Thinking About Skipping Radiation – Anyone Else?
Hi everyone,
I’m not sure if this is the right place to ask, but I’m curious if anyone here has ever skipped radiation. I had chemo and got a complete response—no cancer—and I ended up having both breasts amputated. My right breast was healthy, and my left had a fast-growing 7 cm tumor. I was Stage III. I went with a double mastectomy because I thought it would reduce the need for radiation.
Looking back, I feel a little confused and maybe even misled—if I was going to need radiation anyway, I would have chosen a lumpectomy with reconstruction on the left side instead.
I’ve also been hearing that radiation is the “easy” part and that I’ve already beaten the hardest part. Honestly, it’s all been hard. The thought of future risks from radiation—like scarring on my lungs or heart or cancer again—feels like a heavy trade-off, and I really just don’t want any more damage to my body.
It also feels like every option is being taken away. I was told I could have reconstruction at any time, but now with the possibility of radiation, that feels like just another thing slipping out of my control. The doctor said that if it comes back, it would almost likely be a death sentence, which I don't know if he just said that to get it done. The radiologist said that I am in the "middle of the road" for needing it done. There is a case study where women who have smaller tumors and complete response, are no longer required to get radiation. Mine was larger, but I am a complete response (as of the last testing one month ago). Oncologist said the real test will be the one in March and May if I am a true "complete response". They also want me to start Tamoxifen (I'll do a separate post about that). I guess I don't understand that if I am going to be on this magical pill why I still need radiation? I asked them three times, and I still do not understand.
I’m also struggling with the reality that my ability to have children may be gone, which I didn’t fully understand before treatment. I feel a little lost at times and maybe even frustrated with the system, but I’m still incredibly grateful for this second chance at life.
Anyone who has gone through similar choices or feelings?
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Hi @risinggoddess, I'm sorry that you are feeling blindsided by the consequences of your treatment. It can happen due to updated tumor characteristics found on scans or in surgery, the sheer volume of information you are presented with in a short time, and doctors intent on preventing a recurrence (that's their job) downplaying the possible negative results of a treatment. It is your right to choose what is best for you. That is done by gathering information, asking each doctor for the recurrence risk of doing or not doing something, and considering your own personal characteristics (age, tumor stats, risk tolerance, other health problems, values.) Probabilities refer to large groups of people so there is no way of knowing what will happen to you. Likelihoods can help you make an informed decision for yourself, however.
Chemo works by destroying rapidly dividing cells (including cancer and hair follicles) throughout your body, radiation helps destroy remaining cancer cells in the area radiated, and anti-estrogen drugs (tamoxifen and aromatase inhibitors) help prevent estrogen from causing the regrowth of cancer cells (each type of med works differently). Nothing is guaranteed to remove all cancer cells. Recurrence can be local (a repeat of what you are dealing with now) or distant (systemic affecting bones and organs, metastatic/stage 4 which can be treated for a while but has no cure.)
The size of your tumor means that just a mastectomy without radiation is not standard of care. It's confusing when you hear of so many other women having a mx to avoid radiation but their tumors are smaller than 5 cm. Radiation does complicate reconstruction and can have serious side effects. They are rare but can occur (I was one of the unlucky few.) Rads has been shown to help prevent recurrence and the vast majority people don't have anything bad happen so I wouldn't reject it immediately. You should ask your RO his estimation of your recurrence rate with or without it. If he is "on the fence" the benefit might be small and not worth the consequences in your opinion. You should find out that probability before you decide.
Once you have had cancer the risk of it coming back is always there. Over time that feeling of uncertainty goes to the back of your mind. All you can do is make the best choices you can at the time since there is no way to see the future. Hugs.
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Thanks @maggie15 for responding and for your kind words . I’ve really been struggling with this. I had it in my mind the entire time that if I went through with a double mastectomy, I wouldn’t need radiation and would be “done” after surgery. Throughout this process, I’ve tried to approach everything mentally — and as a naturally analytical person, it’s been especially hard because cancer never gives definitive answers. That uncertainty is difficult to come to terms with. I truly worry about the effects of adding radiation to my body. I’ve also always found it strange that something like radiation, which can cause cancer, is used to help treat it.
Thank you for being so sweet. 💖
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The last time I checked, radiation reduced the chances of cancer coming back by about 30%, which is a huge effect, as these things go…
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I had declined radiation after my left SMX for my Stage 2B hormone-positive bc back in 2021. I just couldn't do it - I'd already had 25 lymph nodes removed (3 sentinel ones were positive, but the rest were fine), and gone through dose-dense AC and Taxol, and had agreed to take hormone blockers for as long as was recommended. In my case, my concern was because I didn't want to risk long-term possible damage to my heart, since mine was in my left breast, and my radiation onco had mentioned that because of the location of my breast cancer, I would also risk damage to 30% of my left lung. It was a tough decision, but one that I was willing to accept the consequences of. I'd met with 3 dfferent medical oncologists to discuss this decision in-depth… one tried hard to change my mind, and 2 others felt that I was really in a grey area, and that the strong chemo, ALND, and long-term hormone therapy would get me to approximately 13% chance of recurrence risk (as opposed to 5% chance of recurrence risk if I added radiation, and even though radiation was "recommended", they did not discourage my decision to decline. I'd decided that that 13% chance was just fine enough for me.
At the time I'd made my decision (2021), the SUPREMO trial was already in progress - this was an international trial that would measure over 10 years, whether post-mastectomy radiation offered significant additional benefit for early-stage patients with hormone-positive, HER2- breast cancer with up to 3 positive lymph nodes, and whether it may be okay for such patients to skip radiation. I'd believed that if patients with the same stats as myself were being offered a "no radiation" arm in this study, it might then be considered safe enough for me to decline it myself. If the study concluded that radiation really DID offer significant benefit, and I were to experience a recurrence at some point in my future, THEN I would accept radiation at that point, but not now.
Well, lo and behold, last year the trial reached its end point, and in November the findings were shared that post-mastectomy radiation did NOT provide overall survival benefit over those who did not receive it. We've also come a long way with targeted systemic treatments, which one of my oncologists mentioned would actually play a more important role in preventing a recurrence / progression than radiation would.
If you're really on the fence with radiation, it may be helpful to ask your oncologists what your estimated statistics for recurrence would be, and see if you're comfortable with those numbers.
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