Li-Fraumeni Syndrome Support Group

Hi everyone,

Just wanted to introduce myself. I'm a 23-year old recent college grad with Li Fraumeni Syndrome. How wonderful that such an online support group exists!

Just to give a bit of background, I had my first cancer when I was 6 months old, and since then have had osteosarcoma, glioblastoma, and have relapsed from the osteosarcoma twice. I just found out about my most recent relapse from the osteo a few weeks ago and also found out that I have breast cancer (DCIS). I'm the only one in my family with LFS--they think I'm a new mutation.

Not really sure how this group works, but it sure feels less lonely to know that there are others out there who live with LFS and are fighting!

Welcome to the forum Jennia! I'm So sorry you have been through so much in your tender years. You are definitely not alone and you have come to the right place for support . Everyone calls me Shoonu (it's a long story). I know you probably have a lot of questiIons and concerns just like I had when I joined the forum. It helped me tremendously and I found answers to my questions, great advice, and also lots of support. Knowbody can support you like someone who has the same mutation. Many ask if you can grow old with LFS...yes, yes and yes. My mom is 75 years old. I am going to be 48 and I look and feel great. Yes I have scars, lots! My husband just picked up a bike for me so now I need to learn to ride and get a motorcycle endorsement. So LFS doesn't have to stop you. You sound pretty tuff yourself! That is a great, however at times we all have a need for understanding and support. When I first joined I was surprised by some of the life stories, they sounded exactly like my mine. It was the first time I understood what LFS is and I didn't feel so alone (although I don't wish this on anyone). I found tremendous help in finding doctors that can not only pronounce it correctly but know how to care for us . Honey, where do you live ? And may I ask what hospital you go to? I am at MD Anderson cancer center in Houston, TX as I'm writing from the hotel room . I had all my tests yesterday and will see a surgeon and my doctor today for results.

Again I want to welcome you and we are here to support you in anyway we can.

Shoonu

P.s. If you ever feel like you want to talk on the phone just private message me and I will give you my cell phone number.

Post edited by: shoonu, at: 04/12/2012 05:35 AM

Welcome to the group Jennie! You definitely aren't alone but it sounds like you have already had more than your share of battle. Please let us know how you are doing and anything you've learned or found that was helpful along the way!!

Hi Jennie,

Definitely not alone. You've had it tough but sound like you're still fighting. Welcome to the group.

Post edited by: pan, at: 04/12/2012 12:40 PM

Hi Jennie,

welcome to this group! We do have a lot in common. I am the only one with LFS in my entire family, too. De novo mutation.

I had osteosarcoma with 12, relapsed with lung metas with 14, breast cancer with 24, second breast cancer with 29 (3 month ago). You did survive a glioblastoma? It is my biggest fear to develop one.

It is only a few weeks ago that I have been tested positive. LFS is very new to me and I don't know yet how to live with it. I am trying to get back to my normal daily live but it is hard. Much harder than I expected.

Wishing you the very best...it is terrible that we need to be here...for all of us. But I am grateful to have this forum. I felt like an alien between all of the healthy people surrounding me (family, friends) long before I was diagnosed with LFS. It is good to know that there are people who understand.

Many regards from Germany,

Sonne

Welcome Jennie! Stay strong! You're not alone! Susan