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My experience with proton beam therapy & breast cancer
Breast Cancer | Last Active: Aug 9, 2023 | Replies (57)Comment receiving replies
Hi @sueellen, @dick61 and @healinhand. Thank you for your replies. I ultimately decided to move fwd with traditional photon radiations due to a few reasons. One was insurance related. The other was related to being plan-specific. My MD shared the images of the plan which included extent of radiation to my lungs and heart. My heart was thankfully out of the way and lungs very minimally impacted. He also said even with proton they treat the entire breast not just locally and that they had given up the targeted radiation due to side effects to women including cosmetic ones. So with the entire breast being treated he said for me both plans would result in similar exposure and it was the best case option for me. That said, I contacted the 2 Gamma Pod places and Oklahoma Proton Therapy (due to lowest out of pocket costs). The Md at Oklahoma whom I cannot thank enough and was amazing reviewed the plan and provided input and ultimately recommended traditional also. The criteria for gamma pod excluded me due to my cancer being at grade 3. Hence after taking to many places in the country, delaying start of radiation, I’ve completed 2 weeks, in week 3 with 2 treatments left. I was able to start with peace of mind that I looked at all options, suggestions and treatments ladies here have offered. I was supposed to have been done by Christmas but their machine broke down one day and I make up on the 27th. I am thankful beyond words to all the wonderful ladies and warriors really who have helped me thru this journey here on this site. And every Christmas hence forth I will be thankful.
Replies to "Hi @sueellen, @dick61 and @healinhand. Thank you for your replies. I ultimately decided to move fwd..."
If you don't have anything for the radiation dermatitis, we used Miaderm, and Miaderm with Lidocaine. It was very helpful.
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I`m glad you are getting good treatment.
We had a very talented Radiation oncologist and she ended up with Photon based APBI 30 Gy over 5 days. Before we met with him I emailed him about an alternative marking for the tatoo`s. He said he would look into it. I provided the name of the company that provides removable temporary marks for this. We had a short consultation, and I again reiterated that there would not be any permanent marks. They had an opening for the simulation immediately after the consult, so we went ahead with it... (my mistake for not waiting) she put on a gown and we went into the simulation room. The man that was doing the simulation uncovered her from the waist up, and before I knew it she had 3 permanent tattoos. The door was left open and there were people passing by. I closed the door and on 3 occasions I covered her up. She was just laying there bare chested with nothing going on. The 4th time I told him if he couldn't treat her with some modesty we would be going to another hospital. My wife was in shock at the lackadaisical treatment.
The next day I sent a message through the portal to the Doctor and requested a meeting with him and the hospital administrator. I told them what happened and we would not be continuing treatment. I was invited for a meeting and a detailed tour.
On arrival I was met by both of them, and the physicist. I insisted on a tour that included EXACTLY what would be performed. They gave me a gown.
We went to the linear accelerator, and they helped me onto the table and pulled my gown down to my waist. I asked why I wasn`t covered? They said they would have to re-figure everything in order to accommodate a covering. "I told them to sharpen up there pencils and get with it." They did.
On her first treatment we went into the treatment room, she was placed on the table. The two girls placed a special sheet over her breasts and then pulled the gown from under it. Her breasts were never exposed. I was there the entire time, except when the LINAC was on. When the treatment was finished, the operation was reversed. On our way home my wife commented that "you could smell the fear" in the treatment room, but my wife was very pleased with treatment she had been shown. We had 1 of the RT`s that was a continual problem through the entire regime. She was really rough and had a real attitude. I sent an email to the administrator, she is no longer there. We also still have 1 more laser treatment to finish the tattoo removal, that was paid for.
The moral to this story is:
You are not a number, or a piece of meat. Take someone who cares about you, with you. You deserve to be treated with kindness and have your dignity preserved.