My experience with proton beam therapy & breast cancer

Hi everyone. I am DCIS positive on left breast. Had 2 lumpectomies with second one to clear additional margins that were then negative for cancer. I am also Grade 3 aggressive moving cancer cells with a 9.2 out of 10 for high rate of recurrence. Hence radiations were recommended for me.
My question and dazed state is related to type of radiation to undergo. Penn Med near my home in Chester County, PA did not even mention proton. I found it in blogs here! I then went to Penn Med in Philly which is one of the only few facilities or if not, the only facility in Philly to offer proton. But the MD there has said he doesn’t even recommend proton to billionaires, if at early stage cancer. It’s used more for later stages and has risk of rib fractures for about approx. 1 out of 100 people. There is also the insurance appeal they would need to submit to see if Aetna would cover the proton therapy for me. Out of pocket costs would be outrageously high he said between $100-120k! I have asthma and high cholesterol runs in my family genetically on both Mom and Dad’s side, and hence am concerned about impacting the heart and my lungs. Penn Philly did the breather test and CT scan to determine if my heart and lungs move out of the way. I haven’t heard back about the results but my treatments start on Wednesday. I am anxious. Not sure what to do. I’ve sort of resigned myself to traditional therapy but upon reading this blog this morning, it makes me wonder if I should pause and visit TX and NY for options. But if my insurance does not cover it then does it even matter? I would appreciate any advice, tips and suggestions please.

Thank you all for sharing, they are giving me Proton Rad. after I have surgery stage 2
5 weeks everyday. How long does it take each time you go? do you lay face down or face up?
with my left breast 9 years ago I had just rad. 21 times. My cancer lump is right at the bottom of
my breast, I hope it doesn't touch my ribs. I will ask on that one.
Thank you all again. Kelly14,katjje,shelia.

Thank you all for sharing experiences with proton beam. I am 57 yrs old and scheduled for lumpectomy this Wednesday - lobular cancer - 1.6cm and praying stage 1. My mother was treated at Mayo (Rochester) when proton beam first became available. I am in Boston and only MGH has proton beam. I am scheduled to meet again with oncologist at Dana Farber 2 wks post op and she mentioned that she wasn't aware that MGH was using proton beam for breast cancer. It almost sounded like proton beam is reserved for treating lung etc and post Covid everything appears backed up here in Boston. I doubt my insurance (HMO) would cover it but I will ask again if I am a candidate and report back. Thanks again for sharing!

@marcia115 if you search for UTSW GammaPod, there are videos of the actual procedure that I found helpful. Including the department head (who was my radiation oncologist) explaining the process.
When UTSW first got this machine, they were only the second to get it- I don’t know if there are other hospitals who may have it now- you might check.
I wish all of the ladies on here the best.

Hi katjje -I hope you've been able to find confidence in your radiation decision - I totally understand! I don't think proton beam will be an option for me and trying to put faith in my doctors here in Boston. From what I read it just seems that it is so much safer but the costs related to the treatment are simply not going to be approved by insurance making it cost prohibitive to so many. Keep us posted xooxx

I had 16 proton treatments at MN Mayo and I was lying on my back, and my hands were behind me gripping small holders. I wore a mask. The treatments were easy and didn't damage any organs, etc. Had skin burn easily treated with Vanicream for 5 weeks. No pain or problems. Proton rad is the only way to go!!
Good luck to you.

UTSW. Gamma Pod

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.

I am a total fan of Proton radiation therapy having had it for both prostate and breast cancers and 6 lymph nodes. However, you must be your best advocate, and I hope all works well for you. The ultimately choice is yours! Be well.

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.