Childhood Cancer Awareness Month 2014

I became involved with Cancer Research UK and other cancer charities four years ago now. At the time I started my cousin Georgie was 17 and fighting his third cancer, osteosarcoma. His cancer fight started with his first diagnosis on his 2nd birthday and continued right up until his death on my 22nd birthday in April 2011. He was the sixth relative of mine to succumb to cancer. His death had a huge impact on my life and three years on I am still struggling with the huge hole he has left in my life. No one will ever fill it.  He is simply irreplaceable. 

September is Childhood Cancer Awareness Month, a subject very close to my heart because of all we saw Georgie go through. This post is dedicated to my beautiful and much missed cousin and will hopefully raise some awareness.

The cancers seen in children are usually very different to those seen in adults and “childhood” refers to any child aged between birth and fourteen years old.

There are twelve main types of childhood cancer:

*Leukaemia

*Soft Tissue Sarcomas

*Kidney Tumours

*Brain and Central Nervous System (CNS)

*Bone Tumours (Like the one Georgie had)

*Carcinomas and Melanomas

*Retinoblastomas

*Gonadal and Germ Cell Tumours

*Liver Tumours

*Sympathetic Nervous System Tumours

*Other and Unspecified Tumours

Childhood cancer is quite rare and makes up 5% of all cancers. Around 1,600 children in the UK are diagnosed with cancer every year, which roughly works out at thirty one children per week. Around one in every five hundred children in the UK will be diagnosed with cancer.

The UK’s childhood cancer rates are amongst the lowest in Europe, with Northen Europe having the highest incidence rate.

Leukeamia is the most common childhood cancer. Two thirds of all childhood cancers are  leukeamia, brain and CNS tumours and lymphomas.

Surviving Childhood Cancer:

More children then ever are surviving cancer. The survival rate has doubled since the 1960’s and at least 5,600 MORE children now survive for more then five years after diagnosis.

Around 33,000 people in the UK have survived a type of childhood cancer and almost three quarters of children with cancer can now be cured of the disease.

For every ten childhood cancer sufferers – eight will now survive for more then five years after their diagnosis:

*Nearly all children diagnosed with retinoblastoma are cured.

*Survival rates for Hepatoblastoma have doubled since the 1960’s.

*Around six out of ten children diagnosed with neuroblastoma are cured.

*Eight out of ten children with kidney cancer survive the disease.

*Rhabdomyosarcoma survival rates have doubled since the 1970’s.

Childhood Cancer Deaths:

Cancer is the UK’s leading cause of death (from disease) in children aged up to fourteen. A fifth of all childhood deaths are down to cancer.

Brain and CNS tumours are the most common fatal type of childhood cancer.

Around two hundred and fifty children die from cancer every year in the UK.

Childhood cancer death rates have halved since the 1960’s.

Causes of Childhood Cancer:

We don’t know much about what causes childhood cancers but there are several things we do know:

*Rare genetic syndromes such as Li-Fraumeni Syndrome (what Georgie had) can greatly increase a child’s risk of developing cancer.

*Children with Down ’s syndrome have a greater risk of developing leukaemia.

*2/5 retinoblastomas are linked to a faulty gene that has been inherited.

*Children that have had radiotherapy or chemotherapy in the past are at greater risk of developing a second cancer (As Georgie did

CLIC Sargent - Dedicated to Helping Childhood Cancer Sufferers 

Being diagnosed with cancer at any age would obviously be a huge shock and a very emotional time but to see children and teenagers faced with their own mortality before they've really had a chance to live is horrific. CLIC Sargent focus on helping these children and young people as well as their families and loved ones deal with this bombshell, aiming to provide them with support to meet their needs.

CLIC Sargent do several things to help:

*They provide practical clinical and emotional support

* They provide grants and benefit information to help with the financial implications of cancer

*Lots of young sufferers require care in hospitals far from home so the charity provides free accommodation near specialist hospitals with their Home from Home service

*They arrange free mini breaks to allow families the chance to spend quality time together away from hospital and the every day reality of childhood cancer

*They provide over two hundred medical professionals including nurses and social workers to provide various forms of support for young cancer patients and their families.

*They have a wide range of practical and clear information on childhood cancer

I will be posting a lot more information about CLIC Sargent next week but in the meantime check out their website. The charity has a special place in my heart as they helped Georgie when he was sick. They are an amazing charity and we have a fund that raises money in Georgie's name https://www.justgiving.com/teams/georgepantziarkafund

Show Your Support!!

A gold ribbon is the symbol of Childhood Cancer Awareness Month. Please do show your support and buy one if you see them for sale. You can also email your MP from this link and ask them to do the same 

action.clicsargent.org.uk//ea-action/action?ea.client.id=1883&ea.campaign.id=29853

There's a lot more posts to come about this throughout September. I hear so many horrific stories about brave children and young people fighting cancer. As someone who watched someone they love go through it my heart and love goes out to anyone in that position now. More and more children are surviving cancer and I can only hope my teeny tiny contribution to the world of cancer charities helps in a small way and makes my beautiful cousin as proud of me as I am of him. 

Post 250: Cervical Cancer Awareness

I don't know if you've read the truly tragic story of Dawn Weston in the press this week(if not, have a read here http://news.sky.com/story/1319821/cervical-cancer-victim-too-young-to-test)

Dawn sadly passed away after being diagnosed with cervical cancer. She was twenty six years old and recently married. It turns out she was turned down for a smear as she was under 25, the minimum age for smears in England. 

This story is personally scary for me as I am only a year younger then Dawn. Regular readers of this blog will know I'm very passionate about girls having regular smears to detect abnormal cells that could develop into cervical cancer. I'm going to pay tribute to Dawn today but explaining smears and cervical cancer in the hope that it will persuade you to have a smear if you are due one. 

The Cervix:

The cervix is basically the neck of the womb (uterus). It is the opening to the womb from the vagina. The cervix is a very strong muscle which is usually tightly shut but it does open during labour so the baby can come out. The outer surface of the cervix has a layer of cells which are almost skin-like. When these cells become cancerous it is known as squamous cell cervical cancer. There are glandular cells lining the inside of the cervix producing mucus. Cancer of these cells is called adenocarcinoma of the cervix. There is an area of the cervix known as the transformation zone. This is around the opening of the cervix leading onto a narrow passageway that runs into the womb. This zone is where cells are most likely to become cancerous.

Risks and Causes of Cervical Cancer:

* Human Pampilloma Virus (HPV) is the most common and biggest cause of cervical cancer. HPV is passed on from person to person via sexual contact. There are many different types of HPV and not all of them cause cervical cancer. One type causes genital warts but not cervical cancer. However other types are considered high risk. These types can lead to cells in the cervix changing and becoming cancerous. Most women who have HPV and develop cervical cancer will have had other infections caused by HPV in the past. However, not every woman with HPV will develop cervical cancer.

* Smoking can lead to cervical cancer; women who smoke are more likely to develop this type of cancer then women that do not smoke.

* Taking the pill can also increase your risk but the reason for this is not yet known

* Women that have bore a large number of children also have a slightly higher risk as are women with a weakened immune system.

Smear Tests:

It is hugely important to have cervical screening as preventing cervical cancer from developing is vital. Cervical cancer is actually one of the only cancers that is preventable because if pre cancerous cells are detected through screening then they can be treated before they have a chance to become cancerous.

Women between the ages of twenty five and sixty are encouraged to have smear tests every three to five years to detect any changing cells in their cervix. During a smear test, a doctor or nurse will insert a speculum into your vagina and scrape anyway a sample of cells from your cervix. These cells are then placed into a small pot of liquid and send to be analysed. You will then be contacted with your results and any abnormal smears will require further investigation.

You don’t have to be over the age of twenty five to develop cervical cancer; some younger women do develop it as well. However, in the UK, smear tests are not encouraged until twenty five because your cervix is still developing in your teens and early twenties. This means the likelihood of you getting an abnormal result is more common but usually nothing to worry about. After Jade Goody’s horrifically young death, a campaign was launched to lower the smear test age limit but medical professionals do not agree with this. If you are under twenty five and are concerned about your cervical cancer risk – please do speak to your GP and get some advice. A private gynaecologist may allow you to have a smear test but it would depend on your individual circumstances.

PLEASE DO NOT BE SCARED TO HAVE A SMEAR TEST – THEY ARE UNCOMFORTABLE AND UNLADYLIKE BUT THEY DO SAVE LIVES! A FEW MINUTES OF DISCOMFORT IS BETTER THEN A BATTLE WITH CERVICAL CANCER!!!

It is also important to note that an abnormal smear result does not mean you have cervical cancer. If you are contacted and told your test was abnormal then please do not ignore it, go and see what your doctors have to say.

Symptoms:

Before I start listing the symptoms, please note that pre cancerous cells do not produce symptoms. This means having a smear test is hugely important – you can catch the cancer before it even develops. It is also important to know that the following symptoms do not instantly mean you have cervical cancer but it is important to go to your doctor if you have any of these symptoms:

* Bleeding between periods

* Bleeding during or after sex

* Bleeding at any time after the menopause

* Discomfort or pain during sex

If you are worried about HPV or cervical cancer then please contact your GP or visit www.cancerresearchuk.org for more information. If you are reading this and you are above twenty five but haven’t had a smear test for a few years, please book one ASAP. Too many women die from cervical cancer and knowing it is preventable makes their deaths even more tragic. Please don’t put your health at risk.

Jo’s Cervical Cancer Trust is also known as Jo’s Trust and it is the only UK based charity to focus solely on women that have been affected by cervical cancer and their families. They also help women dealing with cervical abnormalities. They aim to offer information, advice, friendship and support to these women, regardless of their age and status. They also try to educate women on the importance of cervical screening and to provide support for the women that have abnormal screening results or ladies that have a cervical cancer diagnosis.

Jo’s Trust has a mission: “Our mission is to see cervical cancer prevented, reduce the impact for everyone affected by cervical abnormalities."

The trust provides support groups, allowing women to come together, bond and share experiences. They also have a helpline to provide support, they have an online forum for people to come together in the comfort of their own home and a yearly meeting for women to get together and enjoy themselves. They also provide many helpful information leaflets which can be found on their website.

Jo’s Trust is a fabulous charity which does amazing things for women in the UK. I whole heartedly agree with their mission and their core values and I would love to see them succeed and help make cervical cancer a thing of the past. Please do check out their website and find out ways to help them achieve their goals. You can also find them on twitter @JosTrust

This is my 250th post on the blog and it's dedicated to Dawn, a beautiful young girl taken far too soon xxx

Grey's Anatomy and Li Fraumeni Syndrome

I'm a big Grey's Anatomy fan. I have been for years. No programme has the ability to make me cry as much as this one. (Denny?! Mark Sloan?! GEORGE?!?). A good 99% of the episodes are flawless and so very well written. 

Today I became an even bigger fan of the show, and of Shonda Rhimes, the writer and creator of the show. 

Today I finally found the strength to watch an episode which was very close to home for me. I heard rumours that Grey's were featuring Li Fraumeni Syndrome in an episode but I couldn't bring myself to watch it as Georgie had it and it would be upsetting. 

I was blown away by the episode. It was written in a sensitive yet informative way and was so factually correct it left me speechless. It featured a teenager in a very similar position to Georgie and, whilst I found it upsetting and my heart was hurting as memories rushed into my head, I cannot fault the programme for raising awareness in such a brilliant way. 

So from a Li Fraumeni family in the UK, thank you Grey's Anatomy! If you are a fan of the show then it's season 10 episode 14 - "You've got to hide your love away"

If you haven't seen the show before then I insist you go by yourself a boxset this weekend and I dare you to not become obsessed by Monday.

Here is some information on Li Fraumeni Syndrome:

The TP53 Gene:

The TP53 gene acts as a tumour suppressor. It creates the p53 protein which kills cancerous cells. When the TP53 gene fails, the body loses one of its key ways of stopping damaged cells developing into cancer. Some people with cancer find their TP53 gene is damaged within the tumours but is functioning normally throughout the rest of their body. However, some people are born with a damaged TP53 gene. This is usually an inherited problem and it passed down from parent to child. These people have a very very very high risk of developing cancer.

Li Fraumeni Syndrome:

LFS is one of the most serious kinds of inherited TP53 disorders. It is a rare disorder that greatly increases the sufferers risk of developing several kinds of cancer especially children and young adults. The most common cancers associated with LFS are: breast cancer, osteosarcoma (a type of bone cancer) and soft tissue sarcomas.

Diagnosing Li Fraumeni Syndome:

LFS is rare so not much is known about it. Genetic testing and genetic counselling are used to confirm whether or not someone is suffering from LFS. If it is confirmed then this person will need to be regularly screened to check for cancer. The sad fact is, people with LFS are very likely to develop cancer so it is hugely important for them to be screened as cancer is easier to treat the earlier it is diagnosed.

Please look into genetic testing if you meet the following criteria:

An individual with:

·         Adrenocortical cancer at any age

·         Choroid plexus cancer at any age

·         Rhabdomyosarcoma below 5 years

·         Breast cancer below 30 years old (if eligible for BRCA1/2 testing, this should be performed first)

·         Two or more primary cancers of the following: sarcoma, breast, brain, adrenocortical or any childhood cancer; at least one below 46 years old

Two relatives affected with:

·         Sarcoma, breast, brain, adrenocortical or any childhood cancer; one relative below 36 yrs and one relative below 46 years old

Three relatives affected with:

·         Sarcoma below 45 years old and

·         any cancer below 45 years old and

·         any cancer below 45 years old or sarcoma at any age

Georgie and Li Fraumeni Syndrome:

Georgie’s mum died when Georgie was one years old. She was 29 years old and had ovarian cancer. Georgie was then diagnosed with cancer a few months later on his second birthday. At the time it was written off as a horrific coincidence by doctors. It wasn’t until Georgie was diagnosed with cancer for the third time at the age of fifteen that we discovered he had Li Fraumeni Syndrome which had probably been inherited from his mother.

It took a very long time for Georgie to be diagnosed with the osteosarcoma that eventually killed him. At first he was told it was a dental problem. Had we have known he had LFS; he could have been diagnosed much quicker as alarm bells would have been ringing. We will never know if this could have saved his life. We live with the “what if?”

LFS and other TP53 disorders are rare and not much is known about them. There is little awareness about them amongst the general public and even the medical profession. There aren’t any dedicated support groups or charities, no information resources and no registry of the sufferers. There isn’t a community for the sufferers which can make it very isolating, lonely and terrifying for the sufferers and their families.

As I have mentioned before, my uncle has set up the George Pantziarka TP53 Trust to honour Georgie’s memory by providing support to families and individuals, to provide information on TP53 disorders including LFS and to get research funded to look into the condition.The forum on the website which is used to bring together people affected by the condition. Please do take a look and feel free to ask any questions – my uncle is always happy to answer!

For more information on TP53 and Li Fraumeni Syndrome, please visit www.tp53.co.uk

We miss you Georgie xx