Double mastectomy & breast reconstruction : Tits not an easy decision

Jubblies, cans, knockers, hooters, tits, breast,bongos, melons, boobs, ta-ta’s… they come in all different shapes, sizes and names. And when it comes to deciding what type of surgery to choose in order to have these lovely lady lumps of mine removed, it’s no surprise that that these options differ just as much as well.

Breast cancer is tiring. It’s not the fatigue, the aching bones, sleepless nights, or long chemo sessions that I’m talking about. It’s the decision making that exhausts me. There are so many questions that need answering, and so many decisions that need to be made. And frankly, it can be a bit too much sometimes and you just want someone to tell you exactly what to do.

Having the BRAC 1 gene mutation isn’t awesome, but at least it helped me decide on a double mastectomy as it puts me in a 60-80% high- risk category of developing another breast cancer. If I have a double mastectomy then I will have no breast tissue left, meaning, that the chances of another tumour developing is pretty darn slim. What would seem to be one of the hardest decisions I would be faced with was in fact actually the easiest to make. I love a hand of poker now and then, but with the cards I’ve been dealt so far, I’m not that keen of a punter to decide otherwise. You don’t need to be Einstein to calculate the risk of those stats.

So that’s one decision made! And of course, the domino effect is that I’m now faced with yet another decision: what type of surgery do I choose? However, I’m feeling quite perplexed and apprehensive for a few reasons.

As you know, I’ve already had one surgery in Thailand. I decided to remove what I thought was a benign lump. In hindsight, perhaps I should have just had a biopsy, which would have possibly made my treatment and current situation perhaps a bit more straight -forward. But instead, I listened to 3 medical professionals who advised me that the lump wasn’t cancerous, and thus removal was best. There was no reason for me not to take their advice. I followed their suggestions and made what I thought was an educated decision. Wouldn’t you trust the professional opinions of 3 separate doctors?

I guess my faith has been tarnished a bit, and when I’m faced with going under the knife to have my beloved boobs removed, this is a concern and worry.

My trust has been compromised. This hasn’t really been helped by the fact that there have been a few mistakes made along the way since I’ve been back home in Sydney having treatment. For instance, firstly I had differing opinions about my pathology report and the actual type of cancer I have (triple negative vs. slightly Estrogen positive). Then there was the dilemma of conflicting treatment plans and confusion as to whether I would need to cough up $2000 per injection that I’d possibly need after chemo rounds which was later revealed to be incorrect information provided to me on behalf of the registrar. And then just yesterday, when I was at the hospital about to start chemo, I was informed that the reason I was so ill and nausea last week was due to the fact that the nurse didn’t give me the essential anti-nausea injection. She forgot. Initially I felt relief that this wasn’t going to be a weekly trend, but rather a one off mistake. At the time I was just thankful that moving forward I would get the injection at each session and thus avoid what seemed like a teenage passion pop fueled porcelain bowl party. But today it’s made me feel even more apprehensive about accepting medical opinions as gospel.

There seems to be human error presenting it self with small mistakes here and there which I understand can happen, but it’s not something that generates the kind of confidence I need right now when imaging my precious boobs being removed.

The 3 main options for my double mastectomy and reconstruction that I need to consider & ultimately decide on are:

  1. remain flat
  2. undergo reconstruction using my own body tissue (flap procedures)
  3. undergo reconstruction with implants : one- stage (immediate) or two-stage (delayed)

One decision I have made is that I want to feel whole. Complete. And this involves having breasts. So option 1 ) remain flat is not an option. My personal sense of womanhood and femininity involves having breasts, yes this is my individual sense of being. Breasts make up my womanhood – “my” being the operative word. I’m not saying that boobs are needed to make someone more or less of a woman or feminine, but they certainly contribute to my own identity, sexuality and is certainly weaved into my personal well-being.

From this stems further questions, do I have immediate or delayed reconstruction? Do I have saline or silicone implants? Or if I want to use my own tissue instead, do I use flesh from my tummy with a scar from hip to hip or do I use my inner thigh? hmmm both options actually sound pretty good considering the 5kg of beef I’ve packed on since starting chemo….

But then there’s the decision to be made as to whether I do a one or two stage surgery? Do I have implants right away or get tissue expanders and then have a second surgery for the implants to be inserted months later? Will my nodes be cleared? Or will I need radiation? Don’t they say that implants aren’t ideal as they can become tight and misshaped from radiation hence tissue expanders are preferable? But if I choose tissue expanders then do I really I want months of extra doctor appointments getting my tissue expanders ‘inflated’ with the chance that the nipples might be off centre? And then what if I wake with tissue expanders to find out my nodes are cleared and I don’t need radiation after all and could have just had a one- stage surgery with implants?

Questions, and doubts compounded on an already foggy chemo head is exhausting.

My amazing breast surgeon suggested that for reconstruction, my best option would be to use implants rather than using my own tissue. I agree with her. My gut and inner thigh flab can stay for now. Nothing a 10 Day Purium Transformation and 30 day Bikram yoga session won’t fix once I complete treatment.

Okay so I’ve ruled out option 1) and now also option 2).

So I know I want to undergo a double mastectomy with reconstruction with implants. But Do I want one-stage implants or two-stage surgery tissue expanders & then implants?

screen-shot-2017-02-22-at-3-16-15-am
Tissue expander vs. implant

Do I have a one – stage immediate breast reconstruction with a breast implant? This would involve having one more surgery where they check my lymph nodes, remove my whole breast tissues and replace the breast tissue immediately with an implant that is inserted under the chest muscle onto the chest wall. This is the most appealing option to me at this point. However my doubt lies in the idea of needing radiation with an implant. If my nodes contain cancer, then I will need radiation for 6 weeks on a daily basis. The traditional way of thinking has been that having radiation with an implant creates tighter skin around the implant which can be uncomfortably tight and  possibly misshape it.

There is also an 8% chance that my nipple may fall off if the blood supply doesn’t successfully function correctly. That means there’s a 92% chance of this not happening. These stats are good but still after a few blows it’s hard to ignore that figure 8…. Of course there’s options for nipple tattooing as a back up in case this happens but I really want to keep my own nipples.

And then there is the alternative surgery option of  a two- stage breast reconstruction with expanders & then breast implants. I would have my breast tissue removed, lymph nodes checked and then expanders inserted temporary. The expanders are designed to be periodically inflated with fluid over a period of months to stretch the skin and muscles and according to some surgeons are much more suitable in case one needs radiation. But what if I decide to do this, then wake up after surgery with deflated “balloons” to then find out I don’t need radiation at all because my nodes are clear?

As you’ve probably figured out by now, breast reconstruction after a double mastectomy is very different to a boob job or a standard augmentation.  A boob job is like adding some extra cushion to your cushion cover. Whereas Reconstruction is like removing a cushion from the cushion cover, making changes to the shape and size of the cushion cover and then adding in a whole new cushion. I’ve never been much of a seamstress so this is quite stressful.

With a breast reconstruction I will also need surgical drains for 2 weeks post surgery to filter out blood and puss like fluid from my chest wall. My surgeon described the fluids to be similar to that yellow scabby infection you get when you graze your knee. GAG!  So the drains will collect the fluid from the surgical area and deposit it into grenade like bulbs that will hang from drains at the side of my chest which I’ll need to empty throughout the day. This is awful to think about and makes my tummy churn.

It’s a massive surgery, one I’m not taking lightly. I’m making calls, I’m connecting with women who have experienced this first hand. I’m trying to gather as much information, personal experiences and medical advice as possible.

My breasts surgeon is amazing, She truly is. I’ve seen the before and after photos of many women whom she has performed incredible double mastectomy’s on and to be honest, the after photos are in fact more impressive than the before pics. She strongly believes that having a one -stage immediate breast reconstruction with implants and then possible radiation shouldn’t be a concern and does not pose sufficient risks to ignore. This is her recommendation. And she is one of the best plastic surgeons in Sydney.

I want to say Yes, lets do it. Let’s rock the one stage surgery, pump up the jam, and get these bad boys inserted! I want to put my faith in her expertise and experience and trust her opinion and those other professional colleagues of hers that also support the opinion that radiation shouldn’t alter my implants in the instance I need it.

However, I’d be lying if I said I was 100% confident in accepting this advice without further investigation and research, as this is the biggest and most confronting decision I’ve been faced with so far. I can’t yet help that ghastly doubt that keeps presenting its ugly face and I cant yet remove all the other small mistakes I’ve been faced with along the way.

So for now, my next step is to attend a reconstruction support information day next Tuesday. There I will listen to an array of breast and plastic surgeons (mine being one of them) describe each surgery option in further detail, and more importantly hear from women who have undergone each different surgery and share their experiences and lists of pros and cons.

I am trying to connect with as many other women who have been in my shoes, so will rack their brains (and boobs) for as much insight and information that I can in order to make my final decision as rock solid as my impending new additions.

One thought on “Double mastectomy & breast reconstruction : Tits not an easy decision

  1. You are certainly right in that there are a ton of questions surrounding breast reconstruction after mastectomy. Luckily your doctor (reconstructive surgeon) is open to discussing your options with you and helping you learn what might be best for your specific situation and your body type. I agree with you, I would need to feel whole again if I were in your situation.I came upon your blog post while surfing for similar posts and I’m going to see if you have written anything more, but if not I wish you the best of luck in making the decision which you probably have already made seeing as this was written almost 4 months ago.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s