Aggressive Fibromatosis Rare? Tumor. Please help.

[AFTO80]

Hi everyone. Honestly, I don't even know where to begin, but, here's a start. I am hoping someone can help me out in any way they can.

Two years ago, I was diagnosed with a grapefruit sized tumor on my hip area. It was growing from my upper gluteus medius and pushing its way towards my hip. You couldn't tell it was as big as it was visibly.

I had the tumor excised and then I had brachytherapy/local radiation on the site.

I am now 28. Last month, it was discovered the the tumor was regrowing. It is currently less than 3 inches in size.

My options given to me by my surgeon were:

1-Light Chemo

2-Removal of tumor and a possible muscle graft

I called Sloan/Kettering for a second opinion and they flat out stated that they could not help me unless I paid them the consultation fee upfront. I told them I could pay in installments, but not in full at the moment, since I am unemployed.

The company I worked for downsized and I opted not take COBRA; I am currently paying for my own insurance because the premium was cheaper. I have Atlantis HMO.

For the last 6 months I've been actively seeking work, without much luck.

If I choose to get surgery and am not employed by that time, Unemployment wont cover me for the 6-8 weeks I will need to recover from the surgery--that's what the representative I spoke with told me.

So I am wondering why I am getting the door shut on my face so much, and if any one has experienced this as well. I would like to know how to proceed in order to get the help I need. I don't know what to do!

Also, if anyone knows where I can go to find out about alternative treatment options for the tumor I have.

Thank you so much for anything you can do, and for hearing me out.

All the best to all.

[brainman]

Hi AFTO80. I am very sorry about your health concerns and unemployment. Since I do not know anything about Fibromatosis, I will not be able to help you muck. Is the tumor malignant?

You are in my thoughts and prayers.

[AFTO80]

Hi AFTO80. I am very sorry about your health concerns and unemployment. Since I do not know anything about Fibromatosis, I will not be able to help you muck. Is the tumor malignant?

You are in my thoughts and prayers.

No it is not malignant, and apparently my tumor type is rare. I keep hearing figures between 1% and 10% regarding my issue. There is not a lot of research on it, so, my surgeon, his team, and I are sort of developing the statistics as we go. However, fibromatosis is common in other forms, just not in mine apparently. I wasn't born with the condition, and I can't recall having trauma to my glute/hip area for it to cause scar tissue to go haywire.

What my tumor does is that as it grows, whatever it touches becomes part of it. It sort of "petrifies" anything it wants. It has a mind of its own; it is simply regarded as a non-fatal "nuisance."

The condition also confuses me because it is not malignant, but the treatments for it are the same as for malignancies.

The only thing about being unemployed that is frustrating for me is that unemployment won't cover me for the period of time I will be recovering from surgery. So, I better find a job before July! And one that will be understanding of the fact that I will either have to work from home for 6-8 weeks, or be on medical leave for that time, after having been employed with them for a short period of time.

I can pay for whatever my insurance doesn't cover, but in installments. I'm confused as to why Sloan/Kettering shut me down so quickly. I am wondering if there are any types of loans or financial aids that I can turn to regarding my situation, or if there are certain people I need to speak with as opposed to just a customer service rep?

I am also wondering if anyone has ever heard of non hereditary, aggressive fibromatosis tumors on the hip/glute area, and of the treatments for it or anything related?

Also, if they might now doctors that can help out?

[trina]

HI, I am unable to help on the medical insurance issue, but do have a son who has aggressive fibromatosis (not heridiitry, no trauma to the area, and not born with it) it is in the upper thigh, hip area and has had 4 operations to remove numerous tumors. It is a long story but am happy to share any infomation and answer any questions that I can regarding options of treatment and why it is treated similar to malignant tumors, you can contact me directly at coochtrinz@ihug.co.nz.

All the best
Trina

[CLAIRECHESTERS]

I have been looking for information on fibromatosis in the hip area for ages and all i can ever find is plantar fibromatosis, juvenile fibromatosis etc.

I was diagnosed 2 years ago as having fibromatosis of my hip, a mass the size of a melon.

my consultant has reviewed this and believes it is not possible to do surgery as he feels that incision could cause more muscle damage and could leave me with no power in my leg, he has sent my details to another group of consultants and the report is that it is has not grown any bigger since first found, they do not feel surgery is approproiate, radiotherapy may damage more healthy cells as they grow faster than what the tumor and that currently i just have to live with it!

my leg has grown approx 2 inches in the last 2 years as the growth has pushed my bones down, i have pain in my knee, my shoe is raised and they are telling me they arent going to do anything about this.

i felt i had to just go with this but it sounds from other posters that surgery is possible!

should i be seeking another opinion?
i am in ireland and felt that maybe more advanced treatment was being carried out in america or australia.

as with others i was not born with this, i was in a car accident back in 2002 and had thought maybe the trauma made the scar tissue grow.