Friday, 14 December 2012

Childhood Cancer Awareness Month - Diagnosis and Treatment


Another blog post focusing on childhood cancer today! This time I’m going to be breaking down the diagnosis and treatment of childhood cancer.

As my family is well aware, there is a wide range of syndromes that run in families which can lead to an increased risk of a child developing cancer. Li Fraumeni Syndrome is just one of them and it was this syndrome that led to my cousin being diagnosed with cancer three times in his short life. When Georgie was a baby and was diagnosed with cancer for the first time, my uncle asked his doctors if it was linked to his mother, who had died a few months before. The doctors told my uncle it was just a horrific coincidence and nothing to do with genetics. It wasn't until Georgie was fifteen and diagnosed with the cancer that killed him that we discovered he has Li Fraumeni Syndrome and it had probably been inherited from his mother. It took a while for Georgie to be diagnosed this time and we have to live with the fact that had we have known he had LFS, he may have been diagnosed a lot quicker and this could have saved his life. Unfortunately for us, we will never know.

Luckily, huge advances have been made in recent years and more and more people are having genetic testing and genetic counseling to see if they have any inherited factors that could increase their risk of developing cancer. For example genetic testing for families with a history of retinoblastoma has become standard procedure which is a huge step forward.

Please do read my blog post about gene mutations for more information on this.

As I have said above, huge and significant advances have been made in relation to childhood cancer, especially when it comes to treatment and mortality rates. This is mainly down to the introduction of standardized protocols in clinical trials as well as the centralization of care.

There are many organisations and groups who co ordinate trials into childhood cancer and look into various issues surrounding it. These include the Children’s Cancer and Leukaemia Group (CCLG) which my friend and fellow ambassador Neil is part of. I’m going to ask him to do a guest blog post on this subject.

At the moment there are around thirty groups which have been set up to research specific tumour types and other disciplines surrounding childhood cancer.

There are twenty one specialist centres dedicated to looking after children with cancer in the UK and Ireland. These have been shown to significantly benefit these children by forming a close knit network. Each of these twenty one units is a centre of excellence and have multidisciplinary teams of specialists with experiences of treating the specific tumours seen in children. These centres are:

*Royal Aberdeen Children’s Hospital
*Royal Hospital for Sick Children Belfast
*Birmingham Children’s Hospital
*Royal Hospital for Sick Children Bristol
* Addenbrooke’s Hospital Cambridge
*Children’s Hospital for Wales Cardiff
*Royal Hospital for Sick Children Edinburgh
*Royal Hospital for Sick Children Glasgow
*St James’ University Hospital Leeds
*Leicester Royal Infirmary
*Alderhey Children’s Hospital Liverpool
*Royal Manchester Children’s Hospital
*Great Ormond Street Hospital
*University College London Hospital
*Royal Victoria Infirmary Newcastle
*Queens Medical Centre Newcastle
*Queens Medical Centre Nottingham
*John Radcliffe Hospital
*Sheffield Children’s Hospital
*Southampton General Hospital
*Royal Marsden Hospital Sutton
*Our Ladies Hospital for Sick Children Dublin


Treating Childhood Cancer:
The typical treatment for the majority of childhood cancers is surgery, chemotherapy and radiotherapy. Here is a summary of treatment options of some of the cancers seen in children:
*Acute lymphoblastic leukaemia and acute myeloid leukaemia– Usually Chemotherapy combined with steroids. Donor stem cells or bone marrow can be considered for patients with resistant ALL or those that have relapsed. Radiotherapy is sometimes used as well.

*Hodgkins lymphoma – Sometimes surgery is used to remove the tumour if it is at stage one but the main treatment is usually chemotherapy and radiotherapy.

*Non-hodgkins lymphoma – There are many different types of NHL and treatment will depend on what type the child has. Normally treatment is radiotherapy, chemotherapy and biological therapy although stem cell and bone marrow transplants can also be used.

*Brain and CNS tumours – If surgery is feasible then this is usually the preferred treatment option but chemotherapy can also be used. If the child is under three years of age then radiotherapy should be the last resort as it can damage the child’s still immature brain.

*Neuroblastoma – if the tumour is localized the surgery is usually the first option. Chemotherapy before and/or after surgery is also an option as is a stem cell transplant.

*Retinoblastoma – Smaller tumours are treated with laser treatment to the eye. Cryotherapy and thermotherapy are also options for smaller tumours. Larger tumours are usually treated with chemotherapy, radiotherapy or surgery to remove the eye. A combination of treatments is sometimes used.

*Nephroblastoma – Surgery to remove part or the entire kidney is an option as well as chemotherapy and radiotherapy before and/or after surgery

*Osteosarcoma – The main treatment option is surgery to remove the tumour and surrounding tissue. Sometimes amputation is necessary. Chemotherapy is usually used before and after surgery. Radiotherapy can also be used.

Osteosarcoma is the cancer that killed Georgie. He had it in his jaw. He had various treatments throughout his illness. He had his jaw removed and replaced twice but unfortunately microscopic cells were left behind and the tumour simply grew back. He also had chemotherapy and photo dynamic therapy amongst many other treatments.

*Rhabdomysarcoma – surgery is the main treatment option and chemotherapy or radiotherapy is usually used before and/or after surgery

Georgie was diagnosed embryonal rhabdomyosarcoma in the left temporalis muscle on his second birthday. He had a small dent in the side of his head after it was removed. He had chemotherapy through his “wiggly” (hickman line) and several other treatments and he managed to beat this cancer, although he was given a very low chance of surviving the disease.

New treatments such as immunology are being developed all the time and ways of treating childhood cancer is evolving.



Childhood cancer survival rates are improving all the time, and more children then ever are surviving. There is still a hell of a long way to go and unfortunately many children are still dying, my beautiful cousin included. It is important to know that there are many people out there dedicated to trying to find ways of preventing, treating and curing childhood cancer. I am very much looking forward to the day when childhood cancer becomes a very very rare occurrence.

If you have a child that is suffering from cancer, or you are a child with cancer, my heart is with you and I wish you nothing but the best.

For Georgie – I miss you more and more every single day xxxx



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