FAQ - neuroblastoma
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In the diagnosis for neuroblastoma, why should a tissue sample be taken?

Besides the urine, blood, and imaging tests, why should the tissue test be taken? What does tissue show if an individual possibly has neuroblastoma?

Until a sample is taken to absolutely, without a doubt verify it is neuroblastoma....You can not be sure what type of Chemotherapy to give. Different Chemotherapy for different types of cancer. Each cancer acts (grows, multiplies) differently.  (+ info)

What is the surgical process to remove Neuroblastoma?

What is the surgical process,

and the procedures done while removing neuroblastoma

Depends on location of the tumor. Most are stemming from adrenal gland. Depending on size they use chemo (up to 5 rounds) to shrink and collapse vascular structure and then remove. There are 2 leading surgeons in the US for this. Dr Michael Laquaglia at Memorial Sloan Kettering and Dr Robert Schamberger at Boston Childrens. Shamberger trained laquaglia and people come from all over to have them treat their kids.

Treatment depending on staging of disease is chemo 4-6 rounds, surgery, stem cell transplant, local radiation, antibody treatment, and biotherapy.  (+ info)

Anyone know of a child with Neuroblastoma?

I volunteer with kids that have cancer. This little girl has been fighting for her life since age 6, she is 12 now. Her cancer has come and gone 4 times now, she has stage 4. Her mom said right now Chemo just buys her time, do you know anyone that has survived Neuroblastoma?

Am sorry to hear she has this....I am surprised to be honest with you she has lived this long with it even with the advancement of treatments now.
My Mom managed to live 2 years with neuroblastoma multiforme and at that time it was unheard of in her protocol for one to live that long. I will add her to my prayer list  (+ info)

Ive just lost my Grandaughter to Neuroblastoma and im not coping or grieving WHY?

Hi ive been on here before when iwas told that my little princess was diagnosed with terminal neuroblastoma .We lost her on the 7th of Oct and i was with her .I saw her die saw her buried but still cannot believe or take it in .

I think you got some good answers
about what you are feeling now. I looked at some of them and they are right on.
You need to know that your feelings--or lack of them right now are normal. To lose a granddaughter is so devastating
as to be completely incomprehensible
to anyone but the hardest of hearts.
If you granddaughter could talk to you
she woulde tell you she loves you. Keep you eyes open for a sign from her.
God bless,
prayers for you and granddaughter  (+ info)

Have you or do you know a survivor of neuroblastoma?

My 6-year-old son has just been diagnosed and I can't find any adult survivors of neuroblastoma who were diagnosed over the age of 18 months.

So sorry to hear this . . you might want to join an online support group for Neuroblastoma for parents and caregivers . . they can probably answer questions better than anyone here as well as share stories, information, and resources.

Best to you:

The Neuroblastoma (Cancer) Online Support Group

Neuroblastoma Directory
http://www.dmoz.org/Health/Conditions_and_Diseases/Cancer/Brain_and_CNS/Neuroblastoma/  (+ info)

what are the chances of a 13 year old surviving stage 4 neuroblastoma?

a younger student at my school that everyone loves was diagnosed in March, and we're all scared to death and praying, but i'm just curious what the chances are. Just so I can know, i'm really curious now since such a close friend has it.

Survival will depend on many different factors . . the location of disease, the patients overall health, first response to treatment, and whether the patient is being treated by a pediatric oncology team with a great deal of experience with this type of cancer.

It is impossible to predict what will happen to an individual. What you need to hold onto is that there are survivors of stage 4 neuroblastoma . .and that is all you need to know.

I would suggest that the parents of this child join an email group where other parents share information and resources about neuroblastoma and treatment options:

ACOR: The Neuroblastoma (Cancer) Online Support Group

NCI: Patient information about neuroblastoma

MSKCC: Neuroblastoma

Neuroblastoma Childrens Cancer Society

Incidentally . . the majority of children and adolescents diagnosed with cancer are already stage IV . . it is very common.  (+ info)

does anyone know a link with neuroblastoma and infant seizures my son was recently diagnosed with both?

I have a 10 mo old baby boy who was healthy untill sun when he had his first seizure... went to er happened again on tues that is when they found the mass in his chest he had surgery fri to remove the tumor and now today he has had 3 more seizures ... can anyone give me tips or has anyone gone through something like this before .. I am so lost .. looking anywhere for help!

This is an infrequent and quite serious condition. Few except neurology ward hospital staff and the physicians there will be acquainted with care, let alone well acquainted.

Further, each case is not likely to completely resemble another case. Seizures are common.

There should be some neurologist or neurosurgery specialist already associated with this case.

You can check with that expert, and the more experience the better, as to handling current events.

Also as to likely outcomes in the event conditions worsen.

Bear in mind, you want the child to endure the least suffering possible.

Options are constricted by law too.

There are some states where that may not apply: perhaps Oregon.

So a long, frightful period of suffering could be avoided. This should be a Medical Decision with Parental Approval. But there is no indication this applies to your situation yet.

Whatever, you need reliable advice from the Specialists mentioned.

On the plus side, the tumor has been removed. There is some possibility of slow regrowth.

The seizures in this instance could be indicative of post-operative nerve irritability. Possibly only reflecting the healing process beginning.

It is time to watch carefully and to see how things develop. Keep your doctor informed, and that should be the neurosurgery specialist and/or neurology specialist involved.

Keep them well informed of trends -- things improving, or things getting worse.

Our prayers are with you and your baby.

Everyone who wants to help should pray for your child, the more the better.

Isn't this baby in the hospital? Is the baby at home (hard to believe)?

The most you can do for your baby is to ask for others to pray for the child's healing.

There is body - mind - spirit involved in every human. Even medical workers learn all three -- with experience.

So, I am seriously looking to the best results and best help for you, even though knowing this is a very serious case.

Pray works in many instances, especially where large numbers are involved.

You could ask church groups to help, appoint a choice of times to pray, morning, afternoon, evening.

Probably leave flyers with Minister to hand out to those who feel they can help.

We can only do our best here, and then we must be satisfied with that.

God does not hold us at fault for what we cannot do, much less what we cannot yet do.

So, get the best from the neuro-specialist and from God.

Add your own love, see it flowing into the child.

Some will pray for your baby just from seeing Yahoo Answers.

No matter what happens, your baby will not be lost forever, or will heal and enjoy a good life.

Lost children are resurrected when the parent arrives above. When no parent arrives, they are cared for by others. They do the best there as well, but still pray.

If baby is at home and turns blue during seizure or anything similarly grave, should be taken to hospital. I would think this baby should be in hospital now, at least three days, to see how things progress. Things so variable, a helpful link doubtful. My best here, I will pray too.  (+ info)

Does anyone know of a good treatment for Neuroblastoma for a 12 yr. old girl?

There is this little girl I know who has been fighting cancer since she was 6 yrs old and is now 12 in stage 4 cancer. It is bad. It always goes away and comes back. Does anyone know of anyone who can help or treatments that will help her live?

Neuroblastoma is a difficult cancer to treat. I highly recommend she seek a consult with the doctors at St Jude Children's Research Hospital in Memphis, TN. There are no concerns about insurance or expenses, they cover all medical costs, medications, etc... and even travel and lodging for the patient and 1 parent. They have a lot of experience in dealing with difficult to treat cancers and are able to use treatments that are not available at regular (non-research) hospitals. They don't accept everyone, the patient has to fit into certain levels of need (medically, not financially) but it is worth a try!!! My son is here for treatment right now for MDS (bone marrow cancer) and it is an amazing place. http://stjude.org/  (+ info)

Will you pray for this little boy with neuroblastoma?


He had neuroblastoma, and very recently relapsed with a brain tumor and had major surgery. They are waiting on the pathology report, but they don't know how things will go.

You know with all the junk, spam, and cons out there I suspected this was one as well. And since it isn't done in the way of a question I was ready to push the abuse button. But it appears to be a righteous story and I hope others will go to the site and see for themselves.  (+ info)

What are the long and short side effects for Neuroblastoma?

Short side effects are standard for anyone else going through chemo. Long term depend on the treatment (which is determined by staging, DNA polidy, nmyc gene amplification, childs age etc). for standard stage iv (majority of diagnoses) treatment, the long term side effects are treatment related as its a very harsh treatment of high dose chemo, radiation, surgery, and usually stem cell transplant. So , stunted growth, hearing loss, hypothyroidism, cardiac disfuction, sterility and all the other fun ones. Check out www.nbhope.org for more information on what to expect.  (+ info)

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