how many told to wait for PBM?

I thought when I had an actual diagnosis of breast cancer, that I would go for a mast, or two.  I did take some time and get multiple medical opinions, and decided for me that keeping the healthy part of the breast was the right move.

5 years later, it was still the right thing for me.  My breasts are not a major part of my identity, but they are important to intimacy and self image, for me.   I did have pathology that showed LCIS and ILC, but the watch and wait on the rest is ok with me.

Having the masts did not give me the guarantee i wanted, so my choice worked for me.

Get the facts, take some time (you do have the luxury of time, really) and make the right decision for you.   You don't have cancer, you just have funky cells at this point  that may or may not get dangerous, but are not now.  Unfortunately, there is no certainty in this or most other things in life.

take some more time, and get more info, and make an informed decision.  when you come to it, you will probably feel some measure of peace with your choice.  no matter what others tell you, you are the one who counts.

take care,

--hattie 

I agree with all of the above. I have classic LCIS, ALH, sclerosing adenoma, etc. and my breast surgeon essentially refused to consider BPM. (Of course I can't stand her, for other reasons in addition to lack of choice.)

In this 2004 Cochrane study about prophylactic mastectomy,

Twenty-three studies, including more than 4,000 patients, met inclusion criteria. No randomized or nonrandomized controlled trials were found. Most studies were either case series or cohort studies. All studies had methodological limitations, with the most common source of potential bias being systematic differences between the intervention and comparison groups that could potentially be associated with a particular outcome...While published observational studies demonstrated that BPM was effective in reducing both the incidence of, and death from, breast cancer, more rigorous prospective studies (ideally randomized trials) are needed. The studies need to be of sufficient duration and make better attempts to control for selection biases to arrive at better estimates of risk reduction. The state of the science is far from exact in predicting who will get or who will die from breast cancer. By one estimate, most of the women deemed high risk by family history (but not necessarily BRCA 1 or 2 mutation carriers) who underwent these procedures would not have died from breast cancer, even without prophylactic surgery. Therefore, women need to understand that this procedure should be considered only among those at very high risk of the disease. For women who had already been diagnosed with a primary tumor, the data were particularly lacking for indications for contralateral prophylactic mastectomy. While it appeared that contralateral mastectomy may reduce the incidence of cancer in the contralateral breast, there was insufficient evidence about whether, and for whom, CPM actually improved survival. Physical morbidity is not uncommon following PM, and many women underwent unanticipated re-operations (usually due to problems with reconstruction); however, these data need to be updated to reflect changes in surgical procedures and reconstruction. Regarding psychosocial outcomes, women generally reported satisfaction with their decisions to have PM but reported satisfaction less consistently for cosmetic outcomes, with diminished satisfaction often due to surgical complications. Therefore, physical morbidity and post-operative surgical complications were areas that should be considered when deciding about PM. With regard to emotional well-being, most women recovered well postoperatively, reporting reduced cancer worry and showing reduced psychological morbidity from their baseline measures; exceptions also have been noted. Of the psychosocial outcomes measured, body image and feelings of femininity were the most adversely affected.  <emphasis mine> http://www.ncbi.nlm.nih.gov/pubmed/15495033

Just to give you an idea about the state of art of breast cancer prediction,

This paper looked at the Gail model http://www.cancer.gov/bcrisktool/ (one of the most used breast  cancer risk calculators, and compared it to another model,the Italian model, that had more risk factors such as breast density.) They took one randomly selected woman with breast cancer, and compared her score to a randomly selected woman without breast cancer.

 In other words, for 59% of the randomly selected pairs of women, the risk estimated for the woman who was diagnosed with breast cancer was higher than the risk estimated for the woman who was not. Unfortunately, for 41% of the pairs of women, the woman with breast cancer received a lower risk estimate than her cancer-free counterpart.Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much.  (emphasis mine)  http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

There was a study published recently about how doctors asking women who want PBM to wait 12 months to make the decision reduced the number of women who went through with it. I'm guessing your doctor read that study.  I'll see if I can dig up a link for you.

P.S. Here's the article:

http://www.sciencedaily.com/releases/2010/03/100325102400.htm

I had PBM 4/2009 without a cancer diagnosis.  If I had waited 6 mo, my decision would have been exactly the same. 

I don't think any amount of time would have changed my mind.  However, in my case I had already endured many years of mammos, biopsies, and lumpectomies by that time.

Julie

I was diagnosed with LCIS in Jan of '08.  Since then I endured several more biopsies, took tamoxifen (I did very well with it) and the constant stress of being monitored so closely.  My yearly MRI was always in Nov, and always required a biopsy of some sort, which resulted in major stress for my whole family.  My mother died of BC and colon cancer, my sister is a survivor, diagnosed at 46, and my aunt also had it.  I was at a very high risk for an invasive bc sometime in my life.  On Jan. 19, 2010 I had bilateral masts, and am currently undergoing recon.  I decided to make the decision before cancer made it for me.  My breast surgeon initially thought PBM was too "drastic".  I got several opinions and went back to him and told him I wanted  to do it, he listened to all my reasons and then said "I support you 100%" and went on to give me all the reasons why it was a good idea.  No one can make the decision for you and it is not the dr's job to talk you into it or out of it.  I did this on MY own time, rather than possibly getting a diagnosis, and then having to rush into surgery and possibly chemo and radiation.  The surgery is very doable, but it is taxing.  The emotional freedom is well worth it.  I went into surgery hoping to wake up directly with implants, but had to go the expander route.  I developed an infection after 9 days and had to have emergency surgery,with  expander removal, but they were able to place another.  I look the same in clothes.  Even with all I went thru, I have never, not for one second, regretted my decision.  I can hardly wrap my head around the fact that I went from being so closely watched to hardly any monitoring.  I'm off tamoxifen, I'll never need a mammogram again.  My dr may order MRIs, but for once no more poking, compressing, prodding, wire placement, etc.  I spent one day of surgery in a mammogram machine for 3 hours while they tried to locate a clip that was close to my chest wall.  3 hours of constant compression!  60 x rays!  It was brutal. So you can see why my decision was easy.  It was on my mind for 2 years, but when I tipped over the edge and said enough is enough, I knew I would never go back.  Some women can handle the monitoring and I did for a while, but when I made the decision, it was like my house literally took a huge sigh of relief and every one of us inside calmed down.  I literally felt like I was floating and I was light as a feather.

Only you can make this decision.  My best to you, and if anyone has any questions, please PM me, I am more than happy to talk about my journey.

Hmmm, I don't know leaf.  I have been told by all my doctors, including my breast surgeon and my oncologist that mammos were no longer necessary, but I may want to have an MRI yearly or bi-yearly.  After being exposed to radiation so much that day of my wire placement, I refused my next mammo and there was no problem.  My surgeon agreed that LCIS wouldn't show up anyway, and an MRI was best for me.  I do know that after my mother had her mast,(no recon)  she still had mammos, even on the mastectomy side.  I think there is a different thinking these days?  I don't know...I'm not really sure what policy this poster was following.

Good to hear from you!  How are YOU doing??? 

Sorry Kimber and LISAMG - I guess I didn't communicate clearly enough that I am outraged that a person who had bilateral mastectomies withOUT implants or tissue reconstruction would be required to have mammos.  I was trying to mock those that made these requirements without thought.  I also didn't think to examine the issue of WHETHER people with implants or tissue reconstruction need screening. My bad.

I was simply shocked that anyone with bilateral mastectomies without implants or tissue reconstruction would be ASKED, let alone required, to have mammos.

I have not researched, nor do I know any information about, screening policies (if any) for those with  implants or tissue reconstruction. 

I apologize for any upset or concern I may have caused due to my statements.

I think you made a good trade, Kimber!  Congrats on the good decision! I am so glad you had the chance to choose!  That helps you to be in charge of your body.   I can't imagine 60 Xrays and being squished that whole time.  I'm so glad you chose what you did.

Thanks mginger, I know I did.  I am having my exchange surgery on May 20 and it can't get here fast enough.  Thanks for all the encouragement and advice everyone!  I'll keep you posted (if you like...)

kimber 

I have had numerous biopsies, microcalcifications, latest came back ALH.  Researched tamoxifen and with a family history of bc, have decided to have masectomies.  Tomorrow is the day!!  I am 49 and having lived with the fear of bc I honestly can't wait to be done.  My surgeon is totally supportive and my insurance is covering it.