Tag Archive for: second primary cancer

A baby has a squint - the right eye is rutned in towards the nose.

18 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

On the left of a large conference room, a speaker stands at a wooden podium, addressing the audience. David is a white man wearing a blue suit. Beside him, fellow panelists sit at a long table draped with a cloth bearing the One Rb World logo. A large screen displays key discussion points on Retinoblastoma Survivorship Care – bullet points are out of focus. The audience is seated at round tables with white tablecloths, attentively listening and watching both the panelists and screen. The room is decorated in dark wood paneling and large murals depicting natural landscapes.

Hawaii Says “ALOHA” to the 7th One Rb World Conference and Global Retinoblastoma Community

The shores of Waikiki Beach welcomed 175 guests to the 7th One Rb World conference this month, and more online, as Honolulu played host to this incredible meeting of retinoblastoma patients, survivors, families and medical professionals. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the social gathering and Day One of the program in the first installment of this three-part conference review.

Marissa wears a pistachio green sundress and smiles broadly. The background is a beach scene with blue ocean under a clear sky and people sitting in chairs under deep blue parasols.NYT Pic

Beyond Retinoblastoma: Celebrating Cancer Survivorship; Advocating Lifelong Care

At seventeen months old, Marissa Gonzalez was diagnosed with bilateral retinoblastoma – the first turning point in her lifelong journey with this cancer syndrome.  Today, as President of WE C Hope USA, she celebrates 32 years free from eye cancer, and shares the latest chapter of her cancer survivorship story, with two appeals to all in our community.

Bright lights reflect on the floor of a long, empty hospital corridor, with many open doors. The floor is painted pale green, the walls cream, and the doors a pale purple-blue periwinkle. At the end of the corridor, large double doors are painted dark green.

Living with the Retinoblastoma Cancer Syndrome Part 2: Risks, Impacts, Challenges and Opportunities

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.

Five creamy white tea light candles in cut crystal candle holders cast a warm glow in the darkness. The central candle holder is shaped like a lotus flower. Tiny points of colour at the base of each petal create a subtle rainbow effect throughout the glass that is very faintly reflected in the glass of the other candle holders, and in the light cast on the wood surface where they rest.

Living with the Retinoblastoma Cancer Syndrome Part 1: Understanding the Risks and Lifelong Care

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story.  In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.

A group of teenagers enjoy a game of volleyball on a sand court surrounded by trees, under a cloud-dusted blue sky.

When Survivors Grow Up: Family Experiences After Retinoblastoma

Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.

2. A baby plays with an anaesthetic mask, moving it over her mouth and nose ready to take deep breaths.

10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.