deciding between uni- and bi-lateral - your story?

BustersMom - LOVE the avatar - I have a little tri-color rescue Chihuahua who has dh and me completely wrapped around her little dewclaw. 

I opted for a bilat.  I had two tumors in the affected breast, and the surgeon said that by the time she removed enough breast tissue to get clean margins around both, she would have practically removed enough tissue for a mastectomy anyway.  She offered lumpectomy and it was completely my decision, but at that point I just wanted to remove as much breast tissue as possible to reduce recurrence chances. 

As for the prophy bilat, I have a strong family history of b/c, including my mom who died of b/c at age 58.  I also had large droopy breasts, and when I talked to the ps about reconstruction, she said that since I wanted a nice perky new boob on the affected side, she'd have to do surgery on the unaffected one to get it to match the new one.  Since the unaffected one was going to have surgery anyway, I decided to just have the whole thing off to forestall any later recurrance in that breast, and just start from scratch with the reconstruction on both.  

It's an extremely personal decision, but for me it was one of the easier decisions I've made in this journey and haven't regretted it for an instant.    

I had multifocal and multicentric DCIS in my right breast, as well as a microinvasion of IDC.  After an MRI showed my breast to be full of "stuff", even though my surgeon couldn't say whether it was more cancer or not, I knew that I had no choice but to have a mastectomy.  Meanwhile, as this was going on, calcifications were also discovered in my left breast.  A stereotactic biopsy showed these to be benign and the MRI on my left breast came back clear.  I also had the BRCA test - it came back negative.   I thought about a bilateral, but with the benign biopsy results, the clean MRI and being negative for the BRCA gene, I decided to have a unilateral mastectomy. 

It's not that I haven't had problems with my left breast over the years - I've had two excisional biopsies, one ultrasound biopsy, and the stereotactic biopsy I mentioned above.  And my breasts were classified by the radiologist as being "extremely dense".   But the fact is that I couldn't justify and was not ready to remove a currently healthy breast.  I like the sensation from my breast, and particularly, my nipple.  It's important to me and it's not something that I'm willing to give up unnecessarily.  And while I know that my BC risk is about 20%, I prefer to think that this means there's an 80% chance that I won't get BC again.  Another consideration for me is that with my personal and family history, I'm high risk for other types of cancer - this gives me the perspective that I can't be removing all sorts of body parts because of cancer risk.  Lastly, having been high risk for years, I know that I can deal with the uncertainty of it.  I have lots of experience with call-backs and biopsies; I've learned not to over-react.  I'm now 3 years out from my unilateral mastectomy, and I'm very happy with the decision.  I know that I might get BC in my left breast but hopefully I won't and in any case, I'm happy for all the extra years that I've had this breast (and the sensation from it).

Of course, this is a highly personal decision.  We each assess our risk differently and what one person can live with, another person can't.  So my reasons for choosing a unilateral mastectomy could be someone else's reasons for choosing to have a bilateral.  Only you know what you can live with and what decision is right for you.  My best advice is to listen to what we all have to say, talk to your doctors and then decide based on what you can live with most easily, both now and over the long-term.

Hi,

Even though my BRCA test came back negative, I'm having a bilateral. The reason? If I manage to battle my way through this round, I want to do absolutely everything to avoid being in this position again. Cancer and illness in general is unpredictable, of course, but this is one area in which I can be proactive.

Hugs,

Annie

Hi Julie--as all have mentioned this if without doubt a very personal decision.  I was dx in September 07 with DCIS in the left breast--multifocal, grade 3, etc.  I agonzied for weeks and did lots of research and consulted 3 drs.  I ultimately decided on a bilateral mast with immediate reconstruction (latissimus dorsi)--and never looked back.  I have had my emotional ups and downs but have never regretted my decision.  I did it for peace of mind, symmetry, to eliminate any other therapies (tamox.), etc.  I am now 5 weeks out from my expander exchange...and doing very well.  My advice solicit feedback, research, and write down what's important to you. Hope this helps...take care--Erin 

Hey JulieR, if you look back several pages you'll find at least one other thread on the same topic, maybe more -- I posted the same question a few months ago. 

I recently posted this on another thread, describing how I came to a decision on the same question:

When I first learned (after lumpectomy + re-excision) that I would need a mastectomy, I was leaning towards getting a prophylactic mast on the other side.  My breasts have always been way too large for my frame (DDD cup) and I've never had really strong sexual sensation in that area, so for a while I was thinking "I'm not so attached to these - I'd rather reduce the risk and get rid of both."  But it upset me that some people in my life were so cavalier in encouraging this option.  When I told my mom that I was probably going to have the bilateral, she said "good for you!" in a sort of "atta-girl" voice that really bothered me -- I told her that the comment wasn't appropriate because there wasn't one right answer that I should be praised for having arrived at.  This is MY body we are talking about, any decision I make is an incredibly hard one, and all decisions should be respected.  It was like she was implying that women who chose to keep their breasts were vain or shallow or something. 

Then I started chemo, and I lost my hair.  This has absolutely been the most traumatic experience I've been through -- it felt, and still feels, like a loss of identity for me.  My whole life I've had nightmares about being bald; all of a sudden I was living the nightmare, every single day. And one day I realized that I didn't want to go into surgery knowing that I would be losing yet another part of my body that may very well be perfectly healthy.  After researching the actual risk to the other breast (roughly 4% over the next ten years or something like that) I decided that I could live with the uncertainty.  Of course I will always worry to a certain extent, but I don't think I am going to lose sleep over it on a regular basis, that just isn't me.  As others have said, it is a totally personal decision, and everyone deserves respect for whatever path she chooses to take.

I have opted for a unilateral mast and a reduction on the other side (DDD down to a C cup).  In addition to being slightly less lopsided, I see this as a way to gather more information, since they will look at the tissue they remove and tell me if there is any evidence of atypical cells. I will be having radiation and I plan to have a DIEP reconstruction early next year.  My surgery is scheduled for 12 days from now, on June 26th. Right now I feel good about my decision, but I imagine I'll have more to say after it is done.

Good luck figuring it out!

Lauren

I eventually had the tissue removed in both breasts (I like the sound of that better than the word "mastectomy"), but I did so in two seperate surgeries 18 months apart.  I was just not able to make such a major decision so soon after the shock of diagnosis and felt that I shouldn't have to, so I just went with what I had to do (a single mastectomy) and decided to wait to decide about the other breast until my emotions were more under control.

While going through chemo I decided that there was no way I ever wanted to do that again and so decided to have the tissue removed from the other breast as well.  (I also did reconstruction with implants).  For me, waiting to decide was absolutely the correct way to go.  I had plenty of time to think about it - over a year - and felt entirely comfortable with my choice.  I also knew what the surgery and long-term aftermath would be like, so I was much less nervous before the second surgery than before the first.

Even though I had to have two seperate surgeries, a uni-mast. is that much less physically traumatizing than a bi, so I don't think my recovery time was significantly increased.  (I did recover very quickly from both surgeries).  

Best of luck in your decision.

Kerry 

I have decided on a unilateral mastectomy. I have ILC, no node involvement, LARGE family hx, but the right side is clear. i do not feel it is best for me to get rid of the "good" one. It is too important to me, but that is my decision. Many well-meaning family and friends automatically asumed i would do a bilat. I happen to like my breasts, like how they feel sexually and would rather have one real one. This decision is mine alone and very personal. each of us can give you 10 reasons why we chose the way we did, but it has to come from inside you.

D

I'm BRCA1, have had ovarian 5 1/2 years ago, so when I got a lump in the left breast it was a no brainer.  However, I'm so glad that both are gone and I match (i.e. nothing right now except a camisole with foam inserts).  Personally I think it would have bothered me much more to have only one gone but everyone's different.

That is a hard decision to make.  In my case, I opted for a bilateral based on the amount of vascular invasion that was in the left breast.  Figured that the probability of cancer in the right was high.  I also opted for no reconstruction.  Figure if it returned, I didn't want anything in the way of discovery.  A mastectomy does not guarantee no cancer of the breast since they can't totally remove ALL the breast tissue, but it does cut down the chances considerably.

This is soooo helpful Julie!  I had chemo, then had RB removed in April, now 1/2 way thru radiation, and keep changing my mind about what I will do about bilateral or not, reconstruction or not.  Right now surgery of any kind just does not sound appealing.  I love hearing from Kerry about waiting for a long while after unilateral mast - I'm trusting that at some point I will know what's right for me.

-Leila 

Buster's Mom

I was diagnosed with left breast cancer in mid-April, and I decided to have a bilateral mastectomy, and I am very happy with my decision.  I talked to as many people as I could and got either first-hand or second-hand stories...it was interesting....the ones who had a unilateral wish they had done a bilateral, or at least still had doubts...no one who had bilateral regretted their decision.  The other things that played into my decision:  I am young and healthy now for surgery.  I didn't want to get hit with a ton of bricks again in another five or ten years and have to go through  another mastectomy when maybe I wouldn't be so young and healthy.  To me, it was not IF cancer would occur in the right breast, it was WHEN.  To do a unilateral, and if you have reconstruction, you will still have surgical adjustments to your right breast as they try to match up your breasts.  As years go by, your natural breast will gain weight if you do, and sag naturally as you get older, while your reconstructed breast will not change.  To have a bilateral mastectomy with bilateral reconstruction, it is easier to achieve and keep symmetry.  Also, you will not have to go for the mammograms (and other tests) every six months.  Finally.....my surgery pathology reports showed lobular DCIS in my right breast, which would have been that ton of bricks again in a couple years....all the doctors have been saying to me "good thing you did that bilateral."  Also, I am so happy with my reconstruction (tissue expanders).  Having a plastic surgeon stitch you up provides better results.  It is only three weeks since my surgery and I have already had two injections, and I have small symmetrical breasts.  They look much much better than all of the pictures we saw online, too.   

I say, go for the bilateral and the immediate reconstruction.  Right away, while you are recoverying from surgery and figuring out treatment, you are already "moving forward" with a new you.  And you don't have to worry about six month appointments and cancer in the right breast.    Hope this helps, and best wishes to you! 

I'm with Annie.  I want to know that I did everything possible to ensure that I never have to deal with this again.  I had multicentric bc in the left breast.  Hardest decision I've ever made (and it took me a month, alot of cigarettes, red wine, and tears), but I took them both off and am glad I did.

Am having exchange surgery on Tuesday and hoping that the new set are great.

Good luck with your decision. My thoughts are with you. 

Thank you for startng this thread!  I am in the process myself of making up my mind on what to do.  I was diagnosed 3 weeks ago, and have found everyone's responses here to be very helpful.  I have invasive ductal carcinoma in my left breast, I am 34 and there is no family history.  I am waiting on my BRCA results.  I am seriously considering both breast masectomy at this point.  I do not want to ever have to go through this again!

Hey Julie - great to see yuo back here!!!!

Amy

I asked about a bilat before my uni and the surgeon discouraged it, said he would require a MRI first and the insurance company would likely balk at paying.  After getting the path report that reflected widespread flecks of IDC plus LCIS and ALH, the surgeon now thinks taking the other one would be a good idea.  Onc is the one insisting on the MRI now which I did yesterday and I hope to never have to do again (techs said they had never had so mamy problems with a single MRI).  I'm hoping the onc comes around as matching the fake to the real is a pain!  I'd much rather have the option of going flat or chosing the size I want to be.