Today, we traveled to Bloomington Indiana to visit the IU Proton Therapy Center. The purpose was to try and determine if we should use traditional (photon) radiation or the newer type (Proton) radiation. We were impressed by the facility. Everyone was friendly. Dr McDonald was extremely enlightening and explained things well.
Overall it was a pretty hard day. Getting up early and driving out was not real fun, and our moods were not the best as we arrived. There was tons of construction everywhere, so getting around town was not real easy. We spent the afternoon looking for places to stay, which we ran into a lot of less than ideal options, and nothing quite as ideal as Rochester. Then we found out the pre surgery MRI did not make it down there, so our doctor was short a little of the info he would have liked.
But we are thankful for what seemed like a relatively easy decision to make, and that is to proceed with proton radiation at Indiana University.
For those interested in all the technical details(things like definition of cancer, technical details of the radiation, life expectancy, etc), you can keep reading. I don’t want to bore everyone if you aren’t as interested.
Dr McDonald explained some more details about meningiomas that helped quite a bit. He said meningiomas are classified into grade 1, 2, or 3. The grade 1 is what most people call benign, and has a pretty decent cure rate. Grade 2 is called “atypical” and is aggressive. Grade 3 (my diagnosis) is called “anaplastic” and are the most aggressive type of meningioma. They determine this by looking at certain details of the pathology, which indicates to them how aggressive it will be. So to answer the question everyone asks, “Is it cancer”, let me try to explain in more accurate terminology. “Cancer” means that it spreads throughout the body. These tumors are not very likely to spread, so technically it’s not cancer. The term “benign” would apply only to grade 1, which are not likely to recur. The proper description for grade 2 or 3 is “malignant” meaning that it is aggressive and could come back. So you won’t hurt my feelings if you call it malignant or cancer, as that’s what most people think of. It’s definitely not benign.
He shared with us the details of several research studies that focused on these more aggressive grade 2 & 3 tumors. The success rate with this tumor is very dependent upon the dose of radiation given. In patients given less than 60 Gray of radiation, there was an 80% recurrence rate, near zero survival at 5 years. In patients given up to 70 Gray of radiation, all survived 5 years, 33% 8 years. Recurrence has a very poor survival rate with additional surgery & radiation, typically 1-2 years until death at that point. The basic conclusion is that the best chance is a very aggressive surgery (which we feel was accomplished) followed by very aggressive radiation (which we feel I will receive at IU).
All of the statistics aside, we know that God answers prayers and He is in control. How many years I am granted is not bound by statistics. I must live each day as if it is my last and serve Him with all my heart.
Another of our goals was to determine IU’s experience with head/neck, meningiomas, etc. 40% of the tumors treated at IU are head/neck and that is all that our Dr works with. He has treated a fair number of grade 2 & 3 meningiomas. So we are comfortable that the experience level here is high. This facility was one of the first facilities in the US to do Proton therapy.
As for side effects, he expects that I will have some permanent hair loss around my right ear and probably some salivary gland damage, although 3 of the 4 glands will be spared. Towards the end of treatments, I will have skin irritation (sunburn) and fatigue. The long term side-effects otherwise are very low risk. With Protons, he can deliver a high dose of radiation without getting right up to the brain stem. With traditional radiation (photons), in order to deliver the same dose to the tumor, the brain stem and lower parts of the brain (controlling motor skills) would have a higher risk of damage. We concluded that a small amount of hair loss is preferable to brain damage.
The next step is to return next week for fitting of a mask that will hold my head in position during the treatments. Once the mask is made, they will take CT and MRI scans to define the tumor location relative to the mask. Then it takes a week or so for their machine shop to machine brass apertures and Lucite lenses that are specific to the exact shape of the field they are radiating. They will come from several angles in order to fully get at where the tumor was. The advantage of the proton radiation is that the intensity remains high, and then at a very accurate depth drops to near zero in a matter of a couple millimeters. In some areas, they will radiate almost a centimeter further than where the tumor was visible on the scans. Some areas such as the brain they go less deep, knowing that these tumors don’t tend to grow into the brain as quickly as things like the lining, bone, etc.
Once all the equipment is prepared, then they will do a dry-run session where they test everything and verify radiation is going where planned. Then I start 5 day-a-week treatments that will last for 7 weeks. Each session will be about 30 minutes long or so.
Thanks for your prayers so far. Please continue to pray for us in the coming weeks.
Love, Derek & Leann