Uni vs Bilateral Mastectomy

Hi there, 

i agree everyone's situation is different, and you need to follow what you think is best for you.  I think the biggest struggle we all face is that we can not get any clear direction about our level of risk as everyone is unique and what worked for one person does not necessarily work for another and we still don't really understand why. That of course does not make our decision making process any easier.

In my situation I had a mother with BC separate diagnosis, separate breasts different cancers age 60. My niece BC diagnosis at 34 triple neg. my diagnosis age 51.

Now whilst my treatment recommended was Uni mastectomy, I elected to have bilateral. To make my decision I took into account, family history, my pathology and the likelihood that it would return/ occur in the other breast, what steps I needed to take to feel that I had done everything in my power to ensure I did not have to go through this roller coaster again.  I do not regret my decision and I would make the same decision again.

It is perfectly valid to be considering risk reduction, symmetry and body image when you are considering your options, healing is both a physical and emotional and mental exercise.  Stress can be a contributing factor to cancer as well so reducing stress wether real or perceived is also valid.

i also elected not to save my nipples as that increased my risk of return.  Post my decision I have also found out that genetic testing on my niece was negative, however we are still classed as a high risk family (BRCA gene is only a small % anyway)

my only advice to you would be ask lots of questions, get all the information you need and make the best decision for you, your situation is unique and your treatment is for you.

Sending lots of hugs - 

Chris xx

Thankyou lovely ladies for all of your words of advice and feedback. I have just found out that I do not carry either BRCA 1 / 2 GENES which is a massive relief and one I wouldn't change for the world. My gut says to take both, but I definitely take on board what Louise says in regards to being emotionally charged and scared at present. I guess my theory is that any type of risk reduction I can make, is a good thing. Even if it means losing my boobs. Thats me saying this whilst I still have 2 breasts of course so whether I have regrets later or not... who knows! Will keep talking to BS and nurse, family and friends and know I will make the right decision.. eventually!! Thanks again, xx

Hi B,

This is such a difficult position to be in and I too have been there. The girls have already given you great tips from their experience. While i did have both breast removed and immediate recon in hindsight I might do it a little differently.

In the crazy period of breast cancer diagnosis and treatment its easier to decide to remove your healthy breast at the same time as the affected breast for fear of a new cancer and needing to go through chemo and all the drama again. But the reality is that unless you are BRCA1/2 your chances of a cancer developing in the healthy breast is the same as the general population. So that means you have time to do the mastectomy/recon you need to do now, and give yourself time to think long and hard before you remove your other breast, which of course you can do at a later time if you choose.

I guess why I am saying this is that in a while after you have finished treatment and had your recon you will be able to make a decision involving less immediate fears. I very much miss my breasts and the sensation that I had and all that that means. I do sometimes wonder if I made a hasty decision and should I have waited until further down the track to decide about the healthy breast. Perhaps I still would have removed it, or I may have decided that it was too valuable a part of my body to lose.

The good thing is that you do have time if you choose to take it. I am 2 years post mastectomy now so the fears of chemo have faded a lot and might contribute to how I feel now.

Good luck with your decision, all the best LouieXX

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Hi there, everyone is different and we all make our own decisions based on our own experiences. I had a recurrence in the same breast (I originally had a lumpectomy), thankfully it had not spread to anywhere else in my body as Robyn mentioned can happen. However both my cancers were like Chris's not detected early in mammograms. One was 8 months after a clear mammogram and the other 6 months. This was my main reason for opting for the prophylactic mastectomy of my other breast. My breasts were very dense and did not image well. I was so fortunate to have found both my lumps and didn't want to risk missing any new cancer in the other breast. The risk is low for a new primary but in my case I thought due to imaging problems it was something I didn't want hanging over my head. 

I have certainly never regretted the decision. gather as much information as you can, talk to your Drs and breast care nurse, and then make a list of the pros and cons and this will certainly help with your decision making. There is no right or wrong, just what is right for you.

 Please check your messages as I sent you one regarding your request to join the online group. 

Good luck with the rest of your chemo, you are so young and with a young family as well... Be kind to yourself. 

Paula xxxx

Hi B, I understand where you are coming from, and have been there too. I had stage 2 grade 3 breast cancer diagnosed nearly five years ago. I first had a lumpectomy, but because it was bigger and more aggressive than originally thought, I went back and had a full mastectomy and level 1 lymph node removal (10 nodes). All nodes were clear, including the first sentinel node. I had 4 rounds of chemo and then 9 months after original diagnosis, went back and had a second mastectomy and insertion of tissue expanders. I was very worried about getting a new primary in the remaining breast, and as the mammogram had failed to pick up my breast cancer, I found it hard to relax. Just prior to my prophylactic mastectomy, I had a mammogram, followed by an ultrasound. The mammogram was clear, but the ultrasound picked up a suspicious lump. This was exactly what happened the first time around. Again I went through core biopsy, and regret that I had waited. Fortunately this time it wasn't cancer, but if ever there was a sign that I needed, this was it. I have never regretted my decision, and every time I hear of someone finding a second breast cancer, I am grateful that I do not have 2 breasts. Everyone is different, but for me, this second mastectomy has given me and my husband peace of mind. I agree with Robyn, that this won't prevent a recurrence, but it will prevent a new primary, so I felt that this was something I could control.

I am happy with my reconstructed boobs, and I am about a C cup, so look just the same in clothes as I did before my mastectomies. I wish you luck with your decision making.

Hello:):) I just want to clear something up,which has often been misunderstood on the blog.Breast cancer doesn't spread to the other side.If,you have both breasts off,it DOESNT prevent recurrence .If you are unfortunate to have your breast cancer come back,it doesn't spread to the other breast.It spreads  to other parts of the body such as bones,liver,lung , brain and others.If breast cancer appears in the remaining breast it will be a new primary cancer,and this is extremely rare.i am sure that having the other breast off does not ' definitely reduce the risk' .I had a single mastectomy 2 years ago ,followed by chemo and now tamoxifen.I had a grade 2 cancer also.I could have had both off ,but a single mastectomy is really quite easy to recover from.Absolutely minimal pain.However I have heard that a bilateral is a lot different.All the best for your upcoming surgery,and please stay in touch.Cheers Robynxox

Hi B,

I was 8 years older than you when diagnosed but the friends and family I know who were diagnosed in their 30's have all felt the same way as you.

I had uni skin sparing mastectomy with immediate reconstruction in June but after +ve BRCA2 result I'm booked in to have the healthy breast removed in 3 weeks.  In hindsight I would have preferred to have had both done at the same time but you live and learn.

If you haven't already sent a request I'd really recommend joining the Breast Reconstruction Online group and reposting your question in there. You'll find some pretty amazing and very generous women in there who will be happy to go into a bit more detail. It is eye opening some of the choices that may be available to you and some of the ladies may have used the same surgeon/s you are considering.

Glad you are still listening to your gut.

Jen