experiences with the New York Proton Center?

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Brooklyn1234
Brooklyn1234 Member Posts: 97
edited December 2019 in Radiation Therapy - Before, During, and After

Hello all,

It's a new facility, but I'm just wondering if anyone has had their radiation therapy here yet, and if so, whether you can share your experience? Also, I would be curious to know if you were a patient at MSKCC or Sinai, whether you automatically got proton therapy now that they have this facility or whether you were presented with other options?

Thanks!

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited December 2019

    Just wanted to bump this up. Thx!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2019

    Hey Brooklyn-- I was treated at ProCure in NJ, so I cant comment on the specific place, but I LOVED ProCure and have nothing but good things to say about Proton rads. I did have some skin issues (very sensitive skin) but there was nothing really painful just irritating. I had a L sided BC and I was really worried about long term heart and lung issues.

    I made a proton rads thread (Proton Radiation: Share Your Experiences) where you can hear more peoples input on proton rads.

    ProCure was by far the best medical experience of my life in terms of beautiful/clean/well designed place, kind/efficient personally warm staff, excellence of care. As in, on a snow day with an outage, everything backed up and they ordered lunch in for all the people in the waiting room!! So "above and beyond."

    I am taking a post-rads drug -- pentoxifylline-- which was recommended by my RO. So far, no fibrosis, no long term problem. I do have one area of skin that has a bit of pinkness/different texture, like a very slight rash that doesn't itch---- but that's it.

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited December 2019

    Thanks so much for this response, SantaBarbara! Looks like it's the same people who are running both centers. It's good to know your experience was so positive. I am left sided too, and they will be radiating my chest wall. Plus I have lymphedema already in my left arm, so anything that could reduce risks and side effects would be great.

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