Monday, 17 June 2013

Sarcoma Awareness Week Part One

Sarcoma is a type of cancer that I know all too well. This week is all about raising awareness of this cancer type and the inspirational people that have fought it/are fighting it. I hope you find this weeks blog posts interesting and informative.

What is Sarcoma?
Sarcoma’s are rare cancers that develop in the supporting tissues of the body, for example muscle, bone and nerves. They are some of the most common childhood cancers. About 55% of sarcoma’s affect the limbs and about 15% affect the head and neck, the remainder will be found in the abdominal area inside your body.

There are three main categories of Sarcoma: Soft tissue cancer, Primary bone cancer and Gastro-Intestinal Stromal tumours. There are also about seventy different sub types of sarcoma which fall into these three main categories. Osteosarcoma falls under the primary bone cancer category.

Sarcoma UK
Sarcoma UK is the main UK charity dealing specifically with all types of sarcomas. In March 2011, The Sarcoma Trust and Sarcoma UK officially joined together to become known collectively as Sarcoma UK.

Sarcoma UK has one main aim: to get the best possible level of treatment and care for patients suffering from sarcoma. They achieve this through three different means:
·         They fund scientific and medical research into discovering what causes sarcomas and how to treat them
·         They deliver various types of support and information services which cover all aspects of sarcoma
·         They raise awareness of sarcoma with members of the public, healthcare professionals and policy makers.

The fact that sarcoma affects a lot of children is horrifying, especially when it could mean having limbs amputated. Georgie had to have his jaw replaced; such a horrific and painful experience for anyone, let alone a sixteen year old boy. However not many people are aware of this type of cancer, I wasn’t until it affected someone close to me.
Sarcoma UK has a small team of hard working staff who work alongside doctors, nurses, researchers and other cancer charities. It has a board of trustees, many of whom have had personal experience with sarcoma. It is a fantastic charity working hard to bring awareness to such a terrible form of cancer. It is so important to bring awareness to such a worthy cause and to get this charity as much publicity as possible. It provides much needed support and information to sarcoma patients and their families as well as much needed research into ways of preventing and curing the disease.
Sarcoma UK relies on voluntary donations as its sole means of funding their hugely important research projects into sarcoma. If you know of a way of fundraising for a charity then I really do urge you to bear Sarcoma UK in mind. Every little really does help in the battle against sarcoma cancers.

Osteosarcoma and Georgie
Osteosarcoma was the type of cancer that killed Georgie. He was fifteen when his jaw swelled up. At first he had a numb lip and weird tingling sensation. It took a while to get to the bottom of what was wrong but we eventually found out it was a tumour in the right mandible. After years of treatment and numerous surgeries, Georgie passed away just months before his eighteenth birthday.
On average thirty children per year in the UK develop osteosarcoma. This kind of cancer is more common in teenagers and is usually found in boys. It is rare to see it in a child under the age of five.
Osteosarcoma starts in the bone, usually at the end where new bone tissue forms as you grow. Any bone in the body can be affected, with Georgie it was the jaw, but it is commonly found in the arms and legs. The knee joint is a particularly common site for osteosarcoma.
The cause of osteosarcoma is unknown at the moment but there are some risk factors to consider: people with Li Fraumeni Syndrome are at more at risk of developing osteosarcoma, as are children who have hereditary retinoblastoma. If a child has had radiotherapy or chemotherapy in the past then they also have an increased risk.
INJURIES THAT DAMAGE BONES DO NOT CAUSE OSTEOSARCOMA. THEY CAN, HOWEVER, DRAW ATTENTION TO ANY TUMOURS THAT ARE ALREADY THERE.
Pain in the bone is the most common symptom of osteosarcoma. This may be on and off for a while at first and then become more severe and constant over time. Swelling may also occur. The bone can weaken and break, which is how many osteosarcoma cases are discovered. Most symptoms can be caused by something else so it is hard to know when to go to the doctor but if your child has persistent pain and swelling in the bone – I would recommend taking them for a check up.
To diagnose osteosarcoma, the doctor will do a series of tests including x-rays. If a bone tumour is suspected then a specialist will be needed to perform further tests such as biopsies. A physical examination of the affected area and a blood test may also be required. Bone scans, MRI’s and CT’s may also be required.
Treatment for osteosarcoma would depend on the size, position, grading and stage of the tumour. Surgery is usually a very important part of the treatment as is chemotherapy. Chemotherapy is usually used to destroy the cancer cells and shrink the main tumour before surgery is performed. It is then used again when surgery has been performed to blast away anything microscopic that may have been left behind. This is to try and reduce the chance of the cancer returning.
Radiotherapy may also be considered as it can destroy cancer cells with high energy rays but do little damage to the normal surrounding cells.
Surgery would depend on the size and position of the tumour. The whole limb may need to be amputated, especially if the cancer has spread to the surrounding nerves and blood vessel. A prosthetic limb will be fitted. Obviously this is a major thing and I don’t want to appear to not take this seriously. Your child’s doctor should discuss this in a great amount of detail with you and both you and your child should receive lots of support if amputation is the only option.
In other cases, limb sparing surgery can be used to preserve the limb. This may involve replacing the limb with a bone graft using part of another bone in the body or it may involve replacing the bone with prosthesis. Georgie has his jaw replaced with another bone part TWICE.
Even with amputation, it should be possible for your child to adjust and still be able to participate in “normal” activities and sports are still a possibility. Long term effects should be discussed with you before surgery.
Osteosarcoma can be a very aggressive type of cancer, and unfortunately, survival rates are not very good. I have a particular hatred for this cancer type and I am hopeful clinical trials and research will discover new ways of treating, curing and preventing osteosarcoma. Please do visit my uncle’s site www.anticancer.org.uk for more information as he is a fountain of knowledge on the subject, and as a parent of a child, who had cancer, he is well informed and able to explain things much better then I ever could.
This is just an introduction to the theme I will be exploring this week but please contact Sarcoma UK if you are worried about anything you have read here today.

Sending lots of love and positive thoughts to anyone currently battling osteosarcoma or anyother sarcoma cancer.

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