neuroblastoma

galway

Hi all.  I've posted here before about some birth defects my 14 month has....but now we've been thrown a new curveball with a neuroblastoma diagnosis.  After 6 long weeks, he's had surgery to remove the tumor, pathology determined it was neuroblastoma, but luckily bone scan and bone marrow biopsy have determined it has not spread.  So it's Stage 1.  No further treatment required right now.  Guess I'm just wondering if anyone else has experience with this type of neuroblastoma.  I know so many cases are worse, but I haven't found much about Stage 1.  He'll be scanned every 3 months for a while, but I'm wondering if anyone has had this stage and had a recurrence.  the surgeon indicated there was a 10 percent chance of this....Guess I"m just looking for others who have been in the same boat.

thanks!

Sharon21

First I would like to tell you how sorry I am that you have to deal with this. My mother has had a Glioblastoma which has been very difficult for our family but I cannot even begin to imagine what it is like to have a child dealing with this. 

My mother's brain tumor originally occurred 27 years ago. I am not sure what the exact pathology was then (I wasn't born yet and her records from then were lost). I know that it was cancerous and she had surgery and radiation. Then after being in remission for 26 years her tumor came back last year. We found out it was back the day after I found out I was pregnant with LO. She had surgery and when we got the pathology report back it was a Glioblastoma which is stage 4. The statistics for this type is less than 1% chance of survival one year after diagnosis. It has been one year and two months and she just finished chemo. While the doctors aren't using the term "remission" with her there is no sign of the tumor! The doctors tell use that it will be back they are just not sure when.

I think it is a good thing if there is only a 10% chance for it to return. To be honest there is probably about the same chance that you or I or anyone else would get a brain tumor. So I think those odds are good. Having someone you love have a brain tumor will change you. You will always worry about it returning no matter what the statistics are but try not to let the worry consume you. It is something that you cannot control.

I am not sure why they bothered to do the bone scan or bone marrow biopsy (which is really painful right?). From my understanding the silver lining to brain cancer is that it doesn't really spread to other parts of the body. Cancer is quite happy in the brain because of the blood supply there and has no need to travel. I think it also has something to do with the blood brain barrier which doesn't allow it to spread. 

I am glad your LO is doing well and hope he continues to do so!  

realisticdreams

Sharon21:

First I would like to tell you how sorry I am that you have to deal with this. My mother has had a Glioblastoma which has been very difficult for our family but I cannot even begin to imagine what it is like to have a child dealing with this. 

My mother's brain tumor originally occurred 27 years ago. I am not sure what the exact pathology was then (I wasn't born yet and her records from then were lost). I know that it was cancerous and she had surgery and radiation. Then after being in remission for 26 years her tumor came back last year. We found out it was back the day after I found out I was pregnant with LO. She had surgery and when we got the pathology report back it was a Glioblastoma which is stage 4. The statistics for this type is less than 1% chance of survival one year after diagnosis. It has been one year and two months and she just finished chemo. While the doctors aren't using the term "remission" with her there is no sign of the tumor! The doctors tell use that it will be back they are just not sure when.

I think it is a good thing if there is only a 10% chance for it to return. To be honest there is probably about the same chance that you or I or anyone else would get a brain tumor. So I think those odds are good. Having someone you love have a brain tumor will change you. You will always worry about it returning no matter what the statistics are but try not to let the worry consume you. It is something that you cannot control.

I am not sure why they bothered to do the bone scan or bone marrow biopsy (which is really painful right?). From my understanding the silver lining to brain cancer is that it doesn't really spread to other parts of the body. Cancer is quite happy in the brain because of the blood supply there and has no need to travel. I think it also has something to do with the blood brain barrier which doesn't allow it to spread. 

I am glad your LO is doing well and hope he continues to do so!  

I just wanted to add I think some neuroblastomas are in the abdomen..because they thought Morgan's mass was possibly one with her recurrent fevers/infections/etc.

I'm so sorry you are dealing with this, I know of a couple blogs whose LO's have similar dx but I don't have time to look at them right now.

You might try googling blogspot.com & neuroblastoma or something to that effect.

We have a 20% chance of Peyton's cord re-tethering and requiring spinal surgery again, so I think 10% is a fairly low recurrent rate.   

ToastieSimons

https://alexandcassie.blogspot.com/

their son Sam has neuroblastoma, (Grade 4 I think?) it may be good to get in contact with her and maybe she knows of someone in your situation?

Sharon21

I am sorry, I thought that neuroblastoma was a brain tumor. That is why I asked about the bone scan and such. I remember coming across the word neuroblastoma when I was doing research about my mothers cancer and I thought it was the stage 1 form but that is astrocytoma. All these terms are so long it gets confusing sometimes. I still wish you the best of luck! 

angeltwin222

I just wanted to send you big hugs.  I am very glad to hear it's only stage one.  My daughter has stage three rhabdomyosarcoma.  She is on week 26 of 54 for chemo.  She had 28 radiation treatments along with multiple surgeries.  If you end up needing further treatment, I know a couple of neuroblastoma families that would be happy to talk to you.