and a magic jack phone so he could set up a virtual office. He participated in teleconferences, some with 200+ participants. We bought food at Whole Foods across the street and we cooked meals almost every day. We enlisted the help of friends to help with our family and we will never forget their kindness. We walked everywhere (no rental car). The treatment took about an hour and half on Mon-Fri for 28 sessions. We thankfully faced all of the challenges and we succeeded.
One year after my husband's proton therapy, the MRI revealed a darkened area inside the 1.5 cm tumor. This was good news. We are hopeful now that the tumor might actually shrink. The tumors usually stay the same size but my MRI taken one year after the Proton Therapy showed that the inside of the tumor was darkened, so it may well be possible that it could actually shrink. We won't know more about this until next year when he gets his annual MRI.
So anyway, we send you our best wishes..no matter what you decide. Please try to stay optimistic. Try not to have stress. Read about this. Learn about the treatments that seem best for you. Take good care of yourself. Please know that you are not alone and that forum members can offer support and help. Best to you!
