Weekly CT scans: Part of the journey
In general, proton radiation treatment is painless and at Maryland Proton Treatment Center, they treat you so well. Here, Denise shares her story.
Having been through 28 days of proton therapy treatment, I’d recommend it to you if you are considering proton radiation as a treatment option prescribed by your doctor. I had an incredible experience at the Maryland Proton Treatment Center (MPTC). This is why I created this website. I want to educate patients about this treatment option from a patient’s perspective. I wished I had this kind of information when I was trying to decide on proton versus photon radiation treatment. I also want to tell the story about my experience at MPTC.
First off, my radiation therapists/technicians were amazing! Lauren, Meghan, Phillip and Andrea greeted me with a smile each day of my treatment. Their smiles were from their heart. They were true healers and partners which is a big part of the patients’ journey during treatment. The front desk arrival and departure experience was one of a kind. Miss Rose and Mr. Tyrone greeted everyone with a smile. Miss Rose is fond of giving patients and families hugs along the way. I really appreciated their kindness and ability to look at us as people and not patients.
Second, during treatments at MPTC you listen to music which distracts you from the sounds and lights of the proton beam which I nicknamed Mr. Proton. I loved the music my technician team selected each day of my treatment. Many days I would end treatment, singing songs together with my team.
So; How does it feel? Most of what you read about radiation treatment says that it is painless and proton radiation treatment even less painful. I found that the first few treatments of the 28 were uncomfortable especially in my pose with both of my hands over my head with my breast, chest wall and neck all being radiated. This could have happened during photon treatment too as you are required to be in the same pose during radiation with your hands over your head just weeks after surgery. It’s just part of the process, but you get used to it.
Each day of the Monday-Friday treatments, I laid on the table for 10 to 20 minutes depending on the day. The first few days, I felt so exposed and almost embarrassed to lay there but it’s part of the journey and my radiation therapists always made me feel so comforted.
With proton radiation, you don’t have to hold your breath to protect your heart like photon radiation “respiratory gating.” The proton beam is targeted and only hits the tumor site and areas it is radiating. It more efficiently preserves the healthy tissue around the area being targeted. As always, talk to your doctor about the difference between photon and proton and ask about this breath hold technique and why it isn’t needed for proton radiation.
After a few days of treatment, I could tell by the lights and the noises, when the beam was ready to shoot. Some days , but not all, I felt a pain shoot through my breast. For just a few seconds, it felt like the beam became a lightning bolt onto my breast. It was scary at the beginning and no one seemed to be able to explain it. As I progressed, I got used to it and other than this, it was a painless procedure until the lat week of treatment when I started to burn.
During treatments, I worked and worked out daily at the gym. Some days I had to take a short nap. Toward the last two weeks of treatment, I started to burn. By the end of treatment, I was burned pretty badly. As Doctor Eblan predicted: “It might get worse after treatment”; it sure did! But I got better and my skin was completely healed four weeks after treatment! Doctor Elban was amazing. He was and still is so supportive. Doctor Eblan defines the true patient experience excellence. I am so grateful I received this treatment under his care at The Maryland Proton Treatment Center. Here are some tips and products I found helpful during my radiation journey.
Lotions: I used Spectrum Refined Organic Coconut Oil on my skin at night. I bought it at Whole Foods, but you can also get it on Amazon. I found this was the most soothing on my skin. The lotions that were recommended to me at MPTC irritated my skin. always, check with your doctor before using any lotion that is not on their recommended list.
Hydration: I was actually drinking too much water at some point during treatment so my sodium level dropped and I felt dizzy. Dizziness can be a symptom of dehydration too, so it was difficult to catch but was later caught on blood work at my oncologist’s office. I would talk to your doctor and make sure you hydrate with water and be mindful of how much you are drinking.
During Treatment: It was so uncomfortable toward the end of treatment. I used the Recover bra line during treatment but I wished I hadn’t. They were comfortable bras but didn’t provide enough support which I think might have contributed to my lymphedma in September.
After Treatment: After treatment I switched to, Yummy, Spanx and the True & Company brand. Each provide great comfort and are wireless. I found that Nordstrom was the BEST place to go for these items. However, True & Company is truly the most comfortable bra and I believe the only one to get-but it’s all up to you and what makes you feel the most comfortable.