My Cancer diagnosis

 
  • Invasive ductal cancer, Grade III, intermediate grade DCIS 17mm / 42mm whole size, lymphovascular invasion, 0/5 nodes ER 7/8, HER2 negative, NPI 4.34

  • Invasive ductal cancer, Grade III, high grade DCIS, with comedo necrosis, size 29mm / 95mm whole size, lymphovascular invasion, 2/7 nodes positive, ER 7/8, HER2 negative NPI 5.58

  • 27/02/20 Bilateral skin-sparing mastectomies, sentinel node biopsy, and pre-pectoral implant-based reconstructions with SurgiMend mesh.

Those first tests resulted in a diagnosis of breast cancer. There and then. The same day. I was not prepared to hear that. I’d gone in just after lunch and by teatime I was a cancer patient. The tests revealed the ba*%@rd lodger was in both breasts. I had no idea. My body that I trusted had deceived me. Shock and disbelief. I’ll be honest. My first thought was “am I going to die” closely followed by “how do I tell my children and partner”.

From then onwards I found myself attending 2 or 3 appointments a week to consider surgery and treatment options. There is so much to hear and make decisions about. Did I want bilateral mastectomy with or without reconstruction? If so, what kind? I was told it was likely I would lose my nipples! Would I want to defer my reconstruction? Did I want a round implant or teardrop? What size? Larger breasts or smaller? Did I want to remain flat? Had I thought about DIEP (Deep Inferior Epigastric Perforator Flap) or LD flap (Latissimus Dorsi Flap). Understanding the number of surgeries for each option, the timescales, and recovery times were a lot to digest.

I had to consider the pros and cons. Make life-changing decisions during a time of fear (and to be honest limited knowledge). How would I know how to make the right decision? The implant reconstruction surgery is an easier surgery to recover from, whereas the DIEP surgeries are many with more scarring. Could I keep my nipples? No. The cancer was too close and so they had to go. Did I want surgery to take the form of a nipple (but obviously there would be no sensation, colouring, or function). All of the above has no guarantee. There are many risks with each option.

I learnt about drains and that I would likely have 4 sewn into me during surgery. That the nurses would provide me with bags to carry the drains around with and that the purpose of the drains was to extract fluids away to increase the success of healing. I felt sick!

Biopsy results advised it was “the right side of grade 2 cancer”. My consultant informed me, “this was a good cancer to have…”(If there is such a thing!). The surgeon would remove all the breast tissue and tumours and histology would confirm the size, grade and type of cancer. I learnt about lymph node removal and that this would be taken at the same time as the mastectomy surgery. I learned that hormone-positive cancer is easier to treat than hormone-negative.

Choosing the Foobs..

Introducing the Foobs. F refers to fake and oob from the word boobs. Put them together and it creates “Foobs”. It just made sense to me.

Discussions with nurses and consultants to choose my new ‘Foobs’ are surreal. Can you imagine how strange that is? Sat in a room with a stranger and your partner choosing a new pair of Foobs? Squeezing the implants and considering textures, risks verses benefits . But also understanding how I would feel about my body. How do you fully grasp or even begin to process the loss relating to your body parts? I knew my own body well, the slightly different shapes of the areola, the birth mark on my left breast and how to dress them. What worked for me and that made me feel confident. Emotionally and psychologically I was in freefall! F@*k You Ba@*%rd Lodger!! Implants being passed between me and my partner, each having a squeeze, both not really sure what we are ‘squeezing’ for or the benefits of doing so.

There were limited photographs of surgery options at the hospital. I wanted to have a pictorial understanding of where the scars would sit on my newly formed Foobs. How big they would be? vertical or horizontal? What they looked like directly after dressings are removed and how the scars would heal over time. Verbal description and reassurances still did not quash my anxiety or need to have more information.

I searched the internet for information. I wanted to hear from others that were going through or had been through what their experiences were. I wanted to see photographs and ask questions. I found it incredible that the breast care nurses had 3 pictures (and those weren’t even the type of surgery that was being recommended to me).


February 2020. Eviction Day!

I decided that round over the muscle implant reconstruction was the right one for me. You might see or hear it referred to (OTM). I chose this option as I wanted the least medical intervention and if all went as planned, hopefully the quickest recovery. Having the bilateral mastectomy straight to implant meant only one surgery. The balance was that the implant looks less natural than the other options and there could be complications such as capsular contracture (the implant can be compromised by infection or potentially if I needed radiotherapy further into my treatment). I wanted to evict the bas*%@rd lodger and focus upon recovery as soon as possible. I wanted my life back!

Covid had not restricted family support at the hospital in February 2020 and so Patrick was able to attend with me. I had prepared my bag with the obligatory new slippers, loose fitting vests (with easy access to the armpit), my drain bags and heart pillows (for under the arm comfort). I had my charger, earphones, body wipes, joggers, some fancy pyjamas and a newly bought dressing gown (to protect my modesty). I had my post-surgery bra stuffed in the bottom. If I couldn’t see it then I didn’t have to think about it. Who was I kidding? It consumed me. Every waking moment. And when I finally managed some sleep, I dreamt about it, and all the associated risks played out in gory detail. Technicolour surgery completed by the gardener!! Of course, I kept all these thoughts to myself…

I felt conflicted; relieved the ba@*%rd lodger was to be forcibly evicted but also sad and really scared of what my body was going to look like post-surgery. I’ve never been wholly confident about my body (what women is?!) but I had learnt to accept who I was. I had always looked after myself, I had been lucky and other than a dodgy scar on my lower back from a bulging disc I was in pretty good nick. But this was out of my control. Thoughts about how this new version of me would impact upon my relationship, let’s face it, no matter what reassurances were provided there was no guarantee.

That morning Patrick and I waited to be called to meet with the surgeon. We revisited my surgery plan and confirmed consents. I was sent for 4 injections of radioactive tracer into the 4 quadrants of both breasts to help the surgeons during my operation. ‘It is a small injection under the skin and next to the nipple near the diseased areas. In my case as the initial tests had shown the ba@*%rd lodger was in both breasts it meant that I had 4 injections into both boobs. Ouch! That stung a little. During the operation my surgeon used a gamma probe to find the nodes that they would be removing for testing. This is called sentinel node localisation and is part of the nuclear medicine I hadn’t realised that my urine would be a pale shade of blue after surgery. The nurses kindly informed me that it is the dye they inject to locate the cancerous nodes during surgery!

Patrick and I wandered through the hospital corridors having been sent from one cubicle to another, meeting with nurses, the anaesthetist and returning to the surgeons’ office. She gave me my hospital gown (I was stripped to the waist again) and she took out her black marker pen. I stood looking at her whilst she handled my boobs, drew a line down the centre of my breastbone, drew around my nipples in curving arches that made them resemble some kind of oversized eyeballs. Weird! Other black marking that would help her remove the ba*%@rd lodger was carefully drawn with what looked like to me the confidence of an experienced surgeon. “Thank God!”, I thought. She stood back, checked for symmetry, smiled and casually said, “ok Clare, I’ll see you in theatre”.

Patrick and I walked to the theatre floor. My clothes stuffed in my bag, new slippers shuffling on the corridor floor. I was shitting myself! Patrick gave me a kiss, turned and went back into the lift. I was on my own. This is when the real fear set in. I was taken through to the anaesthetic room, asked to lay on the bed (name and date of birth checked again) whilst the nurses busied themselves sticking monitors, checking equipment and trolleys with supplies. They were chatting to me whilst also trying to get cannulas into my feet!. Yes you read that right….. MY FEET! The bony part on the top. I presumed (wrongly) that they would go in my hands? Nope! A nurse told me that because of the bilateral mastectomy the surgeons (and team) would need to be at the top of my body and so the anaesthetist would be at my feet. Now I was not prepared for this revelation and at this point given my surging fear and inability to remain brave and strong was failing. There was no-way they could get a vein in the top of my feet. After 4 attempts on the top of each foot they told me they were thinking of putting the cannula into my neck. “I don’t bloody think so!”. Tears started flowing down the side of my face. Cold. The nurses noticed and tried to reassure me; they found a smaller cannula (a Childs one I believe). They told me that they would use this to put me to sleep however I would wake with adult one’s post-surgery.

Top Tips..

  • The breast care team will provide you with a form to complete and give to your GP. This provides you with a medical exemption form. You do not pay for your medication.

  • There is a cancer register that records your type, grade, diagnosis and treatment of cancer.

  • When considering breast implants there is a form to complete and sign to ensure your implants are registered to you should you need to be contacted in the future.

  • I took a photograph before my surgery so that when I had my nipple tattoos completed they had a colour and size match.

  • I was in overnight. Surgery is long (7hours) so make sure you have your phone/tablet charger or money/card for the phone. The hospital should provide you with a ward telephone number so your family can call to check on your surgery/recovery.

  • I slept on my back (1 drain either side). The heart pillows and a V pillow will help you get comfortable.

  • Ask to see the drains that you will wake up with. Mine were quite cumbersome and if your ‘other arf’ is going to be caring/ helping you post-surgery, it’s a good idea that they know what to expect.

  • Make sure you bring your drain bags. These will help you in those early days when you shuffle to and from the bathroom.

  • My surgeon wanted my drains to run almost dry before she would agree for them being removed. You’re asked to measure the amount of fluid over every 24-hour period. It’s hoped that it reduces. My drains were in almost 2 week post-surgery but I understand it all depends upon how yours drain.

  • I found the drains awkward but not so bad. Be prepared for them being removed. I was not given any pain killer (they snip the stitches put in during surgery to hold them in place) and the nurse ‘whips’ them out. The tubes are sat under the implant and come out of the side of the body. Patrick nearly had his hands broken by me! But the relief when they are out is amazing.

  • My son gave me his climbing carabiner to hold the drain bag up. The lower they are the better they drain. There is a photograph in the gallery.

  • You will feel like you’ve been run over by a bus. If the pain is raging, ask for medication. There is no need to suffer.

  • You will struggle with moving and the implants feel very strange. Some have described it like having plastic cups stuck onto your chest wall. Mastectomy surgery is not a ‘boob job’. Be prepared for swelling and lots of bruising.. It does go down.

  • I drank mint tea it helps with the wind from surgery. Be prepared!! I’ll leave that here…..

  • Because of the drugs you may find that you are constipated for quite a while. I drank a small glass (couldn’t stomach any more?!) of prune juice. It helped return me to a normal bathroom routine.