Tammi's Story

I was a happy go lucky person. My life revolved around work basically, anything from 48-60 hours a week. I played the occasional hockey game and loved the thrill of riding my motorbikes. Then all a sudden, my life changed. I had a lump in between my shoulder blades; it had been there several years. I saw a doctor several times and a nurse about my concerns for it, and they all told me it was a harmless cyst. So I took their word, after all they are the health professionals. Three years later I decided to go back, as the lump was affecting my self-confidence; I felt it was disgusting. So I booked a doctor's appointment and the doctor said we should take a biopsy.

The biopsy came back clear. Then I had a letter come through, it was a call back to have a second biopsy and removal of the so called "cyst" in November 2011. So I had some local anaesthetic and had the lump removed. Within two days, I had a letter come through and a phone call from a specialist in dermatology. Dr. P.N. Woo was her name, lovely lady. She told me to come down ASAP to have a chat. I felt a bit strange, as it seemed rather important. I went down to the local hospital to see her. Her exact words were, ''Sorry to having to tell you this Tammi, but the biopsy has come back as dermatofibrosarcoma protuberans. It's known as DFSP. It's a form of a really rare cancer.''

My first words were, ''Are you sure this is right. What do I do?! Why?! What is this?!'' She told me, ''Only 1 in 10 million people get this. She then brought up a page on her computer and said, "Here is some information; it's only a page long. I can't tell you much more than this. I have referred you to a specialist in Nottingham."

Finding out that I had something so rare seemed so unreal. I went to the car park, sat on my motorbike trying to brace myself for the journey home. I simply couldn't, it was impossible knowing I had just been told I had the BIG C (CANCER), the word that's crushed my family in the past and families around the world. I rang my sister; she was at work. I said "Please can you get 5 minutes?" She insisted I tell her over the phone, and I burst out in tears. Heart broken. I went straight up to her place of work. I cried all the way, even though I was driving. It felt as if it was raining, and I was in my own world. I got there, spoke through a metal gate, and I was hurt and angry. My sister was in pure shock. We just didn't know what to do. The only thing we could do was wait to see the specialist. I was heartbroken. What hurt even more was that I told my so called "best friend" at the time, and I wanted it to be kept quiet. I told her no one was to know, but I felt I could talk to her. Within a few days everyone knew. People were saying stuff, and I was heartbroken. Trying to deal with something so dramatic and people at the same time was impossible. I soon found out who my real friends and family were.

Treatment

So I went to see this amazing specialist 78 mile away from home. I felt relief talking to someone who knew about this instead of researching on the internet. He told me, "It's a very rare tumour. It's like an octopus, has legs and they try to make their way into everything. We have to operate ASAP!"

The surgeon assured me that my main treatment would get clear margins, get rid of these tumours. It was MOHs surgery, also known as chemosurgery. This surgery is to keep it from attaching to my bones and lungs. I took the surgery, and I was in surgery awake, laying on my front for six long hours. It felt like so much longer. After six hours, I was taken into a recovery room, where they made me eat horrible jelly; it wasn't rowntrees jelly ha-ha! I fell asleep, and then a nurse woke me up because more surgery was needed.

The main tumour was 12cm by 12cm by 10cm. It was very big, considering it looked like a little lump on my back. So I went back into surgery. More local was applied, and one surgeon was talking to me all the way through, talking about hockey mainly, and music. He got an iPod dock and put music on. He told me not to look, which i did. Was so much flesh on the surgery trolley? I felt physically sick. The surgeons managed to get clear margins, and I received and hour of reconstruction.

Recovery

It has taken three months to recover from both surgeries, which caused me to suffer with nerve damage, bad pains and weird sensations. I am still not able to stretch and do some things like pick heavy stuff up. I was told on the August 10, 2012, that I am in a year remission. It's very likely it will keep coming back, as my genes are strange, but we will keep fighting it. I currently am still on the sick, due to complications of nerve damage and stomach issues, and I am waiting for results and more scans.

Life Now

Having cancer has made me discover there is more to life than work. I have enrolled again in higher education doing photography, which is a huge passion of mine. I have ticked New York City off my bucket list as well. I am now going to treat life as a gift. Do everything possible, live it with some freedom, "Live each day as it is, it will never come round again."

My life now is remarkable. I have people who have stuck by me, people I could only dream of in my life. I have the most amazing fiancé, may I add. And my partner's family are incredible and have supported us through this experience. I'm not going to say horrible experience, as to be honest, I needed this experience. It's opened my eyes; I'm not so naive. And I cherish my amazing friends and family. My identity is still the same...well my name is, but I feel different. I'm thankful for all the support. I just hope one day someone will raise more awareness about the rare types of cancer, not just the common ones, as all cancer is horrible to go through.

Thoughts and Hints for New Patients

I wish that we had never read on the Internet about dermatofibrosarcoma protuberans. What my friend Fiona and I found scared us to death, before it even sank in. Just because you've been told you have cancer doesn't mean that everything is over. It's just the beginining! Keep fighting.

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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.