Thoughts on Removing a Healthy Breast

blessedby4

Have been diagnosed with IDC in left breast only...surgeon says there is less than a 5% chance of recurring in other healthy breast.  I am scheduled for mastectomy on June 1st and still waiver on whether to remove the healthy breast.  Seems like all the statistics are "how you interpret them".  Any thoughts??

baywatcher

Blessed-

This would be my question. Do you like your breast? Seriously, some women don't. Do you enjoy the sensation from your breast? If you remove it, the sensation is gone forever. Do you fear getting cancer in your remaining breast if you leave it? Can you live with the fear (if you are scared) or will it make you crazy? Remember, after it is gone you can not put it back on. Only you can answer these questions. Just think it thru. I personally would not remove a healthy breast but I did get cancer in my remaining breast after my first mastectomy. Good luck on a really hard decision.

blessedby4

Have never really dwelled on my breasts, until now, guess they have never been that important.  Fear of going through this again...wouldn't we all not want to relive this but not sure if I would be worrying about this daily.  baywatcher..what type of cancer did you have?  Any family history?

Alicia70598

I had a bilateral mastectomy and do not regret it. My breast surgeon recommended it because my breasts were dense and very hard to screen. I don't know what the chance of a new cancer would have been, but I'm not sure I would have trusted that number if it were low. My likelihood of developing the first cancer was higher than I was initially told.

Baywatcher raises some really good questions. In my case, I couldn't think of a good reason to leave the other breast. I hope this has been helpful. Good luck with your decision.

lexislove

I decided NOT to remove my healthy breast..at this time. Some woman do remove it so they can have better symetry regarding their breasts or they want a "peace of mind". When they say that they mean not having to worry about mammo's ect. When they remove a breast they remove as much breast tissue as possible, that being said, not all breast tissue can be removed. Although removal of a breast can lower your chances of a future BC a lot, around 95%, there is always still a chance.

In my situation...I was told I have about a 20% LIFETIME chance of developing BC in my healthy breast. I'm 31 now. I look at it as 80% chance I won't. The odds are in my favour and I feel comfortable with those numbers. I do not have a family history of BC or ovarian cancer. I'm also ER+ so I will most likely be taking some form of anti estrogen pill for a while which has been proven to reduce the chances of developing a "new" BC by approx. 50%. I have also made life style changes to help further reduce my risks. If I my BC was Triple Negative, ER-, PR-, Her2-, I would have probably decided on removing both breasts.

Even though I had no choice but to have a right mastectomy, I feel awkward with doing a self breast exam. I'm not sure what to look for, and what is "normal" on my implant breast. I do not have dense breasts, they are easy to screen, and I like to be able to feel my healthy breasts for changes / lumps myself on my own time. Having a right implant makes me a little nervous about what to watch out for.....having two implants would just add to my anxiety.

Also...I've had it when it comes to surgeries. I still have to get my final implant and I cringe at being put under again.

This is a very personal decision. and each woman has a different view. Younger woman tend to go towards the bilateral route I think because of cosmetics and fear. I do think fear plays a big..big roll on the amount of woman opting for a bilateral mastectomy. Granted, If a woman has a strong family history or is a BC gene carrier then it is waranted. I strongly feel that high number of  prophylatic removal of breasts are not really necessary.

Good luck on your decision and don't feel rushed to make it....be well.

S.

Anonymous

Not to be self promoting... but on the Surgery forum, I posted a link to an article about the survival benefits of contralateral mastectomy.   Look for "Making the Mastectomy Decision."  Bottom line is that the significant survival benefit is really only seen in very early stage, premenopausal women with ER- cancer.  I fall into this category and had a double MX and I love my new breasts!  They look great. 

I don't know that I'd have taken the healthy breast if I'd not fallen into this category. That's not to say there isn't a benefit that comes from peace of mind, of course.  If you'll sleep better at night with both of them off, that's fine.  If you really want to keep your breast, you can get lots of additional monitoring to make sure it's healthy, take Tamoxifen, and live with the probably very small risk.  But this is really about what risk YOU can live with, and that is a personal decision.  

scrappy_survivor

removed mine & have never looked back. have no regrets it was the right choice for me.

LorenaB

I seriously considered removing the healthy breast.  I was a DDD cup and had a sort of conflicted relationship with my breasts, LOL (I breastfed my son but it was a struggle, etc. etc.).  My situation was that I had a lumpectomy and re-excision but they could not get clean margins.  By that time, they recommended that I do chemo first and then have the mastectomy.  Losing my hair was very traumatic for me, and the thought of going into surgery to lose another body part that most likely was completely healthy... well, I started to rethink the idea of a bilateral mastectomy. 

I ended up having a unilateral mast with an immediate reduction on the other side.  The biopsy of the tissue they removed was completely normal ("benign breast tissue" -  hooray!) which made me feel more confident in my decision to keep the breast. I love my new full C/small D cup!  I had a mammogram and MRI of the remaining breast in November, and so far so good. I am also taking tamoxifen which does reduce the risk of a new cancer in that breast.

I had a delayed DIEP reconstruction two months ago. My new breast doesn't quite match the original (reduced) one -- it's a bit smaller and the shape is slightly different -- but once I  put on a bra and get dressed it isn't really noticeable.  I am confident that my ps will even me out in Stage 2 surgery this August. I'm glad I still have one breast with skin sensation -- I've never been super-sensitive there but I do miss having a nipple on the recon side. 

Overall I am very happy with my decisions -- but figuring it out was a tough road.  I weighed the "science" (chances for recurrence etc.) with the emotions and came out with a path that was right for me.  Take your time, you'll figure it out too!

Lauren

arbojenn

What did you decide to do?

I had only one breast removed when I had invasive ten years ago.  I had it reconstructed because I did not like the cyclops look and it freaked me out to see my chest winking at me when I looked in the mirror.  Now I have a recurrence in my recontructed breast and have to have that taken out.  I approached my surgeon about having the other one out, too, because of the same cyclops issue. (I am in my late fifties in case that means anything.)  She said she will not do it at the same time as she needs to remove such a large area that I will have to have skin grafts.  Maybe down the line, she says, she can remove it.  I have TRICARE--military dependent insurance--though and I don't think they will cover it.  Totally bummed.

nelia48

I had decided NOT to remove my other breast, but after all is now said and done, I wish I could do it over and have it removed.  After going through horrible chemo, surgery and then that barbaric radiation where I burnt to a crisp, the thought of maybe having to do it again just sends shivers up my spine!!!!!  But remember, I'm 61 years old now, so I'm in a different age group from most of you who are younger.  I look in the mirror and feel like a freak of nature right now.  The scraped me right down to the chest wall, so I'm hollow on one side and a very droopy boob on the other side.  Not a pretty sight at all.  I would rather have been flat chested!!!!

ddlatt

i had a bilateral mastectomy in november 2008. my choice was based on the fact that i have a family history (mother and grandmother) of breast cancer, my tumor was grade 3, and i'm triple negative (ER-, PR-, HER/2-). i had two nodes removed and they were negative.  but i never wanted to deal with mammograms again or the stress of waiting for the results. also, i have always wanted a flat chest, i have always despised wearing a bra, so i am super happy with my new body!!! the surgery only lasted 1.5 hours, i was home in less than 24 hours, and working and driving again in three days. i had chemo and am now going through radiation. i have no regrets, especially since my oncologist told me that with the bilateral mastectomy and chemo and radiation, i have reduced my chances of cancer recurrence to 4%. 

hrf

I was dx in Nov 2004 with triple neg, IDC. Also found out I was BRCA2+   Now I have second dx in other breast - ILC ....anyone BRCA+ needs to consider the risk.

Anonymous

I concur with hrf - when I was diagnosed, my team had me that the brac tests - even though I have no family history (I was 44 at diagnosis). They said the outcome of that would help determine my surgical course.  I was not brac positive, and my tumor was very easy to remove with lumpectomy - as far as location, size etc.

For some reason, I am not that worried about recurrence in my healthy breast - I am way more concerned about systemic recurrence from this cancer.  My surgeon said he hates to take healthy tissue.  I also have a good friend who went thru this - she had to have a bilateral mastectomy due to tumors in both and the size and location of the tumors.  She encouraged me to keep the healthy breast if possible.   

In my case I feel like the monitoring and hormone treatment will do a lot to protect me and detect any changes.  Each case is SO INDIVIDUAL!  So many factors go into it.  

BRAC results would be important.

I support whatever decision each of us makes.  Good luck with this!

Renata

I wouldn't never ever remove my healthy breast, in fact, I constantly think that I should have insisted on having neoadjuvant chemo to shrink the tumor and then a lumpectomy, that was what I wanted. A lumpectomy can always be followed by a mastectomy if clean margins can't be achieved. A mastectomy is definitive and for me it's been emotionally devastating. I feel I was pushed to have a mastectomy. I was terrified of dying. You still have time to research your options. Listening to others may help but in the end only you can make that decision and only you will have to live with the outcome later. Don't let anybody rush you into anything.

BEST WHISES.

Dawnbelle

I am confused by this thread. I just left my bs office & he told me I am 5 times more likely to develop bc in my other breast than someone who had never been dx with bc.

I am still deciding between re-excision of my lumpectomy & mastectomy.

The first lumpectomy done last Monday was to remove a lump they all told me I should leave alone, it was nothing.....ummm, good thing I didn't listen....

Carolina59

I was first diagnosed with DCIS & IDC in my right breast. I planned to keep my left breast. In the course of all the testing prior to my surgery (PET, CT), my breast surgeon sent me for breast MRIs of both breasts. The MRI found something suspicious in the left breast as well (not picked up by mammogram or ultrasound), which was confirmed DCIS by MRI-guided biopsy. I then decided to have both breasts removed, which turned out to be a good thing, as the final pathology on the left breast found multifocal DCIS, rather than just the one area picked up by the MRI. Honestly, at the time I was devastated to lose both my breasts, and I still miss them. However, BRCA2 came back with a variant of uncertain significance, and two years out, I feel like I've done everything possible to prevent the disease from recurring.

Good luck with your decision. It is not an easy one.

Lolita

Since I had extensive LCIS as well as IDC in my left breast, I removed my right healthy breast. I miss my breasts very much, but I am so happy not to have to do mammograms or MRIs.  My breasts were so dense that I did not feel safe with observation.  I also feel like removing just one breast might have made me feel less whole since I can get away with  being flat and not wearing a prosthesis. 

lisasayers

I had IDC in my left, but my breasts were VERY dense.  I decided I didn't want to deal with all the poking and prodding...had a bilateral on October 24 and don't regret a thing.  Love my new gals!

ghety

I had them both removed (1 was healthy) in late January. I have no regrets and I have peace of mind. I did it to give me the best chance possible, I didn't want to make these decisions again, I didn't want radiated skin, and I wanted symmetry. Its not an easy option thats for sure, I had a rough couple of days imagining what it would be like, but now the anxiety is gone and I am very pleased with my new breasts.

ghety

oops! sorry, didn't realize I was on the IDC forum

achen2iron

Had my "healthy" breast removed - had LCIS X5 in it. Never showed up on mammo or MRI. I had a TRAM and would have had to have the healthy side reduced anyway. Had skin sparing mast. so still have sensation evreywhere but the nipple. My old nipples were never that sensitive anyway. LOVE my new "breasts" way more than the old ones.

noellech

Dawnbelle, I don't think 5 times is correct. I was told, similar to lexislove, that the number is more like 20% lifetime risk in remaining breast. A regular person has about a 12% risk of breast cancer. So that is not even double. Tamoxifen cuts your risk in half to about 10%. Ask your surgeon to clarify so you really understand your risk before you do anything permanent.

noelle

ptjen

I had a left-side mastectomy last October and assumed I would eventually have reconstruction (but waited in case I needed radiation). Since then, I've reconsidered. I don't want anything (i.e. an implant) to potentially hide a recurrence and the reconstruction methods that would use my own body tissue seem too extensive. But I hate this lopsidedness and want to limit my future risk for another cancer to as little as possible (this is my third cancer). So removing my right breast is probably what I'll do. I decided to wait a bit and give the prosthesis a try, but I think it's the way I'll go.

ShellyJo

I had lumpectomy in Oct 2008. I feel like a ticking time bomb. I thought long and hard about getting the double MX. Saw plastic surgeon May 29 2009. She told me if it were her she would do same thing. I am having immediate reconstruction with  mentor jelly implants and alloderm* I think thats the term. I wanted immediate because i don't want a series of visits to the O.R. She said they will be smaller than my natural large C cups. But being large breasted all my life I am looking forward to having smaller, sportier breasts. I am scheduled in July for my surgery. My surgeon said its almost 100% of not having reoccurance or new cancer in healthy breast. Also having ovaries removed. Not at same time. I can't fantom the thought of going thru the cancer treatment shuffle again for the other breast in the coming years.

ShellyJo

Also My BS is being very thorough to make sure there is no cancer in good breast. I had mammo last week and I am scheduled for MRI one week prior to surgery. 

Dawnbelle

I removed my left & kept my healthy right.(Healthy according to MRI.)

Just this past Monday, June 8th? Yep, that was my day...

I felt I was in a panic, uncertain of my decisions & that I could always remove the healthy breast.

Putting it back on? Nope, that doesn't work. 

I was yelled at & corrected by members of my family, telling me how vain & selfish I am, taking a chance it may come back.

Hey, I accept it will probably come back, I accept that I will have to fight & face this again.

Ultimately it was my choice, a choice I have to live with.

OH! And I LOVED my boobs! I am sure that factors into the equation.

When I get to reconstruction I will go smaller than this full C...I have now.

What was hot & sexy when I was 35, just hurts my back at 43!

Emily2008

When I was first dx I had only the breast with IDC removed.  I saw no reason to remove the other one, and I figured (as did my bs) that we would be aggressively monitoring my healthy breast and would catch anything that seemed bad.

All of that was how it was supposed to turn out, until I found out that I'm BRCA pos, which wasn't until 3 months after my first mast.  At that point, it was a no-brainer to me to remove the healthy one.

I, too, liked my breasts just fine.  But my odds were so high that I couldn't live with it.  

I think if I weren't BRCA pos, I would keep a healthy breast.  I personally am not the type to live with fear that it would come back.  Not to say that it wouldn't cross my mind, but I mean I wouldn't struggle daily with the fear that my healthy breast had become cancerous.  So, I would've been fine to leave it on.

P.S.  Hi Dawnbelle!  Good to see you posting

rdrake0

I went and had 3 different opinions about my BC surgery.  The first doc said single mast, the second said double mast.  The third one said lumpectomy.  This last one is the one I chose.  He had to go back to get clear margins, but I have to say, I do like having sensation in my breast - even though radiation (I think) caused a burning/stabbing sensation inside my breast for two months afterwards. 

noni1

I had neoadjuvant chemo to shrink my mass in my left breast first.  I had such good results with chemo that it even softened up and killed two of the 3 lymph nodes that were effected under my left arm.  Before I had surgery my surgeon sent me for an US of my breast and they could not even find any signs of a mass.  I was so relieved.  I had made my mind up to have a bilateral mastectomy.  My surgeon and oncologist both recommended a left lumpectomy and left lymph node dissection,  I was told by many nurses that my two particular doctors never recommend this, so I must have really responded well to chemo.  The decision was made to go ahead with the lumpectomy and if my margins were not clean I then would have a bilateral mastectomy and removal of lymph nodes, everything was clean, so for now my decision was made for me.  I know this does not help a lot of women, but it worked the best for me.  I had radiation after surgery and I have to say that radiation was worse on my breast then surgery.  It burned my skin and I had to stop for almost two weeks to let my skin heel and it makes you so fatigued you want to sleep forever.  So, for now I am glad that I did not have to remove either breast.   God bless you all. Keep a positive attitude and remember you can do it.

Cindy 

noni1

I had neoadjuvant chemo to shrink my mass in my left breast first.  I had such good results with chemo that it even softened up and killed two of the 3 lymph nodes that were effected under my left arm.  Before I had surgery my surgeon sent me for an US of my breast and they could not even find any signs of a mass.  I was so relieved.  I had made my mind up to have a bilateral mastectomy.  My surgeon and oncologist both recommended a left lumpectomy and left lymph node dissection,  I was told by many nurses that my two particular doctors never recommend this, so I must have really responded well to chemo.  The decision was made to go ahead with the lumpectomy and if my margins were not clean I then would have a bilateral mastectomy and removal of lymph nodes, everything was clean, so for now my decision was made for me.  I know this does not help a lot of women, but it worked the best for me.  I had radiation after surgery and I have to say that radiation was worse on my breast then surgery.  It burned my skin and I had to stop for almost two weeks to let my skin heel and it makes you so fatigued you want to sleep forever.  So, for now I am glad that I did not have to remove either breast.   God bless you all. Keep a positive attitude and remember you can do it.

Cindy