On the fence about Radiation....

Hi Lynae23,

I'd be happy to summarize my decision not to take radiation-- but please understand this is only my personal journey. I went from diagnosis to lumpectomy to Arimidex-- bypassed chemo and radiation. In makinag a decision about radiation, I wanted to know the latest national cancer guidelines regarding radiation and do a risk/benefit analysis for myself. I had been "warned" that radiation would result in a 50% reduction in risk from cancer recurring -- but 50% of what?? Here's what I found:*

NCCN guideline 2.2017 states that risk reduction from Radiation therapy in patients over 70 is modest. (I was 74 at time of Dx)

• Omission of radiation therapy has been associated with a modest increased risk of local recurrence (4% vs. 1% at 5 years; 10% vs. 2% at 10 years); However there has been no difference in Overall Survival (OS) or metastatic disease
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• In patients 70 years or older, omission of radiation therapy can be considered for patients with stage I estrogen receptor-positive breast cancer who undergo a lumpectomy with negative margins and who are likely to complete 5 years of endocrine therapy. ( I fit those parameters exactly,in addition to which my tumor was only .7cm, with clean margins, ER+/PR+ / HER-, stage pT1b, pN0)
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• Risk reduction: the often-used used statistic is "20% risk of recurring cancer without radiation". My RO then noted that if you adjusted that 20% stat for those taking hormonal/endocrine therapy, that 20% would go down by 50% to 10%. It would then drop further due to my age and nature of my tumor-- so she agreed that risk of recurrence in my case without radiation may indeed by only about 5% after 5 years, assuming I finish arimidex. (which I plan to do )

I looked at the 5% risk over 5 years & the fact that I have congestive heart failure and breathing problems, i decided radiation wasn't worth the risk.

So that's my story-- you need to lay out your own story so that if times get rough and you have recurrence, you aren't going to beat yourself up about the decision you made re: radiation.

Hope this helps. Best wishes for better days.

The main reason many women undergo mastectomies versus lumpectomies is so that they can avoid the potential debilitating effects of radiation. It's unbelievable how many doctors gloss over the entire process as if it's just a minor inconvenience to your day.---oh yeah, you'll feel a little fatigued but otherwise no biggie! God forbid something should happen and then they feign ignorance as though you're the very first to experience the symptoms or maybe it's all in your head??! Damage to heart and lungs is permanent and it doesn't happen immediately. I would get a second or third opinion because only a medical professional can look at your surgical pathology report and give you an educated guess. Of course, there are a lot of studies online, but you know, it's a steep learning curve for the majority of cancer patients.

Sarasota lady....thank you for info. I am soon to be 81, and I declined rads too...due to fear of heart and lungs damage...already have valve problems and breathing issues...but! I also cannot tolerate hot flashes from tamoxofen, nor joint pain from Arimidex....so doing nothing. My onco score was 8..low risk so no chemo. Just had lumpectomy in October. Nothing else. Sometime I worry because my tumor was 2 cm. And grade 2 because tiny amt. Cancer found in one node of three...sentinal.

I am coming to this party kind of late. But I really wish I had known more about radiation before I agreed to it. I feel as if the wool was pulled over my eyes. If some car dealer selling you a car misrepresented facts and figures the way doctors do about risks and side effects of radiation, they'd go to jail. It is criminal that we have to be our own advocates and are left pretty much on our own to wade through the mire of finding truth and reality in a pool of murky, threatening, scary numbers.

I am recovering from radiation and it is NOT a walk in the park. For me, at 53, I 'may' live long enough to be seriously affected by the lung and heart damage I received. In fact, when I saw my CT scans showing my planned radiation path I was shocked at how much of my lung was taking a blast and said as much to the radiation oncologist. She said due to the size of my boob, the shape of my chest and rib cage, which is very large and very round (well sprung in horse terms) I have big lungs that fill this massive ribcage and thus a lot more of my lung is in the way. And took a serious blast. No one explains how your unique physical build can affect how much heart/lung damage you do or do not get. Someone should have been perfectly clear about that with me. No one was. I was warned that usually a small portion of the heart and lung get radiated. No one bothered to bring forth the fact that in my particular case, because I am built like a quarter back, my monster ribs and monster lungs REALLY took a blast. That is, in my mind, negligent medical care. An omission that withheld the truth.

Another point that they need to make plain before radiation, and fail to , is that cancer in the breast does not kill you. Cancer setting up shop somewhere else in your body does. Radiation does nothing to save you from mets. Nothing. So is taking the risk of preventing another in-boob cancer really that effective at prolonging life? Is it worth the other damage radiation will do to prevent a local recurrence which, if caught early, may never threaten my life in a real way?

I look at my boob. It is really pissed off. It is all blotchy and peeling and the skin is shabby and mottled. Age and gravity are not kind to big boobs. But biopsy, surgery, then radiation ... if my boob never speaks to me again, I deserve it. As it is the nipple won't make eye contact, it's looking off the other way in protest. My boob hurts. Like inner bits are hardening up to rock like lumps. Suddenly sleeping is uncomfortable. And Hub, when he (forgive the bluntness) climbs on top OUCH! Yikes! It feels like rocks are being pressed into my body. I think radiation has really had a bad effect on inner scar tissue. (my lumpectomy had complications and I have a LOT of scar tissue, that was also widely visible in my CT scan that the rad onc showed me).

I've had time to think and probably need more time to think. Things are still 'settling'. But right now I feel processed as opposed to treated. I do not feel I knew enough going into radiation. Had I known more I might have said no.

I'm really sorry for those who had such a rotten experience with radiation. At the same time, I have to ask Runor - If you were that shocked at the path of the radiation, why did you not either refuse it or have a more thorough discussion of effects with your RO? You said that "someone should have been perfectly clear" with you. It sounds as though you did have the opportunity for that discussion and perhaps didn't go into it as deeply as you wish you had in hindsight.

I'm not trying to blame the victim. I understand how hard it is to grasp the reins when everything is happening so fast.

Lumpectomy alone with radiation is not as effective - that's pretty well established. I would much rather have been able to avoid radiation but it would have been stupid (in my case) to do so. It wasn't a perfect experience but it sure beats a mastectomy (for me) and it was nowhere near what some have described. (My skin did great - it never even reached the point of peeling and no one looking at it 3 months later would have been able to see any difference. And I had a LOT of radiation. Not a walk in the park but better overall than anticipated. )

As for those who are commenting based on experiences from years ago - the technology and techniques have changed dramatically and are constantly evolving. Past experience is not as relevant as we might think today.

I'm not saying it's a great experience but I would hate for someone who really would benefit from radiation to read all these posts and decide against it based on the negatives here. Each person's experience will differ, for sure. It's up to each of us to ask, ask, ask and then make a decision, remembering that there's no perfect solution; none of the options are choices we'd want to be presented with. We just have to do the best we can with what we have to work with.