Considering opting out of radiation

I never thought my rads were a bad idea. Glad I was able to have the protocol i did, and hope it was enough. If you worry about cataracts, you can always use eye protectors (like those in tanning parlors); and it’s unlikely you’d get scatter exposure unless your neck or clavicular nodes were radiated.

I have had OA in one joint or another (starting with c-spine) since my late 20s. No longer a concern in my knees, as they’ve been replaced; but I do also have it in my ankles, lumbar spine and lately a little in my hips (not enough to require replacements). But though AIs may exacerbate it, it is definitely not a contraindication for them. OTOH, tamoxifen or raloxifene wouldn’t increase my osteopenia, but since my family history is a cardiovascular disaster area, the possibility of DVT, emboli or strokes is too great a risk for me to take. I would also have to discontinue my particular antidepressant (Wellbutrin), as it would interfere with the enzyme pathway by which tamoxifen works. (As for the risk of endometrial cancer, I no longer need a uterus anyway; and the risk of cataracts is no big deal since I need mine fixed anyway). So all in all, AIs are the better choice for me, especially as I’m 11 yrs. postmenopausal.

Merijen, yes, I'm sure my reconstruction and radiation are not pairing well together. If you do not have reconstruction (with implants), your experience will very likely be different. My reconstruction was done 4 years ago and I had no problems with my implants until radiation (3years later). I can't speak for the effects of radiation alone.

I feel like I want to share just a bit about my not very interesting experience with rads just to balance out some of the negative. I had the typical rads, in a typical situation, lying on my back. I held my breath each time. The process was not terrible. I had some soreness and discoloration but here I am on the anniversary of the day before I started rads and I am fine. My boob looks no worse for the wear (maybe just slightly perkier). Small lumpectomy scar is all that is left. Going to the cancer center every weekday was a bit of a hassle but it became a routine for me and my partner. Also, the staff was just lovely to me. It was tiring at the time. I remember a wise woman here described it as, each day someone hands you a heavy rock to carry and pretty soon those rocks add up. That's how it felt. I was very very tired. But it was 100% do-able and in terms of ways to knock out fast growing cells, I felt good about it. My RO did not oversell the thing to me. He said straight up that 1 in 3 women will benefit and for 2 in 3 it is overkill. But there is no way to figure out which third you're in. I have a 12 year old wanted to do everything I could to be around for him as long as possible.

I had very little "lifestyle" changes to make. I have always eaten healthy. I have always exercised nearly every day. I don't smoke. It isn't always the case that there is some "reason" a person develops cancer. It is NOT all in our control. These things happen: Some cells in your body decide to try out a new way of behaving.

Anyway, just saying, radiation is not always a huge disaster...

I was also considering opting out of radiation. I have DCIS pure DCIS confirmed on two different pathology opinions. Low to intermediate grade. I sought out 3 different surgical opinions and did extensive research on my RO. He was recommended by my surgeon from UPENN. After much research and soul searching and even with a low oncotype score, have opted to have radiation. I was luckily, eligible for the shorter course. Someone here mentioned seeing their mother struggle with an inhaler 10 years post rads. Well I would give my right arm to have my mother here. I lost her to stage 4 breast.CA, when I was 36 years old. And if one thinks seeing their mother using an inhaler is devastating.. You couldn't even fathom the devastation of watching a person die in the most horrific way possible. She had it everywhere, brain, bone and liver. As an RN with a background in oncology, I knew when there was liver involvement...that was going to be it. She died 2 months later. (I'm not saying this to alarm anyone with stage 4 CA, because treatment modalities have changed since 2004.) She lasted 1 year, from her initial dx. She missed her son's wedding, the birth of two grandchildren and seeing her older grandchildren graduate college. She was of the mindset. " I'm not going to look for trouble" and when they found the lump, it was aggressive and she was riddled with cancer..everywhere. She thought she could use the mind over matter approach, and didn't believe in mammos etc. She said " my body may be killing cancer cells, and I just want to focus on that". She had surgery and palliative radiation, but it was too little too late. I had to push her in a wheelchair and watched my beautiful mother wither away, become jaundiced and die. She suffered terribly. It was an absolute nightmare. ( I am sparing the horrible details of stage 4 breast .CA, but it was an absolute catastrophe ) Now, I would give anything to have her here. The inhaler would have been a blessing to me. ( And to her. ,) I am 48 years old, and am now throwing everything I can at this. My risk of recurrence is only 10 percent according to my oncotype. With radiation that is halved to 5 percent, with Tamoxifen, that is halved to 2.5 percent. Now, in 20 years after doing prone position and being scrupulously mapped out to ensure there is minimal risk to healthy tissue, I wind up with an inhaler, I will consider myself blessed. I'm not rolling the dice with the Emperor, I saw what happens in vivo with that crapshoot. And it was horrific. Just my two cents.

I am the person who started this thread because I was concerned about side effects of radiation. I opted to not do it, based on extensive research and thinking, and I still feel very good about that choice. I have received a lot of support from friends and family and the alternative therapies I am doing have me feeling better than I've felt in a long time. Time will tell if it keeps me alive.

The biggest thing I've learned since I got breast cancer is that every woman must make the choice that's right for her. We all have different types of tumors, lifestyles, prognoses, backgrounds etc., and that means we are dealing with different decisions. I know that for my situation, dealing holistically with the situation that lead to my cancer was the best thing I could do for my body.

I refused to make my decision based out of fear. And in so doing I accepted my mortality. I understand that my experience may have been different if my mother had died of breast cancer in a similar fashion to that other woman. But the fact is that she did not, but she did have debilitating side effects from radiation, including use of an inhaler. My mother supports my decision not to do radiation wholeheartedly. (I think it's also very interesting that doctors were angry at my mom for not doing chemo 20 years ago. We now know that the kind of tumor she and I had does not respond to chemo and getting chemo would have actually raised her risk of death had she done it. Nonetheless they made her feel like a terrible person for not doing it.)

I now know three women closely (mother in law, best friends mom, and colleague) who did full radiation and chemo and now have local or systemic recurrences. One of these women, 7 years after radiation, may die. I honestly do not believe that doing radiation and chemo is the same as "doing everything you can" to beat cancer and stay alive, and we need to question this idea until people stop repeating it as if its fact, which it most certainly is not.

"Doing everything you can" for most women means radically changing your life. Eliminating stress and changing jobs, totally overhauling your diet and quitting all nonorganic foods, eating mostly vegetarian with 10 veggies a day, getting on a serious supplement and herb schedule that supports optimum health, eliminating sugar and alcohol, getting really good sleep and 30 minutes aerobic exercise a day, surrounding yourself with positive people, claiming and living an authentic and optimistic life, feeling passionate about your work, the list goes on and on. Most people don't want to or can't make all those changes, but the reality is that those changes likely reduce your chances of getting breast cancer again as much or more than traditional treatments, but as one very frank MD explained to me, there is not a single large scale study that analyzes holistic treatment, so there is literally no way to compare it to radiation and chemo.

Thanks for reading and contributing to this thread. And please respect that everyone makes their choices carefully and we do it as well as we can with the info we have. When I was in the middle of making my decision, I wanted to convince everyone to think like me, but I now realize how inappropriate that is. We have to think for ourselves, even if it means making choices that others disagree with.

Kar324, you are entitled to your opinion, absolutely, but if you are going with the scientists on this one, there is actually no science to back up everything you just said, as there have been no large-scale scientific studies on all the alternative modalities you just listed. What is true is that people get recurrences (in chest walls etc) after all treatment approaches, and that side effects and second cancers associated with traditional treatments are poorly studied, if at all.

There is no need to label me or others who choose different treatments than you as "kumbaya" people, this is demeaning and insulting. You can disagree, and you can bring evidence to the table to support your ideas, but insulting your fellow breast cancer patients is a new low. We are doing the best we can to survive with the life experience and research we have access to. Please share information, but keep the sarcasm to yourself!

Curious how long you tried a "watch and wait" approach and what your regimen was?

It is the unknown (and the economics that bias the choices for research) that makes each of us frustrated and angry.

Thank you for starting this thread, AlaskaGal.

In considering the focus of each comment, it struck me that all 3 of us were diagnosed early, which favors all of us for better results to begin with, although without the "final results" for our choices, we are each just making our best guess based on what we know and feel.

I speak from the standpoint of being 14 years out from dx and tx and mixed choices that were made long ago. Because of lack of scientific information at the time, I reluctantly did the treatment with chemo that today would still be recommended by many oncologists despite the more current awareness that my cancer characteristics would not benefit from doing chemo. Rads may have helped me... but I do have radiation necrosis of the affected breast.

IMHO, while better health practices may not work completely for some of us, I have no doubt whatsoever that they do provide additional "insurance" for overall survival, as well as some "insurance" against the development of cancer in the first place in us for as long as it took for each one of us.

A.A.

KAR324,

With your personal background, could you respond to my comment?

"while better health practices may not work completely for some of us, I have no doubt whatsoever that they do provide additional "insurance" for overall survival, as well as some "insurance" against the development of cancer in the first place in us for as long as it took for each one of us."

As someone who is somewhat less constantly exposed to the steady influence of the preferences of medical practice, it is possible that even the emphasis on some practices as simple as kumbaya may actually be enough for an undetermined population.

A.A.

7of9. You illustrate a very important point. Both you and I initially thought what we were doing was " the right thing" at the time. If I could go back in time, I would've listened to the radiologist in May, 2014, and had the calcs biopsied, they would've found my DCIS sooner and I probably wouldn't have had a quarter of my left breast removed and now, radiation. I followed up every 6 months and at the 18 month follow up, more calcs were found in the same quadrant, but a different site. I have always lived and will continue to live, a healthy, organic lifestyle. But I can't emphasize ENOUGH, how that didn't spare me from progression of disease. I noted that you did a prophylactic ovary removal. That has been shown,in many studies, to dramatically reduce recurrence. I wish all of us well in this journey none of us want to be on...

Thank you for this post. I was all set to start radiation tomorrow, but on my pre-marking conference with the radiologist oncologist, he negated all of our previous conversations about targeted radiation, and treatment in the prone position. I fretted all weekend, and I consulted today with my oncologist who will be referring me to 2 other rads to look at targeted, less whole breast, and prone position treatment. The radiologist I had planned on meeting had told me he would map out the two treatment options, but came too lazy to do the prone mapping even though that is my preferred treatment. I saw the diagram on the screen as I was leaving, and saw how much lung was included. I will look further for less invasive treatment.

I, too, was VERY concerned about damage to both heart and lungs, since I had a left-sided cancer. My scans also demonstrated that the heart was entirely out of the field and only a small area of the lungs was involved. Since I had a very close margin on the chest wall, I was willing to potentially deal with some pulmonary issues down the road rather than under-treating the tumor bed.

7of9's advice is spot on. I asked many questions, got a 2nd opinion (out of pocket) just to be sure, and continued to ask questions throughout the 7 weeks of treatment. I also reviewed the port films every week.

In the end, I felt that I had done all I could to be o.k. with the situation while still receiving sufficient treatment and I think that's what we all hope for. I also came out of it with a great deal of both liking and respect for my RO, which I value.

I threw it all at my cancer because I wanted to know that I had done everything I could. If I had skipped radiation and had a recurrance, I would never have been able to get over it. I am now almost 7 years out from radiation--left side too. No problems at this point. I also had the Canadian protocol which was 16 rounds plus a few boosts. It was very doable.

Thanks, Cowgirl13, you said exactly what I wanted to say but felt sort of attacked for. When I said I was glad I had "done everything I could," I was pretty sure it was clear I meant medically, not in-every-way-possible-including-eliminating-exposure-to-all-possible-toxins-forever. I simply wanted to share the end (I hope) of my story, not imply that anyone making a different decision is "wrong." I enjoy reading others' posts when they update their stories with more current information. For me, it came down to peace of mind, just like it did for you. I knew I'd never forgive myself if I skipped radiation and had a recurrence. And I'm in no way implying that others in that situation shouldn't forgive themselves--I just know that I'm extremely prone to self-recrimination and would dwell on it forever. I honestly joined this forum for information and support, and I would never judge anyone for their decisions. I did what was right for me and wanted to share that radiation wasn't nearly as bad as I'd feared it would be (and yes, I know that harmful effects may still emerge). If that's reassuring for some readers, great, and if others make a completely different choice for themselves, of course that's fine with me!

Dx: 07/2015, Stage IIIA, Grade 2, ER+/PR+, HER2- Surgery: 10/1/2015 Mastectomy, Left; Chemo: TC 11/2015-01/2016; Radiation: 02/2016-03/2016

At the time in 2002, one proposed trial for rads using implanted seeds was just on the horizon, but it was east coast and out of my reach. I chose a brand new radiation facility in California, and was assigned to have my care as recommended by the chief radiologist there. My skin did fine but as time went by, I could tell that the lower portion of that breast was hardening inside, and it was painful. So I made an appointment with the same radiologist and flew back to California for that, on my own dime. She had no suggestions as to what the problem might be, and suggested an ultrasound to get a look. I decided that if such an occurrence was that unfamiliar to the chief radiologist, I would have my Seattle surgeon evaluate it, and asked the rads doc to have imaging done in Seattle for me, for my surgeon to review. My surgeon had me get a breast MRI. When he examined me, his explanation was very clear. It was due to radiation necrosis. There was no treatment for that. Over the years the breast grew larger and drooped, and the area of necrosis got bigger. It is uncomfortable to have the breast touched. I haven't been able to find any bras that accommodate breasts of such different sizes. It just came with the package.

One can try to get educated as much as possible, but we aren't rads docs, and trusting the credentials of the facility and the practitioners can be a bit of a stretch.

A.A.

Thanks, Cowgirl13. Having bc doesn't have clear lines as to what is taking things too lightly vs what is taking them too seriously, because each of us is looking at it from a different perspective and different personal situations.

With the vast majority of posters here still being within their first few years or just the first few months of dealing with actual treatment and the hope that it is done with, the "experienced" naturally like to think that is all there is to it.

I've been especially fortunate in many other aspects.

It still bothers me that no one else (i.e., the practitioner) learns from these kinds of mistakes so that there would be fewer others with cancer that have to go through it.

A.A.