"I'm 90% sure this is breast cancer" were the words I never thought I'd hear! What? Breast Cancer? No, this happens to other people - not me!
So who am I? I'm Michele, I'm 53 and currently undergoing treatment for Breast Cancer.
But let me back up a minute and tell you how I got to hear those words. In the UK, once you reach age 50, you have a routine mammogram every 3 years. About a month before my 50th, I had my first experience and it was clear. No surprise really as I didn't think there was breast cancer in my family. Lots of other cancers but no breast cancer - or so I thought.
At some point I must have filled in a questionnaire because just before my next routine mammogram, I received a letter saying "thank you for completing the questionnaire .... blah blah blah .... your risk of being diagnosed with breast cancer is the same as the national average of 2-5%". Oooooo, that's good news then!
Fast forward to a month before my 53rd birthday and
I'm trotting into the mobile unit to have my second mammogram. I
remember saying to the ladies "see you in 3 years" as I breezed out!
a week later, quite out of the blue, I received a letter with an
appointment to attend a breast care clinic, as my mammogram had shown
something that needed a bit more investigation. The letter went on to
say that over 75% of recalls are nothing to worry about and the wording
was reassuring BUT the funny thing is, I knew there was something
wrong! I had a sixth sense.
Anyway, I was shown through to have a mammogram first and then told I would need an ultrasound (performed by a specialist doctor) afterwards. All routine and all as outlined in the letter I'd received. So at this point there was no indication that anything was wrong but still I had this feeling that I couldn't shake off.
The Doctor performing the Ultrasound explained that the mammogram had shown "something" and that it didn't look sinister but he wanted to have a closer look. That's when things went down hill ........ he started to scan and I just knew something wasn't right. He scanned and scanned and then moved up towards my armpit. Having done a bit of research before my appointment, I knew that there were nodes under the arm and in some breast cancer, it can spread to them. I looked at him and said "you think it's a bit more sinister now don't you?". He stopped scanning, looked at me and said "I'm 90% sure this is breast cancer but I need to take a few biopsies to be sure".
That's when my world fell apart. Even with a sixth sense and thinking something may be wrong (even though no lump could be felt - by me or interestingly by my surgeon afterwards), nothing prepares you for being told you may have cancer. AND, being told there was a 90% chance before any biopsy had been analysed, I knew he was right. Doctors tend to err on the side of caution so to say that, I knew he didn't really have any doubt.
After he had taken the biopsies, he sat me down and said "do you have any questions?". "How long have I got?" was what I asked. He actually smiled and said, "We've caught this early and there's no evidence that it's spread to the nodes under your arm. Breast cancer is treatable". I didn't process that though - I just kept thinking I was going to die and the thought of leaving my 12 year old daughter without a Mother was horrifying. I couldn't stop crying and saying "but I've got a 12 year old daughter". I kept saying that over and over. I felt like I was going to pass out, that nothing was real anymore and how I got to the car and drove home I'll never know. I just remember phoning my husband and saying "I've got cancer". Needless to say, I got home and my husband arrived about 5 minutes later.
From the very first moment of being diagnosed, I knew that I didn't want to hide it. I didn't want to be in the position of my daughter finding out from somebody else. So, my husband and I decided to tell her that night - that was one of the hardest things I've ever had to do. She was at dancing at our local dance school and they were rehearsing for a secret dance for the Principal to honour her brother who had been killed in Ireland whilst serving in the Army. I sat down to watch it and as soon as the music started I knew I was going to start crying and so made my way quickly to the toilets. A lady called Mags who works on reception saw me and asked what was wrong and I just said "I've got breast cancer". Mags scooped me up in the biggest hug I've ever had in my life. She just held me as I cried and cried. I will never forget that hug or her kindness. (Unfortunately or fortunately maybe, my experience prompted Mags to go to her routine mammogram that she'd put off 6 months earlier and she was also diagnosed with breast cancer. Thankfully she escaped chemotherapy and had radiotherapy and I've had the joy of seeing her complete her treatment now and start her life again, cancer free).
That night, we told Katya. I told her the truth but said that I wasn't going down without a fight and that I had LOTS to live for. I told her that it was going to be tough and she'd see me struggle at times but that I wanted her to talk to me if she was worried and we'd get through this together. She's a remarkable kid. She took it all on board and although she was devastated, she just wanted to know everything. I think this is the way our family deals with things - by being practical and needing to know everything. As a precaution though, I told her school who have been very supportive. She was asked to see the school nurse who, according to Katya, "tried to make me cry for an hour" lol! She hasn't seen the nurse since or done any research but we often chat through what I'm going through and apart from acting up a few times, she does seem to be dealing with it. Of course, there's always the worry for any Mum that you don't know exactly how it's affected your child/children - but we can only do what we think is right at the time and hope for the best. Don't get me wrong, there's been lots of tears for us all at times (and there still is). Cancer, when it touches a family, has a way of turning everything upside down, inside out and back again.
Let me zoom forward a bit though. Normally you have to wait about a week or two for the biopsy results to come back and then after that about another two weeks until you see a surgeon. That time is the worst time because you're in a state of limbo. It's horrible because you don't know what's going to happen, your head is all over the place and, if you're anything like me, you'll have scared yourself stupid by reading the internet!!!! I felt like my world had shifted. Everything looked and felt different. I swayed wildly between not believing it and then suddenly being in the depths of despair and planning my funeral.
The day finally arrived for my appointment to get the results of my biopsy. I had done some research and so knew there were several different types of breast cancer (there's more about that in the tab entitled "overview of breast cancer" on this page) but I knew the one I didn't want was "Triple Negative Breast Cancer". I had explained to my husband that with lots of breast cancers, after treatment, you can take tablets or an injection that help protect against recurrence. With Triple Negative there's no such safety net and chemotherapy is (usually) the front line and only treatment.
Of course, you've guessed the rest! The Doctor told me that my cancer was Triple Negative and Grade 3 - the most aggressive. (I've never been told the stage but worked out it's Stage 1). (Information about grades and stages are also in the tab above "Overview of Breast Cancer). I remember looking at my husband and seeing him in utter shock with tears in his eyes. In some ways, that was worse for me - seeing somebody I love feeling so helpless.
Having a diagnosis of Triple Negative (only 15% of breast cancers are triple negative) AND Grade 3 was definitely NOT what I wanted to hear. I knew there were two things I didn't want - chemotherapy and to lose my hair. However, with that diagnosis, I realised that was probably going to be my path. Knowing what I had, sent me into another deep spiral of despair as things just seemed to be getting worse and I was struggling to see any good news - anywhere.
Interestingly, I kept being told "we've found this in its very early stage and there's no evidence it's spread to the nodes" but I didn't hear that. I just heard "triple negative and grade 3". I also knew that even though they couldn't "see" any spread to the nodes, this wouldn't be confirmed until they'd been removed surgically and could be assessed in the lab. THEN I was told that the surgeon I had to see was on holiday so I had to wait 3 weeks. OMG no. No. No. No. I don't know why but I just wanted to get the treatment quickly. To hear that there would be a further delay (even only one week more than normal) sent me into panic stations.
Luckily, I am covered by private medical insurance at work (BUPA) and so decided to ask them if they would fund my treatment and the answer was "yes". In hindsight, this does have some benefits but definitely there are drawbacks to not being in the NHS system. (More on that later). I telephoned the Surgeon's secretary (after doing quite a bit of research, interestingly, the surgeon I would have seen under the NHS was also one that I could see privately and he came highly recommended) and she confirmed that yes he was on holiday - but only on an NHS holiday - and so could see me in 1.5 weeks. Yes yes yes please!
I'd already had hardly any sleep since diagnosis and this continued right up until I met the surgeon. If I managed to get any sleep at all, I went to sleep thinking "I've got cancer" and it was the first thing I thought when I woke up. My sleep was broken, waking up every hour and then struggling to get back to sleep. I woke up crying and full of dread so many times I can't tell you. My world was definitely different and it was scary. I had no symptoms (apart from being more tired - pre diagnosis) and I definitely had no lump I could feel. Nothing. There were no indications that I had cancer - I looked ok. I felt relatively normal (apart from the bags under my eyes through lack of sleep) but I was told I had breast cancer! It all seemed so surreal and like it was happening to somebody else.
The day came to see my surgeon - the wonderful James Harvey. I went into his office with shaky legs, feeling like I was going to pass out and so worried at what he was going to say. I sat down and he looked at me and said "We know from the biopsies that your cancer is triple negative and it's ......" he paused and my head filled in the blank as "terminal" but what he actually said was ".........treatable". I thought I'd misheard! What? So I'm not going to die? Mr Harvey explained that I'd been exceptionally lucky because my cancer had been caught very early. All the tests to this point had shown a lump of 0.9mm and he said that if I'd been scanned 3 months earlier, it may not have shown but 6 months later and due to the grade etc., things may have looked very different. He went on to say that the ultrasound showed no evidence of spread to the nodes which was also encouraging. His manner was so calm, so reassuring and so kind. It rubbed off on me and I just became far calmer. I knew I was in good hands and he was my new hero!
Lucky? Treatable? Potentially no spread? These were words I didn't think I'd ever hear! I burst into tears but this time they were with relief. That night I slept like a baby for the first time in weeks. Interestingly, he told me my prognosis was good and offered to show me the statistics. He asked me on more than one occasion if I wanted to know them - apparently they have a computer model that they put all your details in and out comes a prognosis! I've refused to know because unless mine comes back as 100% then I'll focus on the negative and that's not healthy. So, for now, I've chosen to be in the dark and a happy little mushroom I am!!!!
Mr Harvey then went on to ask if I wanted a lumpectomy (often referred to as a WLE, wide local excision) or mastectomy! Ok, hang on a minute - a mastectomy? Why? Isn't that radical? I mean I've just been told it's 0.9mm, caught early etc. Apparently I was eligible for either but I hadn't even considered this in my research. I had no idea what to choose so I simply said "if I were your wife, what would you do" and he said "lumpectomy". Ok, that'll do for me. Lumpectomy it is. Unfortunately, I knew I'd have to had chemotherapy and radiotherapy afterwards and that really scared me but I'd read about something called Cold Capping that can help to save your hair so I thought that it might be do-able.
Strangely, it felt like something was being done at last and I found I managed to cope a little better.
What I hadn't realised - and I don't think is ever explained - is that you visit a surgeon who does the surgery (either before or after chemo), then you have a separate Oncologist who decides what regime of chemotherapy you're going to have (more about that in the chemotherapy tab) and then you also have a radiologist who determines that side of things! Of course, throughout this you do have a nominated Breast Care Nurse who is your point of contact for any worries, queries etc but it's a big team but they do talk to each other so you're in good hands!
So I had the lumpectomy (more in one of the tabs about that and what to expect) and before surgery I said to Mr Harvey that I wanted him to be radical and take more than he thought he would need to. I'd read that what's taken out is sent to a lab and what you want to get is a result of "clear margins". That means all the cancer has been removed with a portion of healthy tissue around it - ie hopefully they've got it all. When I saw Mr Harvey a week later he said that he'd never been so happy to have listened to a patient before! He said that he'd removed more than he would normally (as I'd asked) but that not only had the tumour been removed (which was now 1.5cm so had doubled in size in two weeks) but there was an area of calcification in a nearby duct - this can be a sign of pre-cancerous cells). Thankfully though, the result was that we had clear margins so even though there was more cancer than first thought - it was all out. Even better news was that Mr Harvey had removed two sentinel nodes from my armpit and both were clear. I'd got it into my head that they wouldn't be clear so hearing that news was like Christmas, Birthday and everything else coming all at once!
So, the next stage was that Mr Harvey handed me over to the Oncologist to start chemotherapy. I'm going to write more about that (in detail) in the chemotherapy tab but at the time of writing, I'm currently just over halfway through.
To keep up with my journey, please keep an eye on my blog where I'll detail the stages that I hope you find informative.
Thank you for reading my story - it's an ongoing one and I do hope it helps to alleviate any fears you may have and answer questions as well!