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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@tctredwell1

Hi. I was told by my radiation oncologist (on 12/23/2022) that the chance of recurrence was 30% over a 10-year period without radiation and a 2% chance of recurrence over a 20-year period with radiation. Hope that helps.

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Hi all. I just finished 4 weeks of radiation. It wasn’t too bad for the first 3 weeks - “all” I had was an itchy, slightly painful rash. Then in the 4th week it was like they turned up the heat! My chest is now really burned especially around my left breast. I asked for help from my radiation oncologist and was sent an antibiotic cream. I don’t have an infection (knock on wood) I have pain. I put the antibiotic cream aside and after gently washing I slathered on an inexpensive “healing ointment” for cracked, dry skin (kind of like Vaseline - just smells better) and I’m much more comfortable now.

Next week I’m supposed to start Anastrozole (generic for Arimidex) - an aromatase inhibitor. I’m afraid of the side effects, especially pain. I was brutalized for decades and being in pain now triggers horrible memories and feelings. I guess I will try it but it will take a miracle to be able to stay on it.

With all the billions in profit every quarter, you’d think some company would come up with a cure. But I guess with all the money they’re making from cancer treatments, why would they? It’s so frustrating especially since there’s no cancer in my family. I found out I probably got it from the antidepressants I took years ago (SSRIs for 20 years). Makes me feel like a victim all over again.

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@tctredwell1

Hi all. I just finished 4 weeks of radiation. It wasn’t too bad for the first 3 weeks - “all” I had was an itchy, slightly painful rash. Then in the 4th week it was like they turned up the heat! My chest is now really burned especially around my left breast. I asked for help from my radiation oncologist and was sent an antibiotic cream. I don’t have an infection (knock on wood) I have pain. I put the antibiotic cream aside and after gently washing I slathered on an inexpensive “healing ointment” for cracked, dry skin (kind of like Vaseline - just smells better) and I’m much more comfortable now.

Next week I’m supposed to start Anastrozole (generic for Arimidex) - an aromatase inhibitor. I’m afraid of the side effects, especially pain. I was brutalized for decades and being in pain now triggers horrible memories and feelings. I guess I will try it but it will take a miracle to be able to stay on it.

With all the billions in profit every quarter, you’d think some company would come up with a cure. But I guess with all the money they’re making from cancer treatments, why would they? It’s so frustrating especially since there’s no cancer in my family. I found out I probably got it from the antidepressants I took years ago (SSRIs for 20 years). Makes me feel like a victim all over again.

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Hi, I’m right behind you. Had surgery 3 weeks ago with no complications and about ready to begin radiation treatments . I’d rather do nothing at this point because the next steps are petrifying for me. Im healthy , strong, active and 70 and I dread all the side effects I am reading about for radiation and astrozole. I had years of hot flashes, soaked sheets at night, mood swings, weight gain, etc,etc and dread the thought of whatever years I have left dealing with all of that and more again … with no guarantees that cancer will not return. I feel betrayed by all that I did for 50 yrs to prevent cancer and would never put all these toxins on or in my body but now I have to betray my body and shoot it with cancer and Horne treatment … the temple of my soul. Im not sure if it’s anger or fear I’m feeling but you’d think we’d spend more $ and research , cures and humane treatments on cancer in our country then on war??? The USA has the highest cancer rates ( all cancers) than any country in the world. Something is wrong with this picture!

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@debraw

Hi, I’m right behind you. Had surgery 3 weeks ago with no complications and about ready to begin radiation treatments . I’d rather do nothing at this point because the next steps are petrifying for me. Im healthy , strong, active and 70 and I dread all the side effects I am reading about for radiation and astrozole. I had years of hot flashes, soaked sheets at night, mood swings, weight gain, etc,etc and dread the thought of whatever years I have left dealing with all of that and more again … with no guarantees that cancer will not return. I feel betrayed by all that I did for 50 yrs to prevent cancer and would never put all these toxins on or in my body but now I have to betray my body and shoot it with cancer and Horne treatment … the temple of my soul. Im not sure if it’s anger or fear I’m feeling but you’d think we’d spend more $ and research , cures and humane treatments on cancer in our country then on war??? The USA has the highest cancer rates ( all cancers) than any country in the world. Something is wrong with this picture!

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Agree! I am 2 weeks out from my lumpectomy and I am considering walking away from all of the treatments. In my personal case the numbers simply don't add up as far as toxicity vs reward. 4-5% for radiation-recurrence only, 0.4-1.4 benefit for hormone therapy for 15 year overall survival, and chemo about the same for 15 year overall survival.
I also declined the Oncotype testing due to my pathology report being decisive for me, and feeling like I did not want some weird number coming back to haunt me, and I was simply done with testing etc.
Now I have to deal with "cording" from my surgery and it hurts enough to keep me thinking do I want to subject myself to more.

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@debraw

Hi, I’m right behind you. Had surgery 3 weeks ago with no complications and about ready to begin radiation treatments . I’d rather do nothing at this point because the next steps are petrifying for me. Im healthy , strong, active and 70 and I dread all the side effects I am reading about for radiation and astrozole. I had years of hot flashes, soaked sheets at night, mood swings, weight gain, etc,etc and dread the thought of whatever years I have left dealing with all of that and more again … with no guarantees that cancer will not return. I feel betrayed by all that I did for 50 yrs to prevent cancer and would never put all these toxins on or in my body but now I have to betray my body and shoot it with cancer and Horne treatment … the temple of my soul. Im not sure if it’s anger or fear I’m feeling but you’d think we’d spend more $ and research , cures and humane treatments on cancer in our country then on war??? The USA has the highest cancer rates ( all cancers) than any country in the world. Something is wrong with this picture!

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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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@debraw

Hi, I’m right behind you. Had surgery 3 weeks ago with no complications and about ready to begin radiation treatments . I’d rather do nothing at this point because the next steps are petrifying for me. Im healthy , strong, active and 70 and I dread all the side effects I am reading about for radiation and astrozole. I had years of hot flashes, soaked sheets at night, mood swings, weight gain, etc,etc and dread the thought of whatever years I have left dealing with all of that and more again … with no guarantees that cancer will not return. I feel betrayed by all that I did for 50 yrs to prevent cancer and would never put all these toxins on or in my body but now I have to betray my body and shoot it with cancer and Horne treatment … the temple of my soul. Im not sure if it’s anger or fear I’m feeling but you’d think we’d spend more $ and research , cures and humane treatments on cancer in our country then on war??? The USA has the highest cancer rates ( all cancers) than any country in the world. Something is wrong with this picture!

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I am so sorry you are facing radiation treatments. It seems that the medical profession is not capable of finding a cure that does not take the judgement of Solomon to determine what is right for each patient. They just seem to throw out a number of "possibles" and then let the patient "sweat it out". I don't know if I was just fortunate, but I did have a Radical Mastectomy, but no chemo or radiation or follow-up medication. It just was not available. That was 65 years ago and I am still here smiling at you at 92. I will say a prayer for you so that God can help you make the right decision.
Gina5009

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@tctredwell1

Hi all. I just finished 4 weeks of radiation. It wasn’t too bad for the first 3 weeks - “all” I had was an itchy, slightly painful rash. Then in the 4th week it was like they turned up the heat! My chest is now really burned especially around my left breast. I asked for help from my radiation oncologist and was sent an antibiotic cream. I don’t have an infection (knock on wood) I have pain. I put the antibiotic cream aside and after gently washing I slathered on an inexpensive “healing ointment” for cracked, dry skin (kind of like Vaseline - just smells better) and I’m much more comfortable now.

Next week I’m supposed to start Anastrozole (generic for Arimidex) - an aromatase inhibitor. I’m afraid of the side effects, especially pain. I was brutalized for decades and being in pain now triggers horrible memories and feelings. I guess I will try it but it will take a miracle to be able to stay on it.

With all the billions in profit every quarter, you’d think some company would come up with a cure. But I guess with all the money they’re making from cancer treatments, why would they? It’s so frustrating especially since there’s no cancer in my family. I found out I probably got it from the antidepressants I took years ago (SSRIs for 20 years). Makes me feel like a victim all over again.

Jump to this post

Sorry to hear about all you have been through. I take Anastrozole and don't have any big problems. I did gain weight around my middle and get over heated sometimes. I had a partial masectomy and decided not to get radiation. I feel comfortable that they got it all and I have regular checkups. Also I am now 78 yrs. old, was 77 when I made the decision. I never heard of getting cancer from SSRIs. I have taken the lowest dose for over 20 yrs. because of anxiety giving me extremely high blood pressure. Take care and God Bless.

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@jeanr3

Sorry to hear about all you have been through. I take Anastrozole and don't have any big problems. I did gain weight around my middle and get over heated sometimes. I had a partial masectomy and decided not to get radiation. I feel comfortable that they got it all and I have regular checkups. Also I am now 78 yrs. old, was 77 when I made the decision. I never heard of getting cancer from SSRIs. I have taken the lowest dose for over 20 yrs. because of anxiety giving me extremely high blood pressure. Take care and God Bless.

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Hi! Thank you for your reply. I was so glad to read the Anastrozole isn’t giving you any problems! And don’t worry about the SSRIs - I was on very high doses of 2 and sometimes 3 different SSRIs for over 20 years! Ahhh!

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thank you for ssri reassurance. good luck with Anastrozole. if your symptoms are no worse than mine, it will be a walk in the park. God Bless

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@debraw

Hi, I’m right behind you. Had surgery 3 weeks ago with no complications and about ready to begin radiation treatments . I’d rather do nothing at this point because the next steps are petrifying for me. Im healthy , strong, active and 70 and I dread all the side effects I am reading about for radiation and astrozole. I had years of hot flashes, soaked sheets at night, mood swings, weight gain, etc,etc and dread the thought of whatever years I have left dealing with all of that and more again … with no guarantees that cancer will not return. I feel betrayed by all that I did for 50 yrs to prevent cancer and would never put all these toxins on or in my body but now I have to betray my body and shoot it with cancer and Horne treatment … the temple of my soul. Im not sure if it’s anger or fear I’m feeling but you’d think we’d spend more $ and research , cures and humane treatments on cancer in our country then on war??? The USA has the highest cancer rates ( all cancers) than any country in the world. Something is wrong with this picture!

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Perhaps you could find out what % of radiation recipients went on to have another breast cancer episode? The real facts might help you in making a decision. 🌸

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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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