Opting out of radiation or chemo

I was diagnosed in 2003 at the age of 56 with DCIS in my right breast. I was advised to have a lumpectomy followed by radiation - standard procedure then. I requested a wide excision for the lumpectomy with no radiation followup. I had done a bunch of research into various studies that showed while recurrence was reduced with radiation, the difference in lifelong mortality rate was insignificant. I didn't like what I was reading about long-term effects of radiation. Having surgery with a wide excision area (well beyond margins) was expected to reduce the chance of recurrence. Nine years later, I was diagnosed with DCIS in a different part of the same breast. Because of the time lapse and placement of the new occurrence it was not determined to be a recurrence. I opted for the same procedure as before - wide excision lumpectomy, no radiation. Four years later the DCIS was back in the same breast and also in the left breast, with a bit of stage one (invasive) in the right as well. Chemo for 6 months and 5-10 years of estrogen therapy was recommended (the standard) - whether I chose lumpectomies or a bilateral mastectomy. I opted for a mastectomy (I was 69 by then) without further treatment. My breast cancer intake doctor thought a mastectomy was a drastic solution to a low level cancer, but I thought the treatments felt more drastic. My team of 5 oncologists agreed that if I had a bilateral mastectomy without the followup treatments, my chance for recurrence was not significantly greater than with the treatments, though a recurrence would likely mean a metastasis to other organs, and thus life-threatening. Once again I opted for what I considered to be quality of life. I chose a bilateral mastectomy instead of possible problems down the road from the harsh chemicals. I also chose not to go through the turmoil of reconstructive surgery. So I'm back to the flat chest of my youth with some scarring. It's been six years since my mastectomy. So far so good, though I'm not saying my decision was right for everyone. Every woman has to make her own decisions about her life and health. It's scary and it's tricky. Fear and pressure can be a lot to handle. Life is a risk!

I was diagnosed in 2003 at the age of 56 with DCIS in my right breast. I was advised to have a lumpectomy followed by radiation - standard procedure then. I requested a wide excision for the lumpectomy with no radiation followup. I had done a bunch of research into various studies that showed while recurrence was reduced with radiation, the difference in lifelong mortality rate was insignificant. I didn't like what I was reading about long-term effects of radiation. Having surgery with a wide excision area (well beyond margins) was expected to reduce the chance of recurrence. Nine years later, I was diagnosed with DCIS in a different part of the same breast. Because of the time lapse and placement of the new occurrence it was not determined to be a recurrence. I opted for the same procedure as before - wide excision lumpectomy, no radiation. Four years later the DCIS was back in the same breast and also in the left breast, with a bit of stage one (invasive) in the right as well. Chemo for 6 months and 5-10 years of estrogen therapy was recommended (the standard) - whether I chose lumpectomies or a bilateral mastectomy. I opted for a mastectomy (I was 69 by then) without further treatment. My breast cancer intake doctor thought a mastectomy was a drastic solution to a low level cancer, but I thought the treatments felt more drastic. My team of 5 oncologists agreed that if I had a bilateral mastectomy without the followup treatments, my chance for recurrence was not significantly greater than with the treatments, though a recurrence would likely mean a metastasis to other organs, and thus life-threatening. Once again I opted for what I considered to be quality of life. I chose a bilateral mastectomy instead of possible problems down the road from the harsh chemicals. I also chose not to go through the turmoil of reconstructive surgery. So I'm back to the flat chest of my youth with some scarring. It's been six years since my mastectomy. So far so good, though I'm not saying my decision was right for everyone. Every woman has to make her own decisions about her life and health. It's scary and it's tricky. Fear and pressure can be a lot to handle. Life is a risk!

So sorry to hear that you have had a recurrence! We have no guarantees with BC! What is the treatment for you now? I hope you can quickly remove the tumor and get back to maintenance. 🌸

We’re you hormone positive and, if so, did you you take Aromatase inhibitors?

When I have my MRI every year (between mammograms), they examine BOTH the existing breast and the mastectomy side. This was a surprise to me too, but I was delighted to hear it!

Hello, I opted for a double mastectomy without reconstruction for my LCIS. I am starting to wonder whether I made the right decision due to not being able to catch future cancers at their earliest stage, which mammograms and MRIs would be able to allow for someone who didn’t go through mastectomy. You mentioned that if you were to have a cancer recurrence after the mastectomy, there is a good chance that it would be caught at a late stage. This is scary. Is there anyway to catch recurrence early for people with double mastectomy without reconstruction. Is routine ultrasound effective in catching anything brewing. Can we still do MRIs?

@anjalima Thanks for yr commiseration
I had mastectomy last July and axillary dissection
Am healing well but still some nerve pains
I had not opted to take the AI the first time but am doing so now.
According to the stats I guess I am in that unlucky 2 to 3 percent where bc reoccurs locally after rad!

I have been on AI Anastrozole for one year… with mild totally manageable joint discomfort mitigated by yoga stretches and walking. I don’t even need a Tylenol… and I’m 72 so joint discomfort is not unusual in any case. Also I did a one year DEXA to monitor bone density and I have held my numbers from pre AI.

These decisions we make are so challenging. I opted out of radiation because I was concerned with those side effects! I’m hoping I made the right decision there. But as I’m 99% ER + I knew that AI was the best option for me.

Not everyone has side effects or unmanageable side effects. I hope you are one of them. 🌸

@anjalima mine is also 98 percent ER and so far no side effects from the Arimidex (4 months of every other day) at 71 yrs
I wonder if our age has something to do with the lack of side effects

Interesting… I have thought of that… further from menopause.

May I ask how/why every other day? Intrigued.