My journey - Sarah Hill

Sarah shares her personal breast cancer journey and some of the things that journey has taught her. Read her story below.

I first noticed a lump in my breast whilst my husband and I were on our honeymoon in Fiji in March 2011. I say first noticed, but I had actually noticed it towards the end of 2010, however it was much smaller and more like a mass than a lump, so I dismissed it as nothing serious. I had recently finished breast feeding and I put it down to the changing make-up of my breast tissue. I still wasn’t particularly concerned, but realised it had grown and so decided I would get it checked out when I got back to NZ.

I went to see my GP in mid-March. She checked the lump but reassured me that it probably wasn’t anything to be concerned about as I was young (32) and had no family history of breast cancer. She referred me to the health service for an ultrasound but did warn me that due to my age and family history, my referral would probably go to the bottom of the pile, and it could be a three-month wait. I left the doctors surgery feeling pretty positive that my lump was nothing and prepared to wait until my appointment came through.

In late April 2011, I heard an ad on the radio advertising free breast checks at a local private clinic. As I hadn’t heard anything from the public health service about an ultrasound appointment, I decided to give this clinic a call to get another opinion on my lump. At the appointment the doctor examined me but said the only way to tell if this lump was of any significance was to give me an ultrasound, which I had to pay for. I went ahead and she showed me the images on the screen of the lump. She said it didn’t look cancerous and based on my age and family history she was 99% certain it was nothing. She did say she would like to do a biopsy (which she could have done then and there) to be 100% sure and this would be another $500. I explained that I was waiting for a referral on the public system and told her that as she was 99% certain it was okay, I would wait for the public appointment to come through as I didn’t really have a spare $500. She agreed that this was the right course of action.

I finally received my appointment letter inviting me for an ultrasound at the local hospital on 31st May 2011.  As I was pretty confident based on my previous examination the lump was nothing, I went along to the appointment alone!

While waiting in the waiting room of the Radiology department, I picked up an issue of Pink, the breast cancer magazine. There was an article about a 26-year old woman who was battling breast cancer. Reading this article was the first time I actually thought, this lump could be serious, breast cancer can occur in young women.

I was taken into the ultrasound room by a nice nurse who made sure I was comfortable, before bringing in the doctor who would be performing the ultrasound. The doctor initially couldn’t find anything; the report read “Ultrasound was performed initially, and shows a 3cm rounded hypo-echoic area showing some increased vascularity.” This was not thought to be suspicious initially....  The doctor suggested I go through to the other room to have a mammogram. I had an initial mammogram done, then once the doctor was shown the films I had to have another view done. The nurse then pointed out a couple of suspicious areas and said they would do a magnified view as well. This was not a particularly comfortable process - it reminded me of a being in a toasted sandwich machine! I got a little more concerned every time they wanted to do another view, but the nurse reassured me saying these were just to get a base point from which future mammograms can be compared to. The report from this mammogram read, “Single MLO views were performed then a further full mammogram and these show a large area of suspicious micro-calcifications.”

I went back to the original ultrasound room, and the doctor who had performed the ultrasound reappeared. I was shocked when he said are you alright to talk and then went on to explain how they had observed areas of micro-calcifications in my breast which indicated there was cell activity. Then he said the words I will never forget:  “There’s a medium to high chance that this is cancer; I’m sorry.” I felt like I was dreaming.

Although the thought that perhaps this lump was cancerous had crossed my mind before, I never really ever believed that I would get cancer, not at my age. I am reasonably fit and healthy, why would this happen to me?? I asked him if there is still a chance the lump could be benign and he said yes there was, but I needed a core biopsy to confirm one way or the other. I was booked in for this biopsy two weeks later. I called my husband to tell him what had just been said to me on my way out of the hospital and also asked him to call my son’s day care as I would be late because my appointment had gone on so long. My husband sounded concerned and I was fairly upset; I had this horrible feeling deep down that perhaps everything was not okay, but I wanted to believe that it was so that’s what I did.

The next two-week wait was unbearable. Here I was being told I had a high chance of having cancer, yet I had to wait two weeks before there was any more progress. I didn’t sleep much during that time. I confided in a couple of friends but I couldn’t bring myself to tell my mum or any other family members as I didn’t want to worry them, and was praying so hard that everything would be okay.

14th June 2011
I was so nervous the morning of my biopsy. We were both expecting to get some explanation from this appointment either the same day or within a couple of days, so when the surgeon said it would be between two to three weeks and then I would get an appointment to come back to the breast clinic and hear my results, we couldn’t believe it.

The biopsy procedure was reasonably painless. I had five samples of tissue taken from the lump and the surgeon used ultrasound to guide him to the areas where the micro-calcifications were. The samples seemed to get more and more painful each time he took one. After the fourth sample, I asked if I could have more local anaesthetic, but he told me there was only one more to go. And that was that; the samples were to be sent off to the pathologists for testing and I just had to wait patiently for the results. We did have a brief discussion with the nurse asking if we would get any results back quicker if we transferred to private, but it seemed as though it would take just as long. So all we could do was wait.

Two-week wait #2 - waiting for biopsy results
For some reason this two-week wait period didn’t seem as bad as when I was waiting for the biopsy. I did a bit of Googling on the internet (I know self-diagnosis is not good!). Some put my mind at rest a bit. From others I learned that a breast lump that is taller rather than thinner is good evidence of breast cancer and a hard, non-movable lump is also suspicious. This is exactly what my lump was - hard, non-movable and taller rather than thinner so then I was scared!

I finally got a phone call a week and a half after the biopsy, inviting me to the breast clinic for the results.

The news - Wednesday 29th June 2011
My husband took the day off work and we booked my son into an additional day of day care all day, just in case it was bad news and we needed some time to ourselves. When we arrived at the breast clinic, nothing helped to reassure me that things would be okay. I sat in the waiting room and looked around; as usual there were a handful of older women, no-one anywhere close to my age. I was then asked to fill out a questionnaire. This made me worried again. It had loads of questions about age, family history of cancer, age I had my first child, whether I breastfed, all the stats that are collected about people with breast cancer. A little voice in my head said maybe these are given to everyone but I noticed that they weren’t.

Ten minutes later we were taken by a nurse to a room and I was asked to undress. I was so nervous now, and I think my husband was too, but he hid it well. Finally a lady arrived, who was introduced as the breast surgeon and she was accompanied by a nurse. They both examined my lump and said we would talk afterwards. Once I was dressed, we sat opposite the surgeon and the nurse and were told, “We have a problem!” She went on to explain that my lump contained DCIS (Ductal Carcinoma In Situ), which is described as pre-cancer. I had read a bit about DCIS and remembered reading that this is the type of cancer you would like to have. So as the surgeon went onto explain that DCIS is not invasive and that from the ultrasound it didn’t appear to have reached my lymph nodes, I actually felt relieved. My husband on the other hand looked shocked and I think this was because he had really been trying to stay positive beforehand.

We had a good chat about my options. I needed to have a mastectomy, but the choices were whether to have any re-construction and if so whether to have immediate or delayed reconstruction. I also asked the question as to whether I could have both breasts removed, as to me they had suddenly become the enemy and I didn’t want to have the worry of having breast cancer on the other side. I was offered surgery on the public system a week later for a single (or bilateral if that’s what I really wanted) mastectomy without reconstruction. I could then wait one to two years for reconstruction, however the initial operation they would do would be different to the skin sparing mastectomy that is performed for immediate reconstruction, and it would result in a total of three operations. The operation it sounded like I needed was a skin-sparing mastectomy with immediate reconstruction (two operations), however through the public system I would have had to wait 10 to 12 weeks for a plastic surgeon to become available.

I thought I could wait another 4 weeks, but 10-12 weeks just seemed like torture, especially as we had already waited so long and I had been feeling the lump growing since I first went to the doctors in March. Before we left I pushed for a MRI scan of my healthy breast as I wanted to check there were no signs of early breast cancer, and this would also help in my decision as to whether to have a single or bi-lateral mastectomy. The team at North Shore hospital were fantastic, running around the building between different departments to ensure I got a MRI appointment for the following week, as they seem to be very hard to come by normally.

We discussed the option of me going for private surgery. We have a trauma policy on our life insurance which meant it might be possible get a lump sum payout that would cover both operations. We decided that if this policy would pay out then we would try to speed things up and go private. We were recommended the Auckland Breast Centre by the breast cancer nurse at the hospital, so we called them from the carpark and were given an appointment to meet with the surgeon that afternoon.

We met with the fabulous surgeon from the Auckland Breast Centre who would be performing my mastectomy. She showed us the film of my mammogram. I was amazed to see how prominent the calcifications were and how they really marked out the area of DCIS. She agreed that the next course of action for me was a mastectomy, but talked me out of having both breasts removed, based on the fact that this cancer is not hereditary and that I only have a slightly higher chance than everyone else of breast cancer coming back in my healthy breast. She booked me in for an op the following week at the Southern Cross hospital in Wairau Park.

I met with the plastic surgeon the following day for an initial consultation and was equally impressed. We were so pleased that we were able to have the insurance trauma policy paid out and that I was able to have this operation privately and so quickly too. I realised a week of waiting was really all I could manage, knowing this cancer inside me was growing by the day.

That evening I called my Mum to break the news to her. Mum was brilliant; shocked, but remained calm and was really supportive. She suggested she came out to NZ whilst I was recovering from the op, especially to help with my little boy. It is times like these when you realise quite how far away from the UK we are being in NZ.

Thursday 7th July 2011 - Mastectomy Day
My mum flew out from England the day before my operation to support us. I had never even been in hospital before (except to give birth), so I was pretty nervous about having my first general anaesthetic. The operation went well. I had a full mastectomy on my right breast and immediate reconstruction. My husband had a call from the anaesthetist during the operation, to be told the great news that the cancer hadn’t spread to my lymph nodes. When I came round, I was also told the great news about my lymph nodes and even though I hadn’t completely come round from the anaesthetic, I felt extremely relieved. I recovered well that afternoon and was in quite a bit of pain, but this was well managed by a morphine pump!!

However later that afternoon I unfortunately had some bleeding internally from my wound, which meant a second operation. Back down to surgery I went for another general anaesthetic and another two-hour op whilst they re-opened the incision and stopped the bleeding. My poor husband was pacing up and down waiting to hear what was going on as Mum was at home looking after our son. My surgeon was great and took the time during the op to go to my room to explain to my husband what was going on and reassure him I was fine. She also mentioned that the size of the lump they took out probably meant I would need chemotherapy once I had recovered from the op, although I didn’t know anything about this conversation until a few weeks later, as they didn’t want me to worry about having chemo while I was recovering.

I recovered well from both the operations and although I couldn’t move my right arm at all when I woke up from the second operation, it didn’t take long for me to get some movement back.

My son came to visit me in hospital the next day and it was so lovely to see his little smiley face. He wanted to get up on the bed and give me a cuddle and made me read him a story! The next day when I had even more strength back we all walked to the other end of the corridor where there was a ramp which became a make-shift ramp for his cars, so we had fun pushing the cars up and down the slope with him. It’s amazing how children bring you back to normality so quickly. I went home from hospital after three days.

A couple of weeks after the mastectomy, my surgeon called me to say they had the results back from the dissection of my tumour and it had areas of multi-focal invasive cancer, which meant there was a possibility it had got into by blood stream so I needed chemotherapy. My cancer was graded as Her2 positive (although it wasn't hormonal receptive), which meant I needed to have Herceptin treatment alongside my chemo. I had the choice of a year or six months of Herceptin and I chose a year, as to me I needed to do everything I could to ensure this nasty cancer never came back. The other decision was whether or not to freeze some embryos prior to starting the chemo as chemo can pretty much destroy a woman's fertility. My husband and I had always wanted a second child so we made the decision to go ahead and undertake IVF treatment in order to be able to freeze some embryos.

Once the IVF was complete, I could start the chemotherapy; six treatments, one every three weeks. I lost my hair exactly 10 days after the first chemo treatment. I asked my husband to shave it before it all disappeared as I was getting fed up of large clumps falling out every time I touched it. To my surprise, having my head shaved didn't bother me as much as I thought it would. Some good friends of mine shaved their heads at the same time and my sister got all my friends to take pictures of themselves wearing a wig or a scarf and she put a little photo book together. Things like this as well as all the amazing friends and family I had around me (and back in the UK) helped me to keep strong.

The six rounds of chemo went fairly well. I was never too nauseous as the drugs to reduce this really seemed to help. I did end up in hospital after my first Herceptin as I caught the flu and as my white blood count had been destroyed by the chemo I was classed as neutropenic and had to be hospitalised! I was only in there overnight though and it was actually a nice rest, as I find it very hard to rest when I'm at home. Then my last chemo session was delayed a week as my white blood cell count hadn't recovered enough from the previous treatment three weeks before (I think it was all the Xmas parties and drinking I was still trying to do!) So I got to enjoy Xmas that year and instead was really tired and feeling rubbish for the New Yyear as my last chemo was on 27th December.

It was such a relief to finish the chemo in January 2012. I still had another nine months of Herceptin treatment to go, but this wasn't nearly as bad; more an inconvenience having to go to the hospital every three weeks and sit there with a needle in my hand for an hour. I stared a new job in April and went in on the first day with my blonde wig on. I think I really shocked everyone when I went in wig-less a couple of months later with very short dark hair!! But it was a lovely feeling not having to wear a hot uncomfortable wig every day.

I then had my breast reconstruction operation in February 2012 which was really successful. The Herceptin treatments went well and life really was almost back to normal. I was slowly getting my strength and fitness back. In August 2012, we had a family holiday to the UK to see family and friends, which included a week in Spain. This was the first time I had seen the majority of people since my diagnosis.

In early November 2011, I ran the Auckland Half marathon and raised money for the Breast Cancer Research Trust. Everyone was amazing, so generous and I raised a total of $4,500, which was absolutely fantastic. My personal goal was to come in under 2 hours, as I hadn't managed to achieve this in the previous two half marathons I had done when I had been healthy. Amazingly I did it. The thought of what I had been through and knowing I had the support of so many people really pushed me to be able to beat my time and I did it in 1 hr 55mins!

I finished my final Herceptin treatment in late November 2012 which was a real moment to celebrate.

Now almost two years since that first diagnosis, I am feeling healthier and fitter than ever. I have a fantastic 4-year old boy who is full of life and energy and keeps me on my toes. I am keeping fit - running, going to the gym, cycling and playing tennis. I try to eat healthier and have incorporated green smoothies and more green veg into my diet.

It is only really now that I feel like I am coming to the end of my breast cancer journey. The nurse at the hospital when I was first diagnosed told me then it would be a long journey and it certainly has been that. But while having breast cancer hasn’t been ideal and is certainly something I could have done without, I really believe I have learnt a lot from it.

- I never knew how strong I was. There’s a saying “You never know how strong you are until being strong is the only choice you have.”  This is so true.
- I have an amazing supportive family, both here in NZ and especially my close family in the UK.
- Who my friends are. I have to say the majority of my friends were amazing. I had heaps of help with my son, friends bringing meals/cakes round, friends calling in or phoning to check if I was okay. Really they went beyond my expectations. However there were people who disappointed me, whether they had trouble dealing with the whole cancer thing, I don t know but yes cancer certainly teaches you who your friends are.
- Life is short - make the most of it and make the most of every day.
- Slow down; take time to enjoy life with friends and family. Work will always be there and money can’t buy happiness.
- Take time for yourself and relax (something I've never been very good at, but I am trying to get better).
- Be positive; when you are faced with a challenge such as cancer being positive is the only way to get through it - it certainly helped me.
- Life is a real gift. Try to always be happy. Be grateful for the lives we have, for our health, our wonderful children and for the love that surrounds us.
- Don t judge a person based on their appearance; for example the woman with the weird really short haircut standing in the queue in front of you may have just fought breast cancer.

Stay strong. Stay positive. Fight breast cancer.