1 or 2 ...how do you decide?

I looked right into my surgeons eyes and asked this question

"If I were your wife what would you do"? (And he knew that I wasn't asking about sexual reasons.)

Before I tell you this I will say, though, that I have many friends who have chosen to remove both for their own reasons and I do respect that. Of my friends who have, their reasons have been 1.) out of fear 2.) very large breasts and fear of not achieving symetry 3.) very small breasts and wanted matching new pair (but believe me when I say you do not et a new breast!) Here's why this was the right decision for ME:

He told me he would not take off a perfectly healthy breast (unless I demanded it) and that according to the breast MRI, the other breast was healthy. He told me they would follow it so closely, closer than ever before with annual MRI (which they have) and annual mammograms (which they have) and that if any changes did develop we would catch it early, maybe even early enough to have a lumpectomy. Now that I have had the single mastectomy and have the one breast remaining, I am very glad I followed his advice. Losing a breast (for me) has been  a huge loss sexually. (It has been about a year and a half) I had implant reconstruction which makes it look totally normal in clothing, but no nipple, no sensation, no turn on, completely NUMB (nobody warns you of this). Even if you have nipple reconstruction, it is not like you can feel anything there...nothing sexual anyway....it will forever be this way my plastic surgeon told me....all the nerves are severed in a mastectomy. It is numb from my sternum to almost my back and from my rib cae to my collar bone. Some women who had microsurgery with DIEP flap tell me that they have SOME sensation to the skin, but it is not sexual sensation. I'm just saying that for me, I would not do it. I cannot imagine having NO breasts. The reconstructed breast to me is like an unwelcome illegal alien woman sitting on my chest. She passes herself off to the rest of the world like she belongs there but to me I know her dirty little secret and I still can't get rid of her. I cover her up in bed. I hate having her here.

Just my two cents.

I had an entire list of pros and cons for myself. I interviewed over a half dozen survivors by phone and in person. Spoke at length with 2 breast surgeons, the doctor who did my stereotactic biopsy and 3 PSes. I logically and brutally went through everything I researched and knew about myself-inside and out. I had to do this because I felt very strongly right from the beginning that I wanted to do 2 and I didn't have any idea WHY I felt so strongly(and contentedly) this way. I certainly didn't want to do anything rash out of fear so I made myself list everything rationally. My resulting list came out heavy on the do 2 side. I won't get into all my reasons because we all have our own reasons for and against and our personal reasons are the most important for each of us as individuals.

But anyway, my overriding feeling in my "gut" said to do it. So I did. My final path report which my BS sent out twice showed the initial dcis, much more extensive, along with 3 invasive tumors in the bad breast and then in the healthy breast...extensive atypical ductal hyplasia in a large dense area in the center of the breast behind the nipple. My BS breathed a sigh of relief and told me if I hadn't made the decision I had made for myself, I would have been repeating the whole thing in 6-12 months.

Some of us wouldn't mind that probably but I absolutely wanted to avoid going through that again.

But even if nothing had been found, I would have still been content. In fact, I would have been happier. I didn't expect anything to be in the 'healthy' breast and when I found out it was a "ticking time bomb" (drs words) I felt more scared than I had at almost any other time. I kept thinking what if I didn't listen to my own gut feeling and instead had listened to my husband or friend and went for a single or what if my list of pros and cons weighted the other way and I did 1 based on logic rather than instinct.

All I can tell you is when I came on the boards in 2006, a lot of women said listen to your 'gut' and I did, and I'm glad. So if your gut is pushing towards doing 1 and all the tests and logic agree, then I believe you will be happier doing 1. But if your gut is shouting 2, then do 2.

It's not easy and I don't believe there's a right or wrong. You do what YOU feel you can rest easier with.

((BTW--I did not have an MRI, my insurance would not agree for one and I have no idea if it would have shown anything or not in the 'healthy' breast.))

Mom. I'm so sorry that you got this news.  I remember when I heard the same thing - that I needed to have a mastectomy - and I was shocked.  The BC diagnosis didn't surprise me, but the need for a mastectomy sure did.

I agree with others who've commented in your other thread that it's a good idea to get a 2nd opinion.  The surgeon I went to for my 2nd opinion agreed that a mastectomy was likely necessary, but he was willing to try a re-excision first, to see if he could get clear margins.  But then I had my MRI and it was clear that my breast was full of "stuff"; at that point I realized that the odds of a re-excision being successful were pretty slim.  But at least by then I was more comfortable with the decision, having heard the same advice from two surgeons.

That was over 4 years ago.  I had a single mastectomy and I'm still very happy with my decision.  I had implant reconstruction.  My breasts aren't a perfect match but then they never were. They are actually better matched in size now than they were originally, although the feel and movement is very different.  But one thing that I discovered is that with a mastectomy comes all sorts of possible side effects and I am so glad that I only have to deal with this on one side.  The phantom itching (it's driving me crazy even right now as I write this), numbness, the muscle aches, the occasional feeling of tightness across my chest.... these are all side effects that can happen after a mastectomy.  Either side, or both sides, can be affected. 

As for why I made the decision to have a single mastectomy, because I didn't want to have a mastectomy to begin with, I was not inclined to want to have a bilateral.  I really didn't want to lose sensation on both sides. Basically everything that Koryn wrote applies to me too.  Still, at the time I was making this decision, I would have gone with a bilateral if I felt that it really made sense. What my decision came down to was an assessment of my risk level to get BC again.  After having had all sorts of breast problems all my life (I had my first excisional biopsy at 16) and with a bit of a history of breast cancer in my family (my mother and one of her sisters), I expected my risk level to be about 40%.  When my oncologist told me that it was closer to 20%, I was delighted.  Since the average woman has a risk of 12.5%, I figured that 20% was bad at all - it means that there is an 80% chance that I won't get BC again.  Another way to look at it is annual risk, and my average annual risk is only about 0.5%.  So for me, those are risk numbers that I can quite comfortably live with and that made the decision to have a single mastectomy an easy one, especially considering that I didn't want to lose all the feeling and sensation on both sides - I really wanted to keep one natural breast. 

In addition to future BC risk, one of the reasons why many women have a bilateral is so that they don't have to live in fear of another breast cancer diagnosis.  Here's the thing about that: when you've just recently been diagnosed, of course you have a very high level of fear that this might happen again, and it's natural to want to do whatever you can to stop this from happening.  But as time goes on, fear fades.  Having had a single mastectomy only, I will be honest and say that for the first couple of years afterwards, I did worry.  I would start to worry weeks (months even) in advance of my annual mammo and MRI.   But the amount that I would worry got a bit smaller each time and after 2 1/2 years, I realized that my worry level was back to what it had been prior to my diagnosis.  In fact if anything, it's less now, because I've been through breast cancer and I know what to expect.  This isn't to say that having a bilateral to eliminate the fear isn't right for many women but it's worth realizing that the fear may not last.

One question of course is whether I would feel differently if I am diagnosed with BC again.  I'm pretty sure the answer will be "no", I'll know that I made the right decision (for me).  I made this decision based on the best info I had and I don't allow myself look back.  Whatever you decide to do, that's one of the most important things to remember - make your decision and move on from there, don't second guess it because it's easy to drive yourself nuts.

I'm sorry you have this decision to make. Of course it's your decision alone, and you've gotten so much valuable advice already. I'm going to offer a different perspective than most, but it's great for you to get so many sides.

After my DCIS dx 8.5 years ago, I chose the single mastectomy (left side) with immediate s-Gap reconstruction (same thing as DIEP, but the fat & tissue came from my butt--because I was only 28 at the time, had not had kids yet, and was very thin...no tummy fat at all). Not a lot was said at that time about the possibility of a bilateral mastectomy, just that I would be monitored very closely in the future due to the higher risk. As for how I feel about the post-mastectomy, I have never regretted it and I especially am glad I chose my own tissue for reconstruction. That was very important to me; someone else said that they still have the same skin, freckles, etc...and that's true. That's what I wanted in my reconstruction; I had to travel to New Orleans to have it done but it was worth all the effort. It's soft, it's warm, and yes, the skin does have some sensation, esp. now 8.5 years later (nerves can regenerate somewhat).I have no sadness about the "loss" of my breast, only gratitude that I "only" had DCIS and was able to get the mastectomy and then go on with my life. It was truly not nearly as bad as I'd feared, and I can't say I've ever missed my breast. 

Okay, now I will say that my only regret is not doing both sides at that time. As I said, not a lot was said to me about it. I know I asked if I should do it, but the answer from all my doctors was that they saw no need because at the time, it appeared healthy (but also, my DCIS-laden left breast had shown up "healthy" on mammo all the way till the end...it never showed up. I was "lucky" enough to have a palpable lump that they biopsied and while the lump itself was benign, the extra tissue excised was full of DCIS. That's how it was found.) So anyway, no one recommended the bilateral mastectomy. 

But 8.5 yrs later, I can say that I've never been able to relax. I've never been able to trust the yearly tests that say my right breast is okay. I worry every day. Perhaps it's b/c I'm still only 36, and I have two young children now. But I worry daily that I won't be "lucky"enough to catch something before it invades my supposedly healthy breast. I feel like I have a ticking time bomb on my chest. And now, I have no way to have another mastectomy because insurance will not pay for a prophylactic mastectomy. I have to wait until something shows up. It truly erodes my quality of life...no breast is worth that to me. Neither is any desire to keep sensation in my breast worth it to me (although I personally could care less. There is so much more to life than that, IMO! I have never missed the sensation I lost.)  I wish so much that I'd had it removed 8.5 yrs ago when it would've likely been covered by my insurance at the time as a bilateral mastectomy. My only regret, if I'd HAD had a bilateral done at the time, would be that I would not have gotten to breastfeed my sons--for that, I'm grateful I still had one healthy breast. It was a powerful experience after having dealt with BC. I just hope it truly was, and has remained healthy. 

So that's my 2 cents, as someone who's had plenty of years to think about it, and as someone who is happy with my original mastectomy and reconstruction...and who wishes I'd known to do them both back then. 

Best of luck to you in this decision. I know it's not easy. I hope it helps to have many perspectives. Ask lots of questions about your options and the coverage. In the end, it's your decision, but consider your own personality & temperament and how you think you'd handle living with the higher risk. For many, it's worth it to keep one breast...for me, it has not been. If I had it to do over again, I would choose the peace of mind--but then again, I'm quite a worrier. You may not be. Good luck in everything. 

I can only tell you how I decided to have bilateral mastectomies and that is not to say that that is how you should do it by all means.  I was burned out from work and at that time I could have had my leg cut off and been more happy than I was at that time.  I was so greatful to get to have surgery and get away from work.  I know that may not make much sense but that was the state of mind I was in at the time.  I did not research it enough and sometimes wonder what it would be like to have nipple senstions again.  And then on the other hand I am glad that I do not have to worry about either breasts.  It has been 9 years since my mastectomies and just recently started to really want breast reconstruction and now I am working towards getting that done.  What I can suggest to you is to find out as much as you can about your cancer diagnosis and treatment as well as immediate reconstruction procedures.  I only wish I knew about this site back then and am glad I have now.  One thing that I will never forget is the last day I had both of my breasts because my son paid for me to have the most fantastic 90 minute massage and I used that time to say good bye to my girls..

In my decision making process, I "tried on" a procedure for several days, assuming that was the one I'd be doing, rotating through my options until I found one which fit me.  My DCIS showed up only as a small spot on an MRI - not on u/s, not on mammo, no lumps, no clues.  Ultimately, this was a primary factor to me, since I realized if I'd not have had that MRI (which I griped about), I'd not have found the DCIS.  So what was to say that another episode would be easily found?  I opted for bilateral with immediate DIEP.  The incision used has given me full sensation everywhere but my nipples.  This is the choice that gave me peace, which is what I needed.  For others, "peace" is a different decision.  My bmx path report showed up with unusual tissue on my non-cancerous breast, so this could potentially have been a problem later.  I'm glad I went with my gut.

looking for the same answers to I take one, two or lump.  I was just diagnosed on Monday.  I have DCIS  invasive stage 1 grade 3 estrogen receptor positive.  I am waiting for the results of my genetic test to come back.  How do you decided what to do...I have gone from lump, to take one "I don't want to miss anything or have it be left behind to grow again".  To take both.  I dont want to do this again.

How do you decide.  There is so much information that my head is swimming and I feel like I can not breath let alone talk to ask questions.  But I am asking questions, and found this site.  What to do....anyone with some words, experiences, etc. 

I had a mamo in October - nothing/clean.  I started having breast pain in December, ignored it for awhile but it did not go away.  Finally went to the doctor in Januray and after "its nothing" tolets do an ultrasound, "its nothing" lets do and MRI, "its nothing" to lets do a biopsy, "Its cancer. 

It is small 5 mm-10mm but growing.  I am leaning towards the bi-lateral regardless of my genetic testing (mom had breast cancer) because if they could not find this, what else can they not see....

I was pretty peeved that I had to have a mastectomy for DCIS. Here I'd been getting screened like a good girl to avoid that very fate, and I still had to have it. I never considered having a bilateral, it was bad enough having to have one mastectomy.

I feel like I had my bout of breast cancer and the chances of more are low. Kind of like "I gave at the office." My surgeon told me that since I am small chested if I actually had a lump it would be evidient and that encouraged me.

In retrospect I think women who have bilaterals tend to be happier with the symmetry of their reconstructions. But they also have twice the chance of complications and problems with their reconstructions. 

I value my remaining 'real girl' and am glad I have her. 

Carolmarie- I agree with you.  I decided a dmx was best for me too,  I can not imagine the stress of wondering if I did enough.  Something that helped me make my decision- As I waited to go into MRI guided biopsy (b4 dx) a women sat bawling to herself.  She had a single brest removed 13 yrs. prior and had just received another dx in remaining breast.  She spent 13 yrs wondering only to have to start all over again with this bc crap! Another women at my side had kept her breast but was a total wreck weeks before every dr. visit and mammo.  Not a way I could function in my life with young children.  I decided pretty much then what I would do  "if ever".  Well just a month later ever came and knocked on my door.  I am scheduled for dmx 3/26.  Still anxious about the whole mess but confident that I am being as aggressive as I can.  Cancer isn't timid and neither will I be!

Dublin4- Absolutely!  You will def be in my prayers on the 1st.  Keep good thoughts and hurry back to this thread asap.  If you need to talk you know where to find me.  Send a PM if there is anything you need for moral support.  Go kick bc butt!  (((hugs)))

Tracie

I am three weeks into this and have learned so much from these posts. Thank you all.

 I had 1st mamo, 2nd mamo, core biopsy on the right breast, them an MRI, then a targeted ultra side on the left breast.  Right side has 8cm DCIS and the left has something that the radiologist said is fine. Hmmm. My BS says the right breast must go.

After reading and wrapping my head around all this, my gut tells me to do a bilat mx. I called my BS and told her my decision. She completely supported me saying, the left breast could be a ticking time bomb.

They have served me well but it is time for them to go. I am ready to do this. Surgery is set for March 1.  Listen to your instincts, take a breath and fight on.