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St. Jude Children’s Research Hospital completed the first whole-genome sequencing of cancer survivors
and the conclusions where that 12% of childhood cancer survivors carry germline mutations that put them at increased risk of developing cancer later in life.

Researchers recommended expanding genetic screening and counseling to:

  • Childhood cancer survivors who have been diagnosed with second cancers and whose pediatric cancer treatment did not include radiation therapy.

  • Survivors whose initial treatment included radiation therapy and who have developed secondary breast cancer, thyroid cancer or sarcomas at the radiation treatment sites.

The findings will help to design personalized therapy, understand better the disease and early detection of second cancers based on the genetic profiles of children diagnosed with cancer.

In this video, Leslie Robison, chair of the St. Jude Department of Epidemiology and Cancer Control, discusses the genetic sequencing of St. Jude LIFE cohort of childhood cancer survivors and the implications of the project.

Also, researchers at the University of Michigan and C.S. Mott Children’s Hospital found that identifying mutations present in tumor tissue allows precision oncology to determine better treatment options for each patient using individualized genetic information.


In this video of Precision Oncology, we see Rajen Mody, MD explaining the importance of genetic sequencing for childhood cancer.

The Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center also offers individualized programs to reduce the risks of primary or secondary tumors. Here is the story of Amy Kindstedt a 9-year-old child diagnosed with pleuropulmonary blastoma (PPB), a rare tumor of the lung and how the genetic counseling helped her brother to an early detection and treatment of the same type of cancer.

These new methods are improving the survivor rates of kids with cancer.
The earlier its done the better chance of identifying the right therapy before they develop resistance and early detection of second cancers.

Ask your doctor for a referral to a genetic counselor.

What are the main signs and symptoms of Retinoblastoma? Find out in this short video.

In collaboration with Childhood Cancer International and the International Society of Paediatric Oncology, Union for International Cancer Control (UICC)
has spearheaded a campaign targeted at primary and community healthcare workers to raise awareness of early ‘Signs and Symptoms’ of childhood cancer.
As part of this campaign is a series of expert films narrated by doctors, a nurse, a cancer survivor and a parent to help improve early diagnosis of cancer,
particularly in low-income countries where need is greatest.

More often than not, doctors will focus on the medical side.
That’s their job.

They can’t REALLY get involved with what we parents go through at home
and they are not supposed to either.

You, the parents know your child best and what he wants and needs.

Treatment protocol is what it is – the drugs, the dosage etc. and not much we can do about that, but get involved and seek control where you can.

Don’t sit back if you are skeptical about something; ask questions no matter how much of an inconvenience it seems to be for your medical staff.

You are your child’s voice in all of this!

Why not get another opinion?

Dr. Norbert Liebsch from Mass General Proton is known to consult over the phone if you pre-send them scans.

Contact information:

Anne Brogan
Patient Care Coordinator
Pediatric Radiation Oncology
MassGeneral Hospital for Children
Francis H. Burr Proton Therapy Center Rm 107
55 Fruit Street
Boston, MA 02114
Phone: 617-724-1836
Fax: 617-724-4808

Dr. Jonathan Finlay, from Children’s Hospital of Los Angeles is an expert and a thought leader
in brain tumors in children which can not / should not be treated with radiation therapy.
From CHLA’s website:
Expert in treatment of children, adolescents and young adults with brain tumors, especially young children with treatment strategies that avoid radiotherapy; children with medulloblastoma; other PNET, germ cell tumors, ependymoma, gliomas (low grade and high grade) and choroid plexus carcinomas

Learning about your child’s disease is important for a couple of reasons:

  1. You want to be able to have a meaningful conversation with your doctor and to be able to ask the right questions.
  2. Even the best doctor can not know all the new things that are happenning around the world in regards to your child’s disease.
  3. Your child’s cancer may respond differently then other children to the same treatment protocol.

As parents we may never know as much as the doctors, but we must know enough to ask the right questions and understand the answers, in order to negotiate the best treatment for our child.

You, the parent, are the most passionate in this world about your child’s life.
It is YOUR responsibility to make sure all options are considered and that doctors look into
and discuss with you options that are out of their normal course of action.

If you can not learn about your child’s disease (time, language etc.) ask a family member
or a friend to do it for you and preferably have him/her attend the meetings with the doctors.

In case you have identified the best doctor in the world for your child, try to get yourself into his/her patient’s system by getting their second opinions at an early stage. In case you will need such a connection in the future, processes will be MUCH faster and easier when you already have a patient identification number with all the medical information already in their system.
If you travel abroad, use your time to meet with leading doctors face to face and establish your network for future needs.

Always think forward and prepare for future needs: in case there will be an escalation down the road, this will save your child precious time, save you the need to go through bureaucracy and will allow a direct channel of communication with the best doctor for your child.

Get a second opinion from Dr. Leonard Wexler from MSKCC.
Dr. Leonard Wexler is probably one of the most experienced doctors in the world in RhabdoMyoSarcoma.
Dr Wexler is a bone and soft tissue cancer specialist and is considered to be an opinion leader in this field.

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