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My experience with proton beam therapy & breast cancer
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.
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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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1 ReactionI`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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1 ReactionHang in there, and next time demand it.... you are the patient
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1 ReactionIf you don't have anything for the radiation dermatitis, we used Miaderm, and Miaderm with Lidocaine. It was very helpful.
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3 ReactionsThank 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.
Good luck to you, Dolast! Hopefully it is just a scar!
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.
I have stage 2 breast cancer and had surgery, in two weeks I start proton beam at mayo for 5 days.
did you burn?
I had a mastectomy and 16 proton beam treatments at the Mayo in Mn in 2021! Did great! I was 82 at the time.
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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