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!
There are lots of reasons to seek a second opinion.
Here are a few:
- Some doctors may favor one treatment approach, while others might suggest a different combination of treatments.
- Doctors in each oncology specialty bring different training and perspectives to cancer treatment planning.
- Another doctor’s opinion may change the diagnosis or reveal a treatment
your first doctor was not aware of. - You need to hear arguments for all of your treatment options.
- Childhood cancer diagnosis could be a tricky thing, especially if it’s a sarcoma or any other soft tissue cancer.
- Diagnosis does not relate only to type (which in some cases be more than one), but also to other parameters such as grade etc.
- A second opinion is also a way to make sure your pathology diagnosis and staging are accurate,
and that you are aware of clinical trials that you might want to consider.
ALWAYS insist on getting a second opinion in order to save unnecessary treatments.
You should know that any good oncologist would welcome a second and even a third opinion.
Dr. Norbert Liebsch from Mass General Proton is known to consult over the phone if you pre-send them scans.
http://www.protonsforkids.org/
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
in brain tumors in children which can not / should not be treated with radiation therapy.
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
That being said, there is a growing number of patients who have gotten good results
with alternative treatment strategies, such as Protontheraphy and even chemotherapy.
Contact MyChild’sCancer in order to get introduced to patients who have been there and done that.
Three (3) years is the minimum age for radiation treatment in Israel.
This means that there is very little experience in radiation children under this age even if a decision was made to radiate before that age.
If you live in Israel or any other country with a similar protocol and your child’s cancer requires radiation therapy, consider treatment abroad where experience in such a crucial treatment exists.
- You want to be able to have a meaningful conversation with your doctor and to be able to ask the right questions.
- Even the best doctor can not know all the new things that are happenning around the world in regards to your child’s disease.
- 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.
The child is radioactive after the infusion so you cannot be with him for about one week.
If you have a little child that doesn’t know how to keep himself busy (playing by himself or using an iPad for example) and you are about to do an MIBG therapy, teach him how to do so.
It will help pass the time during the week long isolation from his parents.
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.
