I’m not sick; I just have side effects - a young woman’s story
Following our feature article about new BCAC member group, Shocking Pink, a group providing information for young women with breast cancer, BCAC committee member, Gillian Wintrup, shares her story. She was just 35 when diagnosed with breast cancer.
According to the little name tag barcode thing the hospital puts on you, I was 35 and 2 months at the time of my breast cancer diagnosis. The cancer was hormone and Her2 positive; I had a full mastectomy and reconstruction at the same time, followed by chemotherapy, radiotherapy and Herceptin and I am now on Tamoxifen for five years. I am now 38 and 8 months and this is an insight on how I have got to here. A lot of people talk of their breast cancer journey; I call it my enforced trek!
When asked to write this for the BCAC website, I struggled with what I should write and how much detail to go into. I don’t want to frighten newly diagnosed women; let’s face it the doctors have probably already done that, not to mention your own imaginations. However, I will not sugar coat my trek; I am the first to admit it has not been easy. There have been some incredibly steep mountains to climb and on the way back down the track has been slippery at times.
The old quote “what doesn’t kill you makes you stronger” became my favoured mantra. However, I have not lost my sense of humour (it did slip on occasion) and I have met some fantastic people and made lasting friendships through being diagnosed with cancer.
When I was newly diagnosed and had finally got through the denial, devastation, anger and hurt I went looking for information. I read everything my BC nurse specialist gave me; I looked up websites mentioned in the literature and found in New Zealand there wasn’t much available for young women. My search led me to a number of American sites; Young Survival Coalition being the main one (http://www.youngsurvival.org). A word of caution for you newbies, information is powerful and it can also scare the living daylights out of you. Please take care when searching websites and only read what pertains to you, don’t go reading all the other stuff unless you have to.
After biopsies, MRI scans and mammograms it was decided that the best surgical route for me would be a mastectomy. I had read that under the New Zealand health system I was entitled to have a reconstruction either at the time of the mastectomy or at a time afterward. My initial consult with a surgeon didn’t go well, as he was all set to book me in for a straight mastectomy. I am a large busted woman; at the time I was a DD or E cup so the idea of only having one breast freaked me out beyond belief.
With my family backing me up I asked about reconstruction at the same time. I can’t emphasise this enough; you or your support person need to question what the doctors are saying to you, in order to get the best outcome for you. A new surgeon came to talk to me about the different types and timings. I decided that I couldn’t wake up with only one breast; I needed for my own sanity to look sort of normal. This decision was made over a couple of weeks and various consultations with the doctors; I wasn’t rushed into it, and I stand by it. A new map had to be drawn up and I was off to talk to the medical oncologist.
The medical oncologist is the person responsible for the chemical onslaught they put your body through. In a word - chemotherapy. Boy that word is scary; it conjures up all those movies where you see frail people in headscarves looking sick, or being sick, not to mention all the horror stories your best friend’s aunty’s cousin told you about that lady down the road.
There are horror stories, however these are becoming less the norm for chemotherapy. Your doctors and nurses will work closely with you to ensure your side effects are limited. Among other things this is done by using anti-nausea medication, steroids and exercise. There are also a number of complementary therapies (for example, massage or naturopathy) that can be incorporated into your regime. You need to talk with your doctor about these to make sure they will not interfere with the chemotherapy drugs.
As a young woman, chemotherapy can play havoc with your fertility but there are procedures available to help protect it including harvesting eggs, putting the ovaries into a stasis or harvesting ovarian tissue. However, these do depend on many factors. I couldn’t go through with harvesting as the type of cancer I had was positive for estrogen which meant pumping me full of estrogen (which is part of the harvesting procedure) was not an option. This was another of those devastating moments where I had to choose my life or my future ability to have children. Sounds dramatic, but I don’t have kids - never been the right time or partner - and I always thought I had time and a choice. Well it sucks having your choices taken away from you, but I still remember the conversation with my folks and the oncologist where I said I would take my chances regarding fertility and would prefer to get rid of the cancer.
Following my consult with the oncologist a nurse took me to the chemo unit to show me where to go and what to expect. I looked around the room; I was the youngest person there (apart from the nurses). As my Mum and Dad drove me home I cried. My first chemo appointment came all too fast and I felt sick with dread and the reality of my situation hit me. I really had cancer, it wasn’t a dream and in three weeks I would lose my hair. As they were throughout, Mum and Dad were with me on my first day; I sat in a lazy boy chair; I didn’t want to lie on a bed as that would have felt like I was sick. Heart hammering, trying to be brave and as the nurse came up with all the bits and pieces I just lost it, I cried. A lovely woman with a headscarf came up to me, gave me a hug and said everything was going to be fine; she remembered her first time and it was her last session.
Things to have in your survival backpack for this part of the trek; cold water and lots of it, ginger beer, ginger tea, an ipod with an audio book on it or music to distract you, magazine, novel, suduko etc - oh, and your lunch if you don’t like hospital food. I preferred to listen to music or a book to drown out the other patients; I didn’t want to hear what they had or what they were going through. As I became a veteran of chemo, this changed and I would talk to people or the nurses. Whatever is going to help you get through it with the least amount of fuss, do it.
Another tip I have is portacaths; I thought only really sick people got a portacath and I had to put up with the needles. My veins protested after a number of rounds of chemo and after several failed attempts a nurse said go and see your oncologist and ask for a portacath. I was hesitant mainly because I would end up with a scar on my chest where people could see it. Yep that’s right worried about my appearance! However I got one and it changed my chemo experience.
I had decided to have a tram flap reconstruction, where your six pack muscle is split and moved up to the breast and the skin from your stomach is taken to form your new breast. Sounds horrendous doesn’t it? Well the good news is you are asleep when this is happening; the bad news is you wake up feeling like you have been hit by a bus! Reasons for choosing the tram flap over the latissimus dorsi were a previous shoulder injury, the tram flap would produce a larger breast and I liked the idea of a flat tummy. Yes again with the appearance thing, I know!
Recovery from surgery was long and hard. More chemotherapy ensued and then onto radiotherapy. By this stage I had been undergoing treatment for a year and I had had enough. I had a long conversation with my radiation oncologist and was seriously considering not having the treatment. It was going to be five weeks off work and I just didn’t want to do it anymore (even though my Dad’s advice of taking all the treatment offered was good advice). It was the first time I asked about the statistics of survival if I didn’t take the treatment. My doctor said I had a 50-60% chance of the cancer reoccurring without the radiation treatment. With radiation I had 0-10% chance of reoccurrence. You can guess what I decided.
Yep, onwards and upwards on the trek to mount radio. I was terrified on my first day of treatment but the technicians were lovely, explaining the procedure and trying to put me at ease. Well it felt weird having one breast exposed to the world, my arm above my head and my knees bent as I still couldn’t lie flat. And you know what? It was the biggest anti-climax of all treatments! I really don’t know what I was expecting, but it didn’t hurt and it was over within minutes. It took longer to assume the position than be zapped.
I had the equivalent of 50,000 chest x-rays in that five week period. I had a distinct suntan line from the radiation beam and it was a tiring experience. I didn’t feel sick, just blaah!
One important point I haven’t mentioned until now is my treatment with Herceptin which began following my chemotherapy. I make special note of my year of Herceptin, given once every three weeks, as thanks to the heroic efforts of members of the BCAC committee and a change of government in 2008 I did not have to pay for it. My breast surgeon said to me at a follow up appointment that I had the best possible treatment available for me and the year’s worth of Herceptin was probably the most important part of that treatment.
So I have climbed a few mountains and am on the other side heading down that slippery track. I have encountered a few giant boulders that have taken some time to get round, but the important thing is I am still trekking on and the path is getting easier.
The BCAC website aims to provide information for those diagnosed with breast cancer and their friends and family. I hope that by sharing my story here I can help other young women in New Zealand with their breast cancer “trek” – if nothing else just by letting them know they are not alone. For more information visit BCAC’s page on breast cancer and young women in NZ http://www.breastcancer.org.nz/Support/Young-Women and check out Shocking Pink’s new website www.shockingpink.org.nz.