I want to refuse radiation after bilateral mastectomy.

@rkelmarie

I just wanted to chime in and say I was exactly where you are back in December deciding on radiation after double masectomy.As you stated I was also one of the ones who DIDN'T have chemo before surgery and with the location of my tumor I had to have radiation after surgery.I was very apprehensive about it but here I am now 2 weeks afterwards and I can honestly say all the horrible things you read about didn't happen.my radiation oncologist designed my individual plan to where they were able to avoid my heart and lungs.The worst part for me was I burned and shed like a snake but believe or not it WAS NOT PAINFUL it was just itchy and more like dead dry skin being exfoliated is the best way I can describe it.PLEASE DONT BE AFRAID to go thru with the radiation I feel good now knowing I thru the book at this cancer.Please feel free to ask me any questions you need answered BEST WISHES. p.s. we are close in age so I completely understand your concerns

I had 33 radiation treatments and had very little burning and just slight fatigue halfway through my 33 treatments. I do know women who were not as fortunate. I felt the same way about chemo that you do about radiation. I heard the horror stories and I prayed I wouldn’t have to have it. I didn’t thankfully.

Regardless you do what’s best for you. After all it’s your body and your life.

Diane

I’m 72 years old with a long history of breast problems. Was treated for left breast her2neu in 2013 at the Lineburger Cancer center in Chapel Hill, NC. I tend to research issues to death. I never had to have chemo, but I had 7 weeks of radiation. If I ever had to have it again, I would decline it and let the chips fall where they may. I have fair skin and blue eyes. After the first treatment, I was the color a raw roast with blisters. I got bad chills and it was so taxing on my system, I looked in the mirror several hours later and I looked like I was 95 years old. I had no clue how i was going to do 7 weeks. I remembered using aloe on a cruise for severe sunburn. I had the same shaking chills. Aloe rescued the problem. I rushed to the store and got the 100% aloe gel. By the next day after radiation my color was more normal and the blisters were gone. So I took it with me to my radiation appointments and at the end, daily, I would go to the ladies room and slather it all over. I really thought I had sailed through until about three years later, I developed cement hard scar tissue, the size of two fist. I had lost 3 neg nodes. I have lymphedema in that left arm and Im considering having that scar tissue blob removed, which means I will lose that breast that was reconstructed with a abdominal free flap in 1993. The blob cuts off my circulation when I sleep on my left side. It is so pressure packed it feels like the breast wants to explode. I also have developed a chronic wet cough. I’ve never smoked in my life. I’m neg for lung cancer and gastro endoscopy shows no related problems. Basically, if your put a pork chop in the microwave on high for 30 minutes, that’s what uour breast tissue is like. Furtherest thing from quality of life you can imagine. Radiation....the gift that keeps on gIving.

I heard that Duke and The Cleveland Clinic now offer a single radiation treatment that is delivered only to the area of the removed cancer during your surgery. I think they roll the machine into the OR while you’re asleep. I’d consider that, but I’d pass on the 7 week protocol where they hit your whole chest area if the doctors can tell you favorable odds for skipping it.

Best of luck. Remember, the only thing any of us can do is make the best decision we can based on the info we have at the time. Often, those answers are based on the medical facility where the questions are being asked.

A few years ago, a Cleveland Clinic researcher developed a vaccine for her2nru. We all need to be writing letters and demonstrating in the streets to have that option made available. It smacks of big pharma being able to make more from chemo.

Take care,

Lafybug531

Rkelmarie, why are you choosing the bilateral mastectomy? Pure curiosity on my part. I was offered double but in the end, chose to leave the healthy side alone. Some of what factored in my decision was limited change in risk for cancer recurrence with a bilateral but twice the risk for surgical complications as well as risk that the flap on the "good" side would be the one that failed. I'm not questioning your decision, simply wondering how you got to it. if you will share. Not a problem if you don't want to.

radiation was harder for me than chemo but I don't regret it.

Let me start with I would not have done anything different from what happened. That said, I agree with radiation the gift that keeps on giving. It's not the skin you have to worry about, it's the damage to everything else. Ribs, shoulder, nerves and it can significantly impact reconstruction. I could not go into treatment without doing everything I could to prolong my life so I would do it again. I too hated the idea of rads... hated it every time I got on the table, but for my peace of mind it's been worth it.

Everyone, I want you to be aware of the option of PROTON rads. There are only 22 centers in the USA that offer protons; they are less common and less known about and rather different.

Proton Rads are more exact, as the protons can be programmed to STOP so they release their energy in the site of the tumor and they do not pass through the body to exit. Many people are here for radiation to unresectable tumors, though there are others like me for normal breast rads. I had a left sided TNBC, and I am covered. I think because protons are less well known about they are willing to work with you to fill their slate (they reduced my copay).

With protons there is far less exposure to healthy tissues, so you still get reddened skin on the front but the heart, lung, shoulder/back are all spared. It's a great option that I am doing right now. I am on 17 of 28. Like many of you, I had a lot of fear about radiation damage, but even MORE fear about Mx when a lumpectomy was an option and I had a pCR from chemo.

I have Obamacare Gold plan and this center, Procure in NJ (which is out of state for me), has been wonderful... they worked with me and reduced my copay so it was much more in line with what I would pay for regular rads, for example. One day there was a power outage and they bought the whole lobby pizzas. ALL they do is proton rads so they have a very organized, efficient system. Great customer service and very humane, thoughtful and kind personnel. I give them an A+.

I also looked at UMD which has a "Ronald McDonald"-type hotel that is very cheap where out-of-area patients can stay. Several centers have non-randomized clinical trials going on (if insurance won't pay). I chose here because I have a lot of loved ones in NYC and thought being near people I know would be better.

I was diagnosed with DCIS in July 2009. MRI showed a potential area of 6 cm. I decided to have a bilateral so that I would prevent things in the future.

Pathology, unfortunately, showed what you see in my signature. I had a macromet (3mm) in the sentinel node.

Had chemo, then axillary lymph node dissection. They wanted to do radiation after that. I refused.

After a big argument with my BOS, in which many tantrums were thrown (by both of us), we compromised on no rads if my ALND comes back negative. It did. So I didn't have radiation.

I am not saying you should do the same. Just sharing my story.

Now, the thing is, are you going to have the node dissection? My thought was, if the nodes are gone, what are they going to radiate anymore? Also, I took into consideration my other stats, like negative lympho vascular invasion, Ki-67, etc.

But if you are NOT going to have ALND, be aware that no imaging can give you a 100% clear. So you won't know if it may have traveled or not.

And the most important thing, until you get the final pathology from the mastectomy, any decision you might take is unfounded and lacking important information to consider.

ratherbesailing, The anecdotal evidence is good, though... and stuff like brachial plexopathy won't happen if the proton does not pass through your shoulder as it exits.... so that was enough for me. They are still proving whether or not the cure rates/ long term stats stack up. I as willing to play in the margins there as my MO and BS both thought it was equally good based on their personal patients experiences

JoE77, honestly, nothing means you're free of cancer. I just evaluated the pros and cons and considering how.much higher my risk of lymphedema would get with both ALND and radiation, I said pass.

edwards, I had a macromet not a micromet (that pesky difference of 1 mm). That, and the stage and grade, made the recommended treatment to be chemo.

Edit to add. Apparently at about the 10 years mark, several studies have shown that T2 patients with singular macrometastasis somehow start getting a poorer prognosis in terms of recurrence and metastases.

You should not feel forced into radiation. I felt really strong armed first into getting a mastectomy but deep down I felt I should it and do reconstruction. Then the oncodx score came back and I was strong armed by everyone to do chemo. My gut said "say NO", and I refused chemo. What a relief I felt it was the right decision and still do almost 8 years later.

I was in a very similar situation, although my tumor was smaller (2.3 cm) and I didn't get chemo based on Mammaprint testing. I chose a double mastectomy specifically to avoid radiation. But then they found 2 positive nodes (1 macromet, 1 micromet) and did an ALND.

I consulted with several ROs. They acknowledged I was in a grey area, but recommended radiation. I opted out because I was very worried about lymphedema getting worse (I had 32 nodes removed), as well as other radiation side effects.

2 years later I had a local recurrence at the needle biopsy site just under the skin. I had surgery to remove it and am now doing 32 sessions of IMRT. I don't spend a lot of time looking back, but I do believe that if I'd had radiation I wouldn't be in this boat. I wish that in my original surgery, they had not done the ALND and had referred me directly to radiation.

That said, I made the best decision at the time based on the information I had. You need to do the same for yourself and be comfortable with your decision. I played the odds and lost. But I knew what the risk/benefit equation was and I was okay with it. And I didn't take a blind gamble. I spent a lot of time researching studies and recommendations and discussing them with my dad and sister (a BS and PS, respectively).

I'm still nervous about the long-term effects of radiation, but I'm getting IMRT, which has less adverse effects (proton radiation, as I understand, is not an option after mastectomy, only lumpectomy. Although I think they're currently doing a trial at MD Anderson). I'm also going to talk to my RO about taking pentoxifylline + oral vitamin E for at least 6 months following radiation. There's research showing it can help prevent radiation-induced fibrosis and capsular contracture.

I would also say that it's important not to conflate chemotherapy and radiation therapy. Chemo is a systemic treatment (and chemo doesn't work as well or completely on slow-growing ER+ cancers as it does on other, more aggressive types). Radiation is targeted. There is nothing better than radiation for ensuring there are no cancer cells left locally.

Hi Mellee, I am sorry you had a local recurrence. I was in the similar situation (1/3 nodes positive after mastectomy), but I declined ALND and chose 33 rounds radiation and more chemo. Lymphedema is just more devastating than anything else, and I know ALND + radiation will make the change of getting lymphedema higher than 50%, if I remember right.