When a diagnosis of retinoblastoma is made, the journey for that child has only just begun. Kids don’t usually die from retinoblastoma – well, not in developed countries, anyway. Unfortunately, it’s the links retinoblastoma has with secondary cancers later in life that cause the real problem.

Fact sheets and brochures have been produced over the years warning retinoblastoma survivors of the types of cancers to look out for, and how to monitor their bodies for any suspicious changes. But like anyone concerned with their health, detecting cancer is not always as simple as finding a lump.

Retinoblastoma International is an American charity that is involved in education and research on retinoblastoma. One of their desires in the research field has been to find a way of identifying a retinoblastoma survivor who is at risk of developing secondary cancers to enable early diagnosis.

Now they are closer to achieving this dream.

In the Proteomics Program, proteins that have been shed by cancer cells and are circulating in the blood can be studied to determine a person’s likelihood of developing a secondary cancer, such as osteosarcoma, soft tissue cancer or melanoma. The patterns these proteins take on are like markers that signal the type of cancer they represent.

Retinoblastoma International has just received a grant to kick off this project. And retinoblastoma is their focus. Further down the track, other childhood cancers will be studied. In their latest newsletter, they state that they hope to begin testing at the end of this year.

So for those of us who are adult survivors of retinoblastoma, there’s new hope for a more accurate method of detecting cancer. And I’m sure the test will be applied to children as well. I’ll be keeping a close eye on progress in the months to come.

Retinoblastoma is well recognised as a curable eye cancer in children. Early diagnosis and a variety of treatment options ensures the saving of lives and sight.

But this is only in developed countries. According to a UK charity Daisy’s Eye Cancer Fund there is a less than twenty percent cure rate in under-developed countries, as compared to a ninety-six percent cure rate in the UK.

Daisy’s Eye Cancer Fund is a retinoblastoma charity with a difference. It’s aim is to prevent deaths from retinoblastoma in all countries of the world.

The international charity under a different name was founded in 2004 by the parents of a child with retinoblastoma in the UK who needed to travel to Canada for treatment. In 2006, Abby White, a bilateral retinoblastoma survivor working in Kenya at the time, became involved when she received an email from parents of a child in Botswana who urgently needed treatment. The charity assisted Rati and her parents to travel to Canada for treatment. Sadly, Rati did not survive. Rati’s death highlighted the need for relevant resources, education and services to be made available to countries such as Africa.

Daisy’s Eye Cancer Fund focuses on research, education and training for health care clinic workers and families in under-developed countries, as well as providing financial and logistical support to families where local resources do not exist. There are many reasons for the high death rates in these countries. They include a lack of awareness amongst health care clinic workers and families about the need to closely monitor a child after treatment; the expense of treatment and hospitalisation; and the lack of access to medicines.

The charity is based in the UK and Canada, and has Dr Brenda Gallie’s support. Dr Gallie is a retinoblastoma specialist and has interests in the global treatment of the disease.

The site also includes fact sheets on retinoblastoma. Have a look around. It is a much needed resource.

Researchers are always looking for a non-toxic treatment for retinoblastoma, one that goes directly to the tumours and acts on them, rather than on other normal cells. This is because treatments such as radiotherapy and chemotherapy have sometimes significant side effects.

A recent article in the journal Eye, described some possibly exciting news about a treatment that does just this. It’s an extract from a particular tree bark that only requires low doses to effectively make the tumour cells “commit suicide”. It’s a treatment that targets the tumour cells, but at this stage, of course, there isn’t enough evidence to determine its toxicity.

Retinoblastoma is not the only cancer that this treatment may be used for. Researchers are hoping it can work on other specific cancers, such as breast cancer.

You can read more here

It is in the early stages and requires more testing, but at least there is some hope for a better treatment of Retinoblastoma in the future.