Teenage Cancer

I have written a book for teenagers and young adults to read - and for their parents and professionals involved in their care to read - but can't get it published as the market is so small and is therefore not profitable for a publisher to take it on. I am looking for funding for this book. If you can help, please let me know!

I have put a great deal of time and effort into writing the book and have contributions from eight different countries from cancer patients, their parents, siblings and friends.
 

About the Book

Young people aged around 12 to 24 years from first diagnosis, face kinds of cancers that are uncommon in adulthood. As well as getting different types of cancers to adults, young people tend to have more aggressive cancers than older people. And, unfortunately, their growth spurts affect their cancer – when they grow fast, so does the cancer. To compound this, the lack of awareness of cancer in this age group means that many young people are misdiagnosed for up to several weeks further affecting their chances of survival.
Cancer in Teenagers and Young Adults is essential reading for any young person diagnosed with cancer and anyone who cares about them. As well as information on cancer and their treatments, medical tests and procedures, it is packed with stories from people whose lives have been touched by cancer.

Introduction

Cancer in Teenagers and Young Adults helps bridge the gap between what you may already know about cancer and what you need to know. You can absorb its contents at your leisure, refresh your memory and understanding after consultations with your oncologist, and identify questions to ask the professionals involved in your care. This book can also let family and friends know what’s in store and how they can best help you through the difficult times ahead, and help professionals understand the personal issues you face.

Adolescent years are often spent fighting for independence and worrying about appearance. When you are diagnosed with cancer, any independence is taken away and you may have genuine concerns about your body image. You may also be told you might never have children and that you might not survive. Even if you are lucky and your treatment is successful - after having waited five years for the word ‘cured’ to be applied to you - you will never again be the person you were the day before you were diagnosed with cancer. Experience of cancer changes you; and it changes those who care about you.

As yet, you don’t know what’s in store for you: your journey has only just begun. But you are not alone. Many young people, and their families, want to share their experiences with you through this book. Let them into your life and take heart: cancer’s not beaten you yet and maybe it never will.

While researching, it became evident that cancer in teenagers and young adults is not much known about, resulting in diagnoses being delayed up to many weeks affecting chances of survival. Hannah’s experience of a long delay in being given her correct diagnosis of an angiosarcoma (tumour of blood vessels) highlights the need for raised awareness of cancer in young people.

I woke with a huge bruise and a pea-sized lump on my calf. The doctor said it was a bite. The lump grew bigger and I was told it was a haematoma (a dried blood bruise). I was soooo tired but the doctor said many 20 year olds go through it. I told him I had 6 big verrucas on my foot (a sign my immune system wasn’t working properly) but still he said everything was fine.

Six weeks later the lump was the size of an egg. I went to A & E [Accident and Emergency] but the doctors thought me a nuisance. Eventually they tried to burst the ‘cyst’ and draw the blood out. As nothing came out I had an ultrasound scan but they still thought it was just a cosmetic problem. Over the week, it started to leak through the holes made by the needles. I was given padding by another A&E department nurse and was told if it burst just to apply pressure.

I was soooo tired I daydreamed of being in bed. I would go to bed at 9pm to be up at 8. If I needed to go to a club, I would sleep from 4pm until 7pm so I could last the night. I thought the tiredness must be due to my being a size 16/18 so I kept dieting but it wasn’t working.

I got an appointment for a CT scan 12 weeks away - by now the stretching of the skin was hurting. I went back to A&E again. Out of irritation, they decided to take the ‘cyst’ out. The surgeon came up after the op and said everything was fine and to ‘get on and have a nice life’. Then, as he turned to leave he said, ‘We did find something tiny inside which we will send off just to make sure.’

Nurses filled the 2-inch deep hole with sorbsan (a type of seaweed) while the wound was healing. They prepared me for serious pain when changing the sorbsan, but I felt nothing. The doctor put it down to swollen nerve endings but as the days went on the hole got worse, not better. A few weeks later, I went back to outpatients for my results. The bandages were removed so the doctor could look and again a nurse said (with her fingers inside the hole in my leg), ‘You can’t feel that?’

A doctor was concerned (finally!!!) He asked us to step out while he phoned for my results.

When we came back, I noticed the air in the room had changed and that the nurse was with the doctor. He told me the cells weren’t good and that they needed the weekend to find out whether it was cancer or not.

I was told it was lymphoma – but the next day I got a message from the doctor and he said they had the wrong diagnosis. By this time the hole wasn’t being packed. It had filled with cancer and was growing out of it fast. It stank and bled. It looked like something out of a horror movie. It didn’t hurt though which was a blessing.

I was transferred to another hospital. For the first time I felt someone actually knew what they where talking about. I had another biopsy, which was painful. By this stage, the tumour was the size of a melon on my calf. It hung when I stood up and bled everywhere. I had to have the dressing changed every few minutes and there wasn’t a big enough bandage to cope with it. No one had ever seen anything like it. I had photos taken for a medical journal. Hannah.

To read about people's personal experiences, click on the links below.