Why choose mastectomy without reconstruction? 

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And why choose bilateral mastectomy if you only have cancer in one breast so far?  Let me count the reasons... but just for myself.  Everyone is different and everyone must choose for themselves.  There is no right or wrong answer here, it's a choice we each must think through ourselves, research very thoroughly, and come to the very difficult decision to do what is best in your own specific particular situation.

You have to find out what sort of surgery your own surgeon recommends and find out ALL your options.  Sometimes, mastectomy is an obvious choice because of the size, location, or aggressiveness of the tumor or your family's prior history of breast cancer.

Sometimes, a surgeon is very opinionated and pushes you one way or the other.  If so, put your foot down.  This decision affects the rest of your life and your personal comfort level.  Consider discussing it with a different surgeon.  You are entitled to a second opinion.  This is your body, your life, so take time to get all the facts from a doctor who will truthfully answer your questions. 

If you can find local women who have had different kinds of surgeries that are among your options, talk to as many of them as possible before making your decision.  Women who have experienced it will often give you far clearer answers about your future problems than doctors, because the women FEEL it.  They live with it daily, for the rest of their lives.  They know what you're going to experience, and what they'd change if they could go back before making their decisions.

Even though you may have several options, some doctors tend to put their own spin on surgical issues to get you to do what they think is best for you, as if you should be a good little girl and shut up, pappa knows best.  Don't fall for it, you're a grown up, remember that!  Ask about ALL safe and reasonable options.  I had a wonderful surgeon who was very open to questions and to my choice, but I've heard some disturbing things from others who didn't.


I want to make this perfectly clear, the following is only my own personal opinion, after research into my own particular stage of cancer, family history of cancer, personal opinions from other breast cancer survivors who made what they considered the WRONG decision.  My choice was to go ahead with bilateral mastectomy, rather than single mastectomy, or lumpectomy.  I felt it was the right thing to do at the time, and after five years of no recurrences, I still feel that way, having talked to many ladies who were told they likely wouldn't have recurrence, so they had lumpectomy, then recurrence,  and then finally mastectomy anyway, SINCE my own surgery.  Since starting this website, I hear from women every week who've gone through it, and feel betrayed.

I also hear, every week, from women who had implants or breast reconstruction that went wrong, sometimes right away, sometimes a while down the road, but it's enough to keep me content with my decisions.  IF you are still considering having implants, by the way, there is a remarkable website by and for women who have had to have them 'explanted' (their terminology, which I consider quite an elegant description of it) and every woman who considers implants absolutely should refer to it before making their decision.  You'll find it very enlightening, and fully backed up with years of evidence.  It's at www.ImplantInfo.net, and I'll put their address on my Links page, if you want to refer to it later without searching back here.

By the way, if you're reading this, chances are you've already had bilateral mastectomy without reconstruction, and are occasionally questioned or even openly criticized for it by people who simply do not know any better.  You know the type, they watch a movie-of-the-week about a brave breast cancer survivor who chose lumpectomy or who reconstructed after mastectomy, and they think they know what's best for you.  Feel free to email them a link to this page, if you don't feel up to defending yourself yet again.  It gets tiring, I know... been there, done that.  It kind of hurts your feelings, too, to be questioned as if you've done something wrong by not choosing to remake your body to please others who only see you on the surface anyway.

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To be fair, I'd like to give a few reasons FOR reconstruction, although I didn't choose it for myself.

Are you 'body conscious'?  By that, I mean, do you enjoy low-cut tops, swimsuits that show off your 'assets', and are you concerned enough that you'd never be the same again that you'd risk your life for it?  If you're very young, or have a great body that you don't want to give up, I can understand it.  Life is a risk anyway, just crossing the street. 

Well, go no further, go research the different forms of reconstruction, because there are several, and they have varying degrees of success.  They can give you back most of what is removed during surgery, even if not all.  If you're dating, though, please be aware that someday you will still have a few things to discuss before taking off that bra.  I'm just sayin'..... It's still not going to look the same.

I only want you to make sure the physical, emotional, and financial cost is worth it to you, because all of them are pretty high, and you should not go into it expecting that you will look and FEEL the same as before reconstruction, no matter what that surgeon tells you.


You see, what you are shown on TV and in the movies are people who choose reconstruction, and within an hour or two of the show, minus a few commercial breaks, they have completed it and look just the same as before.  What they don't show you is that you may lose more chest tissue than just the breast, and you may be left with sunken-in areas in the upper chest that may make you self conscious about low cut tops anyway.  There may will usually be no nipples (though they can make somewhat of a good substitute with tattooing and plastic surgery). You won't have the sensation of nipples, but the visual effect is sometimes fairly good.

They also don't show you the possible weeks or months of living with uncomfortable implanted chest expanders to stretch the skin before the actual implants, nor do they show you the side effects of the surgeries where muscle and tissue are cut, pulled, and grafted from other areas of the body to make something to look like a breast.  Most say that the other surgical sites are more painful than the breast area, and take longer to recover from. 

Though it looks good sometimes, I've heard from many who say they'd never have done it if they'd KNOWN how it would feel afterward, or how much pain they would go through, or the many office visits and surgeries, or the long recovery time, but I've read of a few who say it was well worth it, so it goes both ways.


Just for myself, the most significant thing that bothers me is that women aren't always being told that if you get implants, it's much harder to find a lump growing behind them on the chest wall during future exams.  Without implants, my surgeon and my oncologist are able to feel right up to the rib cage during frequent exams, looking for returning lumps. 

With implants, that wouldn't work, and I've read that it's doubtful whether scans can show small hidden lumps beginning directly behind implants, so be aware of that risk before you choose that option.
  It's likely that real transplanted tissue would be safer for that reason, than implants, but I've heard it's significantly more uncomfortable.  Issues need to be weighed before either choice.

Many women are not told that if one breast is reconstructed by either method, and the other breast is natural, their breasts will be very unlikely to match exactly.  You will often be unable to go for long before you may still have to insert 'fillers' into your bra on one side or the other.  It's almost physically impossible to 'build' a breast that will stay the same size and shape as the natural breast next to it, or even the same as another constructed breast on the other side. 

Things change when you lose or gain weight, gravity begins to happen with passing years, etc... We as women know this.  Reconstruction is not an exact science, more of an art form.  It is limited to the skill of your particular surgeon, how your body happens to heal, and a myriad of things that are out of your surgeon's or your hands.
  (Get lots of references for your reconstructive surgeon, some are amazingly good at what they do and you'll want to search them out.)

If you do choose to have reconstruction, please ask a trusted outspoken friend to 'check you out' occasionally in your low-cut clothing.  For example, I'll share this story that upset me at the time but later I found to be the best description of what I'm talking about when simply getting 'implants'. 

Early in my recovery, I was in a conversation with a  lady who loudly and publicly (in a cafe) berated me when she heard I had chosen bilateral mastectomy WITHOUT reconstruction, as she had chosen implants and told me I was foolish for not.


I would have defended my choice, but for the entire time she ranted I just could not take my eyes off her left 'breast'...as it slowly climbed up her chest wall and out of her low-cut dress, gaining more ground with every deep breath taken.  It seemed to catch on the fabric and climb like a squirrel, until most of it was perching inches higher than her other breast, ready to take the final leap to freedom! 

Unable to speak, I sat there in shocked silence, wondering whether it was better to say nothing or embarrass her by mentioning it.  (Strangers at a table nearby were obviously listening in to every word of the conversation, some were positively gawking. Considering that, but also how hurt my own feelings were, I was conflicted about whether to speak out about her rather obvious problem.)


Finally, I asked gently if the reconstructive surgery had been easy (hoping she'd instinctively glance down and make an adjustment), but instead there came a long rant against the original surgeon who made a complete mess and it'd all had to be redone by another surgeon, at much expense and along period of time.  

The second plastic surgeon "had done a great job" and made her feel quite sexy enough to again wear all her low cut clothes, and wasn't I sorry I'd not had reconstruction?  Well...ahem..... um, still not so much.


Again, before choosing implants, read all the www.ImplantInfoNet.net website.  I have nothing to do with anything on the site, just think that it's a site that should be a big part of anyone's research before choosing implants.  Get the facts from women who've lived it.  It took me days of research to find only a small fraction of what you'll find on that website, and I only learned of this site five years AFTER my decision against reconstruction. 

Start there, read it all with an open mind, then ask questions, they will answer you.  If you've already had implants years ago and now have mysterious health issues that have stumped your current doctors, you seriously should look there right away.  It could save your life.  I've emailed someone from that site and have been VERY impressed with their knowledgeable response. 

From now on, I'll be personally suggesting that site to those who ask me questions about implants, they know so much more than I ever could, having not experienced implants myself.

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Now, my own mostly health related reasons for mastectomy, after much research and soul searching... but remember, they are MY OWN REASONS, and not to be taken as the answer for everyone, just for me.

My cancer was Stage IIa, Invasive Ductal Carcinoma.  That basically means it'd been there awhile and was growing larger, trying to invade a little more tissue each day until it might decide to go on a rampage throughout my body.  Thankfully, it was detected before that could happen.  Well, hopefully.  It hasn't yet been found obviously growing anywhere else and it's been several years, with regular exams every 3 months, for whatever good that does.

It doesn't seem to be widely realized that there's no test to be sure that cancer isn't in the body.  Yes, there are some tests that might suggest a recurrence of cancer, but some doctors don't even bother using them because of so many false positives. 

There's something called 'tumor markers' to watch, but those are often inconsistent as well, so only about half the oncologists rely on them.  Mine go up, and down, and up, and up, and down.  We can't really depend on another cancer being found just from blood testing.

When I think of how many of my friends were told they were in remission because of some blood test, and we'd celebrate, only to find the cancer spread to sites all over their bodies just weeks later, where it'd obviously BEEN SPREADING when the last blood tests were done... well, I miss my friends and grieve for those who've passed on, and have grown to distrust the tests to some extent.

There's been so many people in my life whose second cancer wasn't found until it was too late, that I don't want anything in the way of it being FOUND early if it comes back, long before it spreads anywhere else that's harder to find and treat.  The best way to find a new tumor on the chest wall is to have nothing implanted or transplanted that would physically cover it up.  Therefore, here comes the rest of my reasoning out all the reasons for bilateral mastectomy WITHOUT reconstruction:

Several of my family members had already gone through breast cancer before me.  So, it seemed logical that whatever caused mine could also cause another to form later if I chose lumpectomy instead of mastectomy.
  Both breasts could reasonably be expected to have equally the same risks from heredity and environmental factors, so that was also a significant part of what I had to consider.

If choosing lumpectomy, there would have been six weeks of daily radiation treatments and I was informed that a patient can only have radiation one time on a breast.  If cancer comes back again in that breast, people generally then must have a mastectomy anyway because twice would load the body with an unsafe amount of radiation.  (My lump sat over my heart, which I also did not care to radiate.) 

Even one round of radiation treatments has recently been found to sometimes have serious complications that can occur as much as ten or more years later later, so I'd even now consider lumpectomy with radiation to be a temporary fix for me.  I wanted the best option for long-term safety.

Does cancer recur?  Not always, but often enough to need consideration.  Having a lump removed and the area treated with radiation, does not give any particular insurance against another lump returning in that same breast, or against a lump being found later in the other breast.

As for chemotherapy, I did have some hope that mastectomy would relieve me of having to go through that.  Unfortunately, my pathology report on the removed tissue later led my oncologist to strongly advise chemotherapy anyway to try to reduce the possibility of stray roaming cancer cells from setting up somewhere else.  Would I have still chosen mastectomy if I'd known I'd have to have chemo anyway?  Yes.  A strong yes.  Doesn't change my mind, in my own situation.

People I barely know, to whom I've happened to mention having had breast cancer, often tell me their own stories and what they 'wish they'd done'.  I have talked to several breast cancer survivors over many years, even before I had breast cancer, who had lumpectomies and later had to have mastectomy after recurrence as close as a year later and as far away as 12 years later.  Most told me that they'd have chosen mastectomy initially, if they'd been told clearly all of the options and understood the risks.

I've also talked to ladies who had one breast removed and not the other, on the advice of their surgeon and/or oncologist, or even because of their insurance company.  Although they personally WANTED and ASKED for both breasts to be removed for safety, they were refused.  Later on, cancer returned in the other breast, and they had to go through it all again.  It's SO NOT FUN, I'd not want to go through it twice if I could help it.  Life is just too short as it is, to go through that scare and discomfort again, not to mention all the chemotherapy and recovery time.  I'm a busy lady, and I enjoy life.

Having both breasts removed at the same time was hard, sure, but it's not much harder to go through taking care of two scars at the same time, or dealing with the extra drainage tube.  Plus, removing the supposedly 'healthy' breast at the same time meant that what's called a 'simple' mastectomy could be done, without removal of the lymph nodes on that side.  It was able to heal nicely with no residual pain or problems.  I never even THINK about the side with the simple mastectomy, because it's so pain-free compared to the side with the 'modified radical' mastectomy where the cancer was.

When a breast with active cancer is removed,  a 'modified radical mastectomy' is usually done.  It removes significantly more deep tissue than a 'simple mastectomy'.  The surgeon will also sometimes remove a number of lymph nodes to test for cancer cells, and that can leave what I refer to as a 'hole', a depressed scarred area, that can feel tight and occasionally hurt and/or burn for years, and sometimes for life. 

I can personally stand the discomfort on one side without much annoyance, not so bad, but it'd drive me half nuts if I had to have such discomfort on both sides forever.  
Many women write to me now that their surgeons were able to give them a much better outcome, without continued pain, numbness, or much else.  Surgery techniques change quickly, but... I still do not regret having had bilateral mastectomy even with my few remaining issues of occasional discomfort.

On the side where lymph nodes are removed, one needs to try to be somewhat careful about lifting.  Carrying a large purse or heavy bag of groceries on that side can cause discomfort for hours afterward.  Wearing a stretchy watch band or constrictive jewelry also increases the possibility of lymphedema.

However, it's easy to shift most carrying tasks to the 'good' arm and have life go on as usual.  Having both breasts removed at the same time, gave me as much reassurance as possible that I'd have at least one good strong arm to comfortably do whatever I wanted, even if care had to be taken with the other.

Personally,
If I'd saved one breast only to go through this all over again later, I'd have been heartbroken, as many other women are when that happens.  Besides, with both replaced with breast forms, I can forever have 'matching' breasts.  :^)  Whatever size I want is possible, down to even coordinating the style of breast forms to the clothing I'm wearing.  Clothes a little tight in the bust-line?  Wear a smaller set! Blouse dart not in the right place?  Accessorize with a different shape of breast forms that day and raise or lower bra straps! 

If I want, my bustline can still be as perky as I please, even when I'm 90 years old.  And I plan to be....90, 95, maybe even over 100 years old. I'm not going down without fighting, and there's just too many things to accomplish in life for me to waste time going through all the surgery again someday if cancer returns, just so that I could have had internal breast forms instead of external breast forms.  :^)


There, that's my reasons for mastectomy without reconstruction.  If you chose the same and get tired of the questions, just copy and paste some of what I've said here, and send it to your annoying friends, lol... you've probably already had to waste enough time out of your life explaining yourself. 

Some may find it hard to believe, but the first time I saw one female doctor for an exam a few years after my mastectomies, she looked at my scars and blurted out, "Wow, your surgeon really butchered you, why didn't you reconstruct?" 

I allowed for the fact that she was very young, very beautiful, and probably in her culture, acceptable female appearance may have been more stressed than it is with those of us who are a little older and more concerned with staying alive and in good health.   I was shocked, sure, but to each her own.  No one can know what their decision will be until it happens to them.

Personally, I think people who choose reconstruction are strong, brave individuals, who made the best choice they could in their situation.  I support their decisions.  I also think that people who make the hard choice of mastectomy without reconstruction are just as strong and brave, and have made the best choice for themselves as well. 

Most people won't judge you and the ones who do, well...  If they are that worried about what lies inside your bra, ask them to explain WHY it matters to them?  Hmmmm?

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