Single or double mastectomy?

Great advice above about surgeons not having the right to make you feel silly. Don’t allow it. It’s your body, and you know what’s best for you. It’s most def not a silly decision to have both removed, especially after having multiple lumps and changes detected. 

@Locksley thank you, thank you, thank you for your honest feelings on this topic.  I was accused by some BCNA mods of scaring some members by my honest feelings on this topic a while back!  I really think we should be able to express our feelings on this forum and not have BCNA "paid" staff monitor us denying our feelings.  I totally agree I also wonder why I didn't have both boobs off!  Being in the public system is a different scenario!  

@JayMB that was definitely a good call to have a mammogram when you did. 

@Keeping_positive1 I had a single mastectomy on advice from breast surgeon after lumpectomy showed it was much uglier than first thought in May 2020.  I was in shock when first told and it wasn't suggested or talked about having both removed. Appointments moved quickly.  I've not long had first mammogram after 12 months of treatment and sometimes it has crossed my mind why I didn't just have other boob off.  I wonder if in time I do want to have removed I can or if there is a time limit on these decisions.  I am in the public system. 

Each year I have my mammogram and ultrasound I really wonder why I didn't get both my breasts removed!  
Some don't have that same feeling, but some certainly do!  The fear of a recurrence in the breasts never leaves me! 

Also just wanted to add your comment about 'specialists thinking you're silly' really resonated with me.  A big part of my journey has been about coming to the realisation that I don't need approval about my concerns!  If it matters to you, it matters to you and it is disingenuous for the specialists  to pretend that these are not valid options and concerns when they are actually so obvious and instinctual to this situation!!!!

Hi @JayMB

sorry to hear your news - there's so much to take in and decide so quickly.  I was diagnosed  last year - like you not everything was visible and after initial lumpectomy & auxiliary clearance, I had to return for a second wide excision a week later to try and get a margin.  That was also unsuccessful so onto a mastectomy.  My surgeon supported my choice to remove both breasts as completely reasonable even though there was no changes to the right.  She was very clear that even though there was no scientific evidence for the removal of the second breast many women choose it and she could understand why and was supportive of that.   After six moths of chemo I had bilateral mastectomy in December 2020.  I have no regrets and it is relieving that I won't have to have mammograms or breast surgeries etc going forward.  

Like you I was offered and intended to go with immediate DIEP flap reconstruction but after enquiring about complication/surgical return rates I decided against it.  I share this because I had post surgical complications from lumpectomies which were really tough to deal with and required further hospitalisation, medication and massive impact on my family as well as myself. I was the outlier in all of that so not at all likely in your situation but it left me feeling that did not want to have more surgery (s).   I found this website about aesthetic flat closure helpful in feeling at peace with my decision for double mastectomy with no recon.  https://notputtingonashirt.org  It's nearly six months from surgery now and I'm comfortable with my flat, no nipple chest.  
Best of luck with everything.  When I was trying to decide what to do my best friend said to me 'there's no wrong decision' and that was so helpful.  They are just decisions about what feels best to you at the time - you really can't get it wrong.  Warm wishes, Pru

Thank you so much for your comments and advice. 

Hi @JayMB
Things have changed a great deal since my first diagnosis in 2006. At that time, there was a definite reluctance (particularly in regional areas) to offer a DMX. I had to travel to Melbourne to find a surgeon who was willing to do what I wanted.

I've never regretted getting rid of the treacherous 'good' boob. It most certainly wasn't my friend as we all discovered when it finally made its way to the lab. Even if it had been deemed to be be nonthreatening, I would never have been able to relax while it was sitting there, in plain sight, potentially cooking up a storm.

Reconstructive surgery has changed a lot since then too. I sometimes wonder if it's gone a little too far when it comes to offering elaborate solutions when some of us would just like a set of tits under our shirts and are not too worried about whether they look and feel like 'real' ones. The overall impact on our bodies while striving to look 'natural' may also be sidelined to a degree. These are really significant operations that can have serious complications. Or not. Depending on factors we can't control.

I'm sure that there are some people who regret getting rid of both, but I've never met anyone who has told me they wished they had made another choice when that was what they decided to do. It all depends on your circumstances and the advice you have been given.

It sounds like there has been a degree of synchronicity about your diagnosis. I think you should follow your heart from now on. Which is no way a scientific approach. Mxx 

My cousin opted for a double mastectomy with implants and her daughter talked her into going up a size as she was quite small so anything’s possible.