Delayed Diagnosis: 'I get out the pictures of myself in chemo, and go "boom! there you go, proof I understand".'

In the second part of our week-long series, four young people share their struggles to get a cancer diagnosis, the ordeal of treatment and where they are now.

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ARNIE HIGGS, 17, Essex

I was captain of the cross country team, vice captain of the rugby team and goalkeeper for my school team. I even had trials for Arsenal Young Guns, Arsenal's Under-18s team, as a goalkeeper. I was the class clown at school,  everyone knew me and liked me.

I started to get these headaches, like brain-freezes, and I was being sick in the morning. My mum took me to my local GP and he said it was anxiety and my mum said "How is it anxiety? He's got nothing to worry about". Which is true, I didn't.

I was sick throughout the month, so we went back and got told it was anxiety again, and another month went by and by that stage I was being sick every morning and the GP said the same thing. I went back again, and got blood tests, which came out clear. The symptoms got worse. A month after that, we went to the opticians and she saw pressure at the back of my eyes. She looked quite scared and she phoned my GP straight away. He said he couldn't see anything. So, the same day we went back to the optician's and she referred me for an MRI scan. I didn't think anything of it.

It all happened very quickly after that. It was all blue flashing lights and sirens all the way. The brain tumour, which turned out to be the size of an apricot, was blocking my spinal fluid, so they put a tube in the top of my head and I stayed in a hospital bed with the drain for two weeks until it drained out. Then I had the operation. It took eight hours to remove the tumour. My dad and brother came to see me after the op and they heard me before they saw me. They told me that I was effing and blinding at the staff. It made them laugh because they knew I must be OK if I could keep that up.

Six weeks later I started radiotherapy. During radiotherapy I lost my appetite completely and I lost an immense amount of weight, and of course there was hair loss, stuff like that. My neck and the top of my shoulders were burnt, like sunburn. At that time I still didn't really know what was going on and I didn't understand what a tumour meant. I was like: "let's get through this and then it'll all be sorted, right?" I was like a skeleton by the end of radiotherapy and that's when I had chemo twice a week for a year. I moved to the Teenage Cancer Trust unit at UCLH and met some wonderful people and did some wonderful things like arts and crafts, and had a patient group every Thursday. That took my mind off things.

From the start of 2009, when I was in the treatment, my dad was my motivator. We used to go to Southend-on-Sea, to this ice cream place. I couldn't walk very far, so I used to hold on to his arm rather than than sit in a wheelchair, because he said once I got used to being in a wheelchair it'd be even harder to get out again. If I got too tired he'd pick me up. Sometimes I got embarrassed and I'd put my head down, he'd say "Hold your head up high, show them who you are, be proud of your self."  I always used to carry a backpack and every day I used to put an extra tin of beans in there, to sort out my posture and my strength. One time,  we were walking to a bench and I tripped over an uneven bit of paving slab and my ice cream went everywhere. My dad picked me up . We sat on a bench and my dad was telling me to keep positive when two boys ran past laughing and joking and my dad looked at me for a long time, straight in the eyes, and he said: "In a few years that's what you're going to do".

My path in life has changed dramatically. When I was a young boy I was a cheeky chappie and now my mates call me Benjamin Button cos I'm like a granddad. They come round to mine and watch films with me if I'm too tired to go out. If my friends are ever unwell, they always ring me for advice.

I passed my health and social care NVQ level two last year and this year I'm doing level three because I want to work with teenagers with cancer and get 'em up, get 'em out, get 'em moving and get 'em motivated.  That's why I call myself Mr Motivator; because I've been through it, I can can empathise with patients. If they say to me,"you don't understand", I can get out the pictures of myself in chemo, and go "boom! there you go, proof I understand".   I am determined to get better every day and determined to help others in the same way. A couple of months back, my mate shattered  his knee cap and he couldn't walk. I was by his hospital bed 24/seven and then one day the physio came in. She told him to get up and walk to the door, so when he started wimping out I was like, "just do it mate, come on, just do one more" and he did it. He was walking. The next day I came back and he walked 30 steps. It shows what I can do. I know I can help others, I feel I have the power and inner strength to do that. I feel like it's what I'm meant to do.

BRAIN TUMOUR

Brain tumours account for around 9% of all teenage and young adult cancers.

A malignant brain tumour is a fast-growing cancer that spreads to other areas of the brain and spine and can affect people of any age. Most malignant brain tumours are secondary cancers. This means they started in another part of the body and spread to the brain. Primary brain tumours are those that started in the brain. There are about 4,500 new cases of primary brain tumours in the UK each year.

Common signs and symptoms

The symptoms of a malignant brain tumour depend on how big it is and where it is in the brain. They are caused by the tumour putting pressure on the brain:

  • headaches (pain) that doesn’t respond to pain killers
  • seizures or fits
  • visual disturbances
  • nausea (feeling sick)and vomiting

Common treatments

It's very important that a malignant brain tumour is treated as soon as possible because they can spread quickly and damage other parts of the brain and spine. The tumour is usually operated on and as much of it removed as possible. This may be followed with chemotherapy and radiotherapy.

 

JULIA DEAN, 27, London

 

I called it a nobble. One day it was just my normal shoulder and the next day it was this...nobble. I showed it to my friends over drinks in the evening, saying, "where'd this come from?! what is it?" I thought maybe I'd overdone it at the gym. The first time I showed my GP he said, "Oooh, this'll be interesting for my students!" He thought either a muscle had ruptured or it might be a benign cyst. It wasn't flagged up as urgent at all so it took many weeks before anyone examined it properly.

This is the thing I regret: They said, to save me coming in twice, I could wait and just get it biopsied when the lump was removed. Because I thought it was benign, I agreed to wait for the biopsy - which would have shown it wasn't benign at all.

I had an operation date in the middle of March and in the meantime it changed colours and seemed quite fluidy when I touched it. The GP gave me antibiotics and said it was infected and when I went to get the infection removed, and the GP cut into it it was horrible! It was a bit of a bloodbath actually. The doctor and I were both a bit shocked. Two weeks later I was scheduled to get the "cyst" removed, I told the surgeon what had happened and when he cut into it, well, the surgeon said in this taut voice: "It's a bit different from what I expected...you'll have to come back another time."

They told me in a really nice way. They said they found cancerous cells but didn't know exactly what it was. It was obviously a massive shock. It was a bit scary and weird. I had never even thought cancer in your shoulder could exist! but I'm an optimistic person and I thought, "I'll have an operation and it'll be fine." I didn't have any details, so I called my sister who's a vet,  I thought she might understand the medical side of things.

When I went to visit my parents to tell them the news, my dad picked me up from the station and immediately asked how my shoulder was. Really I wanted to get home and have a sit down and a cup of tea first before I told him and my mum, but because he asked, I had to tell him straight away. We were both crying in the car journey back.

It took about three weeks or so before they could tell exactly what it was, because it was very rare, I knew I had something serious but I had no idea what I was going to go through, which was really difficult.  Once they found out it was Ewings Sarcoma, I started treatment straight away.

When I found out I needed chemo and my parents offered to come down to London each time I had a treatment, I said "No! Don't make a fuss!" I think I didn't fully realise what it would be like. Of course they ended up coming with me and I went back home to my parents in Doncaster between treatments. I had to take six months off work.

I could see the lump had got much smaller after just one dose , so I knew the chemo was working. The treatment was difficult and after five months, I had to stop because I was so weak, and wait before I could have the final treatment, which was very frustrating. My hair had just started to grow back and then the last treatment made it fall out again. Another hard part for me was adjusting to relying on people again, I had been to university and left home - and now I needed looking after again, and had to adjust to not having my independence or being able to go out and have fun with friends.

I think it was hard at first to come to terms with it and in some ways I'm still in denial that it ever happened. It hasn't changed my outlook that much. I get a bit more emotional about things now, when I see my family and stuff I feel I was really lucky the treatment worked.  I want to make sure I am living my life properly now and I think “You've been given a second chance, so make sure you're doing all you can to really enjoy life.

EWINGS SARCOMA

Bone cancers account for about 6% of all teenage and young adult cancers.

Ewing's Sarcoma can develop anywhere in the body, although it most often starts in the bone (a primary bone tumour). There are several different types. This sarcoma is most commonly found in teenagers and young adults, and is slightly more common in males than females.

Common signs and symptoms

The following could be a warning sign of bone cancer:

  • A lump or swelling
  • Pain that usually
  • gets worse over
  • time and can feel
  • more painful
  • during the night
  • Extreme tiredness

Common treatments

The treatment for most bone cancers is chemotherapy to shrink the tumour and then surgery to remove the affected part of the bone.

 

LAURA GIBSON, 16, Edinburgh

 

It was August 2010 when I got itchy feet. You don’t think “Oh, I've got itchy feet, I must have cancer.” We thought it was Athlete's Foot or something normal. In my sleep, I'd scratch them and I got big open sores on them, my feet were becoming really torn up.I went back to the my doctor, who treated me for Athlete’s Foot, that didn't work, so I then got treated for scabies. I began getting really tired all the time. People just thought: “It's nothing, you're just being a teenager”, but by Christmas, I was itchy across my whole body.

I live a week with my dad and a week with my mum and I was staying with my mum over Christmas. It was New Year’s Day went back home to my dad. I'd been out the night before, obviously, and my dad made a comment about how ill I looked, he said “you look really green”. I had more tests. Then in February I went to the Royal Infirmary and they said it was Celiac disease [a disorder of the small intestine] they thought that was the reason I didn't have any nutrients in my blood.

I stayed off gluten for three weeks and then I went back to my doctor at the royal infirmary and he said, "there's not a chance that you have celiacs". He thought it might be Crohn's disease [a form of inflammatory bowel disease] that I had. He didn't really listen to me and he kept asking, "do you have bowel problems?". It made me really annoyed because I had told him all my symptoms and repeatedly said I didn't have bowel problems, but he didn't listen. It was ridiculous and so frustrating. I knew my symptoms, but he was quite adamant that I had Crohn's. Other teenagers that I have spoken to in a similar position have all said they hate their GPs. Maybe doctors don't think young people are mature enough to know their own bodies. Finally, I was referred for scans.

When my mum told me it was Hodgkin's Lymphoma she made me promise I wouldn't google it. So, obvioulsy, as soon as she went out the room I googled it. I felt a mixture of shock, upset and also relief because I finally actually knew what was wrong with me. I was immediately put on an oncology ward and I didn't go home for a week. They did all my scans again; ultrasound, x-rays, MRIs, a biopsy. I was just really ill and really tired. I felt everyone wanted to poke me and prod me. I phoned my best friend to tell her what it was. Before I was diagnosed I was joking with her about all the strange diseases I might have and I was like, "oh my god! imagine if I have cancer! that would be awful!" When I called, she was like,  "how were your scans?" And I said, "I have cancer" and she thought I was joking! She was like "no, really, did you find out what you had?". When it sunk in, she was in shock. I said she could tell my ten closest friends at school about it. She came to see me that night in hospital and said a lot of other people had found out about it and there were rumours that I was dead, so that was a bit weird.

Chemo is not something you think about until you have to confront it. I was lucky, I didn't feel ill with it and I only threw up once. My only previous idea of what it might be like came from watching My Sister's Keeper and that seems really unrealistic, as it was so much better for me than it's portrayed in the film. I also thought I would be stuck in hospital all the time, but I actually got to go home a lot of the time, as I live locally.  That was in March and then I didn't start going into school again until August. I would go back for a few hours and then sometimes a half day, then a full day here and there.  My life is almost back to normal. now. That whole period of time now is just a blur.  It almost feels like it didn't happen.

HODGKIN'S LYMPHOMA

Hodgkin's lymphoma is the second most common type of cancer found in young people. It accounts for around 20% of all teenage and young adult cancers.

Lymphoma is a cancer of the lymphatic system, which is part of your immune system. Clear fluid called lymph flows through the lymphatic system and contains infection-fighting white blood cells known as lymphocytes. There are two types of lymphoma: Hodgkin's lymphoma and non-Hodgkin's lymphoma, each affecting a different type of lymphocytes. Hodgkin's lymphoma is more common in young people aged between 15 and 35.

Hodgkin’s lymphoma can spread through the body quickly. However, despite this it's also one of the most easily treated types of cancer. Almost all young people with Hodgkin's lymphoma will fully recover.

Common signs and symptoms

The following could be a warning sign of lymphoma:

  • a swelling in a lymph node, usually in the neck, armpit or groin

Advanced lymphoma symptoms:

  • Unexplained tiredness or fatigue
  • Heavy night sweats
  • Unexplained, significant weight loss
  • Fever
  • A persistent cough or feeling of breathlessness
  • Persistent itching of the skin all over the body
  • Trouble getting rid of infections

Common treatments

Lymphoma is treated with chemotherapy and also sometimes radiotherapy. Steroids can also be used.

 

JACK MEEKS, 19, Peterborough

I didn't want to feel that I was attention-seeking and wasting doctors' time, so after a couple of visits where my GP told me the pains across my shoulders were growing pains, I just dismissed it. I'd just left school and I was working as a builder. People at work kept coming up to me and telling me I looked terrible - and I'd just tell them where to go or say "you don’t look too great yourself, mate". But I was so tired. Looking back I don't know how I pushed myself to go to work every day. I’d fall asleep as soon as I got home and I was losing loads of weight.

Then I started getting night sweats. I didn't want to make a fuss, but after a week I told my Dad and he persuaded me to go back to the doctor's. I got tested for diabetes and glandular fever. Then I collapsed at home. I went into Peterborough A&E and they thought it was swine flu at first, but I explained the other symptoms and a doctor mentioned leukaemia. It still hadn’t hit home that leukaemia was cancer. I just felt relief that the doctors knew what it was. But my parents started crying, so I knew it wasn't great news.

After some tests, I was diagnosed with acute lymphoblastic leukaemia. When I started chemotherapy, I thought it would be a walk in the park — then as soon as I started to think how easy it was, I immediately felt sick. I originally got put onto an oncology ward for about seven weeks, which was awful, and I heard there was one other young guy like me there, but I never met him. Being on an adult ward, it was mostly very old people. I was very isolated, I didn't really socialise apart from with my family, which was quite hard.

For my next round of intensive chemo I was able to stay at home, which was much better, because I had my family and my girlfriend around me. In December of that year I found out the cancer was in remission and I can't put into words how I felt.  I was so relieved and I felt it was another chapter done with. My family and my girlfriend were all over the moon, they were just so glad to have that bit out the way. Then I went onto maintenance treatment, which lasts for three years, it involves taking chemo at home every night and going to hospital fortnightly for Vincristine [a chemotherapy drug] and every other month for lumber punchers.

I still get a lot of infections and blood clots, which usually means a week in hospital where they sort me out. In June this year I went in with another blood clot to the hospital at Addenbrooke's Hospital, Cambridge, and it has a new Teenage Cancer Trust unit.  It comes across more like a hotel than a hospital. I've been on there twice now and it's so much better than the other ward because you can talk to other teenagers and you don’t feel so alone. I've almost finished my maintenance treatment now and you get people who are just starting and they are constantly asking me questions about what it's like.

I used to hate going in and if I got an infection I'd put it off and put it off. But on the new ward you aren't just sat in bed all day staring at the ceiling or watching TV. They have PlayStation and pool tables and you get your meals whenever you want them, not at fixed times. It seems strange to say it, but I actually like going there now. It’s like a home from home.

I've pretty much picked my normal life back up now, I go out with mates and to the gym. The whole cancer thing definitely changed my attitudes. I just respect life now. I want to go travelling, and I’m going to college and training to be an electrician. It’s quite hard getting back into the swing of it, but its nice having that routine back.

LEUKAEMIA

Leukaemia accounts for around 11% of all cancers in teenagers and young adults.

Leukaemia is cancer of the cells in bone marrow. Bone marrow is the tissue found inside our bones, and is where new blood cells are made.

There are several different types of leukaemia, each affecting a different type of blood cell – usually white blood cells. The word leukaemia actually comes from a Greek word which means ‘white blood.’ In this way leukaemia is similar to lymphoma, which also affects white blood cells. Leukaemia can also either be ‘acute’ or 'chronic'.

Acute leukaemia affects young blood cells and spreads quickly. Chronic leukaemia affects more mature blood cells meaning it grows more slowly.

Common signs and symptoms

Symptoms depend on the type of leukaemia but some of the most common ones are:

  • extreme tiredness
  • pale skin
  • breathlessness
  • having repeated
  • infections over a
  • short space of time
  • Anaemia
  • Blood clotting problems

Common treatments

Treatments include chemotherapy sometimes followed in extreme cases by stem cell (bone marrow) transplants. To have a bone marrow transplant, total body irradiation (intense radiotherapy) is also needed to stop the immune system rejecting the donor marrow.

 

Interviews by Emily Jupp

This week (1-7 October) is Teenage Cancer Awareness Week and the Teenage Cancer Trust  and Independent Voices are encouraging all secondary school teachers to speak to young people about the signs and symptoms of cancer during this week. Sign up your school, college or university for a free talk from the Teenage Cancer Trust here.

 Free teaching packs can be found here. The packs contain lots of information about cancer types, treatments and signs and symptoms, as well as a glossary of terms.

Teachers can also contact Teenage Cancer Trust for help and advice about speaking to young people about cancer or to arrange a free talk from one of the Teenage Cancer Trust education team on 020 7612 0389 or education@teenagecancertrust.org

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