Well, as we all know here it's not just about survivability. It's about quality of life. Screenings, anxiety, Doctor visits that never end...

The problem, as the study points out, is that these women are making these decisions from a point of misperception of or misinformation about greater survivability. 36% believed something that is not true.

I see women comment all the time here that they are having a mastectomy to be done with it forever and they clearly don't understand you can have recurrence even so.

This type of study has been beaten to death. Why don't they study something useful.

An educated doctor should inform the woman that mastectomy may/may not (as each case is different) offer which types of benefits.

I bet 90% of the gals here chose mastectomy for something other than the sole survivability aspect. Add to this that studies can be "wrong" (otherwise, BRCA women would not be cutting off their breasts without knowing they WOULD be reaping benefits from that) and maybe the gals that opt for this surgery know in their gut (just like many of us found our cancers withOUT the help of imaging) and proceed with the surgery.

Wallycat I laughed out loud at your comment. I don't know about the other women who chose PBMX, but I for one did not go: "Yipppeee woohooooo cut off my boobs! Yay I'm so excited! Easiest decision in the world!" I'm tired of this study. And they aren't talking about a recurrence in the chest wall, they are talking about removing one spot of cancer with either lumpectomy or mastectomy, and that one decision/action does not improve survivablity with either LX or MX. Okay, got it. I chose LX the first time; now that I need another LX, coupled with my family history and dense breasts, I'm done. And this was the hardest decision I have ever.made.in.my.life.

I fail to understand why women who have made informed decisions regarding their own bilateral mastectomies have a problem with a study or studies that show that a significant number of women are operating out of a position of misinformation or misperception. Time and time again we read on BCO posts from women and men who have incorrect information about their own cancer diagnosis, someone else's cancer, treatment options, etc. I would love to have a dollar for every time I've read "mastectomy means no radiation treatment". However I do not want the dollar if it means that some woman chose a mastectomy over a lumpectomy because she believed this to be the case and then found out post surgery that radiation was still necessary. I'd rather more women be informed of the facts.

The idea that the radiation oncologist did this study to somehow pad his/her bottom line is just another one for the conspiracy theorists.

Diana

Ms. Pharoah -- glad your PS helped you make the best decision for you. It sounds like he/she was really honest and forthright.

Amy -- I was treated like a ticking-time bomb, too. The Breast Care Center took one look at my tumor size and grade and had me scheduled for appointments with the BS and MO very quickly. Fortunately, they recommended neoadjuvant chemo -- five months of it. That gave me a long time to think about whether or not I wanted BMX or LX. But, many ladies get their surgery dates pretty quickly after diagnosis.

My two cents as someone who had a bmx and considers myself informed about that decision. I felt like I was on a speeding train, though I think it was self-generated -- as I initially was going to have to wait 3 weeks for an appt with the PS. My BS and second opinion (RO) said I'd need a mx-- that a lx wasn't possible with the size/location of the tumor. Neither of them ever suggested a prophylactic MX on my "healthy" side. And I was under no illusions that the MX would mean no radiation (I did end up needing rads). What pushed me to the BMX was the follow up monitoring protocol with my remaining breast -- alternating MRI and mammogram/ultrasound every 6 months. I have a family history of BC, though BRCA negative, and my ILC went undetected by mammograms. I'm under no illusions that the prophy MX means I have no chance for distant recurrence, but it does mean i dont have to have the anxiety of scans every 6 months.

I think  what bothers me and other informed folks about these studies is that it makes us question our decision and also that when friends and family members see these studies they will question our decision. The studies are what they are, and while I think researchers do underestimate the scanxiety involved in monitoring a remaining breast post BC, there are legitimate questions about the rates of prophylactic mastectomies.

It's just like the rates of c-sections...i had one because my first child wouldn't have made it without the operation -- but I still feel a little defensive when I hear about rates of unnecessary c-sections. My second child was a planned c-section-- could I have avoided that operation? Maybe, but there were risks with the alternative too. It's human nature to question ourselves, but I'm at peace with my decision 99% of the time, and in fact, when I decided to do the prophylactic MX (and no reconstruction) i felt a wave of calm come over me -- really feeling like it was the right decision for me.

Lojo, you put everything I was feeling into words.

Diana, the study says: "Only 37 percent knew that the more aggressive procedure does not improve survival." The point the rest of us are making is that the decision to have a PBMX is not necessarily solely related to survival. Perhaps the 37 percent would STILL have had a MX if they knew it didn't improve survival. Their lack of knowledge about survivability does not mean they would have done anything differently. Furthermore, the title of the article is misleading in itself, along with the overall message of the article, because it brings to mind the following scenario: "No matter what kind of cancer I have, no matter how large, no matter what stage or where it is, I will not improve survival by having a mastectomy," and that is not what the study is saying at all. In actuality it says: "Studies have shown that for women at average risk of a second cancer, removing the unaffected breast does not meaningfully improve survival." So we are talking about women at average risk of a recurrence, and we're talking about removing the unaffected breast. That is not every woman that has a MX or BMX, and survivability statistics is not the only reason women decide to remove the unaffected breast. So I think what the rest of us are objecting to is a study that appears to (but doesn't really) make a broad sweeping statement about the overreaction of mastectomy in relation to cancer. And as Lojo has pointed out, not only does it make us question our decision (that was already gut wrenching) it makes friends and family question it. I don't think we have a "problem" with the study, and I for one am certainly not a "conspiracy theorist". More importantly, we are all just finding our way through this maze of bc and treatment and surgery, so it is good to have a (constructive) discussion about these things.

I too skipped rads since I was dx with widespread mets to bones, radiation to axilla made no sense.

Amy