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VDC · 11-16-2016, 09:20 PM

I have hesitated to post this because I know that my "bumps" and decisions don't in any way compare to what many of you have and are facing.

However, I changed my mind yesterday because I realized that there may be other's "out there" who are in my boat and are silent for the same reasons I have been silent. (how dare we speak about our petty little problems in contrast to what most of you are facing?)

As some of you may know, protocol treatment for DCIS (her2 + and HER2- both) is surgery followed by radiation treatment. I was good with it until I started asking questions....and then I wasn't so "good with it." Eventually I sent the following message to my radiation oncologist asking if my assessment was correct. He agreed with my entire assessment.

I understand my expected rate of recurrence to be 30% without radiation. IF the rate of recurrence without radiation were 30% then the odds of staying disease free would be 70%.

If radiation therapy were given then the rate of recurrence should be about half or 15%. What this means is that 70% of women would remain disease free with or without radiation and 15% of women would have a recurrence with or without radiation. So, for 85% of women radiation makes no difference at all. Radiation WOULD then make a difference for the remaining 15% of women. My radiation oncologist added that if radiation is given the TIME to recurrence is often longer.

My understanding is that radiation now would mean my only option in the future was mastectomy. However, if radiation were not given now, then lumpectomy and radiation might be possible at the time of recurrence. (although I think YOU said radiation can be given now and later?) Considering that 15% of women would recur even with initial radiation, this is significant to me. Particularly given my position on retaining my breast!
I also asked about the “odds” of long term side effects such as radiation induced fibrosis. There were no odds to be given so I asked about risk factors for heightened fibrosis. Among those given to me were smoking (not a problem for me), autoimmune disorders (not a problem), heightened inflammatory response (THIS IS A PROBLEM for me), and multiple breast surgeries. I then asked if larger lumpectomies might have the same effect as multiple breast surgeries. She thought a large lumpectomy might increase the risk of fibrosis just as multiple breast surgeries do. This is a concern to me as well since my lumpectomy removed over 10 cm of tissue 7.2 cm of which contained DCIS. The radiation oncologist also added that there is a genetic disposition to fibrosis as well but we have no way of determining our risk of developing fibrosis.

There is an increased risk of invasive disease if radiation therapy is not given. (15% versus 7.5%) Certainly invasive cancer changes the entire picture and is not territory that I wish to enter! But are the negatives of radiation worth the 7.5% reduction in invasive cancer? Particularly if I am especially vigilant in follow up and surveillance? These are questions I ask myself and ultimately only I can make that decision.

After discussing all of this with my radiation oncologist I asked about my rates of dying with and without radiation treatment. Oddly enough, my rates of death are the same if I receive radiation treatment and if I don't.

I made the decision to forgo radiation treatment. For 85% of women with high grade negative HER2+ DCIS it makes no difference if they receive radiation treatment. 70% will remain cancer free and 15% will have their cancer come back (half as DCIS and half as invasive) The other 15% are the only women for whom radiation therapy will help. And, I prefer to keep my options open for therapies in the future. ....either way, my chances of dying from this disease are the same. Imagine that?

I asked my radiation oncologist WHY radiation is considered protocol considering these statistics. He said it is because the ONLY thing considered when decided on therapies is the rates of recurrence. Nothing else matters in the protocols. Quality of life doesn't matter. Period. He was in agreement with me deciding to forgo radiation treatment and he would have supported treatment as well. He truly believes either choice is correct.

I then went to another institution and received a second opinion. She was much more insistent on radiation therapy but when I asked my questions and told her what I believed to be the accurate statistics, she agreed that my information was indeed correct! She agreed with ALL the statistics. But she also said that it was her job to promote protocol.

Funny how when I started asking questions, what was once an easy decision became a much harder one. And, ultimately I chose to go against protocol.

Interesting indeed.

11-16-2016, 09:20 PM	#69
VDC Senior Member Join Date: Jan 2016 Posts: 122	Re: I think I'm in trouble! I have hesitated to post this because I know that my "bumps" and decisions don't in any way compare to what many of you have and are facing. However, I changed my mind yesterday because I realized that there may be other's "out there" who are in my boat and are silent for the same reasons I have been silent. (how dare we speak about our petty little problems in contrast to what most of you are facing?) As some of you may know, protocol treatment for DCIS (her2 + and HER2- both) is surgery followed by radiation treatment. I was good with it until I started asking questions....and then I wasn't so "good with it." Eventually I sent the following message to my radiation oncologist asking if my assessment was correct. He agreed with my entire assessment. I understand my expected rate of recurrence to be 30% without radiation. IF the rate of recurrence without radiation were 30% then the odds of staying disease free would be 70%. If radiation therapy were given then the rate of recurrence should be about half or 15%. What this means is that 70% of women would remain disease free with or without radiation and 15% of women would have a recurrence with or without radiation. So, for 85% of women radiation makes no difference at all. Radiation WOULD then make a difference for the remaining 15% of women. My radiation oncologist added that if radiation is given the TIME to recurrence is often longer. My understanding is that radiation now would mean my only option in the future was mastectomy. However, if radiation were not given now, then lumpectomy and radiation might be possible at the time of recurrence. (although I think YOU said radiation can be given now and later?) Considering that 15% of women would recur even with initial radiation, this is significant to me. Particularly given my position on retaining my breast! I also asked about the “odds” of long term side effects such as radiation induced fibrosis. There were no odds to be given so I asked about risk factors for heightened fibrosis. Among those given to me were smoking (not a problem for me), autoimmune disorders (not a problem), heightened inflammatory response (THIS IS A PROBLEM for me), and multiple breast surgeries. I then asked if larger lumpectomies might have the same effect as multiple breast surgeries. She thought a large lumpectomy might increase the risk of fibrosis just as multiple breast surgeries do. This is a concern to me as well since my lumpectomy removed over 10 cm of tissue 7.2 cm of which contained DCIS. The radiation oncologist also added that there is a genetic disposition to fibrosis as well but we have no way of determining our risk of developing fibrosis. There is an increased risk of invasive disease if radiation therapy is not given. (15% versus 7.5%) Certainly invasive cancer changes the entire picture and is not territory that I wish to enter! But are the negatives of radiation worth the 7.5% reduction in invasive cancer? Particularly if I am especially vigilant in follow up and surveillance? These are questions I ask myself and ultimately only I can make that decision. After discussing all of this with my radiation oncologist I asked about my rates of dying with and without radiation treatment. Oddly enough, my rates of death are the same if I receive radiation treatment and if I don't. I made the decision to forgo radiation treatment. For 85% of women with high grade negative HER2+ DCIS it makes no difference if they receive radiation treatment. 70% will remain cancer free and 15% will have their cancer come back (half as DCIS and half as invasive) The other 15% are the only women for whom radiation therapy will help. And, I prefer to keep my options open for therapies in the future. ....either way, my chances of dying from this disease are the same. Imagine that? I asked my radiation oncologist WHY radiation is considered protocol considering these statistics. He said it is because the ONLY thing considered when decided on therapies is the rates of recurrence. Nothing else matters in the protocols. Quality of life doesn't matter. Period. He was in agreement with me deciding to forgo radiation treatment and he would have supported treatment as well. He truly believes either choice is correct. I then went to another institution and received a second opinion. She was much more insistent on radiation therapy but when I asked my questions and told her what I believed to be the accurate statistics, she agreed that my information was indeed correct! She agreed with ALL the statistics. But she also said that it was her job to promote protocol. Funny how when I started asking questions, what was once an easy decision became a much harder one. And, ultimately I chose to go against protocol. Interesting indeed.