Making the Decision to Have a Mastectomy

If you've read my story, you'll be aware that my triple negative breast cancer was in my right breast and at the start of my journey, I chose to have the cancer removed by lumpectomy together with sentinal node removal.  Making the decision whether to have a lumpectomy or single sided mastectomy within 3 weeks of diagnosis wasn't something I was prepared for.  When the words "mastectomy" were mentioned I was horrified as I'd been told that the cancer tumour was reasonably small so a mastectomy seemed to be radical and a step too far.  If I'm honest, I also had images of horrific looking boobs and scars (not that I had seen any at that point but that's what the word mastectomy conjured up in my mind).  So, I chose lumpectomy and had a fairly impressive 2" scar across my breast and another 1" scar tucked neatly under my armpit.  Where the tissue was removed for the lumpectomy, I also had a pretty impressive crater where the tissue had been removed.  Although this had been filled at the same time as the surgery, the filling had migrated elsewhere so within a few months I had a crater.  It didn't really bother me though and in a bra you wouldn't have been able to tell.

During my treatment (chemo), I did quite a lot of research.  Triple Negative breast cancer is aggressive and there's nothing you can take after chemo/rads to help prevent the cancer returning.  With ER+ or HER2+ cancer you can take tablets or injections that definitely help prevent recurrence but with triple negative there's no magic lotions or potions.  Chemo and rads are your only line of defence - but the good news is that Triple Negative typically responds well to chemo - so there is some good news in there!

I joined some online forums and spoke to many women who had Triple Negative.  I was quite worried by the number who had had recurrences or metastasis (when breast cancer spreads to other organs in the body).  Now mostly, from my own research, spread is more likely to occur if the lymph nodes have been compromised (mine hadn't) or there was evidence of vascular invasion - when it spreads via the blood (mine hadn't) BUT I had an overwhelming feeling that I couldn't live with boobs that had tried to kill me.  You may think that's an over-reaction but I wanted to be proactive in the management of my cancer.  I didn't want to look back and say "I wish I had done X, Y or Z", so I asked to see my surgeon about the possibility of a double mastectomy.

Surgeons typically don't like to cut out healthy tissue and my surgeon was no different.  He made me several appointments and challenged me about why I wanted to do it, my expectations about the results, would I be able to cope with scars and also discussed options for reconstruction.  I was adamant that as much as I wanted to have a mastectomy, I HAD to have a reconstruction at the same time.  I couldn't be "flat".  Some ladies do and I admire them so much but for me, I hadn't realised it before, but body image was important.

I had researched all the different types of reconstruction and went into the meetings with "I want a DIEP and definitely don't want implants" mind set.  My surgeon doesn't carry out DIEPs (where they take tummy fat to make new breasts so you have a tummy tuck and new boobs in one which is of course incredibly compelling if you have excess fat), so he referred me to another plastic surgeon who in turn wanted a second opinion!  All 3 surgeons were concerned that with a DIEP I would get a small B cup on both sides and, being a diabetic, there was a concern about wound healing. 

As it happens, all 3 surgeons also agreed that I had very little fat on my tummy area - very surprising since I've always thought I was podgy - so it was a bitter sweet pill!  All 3 also agreed that implants or an LD reconstruction (using the muscle from your back and taking it around to the front to make new breasts, usually with an implant) would both work for me. 

I really wasn't convinced about implants.  I thought I'd feel like two balloons were stuck on my chest but I also knew that I didn't want a muscle taken from my back - due to the scarring, the pain that you could get long term because of that and also it used an implant so what was the point when a simple reconstruction implant would work just as well and be less painful with less scars?!

So, over the course of a few months, I had done a full circle and was now getting used to the idea of having implants.  Also, since I now hated my killer boobs, the thought of getting a new pair was appealing!

Before my surgeon would finally agree to the surgery, he asked me to see a lovely psychotherapist, specialising in breast cancer patients.  We had a lovely long chat and the more I spoke with her, the more I knew my mind was made up and by the end of the session, she was happy to recommend that I was a good candidate and had thought through all angles.

So that was it!  I was all set!  Surgeon had agreed and a date was set.  I had a few meetings with my surgeon to show him "inspiration photos" of what I'd like to look like (poor man, I think I drove him potty) but I'm very very very sensitive to symmetry and so that was very important.  Size was also important.  My surgeon prepared me that I would probably be smaller than I was pre-surgery because there's only so much you can do with the skin you have to work with and he estimated that my current breast volume was around 400-450mls.  He showed me an implant of that size and to be honest it didn't look very big BUT he did say that he would order a few others and he would put in as large as he could that would (a) not compromise my health/recovery and (b) would be a good fit for my overall size. 

Interestingly, I was all set to have 3D nipple tattoos.  In fact I'd set my heart on them because they looked so cool BUT my surgeon asked why I hadn't considered a Free Nipple Graft?  I'd not heard of this before and when I asked around, there was only one other person I found who had had it done.  Basically, during surgery, the nipple is removed completely, thinned so that nearly all breast tissue is removed and it's paper thin, a circle is cut into the new breast to expose veins underneath and the new skinny nipple is attached - hopefully connecting to the skin underneath to keep it alive.  The pros and cons are that unlike a tattoo they won't fade, they are your own nipples but the downside is that part or all of the nipple may not "take" and may die back BUT that would mean I would have to have a tattoo so it was a win win situation.

By the way, had my cancer been near to the nipple that option may not have been viable but mine wasn't.  Another concern that patients often have is that with an implant reconstruction, you can't have future mammograms so what happens if the cancer returns in the chest wall or along the scar tissue.  My surgeon reassured me that the positioning of my cancer was far enough from the chest wall for that not to be too much of a concern AND my Oncologist agreed to allow me to have 6 monthly CT scans to check so I was pretty happy I had covered all contingencies!

What I also took into account was that my cancer was Grade 3 (ie cells were mutating and growing rapidly) and when analysed, my tumour had a Ki67 value of 80.  What that means is how quickly the cells proliferate.  So for example if your tumour had a Ki67 value of 10, it would be much slower to grow than one that had a Ki67 score of 100.  At 80, mine was multiplying at the speed of light (my words!), so I know I've said it before, but I was lucky it was detected when it was.  Also, and this was frightening, once the breast tissue was taken away after the mastectomy, it would be analysed again by the lab to ensure there was no cancer present.  As I had a lumpectomy before chemo, there was no way to be absolutely sure that the chemo had worked (there's still no way to tell) but knowing there were no cells evident left in the breast would be reassuring.

We also discussed whether to go for pear (anatomical) shaped implants or round ones.  I definitely wanted the pear shape as I thought they would be more natural and we also agreed that they would be placed under the muscle.  There are pros and cons as to whether they go over or under the muscle but as I was worried that my skin was a bit on the thin side on my chest, the implant may have been more visible over the muscle, so we opted to go under.

So .............. that's how I made my decision.  I talked to lots of people, did tons of research, had great meetings with surgeons and then made a decision that I knew I could live with.  For each person it'll be different but I went into the mastectomy knowing I was doing the right thing.

Please see the next page for the story of my actual reconstruction.