Hello! I am Lisa, 36 years young, born and bred in Edinburgh and mummy to my wee 7 year old dude Cameron!
I was diagnosed with secondary breast cancer ‘de novo‘ (at the same time as primary) in May of 2017. After months of crippling back pain which was blamed on pregnancy I lost movement in my right arm. I was being investigated for that as they thought it was linked to endometriosis which I had been living with since the age of 19. Breast cancer was not even a thought, let alone secondary breast cancer which I hadn’t even heard of!
During some tests I noticed one of my stretch marks looked a bit strange so off I went back to the GP only to be told ‘It was nothing to worry about’ and ‘probably hormonal’. I had to push to be referred to the breast clinic and finally a ‘non urgent referral’ was put in. Off we went on our annual family trip to Center Parcs (love it!) and all thoughts of the referral were forgotten.
A week later at the end of my appointment at the breast clinic, following goodness knows how many biopsies, mammograms and ultrasounds, my life changed forever as I was told I had breast cancer. Fast forward 48 hours and suddenly it was not only primary breast cancer – it had also made its way to every bone in my skeleton including my skull. Life became a rollercoaster which I can’t get off.
At the time of diagnosis, the cancer had eaten through my vertebrae at C6 (neck) and T12 (spine) causing spinal cord compression. A month in hospital began as they tried to stabilise me, not only to save me from paralysis but to ensure I was strong enough for chemotherapy to start and start it did. I went through an initial 15 rounds of Paclitaxol (IV chemo) alongside Herceptin and Perjeta (HP sauce!), denosumab for the old bones and zoladex (to shut down the powerhouse that was my ovaries). In February of 2018 we were thrown another curve ball when it spread to my brain. I still struggle to find the words to explain how that felt. Brain surgery and radiation (cyberknife) took place and I moved onto Capecitabine (an oral chemotherapy drug) which I am still on (touch wood!). Since diagnosis I have undergone 13 surgeries ranging from brain, to spine and breast.
I thank my lucky stars every day for my medical team who work so hard to keep me going! Living with stage 4 is tough regardless of what pictures we post of ourselves looking funky at chemo or leading a relatively ‘normal’ life between treatment. It truly does change your life in a way that you can’t explain. Learning to live with your ‘new normal’ is something that slowly you do learn to do.
It can be totally overwhelming when you are diagnosed and hard to even imagine how you are going to get through the day, let alone life, with secondary breast cancer. Everyone’s journey is unique and there is no right or wrong. Perhaps you want to keep your diagnosis amongst friends and family? Perhaps you want to join every support group you can find? Perhaps you want to start a blog? Whatever you want to do, it’s ok! Surround yourself with people and things that make you happy and take time to process life. Some days you won’t be able to get out of bed but there will be others that you can take on the world. Taking time for yourself is crucial. Whether it is having your nails done, going for a walk or even treating yourself to some new lingerie to make you feel more confident!
As a result of my diagnosis, like Caroline, I decided that I wanted to use my diagnosis to something to help others. I founded Make 2nds Count to give hope to those living with secondary breast cancer. Through the charity we fund research projects as well as provide support and education for those living with or affected by the disease.
I’m Susan and I was diagnosed with the mutated BRCA2 gene aged 35. I had a prophylactic double mastectomy with direct to implant reconstruction aged 39 in December 2017 which makes me a proud breast cancer previvor. I’m a northern lass who flew south for the winter and I have been living in London for over fifteen years (yikes – where did the time go??).
It’s now over eighteen months since my mastectomy reconstruction and I have no regrets. I love my noobs (new boobs) and I’m proud of the proactive choices I’ve made for myself.
I believe that mental health is equally important as physical health and just because I lost my breast tissue it doesn’t mean I’ve lost my sense of humour.
BRCA and me
In October 2013 I discovered I had the mutated BRCA2 gene which I inherited from my dad. His mum and aunty had both died from breast cancer and his sister (my still surviving aunty) has had it three times. It was this family history which compelled me to ask for genetic testing at my next pill check-ups two years earlier. I kept being told from practice nurses that “it doesn’t come down the paternal side” but I persisted until I finally got a referral to my local genetics department.
Keeping it in the family
The geneticist took my family cancer history (both mum and dad sides) including the type of cancer (lung, breast etc.), how many times they had it and at what age. They confirmed that it was highly likely there was familial breast cancer in my family and they would pursue further investigations through blood tests. As a breast cancer survivor my aunty had the blood first to determine whether she had a faulty gene.
When she got a positive result for BRCA2 mutation, it was my dad’s turn to see if carried the same gene. I remember the moment when he called me to tell me he too was a carrier. He kept apologising over and over. And I reassured him that I was fine, that he wasn’t to know and I didn’t blame him, it simply wasn’t his fault. Even though I was months away from receiving my results, I think, even then, I knew deep down that I had the mutation. So when my geneticist gave me my results I managed to keep it together and ask, “OK, what are my options?”
What are BRCA genes and what does it mean to have a mutation?
Everyone has BRCA1 and BRCA2 genes. They work as cancer inhibitors, preventing cancer from developing in your body. When mutated (like mine) they are faulty and don’t do their job properly.
The major risk for BRCA1 and BRCA2 mutation carriers is breast cancer. My geneticist estimated my risk to be 70-80% so I was immediately put under monitoring through yearly MRIs on my breasts.
Monitoring or surgery?
Many women opt for close monitoring although others choose to undergo surgery to have a preventative bi-lateral double mastectomy. Having this surgery usually leaves you of a risk of 5% or less. Most choose reconstruction however, some choose to remain flat chested.
At first I was content with MRI monitoring. I wasn’t ready to contemplate such life changing, complex surgery plus it was so difficult to research and find photos of mastectomy reconstructions online. However, In 2015, shortly after my second MRI, I thought ‘Sod this, I feel like I’m just waiting for breast cancer to happen to me.’ so I rang my geneticist and told him I wanted to go ahead with a preventative double mastectomy. I was ready to begin the very long process which can take up to two years to complete on the NHS.
Fail to prepare, prepare to fail
I did A LOT of research in the years before my surgery. I read ALL the blogs and watched ALL the vlogs. Whatever information I could find I absorbed and made notes. This was my way of coping and feeling in control of the situation and my future. I needed to know exactly how my reconstruction would feel like (even down to the lack of sensation) and how my physical recovery could expect to go.
Girls on film
I wanted to capture my old boobs in their original glory before I had my mastectomy so I commissioned a photographer to take boudoir style photos of myself for posterity. I’m so glad I did this. I felt much more prepared for the surgery after the shoot as I had something to remember the “girls” by. It also prevented me from looking back on my old boobs with rose-tinted glasses. Looking at before and after photos, I really think mine look better post surgery.
Ta-ta to the ta ta’s
I read somewhere that the reason why people hold ceremonies like birthdays, weddings and funerals is to help us deal with and process major life transitions. With this is mind I held a Ta-Ta to the Ta Ta’s Tea Party a couple of weeks before my surgery was due and invited all my friends who had supported me on my journey on making this decision. There were no tears, just drinks, cake and karaoke. I had friends travel hundreds of miles to be there and I remember thinking how lucky I was to have such a supportive group of people by my side. I really believe that if you have the right support in life you can get through pretty much anything.
In the UK you have to see a psychologist to be formally assessed before you have a preventative mastectomy. This is to ensure that you understand the risks and the repercussions of this complex surgery. I had to complete a multiple choice questionnaire on my mood and answer questions in a one-on-one setting. In addition to this I saw (and still see) a counsellor/therapist privately which has helped me enormously, particularly in identifying and processing feelings of grief.
The surgery (AKA Double D-Day)
So, after all my preparations and many consultations with my incredible onoplastic surgeons, I finally was emotionally, mentally and physically ready to have my risk reducing breast surgery in December 2017. I’m proud to say that I woke that morning of the surgery SO ready for it. They marked me up where my incisions would be, I took my final photo and I said “OK, lets do this”.
I had nipple sparing, direct to implant, immediate reconstruction surgery which was under the muscle with stattice. Stattice is made from pig dermis and is also known as acellular dermal matrix or ADM for short. This acts as a sort of hammock for the implant to give more support. They also gave me a lift during the same surgery to help preserve the nipples (it worked) and to give a better aesthetic result (that worked too!). I was in the operating theatre just under five hours and I had no complications.
I don’t want to dwell on the recovery other than I really underestimated the pain. As I had already experienced four knee dislocations and two knee surgeries, I was no stranger to pain and thought to myself, “How bad could it be?”. I was mistaken. When I came around from the general anaesthetic, I felt utterly brutalised. I was on codeine, ibuprofen and paracetamol around the clock for nearly four weeks. I remember waking at 5am in pain, taking more painkillers and going back to sleep for another five hours. It was hard getting comfortable at first but it was definitely manageable once I got the hang of scheduling my painkillers – binge watching Grey’s Anatomy from the beginning helped too.
Going shopping for my first ‘normal’ bra with my new implants was a Big Deal. My medical, purely functional post surgery bras, which I had worn day and night for six weeks, had served their purpose and I was ready to buy some bras which were more ‘me’. I no longer was content to be a patient and I was excited to begin living my new normal and going shopping for lovely new bras was something I had been looking forward to.
With the initial swelling now subsided, it was hard to gauge what my new size was and I wasn’t sure how to begin to explain my ignorance of my bra size to the sales assistant who had just approached me. As luck would have it that sales assistant had had breast surgery herself. I can’t tell you the feelings I had when she told me . Relief was one. A feeling of being understood was another. I admit to welling up – having cancer or being BRCA positive is like being part of a club and it was amazing to talk to someone who was in that club and just ‘got it’. I realised then how isolated I had felt since I had gotten my BRCA diagnoses.
I think what what Caroline is doing is fantastic. She’s been there, done that, bought the t-shirt and is now designing bra’s for those who have been through the same. I want to give back to this supportive community, and support people like Caroline who’s aim is to help ladies who have had breast surgery. I want these ladies to have the same experience I did, to buy a bra from someone who just ‘gets it’.
Four years ago I had my preventative double mastectomy with tissue expander reconstruction. You might thing prevention? Brca 1 or 2 carrier? No, this is where it becomes difficult.
11 years ago my mother was the 4th of 5 women, all sisters, to be diagnosed with breast cancer. They had caught it quickly due to her screening – mammograms and physical examinations due to her sisters having fought cancer. Up until this point two of her sisters (my aunts) were screened for the Brca mutations and tested negative. Therefore in the words of her surgeon at the time, it was merely ‘bad luck’. This remained the case until a new surgeon took over the clinic and sent the family for genetic background checks. They could only trace back as far as my great grandfather as he came to the UK from Lithuania and there are limited records. There it was found that not only had the 4 sisters been through cancer, they were joined by an uncle, aunts and cousins all on their fathers side of their family tree.
So there lies my dilemma. The surgeon concluded that due to the recurrence of cancer in our family ours was one of the worst cases they’d seen without a Brca mutation being present and something had to be done. One consultant tried to put a percentage on my risk at around 97%.
97%? Surely it’s a no brainer right??
In 2013 I was at the breast clinic for my routine breast check up and mammogram. As I sat in the waiting room in my gown the usual thoughts swam through my mind.
How many women had sat in that same spot, looking at the same leaflets and posters around them moments before going into the room to be told they’d found ‘something’ on their x-ray?
As I stood there manipulating my body into the clamps of the mammogram machine (which isn’t as bad as it sounds, I’m not a piece of wood manhandled by a joiner, the nurse was quite gentle and we managed with minor discomfort) I thought at the mere age of 31 how many more of these would I attend before they said those words to me? How would I cope?
then as the clamps released and I was able to go about my business as normal the thoughts dissipated for another year, or so I thought.
four to six weeks later the mail arrived with the familiar blue faded stamp on the front. My letter to say all is well for another year I presumed, not so!
Dear Mrs Stewart………
blah blah blah
we have found a shadow on your right breast and would therefore like to conduct a further investigation…..another mammogram…………please report to x-ray on……..
They’d found something, what? my baby girl was only just turned 2, my boy was starting school…….
I knew age wasn’t a factor, my aunt was 32 when she was diagnosed, cancer didn’t care for circumstances or loved ones.
I went along to the mammogram and as I left I was told to wait for the radiographer analyzing the x-ray, as they came out and told me that all was well and that they couldn’t see what they’d found on the last one, I felt a huge wave of relief glide over me, but knew it wasn’t the end.
Could I go through that again? Could I endure the waiting,the diagnosis? The treatment?
I had made my mind up and with that experience tucked in the box in my mind where I’d use it later for strength I approached the consultant to request preventative action.
In 2015 I underwent the most life changing event of my life and removed two healthy breasts without fully knowing if I was definitely a carrier of whatever gene is present in my family.
Two weeks after the elation of being ‘free’ I was hit with the blow that the pocket housing my left tissue expander was infected and it must be removed and left to heal for three months. The decision was made to remove it on the 27th august – my daughters 4th birthday. The amount of sadness I felt was immeasurable, but I found the strength that I was not a cancer patient and I would get through this.
Four years down the line and true to form I am at the other side, there was light at the end of the tunnel and I found peace in the knowledge that my risk has been cut to 5%.
Over the past four years I have documented my journey on my own social media through the hashtag #mastectomymyway
I had a bye bye boobies celebration night out with friends, before and after photoshoots and documented my expander reconstruction in photographs. Having tried reached out to support groups who help Brca carriers, being rejected and feeling I didn’t fit in due to not being a carrier and even been called a fraud for using the hashtag previvor I knew opinion had to change. There are many women out there who are like me too, who feel alone at the worst time so I wanted to be there for them. I have friends from all over the world who have seen my story and look for advice or just someone to chat to. I have loved sharing my experience, tips and photots showing strength, vulnerability and scars because that’s who I am and that’s the real rawness people need to see to relate and that’s what I found in LoveRose.
During those four years I have featured in magazines, radio, T.V. including This Morning and most of the feedback has been positive and I’ve built up a wee community of breast cancer survivors and previvors and try to bring them the best support and knowledge.
Recently I came across Carolines interview on STV and knew instantly I wanted to share her story with my friends.
Caroline is a pioneer in post surgery lingerie, she has been to war on the front line with us all and knows exactly what surgery involves and the feelings attached.
I am privileged to be part of the LoveRose community and excited for what the future holds for LoveRose I hope you will be too.
Please join us and support the future of confident survivors, previvors or foobfriends, be whatever we want to be!
My name is Amanda and I was diagnosed with stage 3 grade 3 Triple Negative Breast Cancer on the 26th September 2018…which was also my 44th birthday!
I’d badly broken my leg 5 months previously and was seeing my GP about a return to my job as a high school Librarian. As I was about to leave I casually asked if she could have a quick look at my left breast, as it seemed to have flattened somewhat in shape. She examined me, said that she thought she could feel a lump within the breast and referred me immediately to our local Breast Cancer Unit.
Fast forward two weeks and I was diagnosed with a 7cm tumour in my left breast and a 3cm tumour in my lymph node area also. Biopsies confirmed that these tumours were in the 10-15% classed as ‘Triple Negative’. This means the growth of the cancer is not fuelled by the hormones oestrogen and progesterone, or by the HER2 protein. Consequently, long term targeted hormone therapies like Tamoxifen are not effective treatments.
I started treatment within a couple of weeks with a FEC-T chemotherapy regime. My family and I found this tough. I had several hospitalisations and my body and soul took a huge battering!
I’m a mum to two wonderful children. 12 year old Ruby and Daniel who will soon be 7. Daniel was only 5 at the time of my diagnosis and took on board as much as he needed to. At that age, I found as long as he still had all his needs met and lots of cuddles/mummy time, he generally coped quite well.
Ruby initially struggled with my hair loss. For as long as I can remember I had always had ‘big’ hair, long and brunette with lots of curls, so seeing me lose this was a massive shock for her. I had amazing support from my Breast Care Nurse Gemma, in ways to talk with Ruby about my breast cancer as well as age-appropriate resources we could read through together.
I found honesty and openness to be the best policy (as is always the case!) and Ruby showed the most amazing resilience. She encouraged me to be proud of how I looked, to not wear wigs etc and just be ‘aux naturale’. She would give me regular reminders that I was beautiful. I’ve always tried to model positively and so her support empowered me to believe that, despite feeling like I’d been stripped of so much, I was still “enough”.
In March this year I had a left side mastectomy and full node clearance, then followed by 3 weeks of breast and neck radiotherapy.
As I tested positive for the faulty BRCA 2 gene, a few days ago I had a risk-reducing right mastectomy and next month will be having a bilateral Salpingo-Oophrectomy to further reduce my risk of ovarian cancer.
I made the decision not to have breast reconstruction surgery and live flat. I’m still in the early stages of accepting my changed body shape. That said, I’m only just 45, have always invested in my underwear and so still want the option to wear beautiful lingerie sets, post surgery.
The Love Rose collection will give me a wonderful alternative to the ‘oh so beige’ post surgery lingerie commonly seen on our high street, and give me confidence in moving forward with this ‘new me’!
This year January I’d just finished my 12 mile run at Stirling Castle, went for the weekend & the following Monday I was going to the breast clinic to get checked out. I found a small lump while showering, so I went to get this checked, but had no aches, no pain, no symptoms.
I went with my mum and had an examination, the GP said it will be a cyst, next I was sent down the hall for a mammogram & ultrasound which I thought- they will give me a good MOT here. Next I’m being told I have suspicious cell that are cancer??? I had to go to another room to get a blood test & a biopsy, I was sitting on the hospital bed just not even sure what was happening??
The tears started to roll down my eyes. Everything was happening so fast. I had to take my bra off, but I could see my mum in the corner of my eye. I felt so vulnerable. I asked for the curtain to be closed, my poor mum was like I’ll turn away- I mean I’m 37 she’s not seem me since I was about 13.
I thought, why is this happening, can I not have a break? In 2017 we sadly lost my dad- I found him at home, he had a pulmonary embolism (blood clot), slumped in the kitchen. He was a picture of health so it came from nowhere. We had the worst 4 months as we were planning my wedding in March 2018. We went through such a hard time, I didn’t have dad to walk me down the aisle. He was the main person I would talk to about everything.
Stage 2 cancer I have & a 9cm lump- very matter of fact, I will need chemotherapy & possibly radiotherapy. It’s treatable & I will lose my hair. I just couldn’t take it all in, I was in shock.
I had a mastectomy & reconstruction surgery in February and spent a week in the hospital. This is what we needed to do first. Having to tell my daughter was so difficult, she is 15 & was doing her prelims at the time but she said all the right things- “it’s just hair it will grow back”.
I have my life so I have to get on with it & take each day as it comes & we did as a family. I had 6 rounds of chemotherapy every 3 weeks & out of all the symptoms I got like 2- I can cope with that. I strangely just took it in. It all could’ve gone in another direction. I’ve got my life & I just have to get by day by day- I have so much to live for.
Yes I felt exhausted, yes my hair started to fall out (my husband shaved it for me) but I continued work just part time & continued to go to the gym when I could. This is gonna be my life just now, so ok, this is the way it’s gonna be!
LoveRose Lingerie will be fantastic, having a range of lingerie and a choice of styles which are pretty and will make me feel feminine again- there’s nothing out there.