Deciding on radiation or not
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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Just to add to the feedback, I underwent 3 weeks of daily radiation after my relatively small, grade 2, ER, PR+ tumor after lumpectomy, nothing in nodes or margins, was on left side and I did the hold your breath routine to keep rad away from heart. I very much hoped to avoid radiation (I even avoided dental x-rays most of my life, almost a phobia), and managed to avoid rad when diagnosed with a different cancer 11 yrs ago (Hodgkin's lymphoma, only chemo) but this time my radiologist was very convincing (said with rad, 95% protection from recurrence). But last summer I had a bc (same type) recurrence 2.5 yrs later anyhow, in scar tissue. After the rad I had opted not to take the AI which perhaps would have protected me, will never know. Dr said without rad, maybe the recurrence would have happened more quickly.
The rad had so little visible effect on me I wondered if the machine was actually working correctly (no noticeable effect on skin, only very slight shortlived fatigue after).
All the dire effects reported about the AI scared me off, but now have been taking it for past 6 months (alternate days, my decision), and no effects; maybe at 71 yrs, the estrogen has already faded away, don't know but in my case at least, I detect no effects from it or the rad.
I totally agree with you. I too could not tolerate the AIs. I gave up after 6 months, almost bedridden, and completely swollen and crippled. To this day I still cannot make a fist. My onco told me my only option now was to pray. I have been praying for 3 years now, walking 2 miles a day, clear headed, sleeping well, no brain fog or dark mood swings, no side effects other than not closing my fists. Radiation for me was very easy. Only side was tiredness, which a quick nap took care of. I am down 50 pounds and feeling better that I have in years. I used the radiation as a tool, but no to the drugs. Remember, oncos want you on them so they can research more.
Best fortune. Many hugsJas
Unfortunately, I did not find this informative website until after I had made the decisions regarding my treatment. I still find it helpful because many people have validated my choices. I was diagnosed with Grade 1, Stage 1a-b cancer with clear lymph nodes. I decided to have 16 rounds of radiation which I tolerated well. I had MANY side effects from anastrozole which severely diminished my quality of life. My onc was adamant that I try exemestane, but I declined because like others have stated, I felt that the lack of estrogen would most likely advance my osteopenia to osteoporosis and would potentially cause other long term side effects. She was NOT understanding of my decision and told me to “Go, live your life.”
I know that some people do not have a choice to opt out of aromatase inhibitors.
I would like to add this thought to others when deciding whether or not to have radiation. When the decision is made regarding radiation, we have no idea, if our bodies will tolerate an aromatase inhibitor. In retrospect, I am glad that I chose to have radiation, since it will, hopefully, provide some protection from recurrence. It is discouraging that the treatment for breast cancer still involves treatments that can potentially cause harm to our bodies.
Thank you all for your input, I have appreciated it more than you will know!
So at the end of the day and having nearly done spreadsheets to weight risk/reward. I have decided with my family that protecting my good health from side effects is probably a wiser choice than pursuing treatments that will only give me a tiny gain in preventing a recurrence etc.
I am incredibly lucky that I can make choices but also being in the gray area of making a decision also has it's drawbacks.
Best of health to all!!!
It would appear that some of us are on the same page. I did try the prep session for radiation but had a panic attack, so they cancelled it. My daughter, who is a Reiki Master, gives me a thing called Rohani, which is more powerful than the Reiki itself. It's to heal me and because she has been doing these sessions 5 days week (originally 7 days, until I told her to take the weekend off and have fun with her kids)! She was appalled that I even went that far. I had to tell her as I could not lie, but luckily something in my head told me – NO. Loud and clear. So now I'm not having the radiation or the pill either. My doctor wasn't happy, but understood, I think that it was the best decision for me. I found a list of foods that lower Estrogen so I will go with that. I got a message from my doctor today to stop taking Airborne (ascorbate sodium) which is basically multi vitamins? I have no idea why. I will contact her and ask that. Thank you for all that information. I will certainly do some more research and prayer. And start taking my lazy self for daily walks. I'm 79 and quite fit as I've been raising my 12-year-old grandson for the past four years and he definitely keeps me going. Blessing to you on you onward journey.
I am surprised your onc isn't considering tamoxifen for someone with your condition.
Frogjumper been thinking of you often on this journey. We each have to weigh our options and proceed down our chosen path. I complete radiation treatment tomorrow— I will have a total of 5 prone 15 minutes of treatment. My onc wants me to take aramidex for 5 years at least. I’ve said no for now; I have osteopenia and the drug leaches calcium from your bones. A broken hip would ruin my life as much as another round of cancer so I want some better solution. I have a video consultation with an endocrinologist at Mayo Rochester set up to discuss all this with me and give me his viewpoint.
This is a whole body/life decision not just cancer.
I’ve been spinning back and forth. That’s one of the reasons I went with radiation… at least I’ll have one of the adjuvant therapies.. it should keep the one breast cancer free
Hugs and wishes as you chart your course..JAS
@heydon2023 – Today I made the difficult decision to forgo radiation, but I believe it was the best for me as well and I am at peace with it after much research and prayer. My chance for recurrence in 5 or 10 years is already in the single digits according to the Sloan Kettering nomogram. I had a lumpectomy but also opted out of endocrine therapy. Even with a low recurrence rate, I chose to save that one opportunity for radiation in case it should recur and I really needed it. My primary care physician suggested that I put my thoughts away (be still and listen?) and the answer would come to me. I think that is good advice, as we and our cases are all different. Hugs and best wishes to you.
Thank you for that advice. Especially, Stay quiet and listen'? So much happening these days to distract from that. I'm thinking Yoga, as for some reason I mean to go for a walk each day, but it never happens. Not just laziness as we're raising our 12-year-old grandson and he keeps me running around organizing his school life, plus his Jiu Jitsu classes and so forth. He is the light of our lives and that keeps me going. I will take your very good advice and look at all the facts of my situation and take the time to just 'stay quiet and listen'. I feel the pressure of the medical profession, who by the way, have been so helpful and compassionate, to 'do something' rather than nothing. Doing nothing seems to be the harder part, at least to me. But I think it will be the best choice for me going forward. Thank you so much for this great advice. Blessing on your treatment and rest well.