no benefit from double mastectomy study, A Question

jessica749

Other thread about this study written up on this website under "Breast Cancer News Update" , dated Sept. 4, 

stating no overall survival improvement among those choosing BMX over single or lumpectomy plus rads. It's a study over a ten year period. Here's my dumb question:  why would 10 yrs be a sufficient amount of time to make such a study? I mean, how authoritative is such a study that is limited to 10 yrs,  particularly with a cancer which can recur more than 10 yrs later, and can be stage 4 for quite a number of years, and when you are talking about this choice than many 'young' women seem to be making with alarming, increasing frequency?  I just don't get why the time frame is so limited when the disease horizon for mortality is much greater than 10 yrs from initial diagnosis, particularly with 'early stage'.

Also, why is the question just framed as "overall survival"? Isn't this old news? What is new in this news? I was told about 3 or 4 yrs ago my overall survival would be the same, studies showed.

Thanks for informing this enquiring mind!

Lojo

Jessica,

I also have the same issue with these studies  -they show "younger" women (<50) with higher rates of double MX, presumably because of their longer time frame of interest (10 yrs is meaningless to me - I want to know the 25-30 yr rates of contralateral recurrence). So, I really don't think we'll have any real information about whether a prophylactic contralateral MX makes any difference in survival / recurrence for another 10 yrs when they can re-analyze the data on the longer time scale. Also, it's curious that the single MX had a higher mortality than the lump+rads or the BMX - which makes me think there is something else going on in terms of the characteristics of the various groups - that the stats haven't accounted for. On the surface of these results you could say that the rads are beneficial compared to a UMX without rads, but then why does  the BMX have roughly equivalent rates to the lump+rads? Is  this because there is something different about the women getting the BMX (younger, overall healthier?) or is it because leaving the other breast increases local recurrence rates, which ultimately leads to distant recurrence? It's entirely unclear to me. I accept the idea that the prophylactic MX doesn't change my chances of distant recurrence from my initial tumor, but it does decrease the chances of contralateral recurrence, and since my 4cm lump went undetected during regular mammograms, I wasn't confident a second tumor would be caught - plus my mother had a contralateral recurrence. It was unclear whether her initial tumor or the second one ultimately got her, but I see my risk as relatively high despite being BRCA negative.

jessica749

scary experience re your mother - so clear why you would have gone with bmx, so understandable, and frankly - sensible - even though as you say no way to know if it was the original or recurrence which ultimately metastasized...

Curious what your BS thought of your decision. Encourage, discourage, or neutral?   

exbrnxgrl

When you talk about contralateral recurrence, do you mean a true recurrence or a new primary in the remaining breast? My understanding is that it is unusual for you initial primary to "jump" to the  other breast so it is more likely that a tumor in the other breast would be a new primary.

Lojo

I mean a new tumor in the remaining breast - - I guess I'm not sure of the official terminology. It was found before her bone lesion was detected, but it's certainly possible, maybe most likely, that it was the initial tumor that metastasized. I guess I was mostly pointing it out because it is one of the risk factors I was concerned about in terms of my own decision. I know that the tamoxifen I'm taking anyway would have decreased my risk of a second tumor in the remaining breast had I done a single MX, so I admit there is ultimately some irrational fear underlying all of this, but that's another thing that's not mentioned in these studies -- in my case, what I witnessed as a teenager shaped my relationship with my breasts in a way that made me much less committed to them...:)

Lojo

My BS definitely didn't suggest a BMX, but after he said I'd need a MX rather than a lumpx,he said I should make an appt with a PS re reconstruction. i made the appt, but in the interim became increasingly certain that I wanted both off. I went back to his office about a week later and asked if he would recommend a BMX -- and he essentially said that although he thought that my chances of having a second BC in my remaining breast were relatively low, given my family history he thought if I wanted to do the BMX he would agree. I experienced a tremendous sense of peace in that decision, even though I "know" it doesn't change prognosis according to current studies. I also decided not to reconstruct too, which I'm also happy with. I miss righty, and did have some doubt until they wheeled me in to the OR, but given how freaked out i was for mammograms prior to this, that itself is valuable. There are no easy answers, though, and it does seem that without a family history the decision is less clear

exbrnxgrl

Well, there is something to be said for peace of mind, even if it is purely emotional. I did not have cancer in my right breast but did have some suspicious  calcifications. I knew immediately that I wanted a bmx and not a uni. I was already stage IV, but didn't know it, however I am perfectly comfortable with my decision.