Post surgery complications – removal of breast implants

This time last week I was waking up from the double mastectomy and reconstruction surgery that I had anticipated for about 6 months.

This time last week I felt centered, unnerved and confident and never would have though that I’d be in the position that I am right now: implant-less & devastated.

Within a week of my bilateral mastectomy, my implant reconstruction has had to be deconstructed, leaving me looking disfigured, and feeling absolutely shattered.

This time last week I had no concept of what excruciating pain was. What was considered a 10/10 is now a measly 4/10 on the pain scale.

This time last week, I thought that by today I’d be at home with my new breasts recovering, but instead I’m still in hospital high on oxycodone feeling as if my space- bag look -a- like concave boobs are about to implode. Its simply awful.

Tuesday 6 June – Surgery #1

Initially, my surgery last Tuesday had gone really well and my surgeon was pleased with the results. As soon as I woke from anesthetic I looked down and I kept asking the nurse “is this normal, is this normal”? as my boobs were bruised, rippled, and full of dents. They were lumpy and misshaped as a result of the muscles being out of whack and because of the tightly packed surgical drains whose tubes hung out the side of my body to drain the fluids from the wound site.

Despite months of mental preparation, the whole thing was really confronting and a very clear reminder that a double mastectomy is NOT A BOOB JOB. It sole purpose was to remove the whole breast tissue to prevent cancerous tumors returning, so I had to remind myself of that whenever I cursed in pain or grimaced in disgust at my temporary ripply breasts. They would even out and become less inflamed over time. My surgeon said, “Look at them in 3 months, that’s when they’ll be beautiful.”

Captain hindsight aye. And there I was thinking those breasts were unattractive, god help me now.

It felt like there were a tonne of bricks on my chest as the pressure is intense. I resembled a T-Rex with my elbows glued to my sides with restricted hand movement. The pain would quickly remind me if I was extending too far and the sharp dagger like sensation would bring me back to earth, horizontal on my bed. The pressure and tension was certainly worse than the pain.

Thursday – Day 2 Post Surgery

It was on the Thursday when the fevers began and the unusual blotchy pink rash on both boobs appeared. Delirious with fever and excruciating headaches, I spewed and fainted causing concern for my Doctor as she and other surgeons hadn’t seen this kind of reaction before. Post surgery infections don’t normally show up so soon after surgery which is why this seemed odd. I was closely monitored and tested for everything under the sun.

Each day my blood test results would report back clear with no indication of what was causing the spikes in temperature and the rash, causing further confusion surrounding the cause of my problem.

Friday – Day 3 Post Surgery – A game changer

My surgery pathology report came in: my 2 left breast sentinel lymph nodes and breast tissue were FREE OF CANCER!!

Since that day 8 months ago when I heard the dreadful words , “You have Invasive ductal carcinoma” all I wanted was to know if it had spread. Did I have cancer elsewhere in my body? Was it in the Lymph nodes? If it was there, had a rouge cell made its way past the gates of the sentinel node into the lymphatic system and made its merry way into other parts of my body?

Finally I had the answer.

There was NO sign that showed cancerous cells to be, or more importantly, to have been in any of the two main sentinel nodes of mine. That means the cancer was isolated in my breast, in the form of the two tumors and they were now gone. And so was the surrounding tissue. All the breast tissue from both sides was analyzed and showed NO signs of cancer.

Thank. You. Universe.

IMG_0531

I am Free of Cancer. Cancer Free. Free from Cancer.

With a rip roaring headache and increasing temperature again, the celebration was quite the anticlimax being shadowed by how dreadful I actually felt. It would hit me the next day when I really felt the relief and joy.

I slept for 5 glorious hours straight that night, not even waking during obs so I guess that was the best & most relevant celebration I could have asked for.

Sunday – Day 5 Post Surgery

My surgeon discussed my case with a few colleagues and suggested the unusual rash could be caused perhaps by a microscopic bug that could have been attached to my port-a-cath. The port-a-cath was inserted above my right breast as an access line used for chemo. It had been there for 8 months with no problems, but they think that as soon as the port was dislodged that perhaps the “bugs” then escaped and contaminated the breast cavity wound during the bilateral mastectomy, hence causing this slight infection and irritation of the skin.

This could be just a rare case of pure, shit luck.

The obvious thought was that I might be allergic to the implants themselves, but this is not the case due to the way the rash appeared high on the breast where the muscle is.

With no real improvement the call was made on Sunday morning: remove the implants + flush out infection.

I headed straight back in for my 2nd surgery to have my new breasts removed. The implants weren’t the only thing stripped of me that day, so was 6 months of emotional preparation, positive visualization for recovery and a whole lot of energy. When my Surgeon regretfully told me of what needed to be done, I was at my lowest & most vulnerable point so far. It’s like someone moved the finishing line after a marathon, adding on an impossible extra leg that at the time I couldn’t begin to fathom.

Yes I kept reminding myself of that beautiful fact and gift of being Cancer Free, but on that day, I couldn’t even see past that fact.

I was done. I had nothing left. I was in so much physical pain, exhausted and all cried out. I just couldn’t believe it. And I couldn’t believe how I was going to face another 3 surgeries before I left hospital in a fortnight. I felt like I had already used up all the reserve fuel with the 2 week delay I had already faced with surgery having been postponed due to low platelets.

But I moved forward.

My surgeon removed the implants, replaced my surgical drains with tubes that are part of V.A.C VeraFlo Therapy.

V.A.C VeraFlo Therapy attached to the side of each breast

V.A.C Ulta is a Negative Pressure Wound system that continually cleans and flushes the wound site so the plan is to have this “flushing” therapy for the next 6 days to rid breasts of this infection.

There is a constant flow of solution being pumped into my breasts, if you can call them that. I can feel everything. Then every 3 hours, for 15mins the “flushing” happens on the left side and then the right, so 30 minutes of horrible pain. The first flush I experienced after the surgery was the most excruciating pain I have any experienced – it felt like boiling hot oil and needles being poured into my chest. I screamed and cried and wished my sisters and Seany hadn’t witnessed the agony I was in as it was clearly breaking their heart.

Endone & Morphine barely touched the sides. They quickly hooked me up to a PCA – Patient Controlled Analgesia which means I can control the pain with oxycodene. Because the flushes happen every 3 hours, it means I need to keep boosted up before this happens. It was significantly worse post surgery as the wound site was already extremely tender and raw still from the first operation only 5 days earlier. I’m getting serious thumb cramps from using it.

IMG_0558

At first, I would try and tell myself “you’re cancer free” over and over as a mantra, but it was no good. I just needed the past two days to cry, to acknowledge those enormous feelings of disappointment, disbelief and self pity. And to give my self permission to release it all as part of my emotional healing.

NOW

Today, I’m back and I’m feeling like myself again. I am surrendering to the process once again and moving forward.

I have my 3rd surgery tonight to make sure everything is peachy and the VAC VeroFloTherapy is doing it’s job. Then I’ll have another 3 days of flushing before the 4th Surgery that will take place on either Friday night or possibly Saturday morning.

The VAC VeroFlo therapy tubes will be removed and instead of being replaced with implants, my surgeon will need to put in tissue expanders. My skin has shriveled significantly since the implants were removed, and also due to the suction of the VAC VeroFlo Therapy. The implants I once had, will not actually fit in. She will pump up the expanders about 3/4 full and I will be in hospital for a remaining 5 days on antibiotics to monitor and prayer that there are no further issues.

The tissue expanders will stay in for 3-6 months, and I can get them filled up to the size I prefer over time. So that’s great. But I’m praying there is No rash and that this whole shitty curve ball was due to microscopic bugs that caused the infection. Because the alternative isn’t great.

My surgeon advised me that I need to be prepared that this might also all be simply due to a weak constitution from chemo.The low platelets and delayed first surgery was a clear sign of that, and this could well be another indicator of this.

She said there is a good possibility that perhaps my body just can’t handle reconstruction right now. If this is the case, then I’ll need to have no implants or expanders for at least 6 months. Just loose, skin flaps.

This is really hard for me for accept. Today I can rationalize that at least I have my life. And yes, I’m free from cancer. But fuck, it doesn’t take away how downright disturbing & emotionally gut wrenching this is. I just can’t see how I need to be tested any further. I was totally caught off guard with this current complication, so as much as I don’t like this possibility, I need to address it as much as it is my worst nightmare.

The road to recovery has been a dramatic detour for me so far, one that I’ll hopefully consider as a scenic route one day, once these 20 tubes and chords are removed from my body, and my beautiful breasts are returned to where they need to be.

 

 

 

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.