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Deciding on radiation or not

Posted by frogjumper @frogjumper, May 17, 2023

So, I have been going back and forth about radiation now for awhile. I am trying to pursue Proton Beam which seems safe enough considering my tumor bed is directly over my heart. So for me I know I wont' do regular radiation. But this is what perplexes me and makes my decision difficult. Basically 3 out of 100 women like me will have a recurrence without radiation, with radiation 2 out of 100 will have a recurrence. I read that and think...is radiation worth it? bearing in my mind my tumor was low grade, tiny and no lymph nodes, clear margins and very well behaving, it actually decreased in size over 6 months prior to surgery.
Is it time to just walk away from treatment and enjoy my good fortune?
I'd appreciate any input.

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einnoc | @einnoc | Aug 5 11:47am
In reply to @may2024 "I am at the same point of decision ... rejected chemo and meds so now need..." + (show)
@may2024

I am at the same point of decision ... rejected chemo and meds so now need to make a decision re radiation. The suffering women are reporting who have done radiation is moving my decision needle towards no, this is a real dilemma for me at this time

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Seriously---radiation was a day at the beach compared to the adjuvant therapy drugs they want you to take for 5, 10 or 15 years. I had no serious issues with radiation and drove myself there, alone, 33 times. I had extremely serious issues with both Tamoxifen and Anastrozole and quit both on Aug. 30, 2023.

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einnoc | @einnoc | Aug 5 11:56am
In reply to @einnoc "Seriously---radiation was a day at the beach compared to the adjuvant therapy drugs they want you..." + (show)
@einnoc

Seriously---radiation was a day at the beach compared to the adjuvant therapy drugs they want you to take for 5, 10 or 15 years. I had no serious issues with radiation and drove myself there, alone, 33 times. I had extremely serious issues with both Tamoxifen and Anastrozole and quit both on Aug. 30, 2023.

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I should also add that I was 76 years old (or young) when I had my 33 radiation treatments. I started in late May and completed them in July, 2022. At the mid-point mark I had a few minor side effects. Up to that point, it went extremely well and at #15 it was just some minor burning that they sent me home to rest up from before continuing. I feel that radiation is the ONLY thing that may, in the long run, "save" me from a recurrence, as life was not worth living on Anastrozole and Tamoxifen was only slightly better for me. I gave a year of my life to attempting to learn to tolerate those drugs, and neither one allowed me to return to "normal" or live life without major hurdles like mood swings, teariness at inopportune moments, brain fog, excruciating pain in all my joints, but especially in my injured left knee and my back, insomnia brought on by non-stop pain and, ultimately, crippling me and putting me in a wheelchair for 6 months with an injury that most resembled a meniscus tear. Was X-rayed on 9/19; 9/21; 9/28 and 11/15. No break. Just a lot of inflammation brought on by Anastrozole. With Tamoxifen I experienced non-stop UTI infections (the antibiotics to quell them then gave me a fungal infection) and could only be awake for 3 hours a day. Compared to those side effects the minor "sunburn" I experienced after session #15 was nothing, and it is all I have to "protect" me from a potential recurrence of a tumor that was 95% estrogen positive and has a 36% probability of recurring without pills, according to my 29 onco score. Think long and hard about what you'll do if you're one of the 10 to 12% of us who cannot tolerate or adjust to the goadawful pills they want you to take for lengthy periods of time,

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