I did the same thing with my "good" breast, because for my own peace of mind I knew I'd have a better life having the bilateral mastectomy. I would have been constantly worrying if I hadn't chose this route and I've never regretted it. I could care less if somebody thinks it was irrational, it was rational for me.

I'm one of those that chose a prophy right to go with the left mast. early stage ILC, after recommendation by my surgeon who told me it was my best chance at long-term survival and what he would recommend for his wife.  I researched both academically and by doing polls of women that I spoke with before settling with my decision to have a bilateral.  Of those that had a uni- mast all regretted not having the other removed.  Those that had lumpectomies all were post-meno and at least a decade older than I.  Two had recurrances within the first two years, one a new on the other breast.  Those that had lumpectomies did not regret their decisions.  Of those that lived more than a decade post dx, all had mastectomies without recurrance.  I understand that women need to make their own decisions and I still say after researching, follow your gut and never look back.  I also understand that there are no 100% guarantees, but when you're told that your prophy right had several areas of ADH and an area of LCIS, well then it solidifies in my head removing the ticking time bomb.  I will say that my mom and aunts are all doing well and into their 8, 7, and 5 th years with lumpectomies for ductal. 

Does anyone know where I can find a long-term study on lumpectomy vs. mastectomy survival??  Something that actually shows how many older woman are there out there that had lumpectomies in their 30's or 40's and still thriving in their 70's??  I truly believe in my heart that my bilat. was my best chance to get to 70 and beyond, but only time will tell.  We can only make decisions that we feel are right for us. 

Best to everyone,

lini

It's the "making the decison based on fear thinking it will increase their survival" statement that angers me...it implies a woman does not fully educate herself and evaluate *all* choices before making such a life-altering decision such as a bilateral mastectomy.  As if it is some "knee-jerk" reaction to diagnosis that women choose on a whim. *I* find that insulting!

Certain factors put a woman at risk for contralateral recurrence - family history (even if BRCA-), lobular cancer and even youth (the younger you are, the more potential years for recurrence - your 1/2% per year adds up faster than someone older...).  If screening tools were highly accurate, his claims *might* hold more truth.  Fact is I know several women who had screening fail them, and were diagnosed stage 3 or 4...Close monitoring is NO guarantee it will be caught early...

No question a BC diagnosis messes with your head.  If a bilateral mastectomy gives a woman peace of mind, how can *anyone* justify criticizing that choice?  Like I told my surgeon "Ok, my choice may be considered "overtreatment" but if I live another 45 years worry-free, w/o recurrence, watch my kids grow and enjoy grandchildren I hope to someday have, and die of something unrelated to BC, it will obviously be the right choice for *me*".  All cancer treatment involves risk - the choice to opt for surgical risks over medical (chemo, rads, anti-hormonals) should be totally up to the patient...

Maybe if I'd felt more attached to my breasts (*not* my best feature - been small all my life) I'd have been more inclined to want to keep them around.  It just wasn't a priority for me...I'm also 4th generation in my family and have seen the ugly side of BC and it's toll on my family tree...

Mary

Don't you think most women feel they made the right decision, whether they chose mastectomy or lumpectomy? I don't know anyone who thinks they should have had the other. I had a lumpectomy and I don't regret it. In fact, when I recently had some biopsies due to calcifications it made me sad to think I might have to lose my breasts after hanging on to them through cancer.



But I also don't know any women who regret that they had mastectomies. So from this I assume most women do what is right for them.

I'll join MOTC and be another dissenter here.  I don't have any problem with the article, and I have to say that I agree with and share the same concern that's voiced in the statement "If they are making this decision based on fear, and thinking that it will increase their survival...." 

Unfortunately I've seen too many women on this board who've decided to have a bilateral out of fear and misinformation.  I'm not against prophylactic mastectomies and I know that there are lots of good reasons to have a bilateral.... medical reasons (examples would be if one has the BRCA genetic mutation, if one has a cancer such as ILC, etc.) and non-medical reasons (for example if one simply can't live with the fear of recurrence, or if one's experience with treatment was such that facing treatment again can't be tolerated).  I also know that many women - most women, I hope - do go through a logical, rational thought process as they make their decision.  However, in close to two years on this board, I've also seen far too many women who decide to have mastectomies or bilaterals simply out of fear, without understanding the implications, without knowing the facts, or worse, misunderstanding the facts.  Women who think that they will increase their chance of survival by having a mastectomy, when in fact study after study shows that this isn't the case.  Women who have a mastectomy thinking that they can avoid radiation and/or drug therapy, only to find out afterwards that they still need radiation or still are recommended to have drug therapy.  Women who have a mastectomy thinking that it will significantly reduce their recurrence risk, only to find out that because they had positive lymph nodes, their risk hasn't been significantly reduced at all.  Women who have a mastectomy (or bilateral) because they think it's the easy way to get rid of their cancer and never have to deal with it again, only to find out that reconstruction is difficult, lengthy, sometimes painful, often requires revisions and comes with no guarantees on the quality of the outcome. Women who have a bilateral because they think that they will end up with two perfect matching perky new breasts, only to find out that each breast reacts to the reconstruction differently and they don't have matching breasts at all.  

When someone posts to this board asking about the "lumpectomy vs. mastectomy" decision, I never suggest which surgery is "right".  I never suggest that my approach (I had a single mastectomy) might be the right one for them.  I warn them not to make their decision based on what someone else did.  Instead, I urge them to react not in fear, but to logically think of all the short and long term implications of each option, and then decide which option is right for them.  I think the article is supportive of women who make their decision to have a bilateral this way.  But I also think the article is correct in highlighting that are too many women out there who've made irrational decisions based on fear and not fact.  I wish it weren't so, but I've seen it here lots of times.

I want to add one more thing about avoiding radiation via mastectomy. There seems to have been a real change in the last few years, starting just after I finished treatment. Now they are using radiation much more often including for women who were node negative and had mastectomies. Books about breast cancer that are only a few years old will not reflect this new approach.



A good surgeon will allow the pateint to make her own decision without pressure but will make sure she has the facts. I want my doctors to make recommendations. They have medical degrees and all I have is internet access, which helps and hurts. If I can't trust my doctor's medical opinions, I need to find a enw doctor.

This study is really pissing me off. I only needed to have a left mast, but at 35 I chose to have a bilateral mast. Number one, I never wanted to have to have this surgery again...to go through the horrible crap that goes along with losing a breast. Two, I wanted the best cosmetic result that I could have and I knew that for me, symmetry was a big deal.

Who the hell is some MAN to tell any of us that there are too many unnecessary bilateral masts going on out there?! For me it wasn't ever an option - once I saw some photos of reconstruction I knew I was doing it.

I'd rather live a long long life with silicone than the alternative.

Hugs

Erica

What the article doesn't talk about, is the women who have prophy's b/c of high risk for recurrence or new primary.

My opinion, is that I understand lumpectomy, and mast have same 5 yr survival stats... but what about future new primary cancers?  If you want to have bilaterals, for peace of mind, why the heck shouldn't you?  For me, I couldn't live my life with the future worry that comes with mammos of the good breast, and constantly worrying, seeing if I feel anything--etc.

I'm fully aware that having bilaterals doesn't make me exempt from getting cancer again, but knowing that the risk of developing cancer in my breast is 2% for the rest of my life is a welcomed relief.

I couldn't agree more.  Further, I think surgeons should discuss every option for reconstruction... but it doesn't happen.

All to often I have heard from my friends with a new primary in opposite breast, that they wanted to have both off initially, but the surgeon convinced them otherwise.

It's interesting how we each read this article differently and focus on different points, depending on our perspective.  Personally, I don't have a problem with research being done to understand why more women are having bilaterals.  The research wasn't judgemental, saying that bilaterals are bad; it was informational, trying to find out why more bilaterals are being done.  I think this information may help doctors better guide their patients, which would be good.  And I think the article is very well balanced. 

The research uncovered, and the article explains, several sound, logical, appropriate reasons why a woman might choose to have a bilateral mastectomy:

"They surmised that some women think the health-care system did not detect their tumor early enough and that continued screening would not be effective, while others might have been traumatized by chemotherapy. Improvements in reconstructive surgery also have made a double mastectomy a more acceptable alternative."   There is no suggestion that these reasons are in invalid.

"...if they understand that it won't necessarily improve their survival, and that emotionally it is the best thing for them, then we would have to support it"  Seems to me that there is a clear understanding that a bilateral is the best decision, emotionally, for many women. 

"Three weeks ago, she had both breasts removed. Don't underestimate the peace of mind that brings, she said."  Seems pretty positive about the emotional benefit of bilaterals, I think.

"Lynn Hartmann, a breast cancer researcher at the Mayo Clinic, said that for younger women a double mastectomy might be the appropriate choice."  Another positive statement about bilaterals.

And here are some statements in the article from the other side of the argument:

"If they are making this decision based on fear, and thinking that it will increase their survival, then that would concern me"   This isn't saying that everyone who has a bilateral is making the decision out of fear, it's simply saying that if the decision is being made out of fear or misinformation, that's a problem.  Does anyone disagree with that?

"Physician Benjamin Paz of the City of Hope Comprehensive Cancer Center in Southern California finds the trend "alarming, because the goal of medicine is to help people live well with their organs.""  This is the opinion of one doctor who wasn't involved in the study.  He goes on to say that "It is very difficult to explain... that she can be treated with breast conservation."  While I don't agree with the choice of words, I do agree that it should be the goal of all doctors to fully inform their patients about all the options so that the patient can make an educated decision.   

Overall, I don't see this article as suggesting that bilaterals are bad; it's pointing out there are more bilaterals these days, sometimes for  good reasons but sometimes out of fear or misinformation.  For those of you who made well-thought out decisions to have a bilateral, why is this conclusion upsetting?   While you may have made an educated decision, do you think that everyone's decision is equally well-thought out?  If you think so, I could post links to 2 or 3 recent discussion threads on this board that prove that there is a lot of misinformation out there and that there are some women who are making this decision out of fear.  I won't post the links - I don't want to point fingers or name names - but unfortunately this point from the article is true, and is proven here on a regular basis.

After much research and thought, I made the decision to not take Tamoxifen.  I've seen several articles that talk about the fact that some women are choosing to not take Tamoxifen, which can significantly reduce their risk of BC or a recurrence, out of fear or misinformation. I don't get angry at these articles because I know that what they're saying is true.  But I also know that I made an educated decision, so I don't feel that these articles are referring to me or reflecting on my decision, and I don't take it personally.   Why is anything that's even slightly negative about bilaterals taken so personally by the women who've chosen to have bilaterals?  I honestly don't understand.  Isn't it the objective of all of us that everyone make well-informed decisions that are right for them, whether the decision is the same as ours or not?  Isn't that all that these types of articles are saying? 

My first cancer DX I had a lumpectomy and rads. I am so glad I had those five + years of my breasts... no matter how many scars they had or how many bx's I had to have, they were still mine and I loved them.

But I always said, if I got another cancer I would remove them. However, I did waiver a bit with my new dx. I DID ask if it was possible to get a second lumpectomy because I was so scared of the surgery. Since my new cancer was lobular and under the nipple I HAD to have a mast on that side. So it was an easy decision to make- get both off because one already had cancer once and the new one had cancer in it at the time.

I was happy to have them removed because I felt clean and free from the cancer. I was happy to wake up and see breast mounds where the expanders were.

OK so now I am eight months past my masts. I am still in chemo and still have the expanders. I recently got a look at my medical photos and they scared the crap out of me. Maybe because they were so clinical or maybe because they were compared to other women's medical photos that were beautiful outcomes, mine did not look good. I know looks shouldn't matter but I am vain enough to say that I care about what I look like and had hoped I would be attractive again. I know I am a "work in progress" and cannot judge what I look like now compared to what will be done in the future, but the hard reality is my brilliant and talented PS is doing this work on pre-radiated skin, where the outcome is not necessarily going to be what I imagined. It is no reflection on him. I thank God for him. I think he is the best surgeon  in the world. My appearance is all because my body was so FUBAR before he even met me.

I am trying to hope for the best. Maybe when (IF!) I am ever out of chemo I will feel better, but right now I am not feeling so great about this whole deal and I miss "my girls."

There was another article that appeared in yesterday's paper that I am pasting here- I think it brings up a few good points.

We are not guaranteed 100% protection from a recurrance with a bilateral

We will not look the same naked again, but in clothes we will

We should get some kind of counseling before doing a procedure of this kind.

I wish I had some counseling that would have prepared me a bit.

Here is the article.

Elective mastectomies on the rise

By Abigail Ekue-Smith | Special to amNewYork

October 23, 2007

You can't get breast cancer if there's no breast. That's the logic behind elective or prophylactic mastectomy. Prior to the introduction of the procedure, mastectomies were performed on women already diagnosed with breast cancer. Within recent years, the number of breast cancer "previvors" has increased. Women are taking steps to beat cancer to the punch.

Carrying the mutated BRCA1 and BRCA2 genes, a family history of breast cancer or a previous bout with breast cancer can increase a woman's chances of getting breast cancer to 85 percent.

"Women faced with those odds may feel they're not going to take those chances," said Kathy-Ann Joseph, assistant professor of surgery at

New York-Presbyterian/Columbia University Medical Center.

Most women undergoing the procedure are BRCA mutated gene carriers in their 20s or 30s. Some have already battled breast cancer or had a family member die from the disease. Having an elective mastectomy lessens the risk of developing breast cancer by 90 percent.

However, breast tissue can be found throughout the thoracic cavity, above the collarbone, in the armpits and in the abdomen. That still leaves a chance for breast cancer to develop.

When elective mastectomies were first performed, many surgeons thought it was wrong to remove healthy tissue and expose patients to risks of surgery, such as reactions to anesthesia or infection. But for a high-risk woman, the secondary health risks of surgery outweigh drug therapy that can induce menopause, the cost of frequent doctor visits, MRIs and mammograms, and the mental strain of possible cancer diagnosis. Although some insurance companies do not cover elective procedures, a case can be made for high-risk pre-cancer patients and the surgery may be covered.

Mastectomies are irreversible. Breast surgeons work closely with plastic surgeons to perform breast reconstructions. The reconstructed breasts will look like natural breasts under clothing, but depending on the procedure used, the breast may not look the same as before to the naked eye. Also, the reconstructed breast will not function as a normal breast, eliminating the ability to breast feed, and breast and nipple sensitivity can change.

Some patients may decide not to have breast reconstruction at all.

There is no set requirement for pre-op mental health care, but a patient should expect to undergo some counseling before a surgeon will agree to perform the procedure. Joseph said any patient who is planning to get a double elective mastectomy at New York Presbyterian/ Columbia University Medical Center must meet with a psychiatrist and receive counseling.

I think if I had opted for a bilateral, I would bristle at some comments made in this article.  In particular, the second sentence: "The procedure, however, is being performed despite a lack of evidence showing that double mastectomies increase survival in most women."  Well, actually, now that I read this sentence again, it really seems like gobbledygook to me.  Statistics that show what happens for "most" women is all fine and good for sifting through information as we make our decisions, but the final decision isn't made for "most" women.  It's an individual decision we make for ourselves, and sometimes our gut says to heck with what statistics say for most women, this is what I want.  We are not statitistics!  We are individuals! 

I personally opted for unilateral.  No one ever mentioned to me that I might want to consider a bilateral, even though lobular is supposedly notorious for showing up on the other side.  I was upset enough over losing the breast that was cancerous.  No way was I removing something which has committed no offense!  I have to admit, when I first read of someone here getting a prophylactic mastectomy, I thought to myself, that woman is out of her mind!   I don't think that anymore, and I was obviously projecting my own preferences.  Again, we are all individuals with different priorities and beliefs.  Too bad our doctors don't seem to be properly trained to accommodate this truth.  

I can't answer your question. But, I had lumpectomy. Mastectomy was not really offered. I have vague recall that they explained the theory of lumpectomy + rads = mastectomy. I was not told of reconstruction difficulties after rads should I ever need mastectomy.

I was also not warned of the fact that I have very dense breast but because I have no family history, no BRACA, no node involvement (I was triple neg) and I'm over 50 (was diagnosed at age 50) I'm also not a candidate for breast MRI and am now fighting the system so that my lumpectomy breast as well as the healthy one will get proper annual scanning. (Radiologist told me this last time she can't tell a thing because I have such marked fibrosis).

I was happy to do lumpectomy because I felt that it meant our doctors here are "on the ball" (I live in Israel) and "advanced". I have another friends who said the same thing. I was happy with the SNB too and was thrilled to see that he only took one node out.

And then I read that the one node theory is not necessarily the best theory and the cancer could have skipped the sentinel and moved on to the next one.

So, really...are we doubting progress?

I think back and feel that I would not have been able to deal with mastectomy all that well so lumpectomy at this point is still the right decision for me. But it's not the right decision for all women.

My concern about the whole thing is that bc women just diagnosed receive the proper information and enough time to let it sink in so that they can think out how they will feel afterwards.