Desmoid Tumor Information

[anne2001]

I am a 27 year old mother of 3 who had a 6lb desmoid tumor removed last January from my hip (glute muscle) and now am in pain again - it is not gone!!!! I was wondering if anyone has or knows someone who has hot one! I need support and information! Ther is nothing about desmoids and because they are not Malignant and rare they are not included in support groups.

I have lots of scarring and loss of muscle (80% of my glute medious and 20% on the minimus as well as parts of the other muscles!) and have undergone PT to be able to walk normal - then over night Im back to not being able to walk - in pain all the time and scared that I will never be NORMAL again. I have 3 children under the age of 6 and I want to be a good mom - but I cant even carry my baby or walk to the bus stop to get my son! I cant push a shopping cart and my husband is afraid to touch me because it hurts me so bad.

Where do I find help?

[HELLASRULES]

Hi Anne
Are you saying the tumor is not gone?
Is it possible because of all the surgery and the area of the surgery, that the sciatic nerve is acting up? This can cause very bad pain from the butt area, all the way down the thigh. PT can help it though. With 3 small children I'm sure plenty of strain is put on your back during the day.
Are you dealing with army doctors solely or private doctors also. Not that it would make a difference. but with a rare benign tomor such as you had, I'd think private doctors would have more info and experience with that sort of thing.
For now, I would simply get examined and see what can be done to help the pain get better, and find out for certain what is causing the pain.
Sorry I have no experience with the dermoid tumors, just hate seeing a post go unanswered.

[anne2001]

i have an MRI on Thursday and I was referred today to a Neurologist that I will see next week. Im not sure it is back but the circumstances would suggest it is back. Desmoids have a high recurrence rate and when they removed it the first time they scraped it off the sciatic nerve as best they could without doind dammage - so it is very likely that is where it is comming back. I really was hoping to meet others whe have desmoids to ask about what they are doing/ who they are seeing for treatment. It is so rare antdthere is not much info about it and no support network!

Thank you for your reply. It is lonely and scary when no one knows what your body is doing or how to stop it!

Does anyone know where to find support groups! I know there are cancer groups but this in not quite cancer!

[lilsunshine46]

What is a desmoid? I will have to look this up. Are you seeinan Ortho Onc? Can you go to WHMC in San Antonio at Lackland AF Base. Ask to get a referrall to see the Ortho Onc dr there. He is my dr and is really good. I had a rare tumor also, Giant Cell and know what you are going thru.

Bonnie

[sueellen]

i was diagnosed with a desmoid tumor in my left chest wall in 2005, i had it removed along with 4 ribs and now it's back. i absolutely feel your pain (physically and emotionally). it's so hard to find a doctor out there, and to know what the best options are. my current doctor is at sloane-kettering and he basically feels to wait it out. but i'm in so much pain, we're going to try giving me shots in that area to deaden the nerves. my doctor seems to give me the impression i'll be dealing with this for the rest of my life and wants to avoid multiple surgeries. it's really hard to make him understand the fact that i'm in pain since i guess these tumors are generally considered painless.