1. < Breast Cancer

Opting out of radiation or chemo

Posted by brighterdays @brighterdays, Mar 21, 2023

Has anyone ever had a lumpectomy but opted out of radiation therapy or chemotherapy? Does anyone have statistics on the recurrence rate if one chooses not to do one or both?

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debraw | @debraw | Apr 28, 2023
In reply to @anjalima "I am now completing my first year on Anastrozole. I am frequently prone to side effects..." + (show)
@anjalima

I am now completing my first year on Anastrozole. I am frequently prone to side effects with even some over the counter “ medical” products. I was terrified to take it because with a 99% ER + I knew this was something I needed to block if some tumor DNA got away!

Well, at 72, I did get a slight uptick in joint discomfort which I can ease with by yoga and walking. I thought my hair was thinning but it stopped and is fuller now ( thinking now it was a disruption of hair growth cycle due to anesthesia). My DEXA at one year has held steady ( and good) which was of possible concern.

If you are estrogen positive it may be worth a try to see if the AI treatment ( there are 3) will be OK for you. It’s a daily oral treatment with a half life of about 50 hours. If side effects are not tolerable it’s an easy fix! Many, including myself, don’t find it to be a problem. I was pleasantly surprised.

I did opt out of radiation as I fit the breast cancer profile for the ongoing TAILOR RT clinical trail. One arm of trial is AI only, other arm is AI plus standard radiation.

It’s an interesting study. Trying to figure out the need for radiation in certain profiles.

Blessings on the path 🌸

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Thank you for your input 💕

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1 reply
anjalima | @anjalima | Apr 28, 2023
In reply to @debraw "Thank you for your input 💕" + (show)
@debraw

Thank you for your input 💕

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We learn from each other on this journey. 💕

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dyevooshka | @dyevooshka | Apr 29, 2023
In reply to @tctredwell1 "I agree. I’ve heard over the years that cancer cures and promising research has been suppressed..." + (show)
@tctredwell1

I agree. I’ve heard over the years that cancer cures and promising research has been suppressed by the pharmaceutical industry. I didn’t want to believe it, I still don’t, but where are all those extraordinary profits going? They should be going towards finding cures but apparently that’s not happening. They just want to keep us in treatment of some kind forever.
Cancer is a big business, it’s practically a lifestyle, so I guess those in charge don’t want to rock their very lucrative boat.

Anyway, just to let you know, the very impersonal radiation treatments weren’t too bad until the last few sessions. I saw my surgeon today and he used the words ‘final blast’ or something like that. He suggested Aquafor which I think is the brand name of the ointment I’m using.

You said it just right when you said you felt like you were betraying your body. That’s how I feel - not sorry for me but sorry for my body and I feel like apologizing to it for the medieval-like treatments Corporate America is providing us in the 21st century while they’re drowning in profits!

I’ve finished with radiation and now the only issue is some fatigue but Monday I start on the AI Anastrozole. As I said to my surgeon today - the only thing I can do is try it. If the side effects are too much for me, I will try another AI but if I can’t tolerate that either then I’m done. The numbers I’ve heard convinced me to go through with radiation and reduce the chance of recurrence by quite a bit. I don’t know the numbers for AIs. But even if it’s convincing, if I can’t tolerate it, I can’t tolerate it. We shall see.

Please let me know about your radiation treatments and I’ll keep you posted on the Anastrozole.
Take care and thank you for your reply.

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I am starting my 3rd week of radiation tomorrow. Following the guidelines about drinking lots of water all day and slathering on the AQUAPHOR after treatment and again at night, I am feeling fine. I take a long nap after treatment. These is some internal breast soreness, but so far the skin is fine. I will start Anastrozole (Arimidex) May 16 after my new dex scan. Keep in touch!

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debraw | @debraw | Apr 29, 2023

Thanks everyone. I meet my medical oncologist Tuesday and will ask her more questions about the anastrozole from your input ( risk vs side effects, % of reoccurrence for Paget’s and risks without taking A, does it extend life expectancy when I’m 70yrs old now, etc) Debraw

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tctredwell1 | @tctredwell1 | Apr 30, 2023
In reply to @dyevooshka "I am starting my 3rd week of radiation tomorrow. Following the guidelines about drinking lots of..." + (show)
@dyevooshka

I am starting my 3rd week of radiation tomorrow. Following the guidelines about drinking lots of water all day and slathering on the AQUAPHOR after treatment and again at night, I am feeling fine. I take a long nap after treatment. These is some internal breast soreness, but so far the skin is fine. I will start Anastrozole (Arimidex) May 16 after my new dex scan. Keep in touch!

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Hi! I’m glad you’re using Aquaphor (just checked the spelling - I’ve been spelling it wrong - sorry). I just tried a generic of Aquaphor by accident in my 4th week of radiation and what relief from the burn!

I didn’t get burned until the last 4 sessions. When I asked for help with the burn from my radiation team, all I got was a prescription for an antibiotic cream, which I did not need. Why my radiation oncologist and his team never even mentioned Aquaphor is beyond me (but they’ll be hearing from me when I calm down!)

Anyway, good luck with the rest of your treatments. I start taking Anastrozole tomorrow! I’ll let you know how it goes.

Take care and please let me know how you’re doing.

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1 reply
dyevooshka | @dyevooshka | Apr 30, 2023
In reply to @tctredwell1 "Hi! I’m glad you’re using Aquaphor (just checked the spelling - I’ve been spelling it wrong..." + (show)
@tctredwell1

Hi! I’m glad you’re using Aquaphor (just checked the spelling - I’ve been spelling it wrong - sorry). I just tried a generic of Aquaphor by accident in my 4th week of radiation and what relief from the burn!

I didn’t get burned until the last 4 sessions. When I asked for help with the burn from my radiation team, all I got was a prescription for an antibiotic cream, which I did not need. Why my radiation oncologist and his team never even mentioned Aquaphor is beyond me (but they’ll be hearing from me when I calm down!)

Anyway, good luck with the rest of your treatments. I start taking Anastrozole tomorrow! I’ll let you know how it goes.

Take care and please let me know how you’re doing.

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So happy to find a friend in the same stage of treatment. I hope the burn clears up soon and that the Anastrozole is without side effects.

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2 replies
tapgirl | @tapgirl | Apr 30, 2023

Following a diagnosis of DCIS, I had a lumpectomy 10 years ago. Although I opted out of chemo, I did undergo radiation. The radiation was scary, to be sure, and it was followed by a couple of weeks of a kind of weakness I’d never experienced before, but wearing the Comfort Slings products protected my skin from burning and/or lesions of any kind. Radiation seemed to be a small price to pay to help deter a recurrence. Good luck!

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tctredwell1 | @tctredwell1 | Apr 30, 2023
In reply to @dyevooshka "So happy to find a friend in the same stage of treatment. I hope the burn..." + (show)
@dyevooshka

So happy to find a friend in the same stage of treatment. I hope the burn clears up soon and that the Anastrozole is without side effects.

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Thank you and good luck with your last week of radiation as it does get a bit hotter. Take care.

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cctoo. Catherine Crowley | @cctoo | Apr 30, 2023

I did and recurrence in lymph nodes in six years

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mcaj | @mcaj | May 18, 2023

Had RS lumpectomy in '97, nodes not involved, maxed out on chemo/radiation at that time. Did SSDI for 1 1/2 yr until couldn't take it due to side effects. 24 yrs later, had RS mastectomy when DCIS found in new lump, nodes not involved. Opted out on AI with concerns of side effects. Found new lump in scar tissue along chest wall with same BC cells as original cancer Jan 2023. After wide excision of chest wall, clean margins but rouge node involved in biopsy. Radiation recommended for 15 rounds plus AI. Truly concerned about re-radiation/radiation. Honestly am uncertain.

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