This blog post is dedicated to Katy
and her son Owen. Katy is a very passionate campaigner after Owen was diagnosed
with Retinoblastoma and she has really made some excellent progress when it
comes to raising awareness of this cancer type.
On average, the UK sees around forty
cases of retinoblastoma in a year. Most of these cases are found in children
under five years of age but it can affect children of any age.
Retinoblastoma is a tumour that occurs
in the light sensitive lining of the eye called the retina. There are two types
of retinoblastoma:
*A non heritable form where the
cancer is unilateral (only affects one eye). The cause of this type is still
unknown as yet.
*A heritable form where the cancer is
bilateral (affecting both eyes). In some cases it can only affect one eye as
well though. This type account for two in every five cases of retinoblastoma
and is caused by a gene abnormality which has allowed the tumour to develop.
This can be inherited form a parent or occur at an early stage of development
whilst the child is still in the womb. This gene is known as Rb and people with
this have an increased risk of developing another cancer type later in life.
Genetic counselling is available for people who have retinoblastoma in their
family. Not all children born to parents with this gene will be affected but
should be checked for it anyway.
Some children with retinoblastoma will
not have any symptoms and it is usually picked up by screening of children with
family history of the condition. However, a symptom of retinoblastoma is a
white pupil which does not reflect light. This can be detected in photographs
using flash as the affected eye will look white in the photo. Some children
with retinoblastoma have a squint whilst larger tumours can cause painful red
eye.
Tests to diagnose retinoblastoma can
be done under anesthetic and an ophthalmologist will examine the eye. Unlike
most cancers, retinoblastoma can be diagnosed on sight, by their appearance. A
biopsy is normally unnecessary. Examinations under anesthetic will be used to
monitor treatment progress. Ultrasound scans, MRI, lumbar puncture and blood
tests may be used to help diagnose the condition and stage the tumour.
There are two stages commonly used for
retinoblastoma:
*intraocular retinoblastoma – cancer is
in one or both eyes but has not begun to spread to other parts of the eye or
surrounding tissue.
*extraocular retinoblastoma – the cancer
has spread beyond the eye to surrounding tissue or to other parts of the body.
Treatment for retinoblastoma will
depend on the size, position and stage of the cancer. Treatment is used to
primarily remove the cancer but to also try and preserve sight in the affected
eye, although some children sadly do lose some of their sight.
Smaller tumours can usually be treated
with cryotherapy, laser therapy, plaque or thermotherapy.
Larger tumours are usually treated
with chemotherapy, radiotherapy and/or surgery. If the tumour is really large
and vision has been lost then an operation called enucleation may be used to
remove the eye and replace it with a prosthesis.
Retinoblastoma is a very horrible form
of cancer that targets children. I’m very glad to know there are people like
Katy fighting very hard to provide ways to prevent, treat and cure this
horrific type of cancer.
My heart goes out to anyone watching
their child suffer from retinoblastoma, what brave children they are.
xxxx
Respected Sir / Madam,
ReplyDeleteI'm a parent of a child with Retinoblastoma in India. Abigail Wagh, my only daughter, was diagnosed with Group D unilateral RB on 23rd May 2020. She underwent 06 cycles of chemotherapy and several EUAs, Cryotherapy and MRI Scans. She eventually underwent enucleation on 22nd October 2020. As parents, we have experienced the pain and suffering of not just our daughter but also of those parents of children that did not make it. We are on a mission to ensure that Abigail’s Testimony reaches out to everyone, and which gives them a glimmer of hope and not just save the sight but also save a child’s life.
Being a Nurse myself, I perceived that there was a dire need to educate others around us regarding RB, especially as it goes undetected, often being recognized at the very end. We began Community Awareness with a Radio Program and Podcast:
https://youtu.be/9uMSNdip-rQ , https://youtu.be/kVbgHI13KoY
We were able to spread awareness on Retinoblastoma with a Webinar on 13th September 2020 for Doctors all over India.
https://youtu.be/5nCGBXTWG-Y and On World Sight Day, 8th October 2020, We organized an International Webinar on Eye Cancer Awareness which brought in over 400 Nurses and Optometrists as Participants from all over the world.
https://youtu.be/371N0AfP8J0
We teamed up with Know the Glow USA (https://knowtheglow.org/) and began working on Five Key areas such as Awareness, Screening, Appropriate Referral, White Eye (Leukocoria) Assessment, Low Vision Management and Ocular Prosthesis as Focus Vision 5
https://www.facebook.com/FocusV5/
Understanding the need of support among survivors and families of children with RB, We started a Support Group and Organized Virtual RB Survivors Meet in India to showcase inspirational stories of RB Survivors, Discuss on Genetic Factors, Counselling, expression of talents and story sessions for children.
fb.me/prayersforabigailwagh
Abigail (@abigailwagh) • Instagram photos and videos https://www.instagram.com/abigailwagh/
I have represented myself as a Parent from INDIA as a Panelist in the Global Glow Panel (Retinoblastoma Around the World) at the World Eye Cancer HOPE (WECHOPE) One Rb World Conference held on 1-3, October 2021 https://wechope.org/onerbworld/
Looking forward to a fruitful interaction on Rb Awareness and the best ways to take forward the message to ensure no child is undiagnosed and untreated.
Thanks,
Larry