1. < Breast Cancer

My experience with proton beam therapy & breast cancer

Posted by sheilazejdlik @sheilazejdlik, Nov 6, 2016

I was diagnosed with breast cancer in February 2016 - Stage 1A, triple positive, 1.5 cm, left breast, sentinel lymph node was negative. I chose lumpetcomy with radiation. I want to share my information to let women know that if you need radiation, the option you might want to consider is Pronton Beam. I live in Minnesota and had interviewed University of Minnesota, Piper Breast Center and Mayo Clinic. They all offered the same treatment which is called respiratory gating which means they take a CT scan of your body resting and then breathing and for most people your left lung and heart move out of the way for the radiation; however, for me, that was not the case. The radiation oncologist informed me that they would have to radiate 5% of my heart, 20% of my left lung and 7 ribs. I am healthy, not on any medications, BRACA I and II negative and was not going to subject myself to this option. I started researching options and found Proton Beam. Proton Beam has been used for over 10 years to treat pediatric brain tumors and prostrate cancer as well as other cancers. Proton Beam has been studied in Stage III breast cancer but not Stage 1 and II. Northwestern Chicago Proton Beam Center was in the processing of conducting a study for Stage I and II and they accepted me as a patient. I was so grateful because Proton Beam will only radiate the tumor bed and not your heart, lung or ribs. The treatment was once a day for 10 days vs. the other option once a day for 6 weeks. We know that radiation to our bodies leads to long term issues such as secondary cancers. Therefore, Proton Beam is the best option if you need radiation. When I was at the Proton Center in Warrenville, IL, my doctor informed me that Mayo Clinic would be getting the Proton Beam; however, I am not sure if they are using it for breast cancer. I hope this information is helpful for women who need radiation and what I have learned through my journey is you need to be an advocate for your health and please get two or three opinions before making a decision. In fact, all three institutions did not tell me about Proton Beam as an option I had to research and learn it on my own. Lastly, remember that your cancer will be treated with traditional options - chemo, radiation, surgery - but that is only part of the treatment option because you also need to change your lifestyle - diet, exercise, etc. - to kill those circulating cancer cells and prevent a reoccurrence in the future.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

katjje | @katjje | Dec 23, 2022
In reply to @healinhand "I`m glad you are getting good treatment. We had a very talented Radiation oncologist and she..." + (show)
@healinhand

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.

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Yes @healinhand! I wish I had asked for female techs in hind sight. I broke down during simulation since I hadn’t expected male techs there though doc was female. I kept telling my husband more than the anxiety being exposed that way broke me. I have invisible permanent tattoos that thankfully they gave me a choice over non-invisible to select. I’m a traditional Christian of Asian heritage and hence some of these things have been really hard on me to overcome but I go on thinking it’s medical, what everyone probably does/goes through and part of the process.

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2 replies
healinhand | @healinhand | Dec 23, 2022
In reply to @katjje "Yes @healinhand! I wish I had asked for female techs in hind sight. I broke down..." + (show)
@katjje

Yes @healinhand! I wish I had asked for female techs in hind sight. I broke down during simulation since I hadn’t expected male techs there though doc was female. I kept telling my husband more than the anxiety being exposed that way broke me. I have invisible permanent tattoos that thankfully they gave me a choice over non-invisible to select. I’m a traditional Christian of Asian heritage and hence some of these things have been really hard on me to overcome but I go on thinking it’s medical, what everyone probably does/goes through and part of the process.

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I`m glad you were able to move past this.... I was not. I don`t think its necessary to suffer from PTSD in the course of healing you. All of the mammograms, MRI`s biopsy`s were performed by females, and I was present to hold her hand.
I actually asked about this, and was told that this was preferred by patients, so, they only hire females for these positions. I totally agree. I believe its about relating to a gender. Obviously I`m a male. I`m pretty sure that a female can`t relate to being hit in the testicles. LOL, also, I would also feel very uncomfortable about being on "display" regardless if it was intentional or not.
I went to school at one time to become a medical assistant. I was very aware of peoples right to be treated with respect an dignity. On a few occasions I had females drop there panties to there knee`s to receive an injection. I always turned my back to them, and asked them to please pull them up. LOL I think everyone has personal preferences, but as medical personnel, if there's genitalia or breasts involved, it should be automatic that you are examined by the same gender.
I`m sure there are those that won`t agree, but that`s my opinion.
At my wife's clinic, this is policy.
My wife is very kind and accommodating when it comes to providers.... I am not.

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healinhand | @healinhand | Dec 23, 2022
In reply to @katjje "Yes @healinhand! I wish I had asked for female techs in hind sight. I broke down..." + (show)
@katjje

Yes @healinhand! I wish I had asked for female techs in hind sight. I broke down during simulation since I hadn’t expected male techs there though doc was female. I kept telling my husband more than the anxiety being exposed that way broke me. I have invisible permanent tattoos that thankfully they gave me a choice over non-invisible to select. I’m a traditional Christian of Asian heritage and hence some of these things have been really hard on me to overcome but I go on thinking it’s medical, what everyone probably does/goes through and part of the process.

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Hang in there, and next time demand it.... you are the patient

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healinhand | @healinhand | Dec 23, 2022
In reply to @katjje "Hi @sueellen, @dick61 and @healinhand. Thank you for your replies. I ultimately decided to move fwd..." + (show)
@katjje

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.

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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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dolast | @dolast | Jan 10, 2023

Thank you for sharing this. I've been dealing with what I thought was cervical radiculopathy (left hand pain, tingling and numbness), but now more than 18 years adter breast cancer diagnosis and subsequent chemo, lumpectomy and radiation) I'm learning from an MRI done on my neck and shoulder that they've found what appears to be a tumor on my lung apex and now will have to have full body CT. I'm scared. I've felt I've been in good health all these years (take 1 baby does of BP medicine and that's it). I eat well, take vitamins, drink green juice, take AHCC and now ugh! Hoping what they see is scar tissue.

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nadejda | @nadejda | Jan 11, 2023

Good luck to you, Dolast! Hopefully it is just a scar!

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cctoo. Catherine Crowley | @cctoo | Jan 11, 2023

I am stage 3; does Proton treat auxiliary lymph nodes where !ine spread. Already have heart and lung issues and here they want me to use tube and nose clip and hold breath for 30 seconds. I can't do this. should I contact Proton Center half hour away?.I am 86.

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1 reply
marcia115 | @marcia115 | Jan 11, 2023

I have stage 2 breast cancer and had surgery, in two weeks I start proton beam at mayo for 5 days.
did you burn?

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dick61 | @dick61 | Jan 12, 2023

I had a mastectomy and 16 proton beam treatments at the Mayo in Mn in 2021! Did great! I was 82 at the time.

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dick61 | @dick61 | Jan 12, 2023
In reply to @cctoo "I am stage 3; does Proton treat auxiliary lymph nodes where !ine spread. Already have heart..." + (show)
@cctoo

I am stage 3; does Proton treat auxiliary lymph nodes where !ine spread. Already have heart and lung issues and here they want me to use tube and nose clip and hold breath for 30 seconds. I can't do this. should I contact Proton Center half hour away?.I am 86.

Jump to this post

Absolutely go for proton beam therapy!! I received 16 treatments to my chest and axilla and upper portion of the under part of my left arm as well. I was 82 at the time. No problems. It is the best type of radiation. No issues with heart, etc., because the protons deliver their energy at the tumor site and not beyond!!!

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