question regarding agressive tumor growth

[imamum24]

Hi there,

It's been awhile since I've been on here. Our adopted daughter has NF1. Real quick background. We adopted her when she was 5. At age 6 we had her first MRI which showed a optic glioma on both optic nerves located near the chasm. It was discovered due to precocious puberty. She went through 13 months of chemo. We've had many struggles the past 10 years (she is now 16) with learning disabilities, speech, etc...but have done really well with the tumors...besides the giioma, just a couple of very small fibromas.

Last summer there was a fibroma which she had had on her wrist for many years, but all the sudden it began to grow and needed to be removed. Only the one tumor was felt, at the time of surgery 4 more had grown and all were removed. Then one formed on her leg, above her eye and just in the last couple of months there are just too many to count, along the rib cage, down the spine, all around her back, pelvic area, both legs, harms....etc...all are internal, but you can feel them when you mush around her skin. There are just numerous ones around her rib cage, some are growing quite aggressively...some are much larger and some are small. I think easily there are close to 100 or more.

We have a consult MOnday with a pediatric surgeon as the one near her eye needs to come out. My question is, for those who have gone through this type of thing, what does all this mean. Why are so many tumors, all internal, none on the outside of her skin, growing so quickly? I'm trying not to be alarmed, but it's really kind of frightening. I'm not sure what type they are, what organs they may be near....do I ask for a full body scan since they seem to be everywhere? Some of them seem to be causing some pain, especially the larger ones around her rib cage....how in the world can these be removed without cutting her all over. Is this something she just needs to cope with with pain meds....

For those who are going through this same type of tumor growth, I welcome your advice on what I need to be asking, what tests I should ask for, etc... This just sprang up so fast so I'm a bit worried as to what might be happening to her....

Thanks for your help and advice

[imamum24]

Still nobody has any info for me??? I wonder if it is just really rare for a 16 year old to be having so many tumors growing all at once. It just seems so rapid to me. Anyone else have a child going through this?

[Nathan]

Imamum I am sorry you haven't had any replies. Mine won't be much help as Nathan doesn't seem to have any real neurofibroma's that we can see or feel. Can I suggest that you repost on the adults page? A few years back there was quite a long thread about a similar topic to this. My understanding is that surgery isn't always the answer as the tumours under the skin seem to grow back.

Another option is to post on the Facebook page as this is quite active.

I am sorry that you are going through this.

Una in Oz

[imamum24]

Thank you for responding. I think my little girl is going to have a more extreme case. We were referred to Children's Hospital in our area and have our appt. made. Now we just wait. I guess I was just overwhelmed that so many were growing all at once. She continues to find new ones every day. All under the skin, none visible on the outside of her skin. There is another NF group where people replied so maybe this site just doesn't have as many people on it.