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retinoblastoma survivors- secondary cancers?

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“Despite excellent survival rates among children treated for Rb, survivors with a germline mutation in their Rb1 gene (hereditary Rb) are prone to subsequent cancers including sarcomas, melanoma, and cancers of the brain and nasal cavity.

According to the research 90-95% of all cancer diagnoses are due to environmental factors. Further, a genetic “predisposition” to one type of cancer means only that a person has a slightly (percentage-wise) greater risk of one cancer or another.

All that being said, survivors of a rare pediatric cancer called retinoblastoma, have an increased risk for several other cancers. Keep in mind however, that a person, any person, can reduce his or her risks of a cancer diagnosis through evidence-based nutrition, supplementation, and other lifestyle therapies.

I am a long-term survivor of an “incurable” cancer and cancer coach. Are you an Rb survivor? Would you like to reduce your risk of secondary cancers? Please scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Research Publications from the Retinoblastoma Follow-Up Study

“Despite excellent survival rates among children treated for Rb, survivors with a germline mutation in their Rb1 gene (hereditary Rb) are prone to subsequent cancers including sarcomas, melanoma, and cancers of the brain and nasal cavity. Radiotherapy appears to increase the risk, suggesting a gene-environment interaction…”

After reading a National Cancer Institute study on the genetic predisposition of retinoblastoma survivors I asked a retinoblastoma Facebook group “Retinoblastoma Awareness” about their secondary cancers experiences. Compare research results to patient/caregiver experiences below.

February 2 at 12:56pm ·

Are retinoblastoma survivors genetically predisposed to other cancers?

  • Linda Yoakley Hi – my daughter was diagnosed with a mosaic version of RB last August and lost her right eye – but her life is saved. My understanding from the genetecist is yes, a slightly higher risk – she should never smoke, wear high sun factor and check any lumps or bumps out.
  • David Emerson Linda- thank you for this reply. I read a study that alluded to RB survivors being at a slightly increased risk for other cancers but I wanted to ask RB survivors/caregivers about it. Thank you-
  • Lisa Glass depends if the retinoblastoma is caused by the gene mutation or is herediatary. gene testing can asnwer this
  • Katie Brandt My husband is 31 and is a survivor of RB. He has had no other cancers since he finished treatment 30 years ago…
  • Linda Yoakley David. Not sure if you will see this now. I only saw your reply today! Sorry. I meant to also say, aside from the obvious of smoking, radiation is a no no too apparently. I’m sure this must be different to radiation given to treat RB but I was told to steer my daughter clear of radiation when possible. A genetecist could give you the official answer
  • Deb Lockwood Rogers Hi David, I am the mother of a 24 year old Bilateral RB survivor. I was never too concerned about other types of cancer until last month. My beautiful Daughter has been diagnoised with LM Sarcoma, directly related to her RB and the radiation she had. This is an extremely rare cancer so I am not trying to scare anyone but it does happen. This was not something that I ever could have expected. She is under going Chemo at this time. We are praying for a good outcome. God Bless!

 

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3 comments
Myeloma- Risk of Secondary Cancer - PeopleBeatingCancer says last year

[…] Are retinoblastoma survivors genetically predisposed to secondary cancers? […]

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White glow? Pink eye? Red eye? Consider Retinoblastoma- PeopleBeatingCancer says 3 years ago

[…] Are retinoblastoma survivors genetically predisposed to secondary cancers? […]

Reply
demerson says 10 years ago

The study linked below explains that "Lisa's" answer from the Facebook exchange is right on- "Lisa Glass depends if the retinoblastoma is caused by the gene mutation or is herediatary. gene testing can asnwer this…"

Thank you Lisa-

Retinoblastoma not linked solely to RB1 mutations, study finds

"Some cases of retinoblastoma may occur due to amplification of the MYCN oncogene rather than mutation of both alleles of the RB1 retinoblastoma suppressor gene, a study found.

In such nonhereditary cases, children may not be at heightened risk of retinoblastomas in the other eye, future cancers or further familial risk, the study authors wrote.

Researchers in the multicenter study analyzed 1,068 unilateral non-familial retinoblastoma tumors, comparing genomic copy number, RB1 gene expression and protein function, retinal gene expression, histological features and clinical data between tumors with no evidence of RB1 mutations and those with mutations in both alleles.

 No RB1 mutations were observed in 29 tumors (2.7%), and 15 of those demonstrated high-level MYCN oncogene amplification.

http://www.healio.com/ophthalmology/retina-vitreous/news/print/ocular-surgery-news/%7B43160F01-6F8B-4213-B78C-C3B72A3C72F2%7D/Retinoblastoma-not-linked-solely-to-iRB1i-mutations-study-finds

Characterisation of retinoblastomas without RB1 mutations: genomic, gene expression, and clinical studies

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2813%2970045-7/fulltext

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