Radiation VS Mastectomy

It certainly can be stressful to get different opinions. Was one of the doctors a second opinion? It is arduous to get a third opinion, but might be worthwhile.
If both options--radiation and mastectomy--seem equally valid in terms of outcome you could decide based on what you prefer. How did you tolerate radiation the first time? A mastectomy may lead to additional choices, such as reconstruction or not, etc. This kind of choice is highly personal.
I've found it helpful to kind of draw the choices out on a piece of paper, with branching lines "if this/what next" and "if that/what next."
I hope you get some useful feedback here, and feel free to stay in touch as decision making progresses.

I did great with first round radiation. I’m concerned about heart damage and more rib pain from a second dose. I just don’t want to go through this again. But I’m scared of the surgery too.

If this is a reoccurrence - I'd consider the surgery. Thinking about the actual surgery is terrifying - but with an excellent (well-researched surgeon) you would not believe how manageable it is.

I had a double mastectomy this summer; I reserved the whole summer because I thought recovery would be terrible - I have a low pain threshold. And then a week after my dbl. mast. I felt great.

The point is: a stellar researched surgeon (mine was in DC) knows how to make a recovery less painful; she was absolutely brilliant.

@cjclarke77 Thank you for the reply. Did you do reconstruction? I’m in Alaska and my breast surgeon options are limited. I think I will go with surgery since I do suffer from anxiety. TY

I thought we can’t have radiation at the same location twice. Obviously I’m wrong. If the first radiation doesn’t stop recurrence, then the second one most likely won’t do that either. I have bilateral mastectomy last year and the breast that was radiated two years ago had a thick hematoma. Not really a big problem. My sister had radiation six years before her BMX and she was doing great. Her recovery was quick and painless. She had an excellent surgeon.

I'm sorry you're having to face this difficult decision. I can only talk about my own experience. I've had cancer 4 times in the past 18 years. The first three times I opted for surgery only (mastectomies, lumpectomy). The last time the tumor was right on my chest wall and chemo and radiation was inevitable, as I was told. Plus surgery. I had surgery, then 25 rounds of radiation first, then chemo for 3 months. During the last part (taxol) I had excruciating pain in my shoulder. I learned it was called "radiation recall". Nobody had ever mentioned it to me. After 4 horrible weeks it finally subsided. I recovered, got my energy back and moved on with my life. 2 years after my treatment I started experiencing numbness and burning in my arm. I thought it was lymphedema, started lymphatic massages and using compression sleeves. Over the past 2 years these symptoms have developed into total numbness , loss of muscles and partial paralysis. But the pain is actually worse than having lost the function of my arm. The reason for this is the radiation which stays in the body for the rest of our lives and it keeps damaging tissue. My case is called radiation induced brachial plexopathy, a peripheral neuropathy where the radiation damages the tissue around the nerve that is responsible for all the functions in the arm, thus not allowing it to transmit the information a "normal" nerve would. I also have a "burnt" spot in my lung and and an artery from my neck with tissue change that is a potential hazard for a blood clot which would most likely not end well for me. Nobody educated me about any of this. It's presented as something that has been done for decades and that's how it's done. Period.
If anyone would offer me radiation today I would run as fast as I can. I think it's evil. Yet there are probably thousands of people without any issues. And maybe it helped them.
I'm sorry for the lengthy post, but I want people to know that we're not being told the whole story. I think forums like this one are very important, because they offer valuable real life experiences. In the end we are the ones having to live with the consequences.
If I had a choice I would always opt for surgery. It takes time to heal, it can be painful and maybe a mastectomy feels like losing a part of your femininity. (You don't). But (hopefully) once it's healed, you won't have to deal with so many other, sometimes unforeseeable issues that lessen your quality of life forever.
I hope you will do well with whatever decision you make and you'll be healthy and strong again to enjoy a long peaceful life!

@kvh

I feel for you and these side effects you did not want and have to live with. Even coming from City of Hope in Duarte, radiation was supposed to be in my treatment plan after my chemo than radiation. Yet, i was 100% grateful to the Radiation Oncology Dr i had at the City of Hope. One of his team drs had met with me and had given me an overview. How it works, how often and other details on why it is done. After 30 minutes, the head Dr visited me. He asked me if i had any questions. He covered treatments i had, the type of cancer i have and how radiation would work. Ultimately, he said the cancer i have is one only 2% of the population is diagnosed with. The chance it will work for me is limited. He said after 15 minutes of conversation that if I were his family, he would tell me not to do it. The lifelong side effects could be far worse than the possible 2 years of life i would get from completing it.
Hering your story @kvh, I hope you have a medical team that is helping you ongoing.

Pls ask your doctor: Would having a mastectomy remove the fear of having it recur? I had a mastectomy in 2023, I had no choice since tumors were scattered throughout the right breast so they couldn't do a lumpectomy. Now I worry about the cancer coming back in the other breast. I wish I had both of them removed at the same time. The surgeon didn't give me that option. I asked, but was told they don't remove good tissue.. For my piece of mind, I wish I had a double.

Get a third opinion.

I was given a choice between lumpectomy and radiation or mastectomy. Invasive ductal carcinoma in one breast and DCIS in the other. My breast surgeon said the rate of recurrence would be the same. But I considered the pathology from my breast biopsy which showed the cancer cells were grade 3 and a high Ki-67, i.e, the cancer cells were aggressive. I elected the double mastectomy based on the pathological findings more than the clinical finding of clinical stage.

I don't know if you have similar information but mention it as something to consider if available.