Anyone have prophylactic mastectomy?

GointoCarolina

I had my mastectomy two years ago,no reconstruction.I have been researching reconstruction and had my mammogram a couple of weeks ago.The doctor who read it stressed that I had very dense breasts and had to be very vigilant about self exams etc as the density could mask problems normally seen in a mammogram.I did some research and found dense breasts are more likely to develop breast cancer,no one had ever told me this before,but it seems to be supported by research.This coupled with my HER status got me to thinking I may just have a mastectomy at the time of reconstruction.I do NOT want to go through chemo again,I was so sick.Has anyone else had a prophylactic mastectomy,either delayed or initially? I know it is common with women who have a genetic predisposition,but I was never tested for that as there is no known history.And will insurance pay? Thanks and hope you are all having a good day.

KristyAnn

I had a left mx at the time of my original surgery and am planning to have a right prophylactic when I have recon.

Iamstronger

I had a bi-lat done at the get go.  My left breast was cancer free, but I know me and since a mamm didn't catch it, a doctor's exam didn't catch it, I didn't want to continue to worry that it was in the "good" breast and just that no one was seeing it.  I just didn't want to take any chances.  I am glad that I chose to have them both removed.

V

BrandonMom

I ended up not having the prophylactic mastectomy, but I did think about it.  Here's why I chose note to:

1) Studies show that the survival rate doesn't change.

2) There is a lot of numbness from a mastectomy and I didn't want my whole chest numb.

3) In my case, the cancer was easily seen and I felt that if it did come back in the other breast I would catch it early.  I wasn't getting regular exams prior to my diagnosis, but I knew I would from then on.

4) The hope that if it were to come back, that treatments will be better in the future and maybe even diagnostics will be better.

5) I knew I wouldn't worry every day about it coming back.

That all said, even though the survival rates are the same, you do reduce the chances of a reoccurance in the other breast by doing a prophlactic mastectomy.  The risk isn't eliminated even with a double mastectomy, but it is reduced.

So, so far, that was my decision and the reasons.  Though in the future, I amy rethink and decided to get the prophlactic mastectomy as well.

buffy

I chose a double mastectomy with immediate reconstruction when I was diagnosed with breast cancer in my right breast.  I chose this after much research and talking to a pathologist....this hit me like a ton of bricks.  I had a normal mammogram 2 months prior to my diagnosis.  Since I am in the medical field I insisted on seeing a surgeon because I felt a thickening....luckily I did.  There is NO family history-- oncologist informed me only 20% of breast cancer today has family history.  You certainly wouldn't know that the way the TV and billboards make you feel if you have family history blah blah blah!!  I have always been in good shape, exercise, did all the things you were supposed to do to prevent getting and got it anyway, therefore, I just didn't want to go through it again...Yes, as one woman says you are numb, not totally, but at least I am even and I don't have to worry every six months going for an MRI and mammogram....It certainly is all a true personal decision...no one can tell you what to do; you have to feel comfortable with what your decision is.  Good luck!

imatthew

we're wrestling with this now, my wife had 3 areas of DCIS and one IDC in her right breast, but her left breast is fine.  Her OB/GYN found a lump during a routine exam, which is how she discovered the mass.  She had been bad about getting mammograms and had gone 4 years without one.

Our surgeon never even brought up the idea of a bilateral, and after talking to a lot of people, she plans for the unilateral with DIEP reconstruction (she doesn't have enough belly fat for a bilateral DIEP).  I do think we'll end up talking to the surgeon one more time though.

Estepp

from the get go for me too girl.... I am Her2 and I am very thankful I found my BS  and entire cancer team who wanted me to do a bi-lat because I was Her2 and only 40 at the time. I saw them all take a sigh when I told them it was a no brainier for me.

You will do the right thing for you ! Pm me if you have any more questions.

Laura

mmm5

Did the same thing as Laura and would not change that for a minute...only DCIS showed on my mammo and the invasive component did not show up until MRI signaled to do a biopsy. I would not want to have to worry endlessly and with a new cancer in new breast that would mean treatment all over again and let me tell you ...after a year of treatment I DO NOT want to have to do that again.

The aesthetic result has been good for me as well and they match. 

MissSophieGrey

When I discovered a unilateral mastectomy was in the cards for me, I chose to have a BMX instead.  No family history, no risk factors, low Oncotype score.  My BC was only discovered by digital mammogram and even when the breast surgeon knew exactly where it was, she could not feel it through a clinical exam.  My OB/GYN did not pick it up either.  Physician and self-breast exams were of no benefit in my case.  Multi-focal disease was only diagnosed after a breast MRI.  I felt eliminating as much breast tissue as possible would give me some semblance of peace, and DIEP reconstruction was a one shot prospect.  I was a size 8, and my plastic surgeon promised me two small Bs; I ended up with nice Cs instead and a very flat stomach.  It's been nearly seven months, and I'm positive I made the best decision for me.  P.S.  Insurance paid for everything.

NonniO

After having several years of clear mammograms, I was diagnosed in Dec. 2008 with multifocal cancer in my left breast (IDC 4.6 cm & DCIS 4 cm).  I had a mastectomy in Jan 2009, went through TCH chemo, radiation & am currently on Femara.  I'm being watched very carefully, alternating mammo & MRI every 6 months plus an annual ultrasound.  I also have dense breast tissue, something I never realized until my diagnosis!  Before my surgery they did the usual testing, ultrasound, MRI, etc.  The MRI only showed a 2 cm mass, along with an area of DCIS.  It was only after surgery when I saw the path report that the IDC was actually 4.6 cm.  So, needless to say, I don't trust all the scans that they perform on me - I still worry that there is something lurking in my right breast.

However, when I mention a prophylactic mastectomy to either my breast surgeon or my oncologist, their response was "Why remove a healthy breast - it's major surgery - mastectomy doesn't entirely remove the chance of recurrance, etc."  They seem more concerned with a distant recurrance than with one in my right breast.  I'm concerned about that too of course, but I'm still worried about what might be going on with the right breast.  I really trust these doctors, so I take their advice seriously and would like to hear them say that it's up to me.

And they always ask me whether or not I'm considering reconstruction - I am, but will put it off until next summer, maybe fall.  I have yet to get a consult with a plastic surgeon but I'm planning to bring up the PM with him as well. What gives here? It's nice to hear that other women have their doctors supporting them, even encouraging them to have the PM, but apparently, not all think the same way.  

I believe that my surgeon will agree to do the surgery if I ask him to, but it would be nice validation to hear that it's the right course of action for me.  Anyone else have this happen to them?

RebzAmy

Hi

When I was diagnosed I immediately wanted the unaffected side removed. My consultant said that this was possible but that we had to treat the affected side first and then deal with the other side at a later date. I recently had a mastectomy and reconstruction of the unaffected side and feel so relieved now. I'm planning to have the affected side reconstructed later this year or next year.

NonniO

RebzAmy

Yes, I'm sure that you are relieved - that's how I want to feel too. But, I'm surprised that you didn't have both sides reconstructed at the same time - was it an insurance issue?  I'm unfamiliar with the consultant term - do you mean your doctor or a nurse?  I guess I'm still on the fence about a PM, but having a doctor's approval would give me the assurance that what I'm doing is right. I know that I shouldn't feel that way, but I still do.  I've read here that many women with smaller tumors have had BMX from the get go - just wondering what advice their doctors gave them.

Junebug40

I chose bilateral mastectomy even though left breast had no cancer (for now). I have completed reconstruction (implants) and I am very happy with my results. Final surgery was actualy two surgeries due to a revision on left to even out with right. I also had radiation on right side and was very concerned with results. Thanks to a fantastic Plastic Surgeon I am now whole again and am very happy with the results.

LeapFrog39

I had a bilateral too, with delayed reconstruction, even though the left breast was clear.  My breasts were also very dense and nothing showed up on the mammogram or ultrasound. I didn't want to go through this again and it wasn't very hard to convince the surgeon to do it.

RebzAmy

Hi again Nonnio

I didn't have both reconstructed at the same time because the one operation on its own was 9 1/2 hours and it would have taken much too long both for the surgeons and in terms of my recuperation afterwards. As it was, I felt pretty rough afterwards. In the UK you have it done under the NHS although I do have private healthcare but I was happy to have it done under the NHS and especially at the hospital I had it done at as it is a hospital of clinical excellence - and I can vouch for that!

NonniO

Junebug40,

Like I mentioned before, I have yet to see a plastic surgeon about reconstruction options, but I'm leaning towards implants.  I also had radiation and am concerned about complications, but I was assured by my BS that implants were doable.  I'd like to stay in my local area, but I see that you're from Massachusetts too.  I live in the western part of the state.  May I ask where your "fantastic plastic surgeon" practices?

Kyta

I'm not Her2+ but can relate to wondering about having a prophy. I had a left mx Dec 2009 for IDC multi-focal. The MRI also showed some spots of potential concern in my right breast. I had a biopsy on the largest spot which was B9 so decided to leave it alone although the surgeon suggested I consider removing both breasts. So now 9 months later, I've been to a plastic surgeon to discuss reconstruction and she is recommending a prophy as I'm small breasted and not likely to have good symmetry.Hindsight is 20/20 of course, but I do wish that I'd done the double mx last year and been done with it. I now realize that the remaining 'natural' breast doesn't mean that much to me and not having to worry about cancer in the 'good breast' is a relief. So I'm scheduling the prophy, with reconstruction on both this coming winter.

 Good luck to you with whatever you decide.

1Athena1

One of the easiest decisions of my cancer treatment was to get rid of the left breast along with the right. It annoys me how cautious researchers try to be about that not making too much difference in non-BRCA women. Of course it makes a difference to have almost no breast tissue versus what you would normally have. It has no effect whatsoever on the current cancer but it has to affect new ones. 

I also had my prophylactic left  for reasons of vanity. I wanted more symmetrically reconstructed breasts. I am very happy with my decision. I have peace of mind.

faith22

Was glad to see this post, I have ILC one breast, the other breast bx with lots of cystic changes, hyperplasia etc, they want to do excsional bx that breast but I thinking of just getting a bilateral mastectomy. The ILC was not picked up on mamogram, very dense breasts, I also don't want to worry about this again down the road. Was also wondering if insurance would cover, also planning on having reconstruction at the same time.

glanter

I handle insurance for one of the Charleston groups and I have never had a contralateral prophylactic mastectomy denied by an insurance company in the 10 years we have been doing this. 

ruthlaurent

I had a mastectomy on my left breast when I was first diagnosed.  I wanted both removed, but they said that I really needed to get started on my treatment without any complications, so I agreed.  After all treatments were completed, I had a prophylactic mastecomy on my right breast with immediate reconstruction and delayed recon on the left(diep), against my oncologist and radiologist's recommendations.  They both said the same old thing about little chances of occurance in good breast.  My surgery was 14 hours long, with no complications, and I am extremely pleased with the results!! I love my flat tummy!  I will get stage 2 in 2 weeks on November 19, then I will get on with the rest of my life with a complete body!  I am 61 years old, so the numb breasts do not bother me.  My husband is loving the feel of 2 breasts against his chest when we hug!  You can read about my treatments and surgeries at http://www.carepages.com/carepages/ruthlaurent ,  You can also start your own website there.  It is free and easy to manage.  You must log on with your email address to gain access.

ruthlaurent

Oh, yes. The insurance does pay for it!

GointoCarolina

Thanks so much for all this input.I saw my oncologist last week and he was all for me having my right breast removed.He said it will cut the chance of a new cancer developing down to about 5%,but said it will not affect mets from the original.He referred me to an excellent female breast surgeon that he says I will really like..I am hoping she will help me find a PS to perform immediate fat grafting reconstruction.After all my research,this is definitely what I want.Hope you all are having a great night!

nora_az

I was told at first I could have a lumpectomy with radiation.

I opted for a double mastectomy DIEP procedure with immediate reconstruction. With my family history I had it in my head for the last 10 years that if I was hit with the news that I had breast cancer I would not mess around with it by trying to somehow save my breasts, I wanted them both gone. My decision never wavered when I found out the news in September that IDC was found in my right breast

vmudrow

Just had to chime in - I was diagnoised with ALH (precancerous) in January and because of dense breasts and family history (no BRCA) I chose to have prophylactic masectomies in May - my insurance covered it and I have been very happy with the results!! 

awjkej

I was diagnosed in 2003 with DCIS in left breast.  Right breast was clear.  My cancer was aggressive so I elected to have right breast removed when the left was.  No reconstruction.  No regrets!  Insurance covered everything!

Fearless_One

Yup, I will be having a BLMX, even though I already had lumpectomy and BRCA negative.   If I did not have dense breasts, I wouldn't be doing it, though.   But with dense breasts it's REALLY hard.  And I"m afraid even MRI's might just "confuse" cancer as being scar tissue and fibrosis, all of which I also have.

grammajan627

Bilateral prophylactic mastectomy Nov. 21, 2008 - TE surgery Oct. 7, 2010

I was dx with fibroid cysts when I was 21. My first biopsy was in 1985 - atypical hyperplasia. Years of mammograms, ultrasounds, magnified views, stereotactric biopsies and 5 more surgical biopsies resulted in prolific ductual and lobular atypical hyperplasia which increased the size of the ducts and traveled into the lobes. I was aggeresviely urged to have bilateral mastectomy (2008) - the surgeon and radiologist both agreed it wasn't if, it was when - probably right around the corner and probably with dire results. The decision was easy - in fact it felt like a burden had been lifted after all these many years.  I thank God everyday that modern technology could detect and follow the movement of this disease which probably saved my life. My aunt died of metastatic breast cancer (to bone cancer). I'm only 60 and have 3 children/7 grandchildren I want to see grow up!

vmudrow

Jani - I haven't found too many people that had ALH or ADH and have chosen surgery.  I was kind of the same, mother had bc, and aunt and cousin, I started have mammograms at age 30 and then biopsies and worries and when my last one came back ALH - I was done - had surgery and have been very pleased with the process - I'm 49.  Valerie

grammajan627

I do think it's a brave decision to have the surgery, and I still feel it was the right decision (despite the uncomfortable TEs!).

LLL-6500

I am scheduled for prophylactic mx on Jan 4 with complete reconstruction.   I was not ready to do this at the same time of my first surgery, but now I realized I Need to do this for me to have some peace and hope this does not happen again.  It does reduce the risk of recurrence, it is not 100 percent, but the majority of the tissue is removed.  It is a very personal choice and everyone is different and needs to do what is right for them.  Age, family history, previous cancer/pathology , all play a part in what we decide. 

Those of you who had already had PM, couple questions:  I started taking Biotin... were you told to stop this prior to surgery?  Fish oil needed to be stopped ...   Also, please tell me how sore or uncomfortable you were after all this. I''m nervous and scared of the unknowns.   My first surgery I didn't think was too bad, but then I was able to use my right side and arm.  This is both sides/chest having stitches, etc.   I was told I wouldmost likely have only one drain in the MX side,not both?  Have heard of others who have a drain on each side.  My PS did say it is a possibility, but not likely.  Interesting to hear what you have to say.  Thanks  Have a good day.