Li-Fraumeni Syndrome Support Group

Hello everyone, I feel so lucky to have found this group. Now if I can only figure out how it works.

Anyway, a little about why I'm here. In 1994 my husband and many of his family members were tested for LFS. Some were negative thank goodness, but my husband was positive. He never wanted to have our 4 kids tested because he didn't think I could handle it, but now I am here without him. He passed away in December at the age of 40. My fears now are with the health of my children. I keep reading knowledge is power, so I feel I should have the kids tested. My oldest is 12 and she has been having issues with her stomach and back and I am pushing for an ultrasound. I think if she was tested and negative for LFS I wouldn't be so panicked about this, but I just don't know and I can't take a chance.

So I am really interested to hear your stories on testing young children. Pros, cons, anything.

Thanks for taking the time to read this.

-Becky

I am so terribly sorry for your loss! My sister in law lost her husband when her son was two years old. We have just found out this year that my family has LFS. My brother was not tested, but it is assumed that he had it as well when he died. My sister-in-law always had the fear that there might be genetic problem. She had constant fear for her only child. So allthough she did not know about LFS she was still in fear of something because of the numerous cancers in my family. Knowing that there is a possibility of the children having it as well is an awful burden. A parent worries about their child when they get sick with anything. Having your children tested is a very personal thing. Some on this forum have wanted their children tested and others have not. The hardest phone call I ever made was to my sister in law telling her of LFS. She was stunned but glad to know that there was a reason for all the sadness. She discussed it with my nephew (now 19) and he wanted to be tested. We are still waiting for the results. Your daughter is at an age when she will understand what is going on. Each child reacts differently. You may or may not want to tell her when she is at such a tender age.

I'm sure that other parents on this forum will give you their imput soon.

Please be assured that whatever you decide we are here to support you. Also, not everyone who has LFS develops cancer. My mom has LFS and had cancer once, was operated and is fine. She is in her 70's!

You have come to a wonderful place for support, valuable Information, or even just to vent!. I have been helped so much on this forum to understand LFS, to cope , and yes, even to vent. I know I'm understood!

We are all here to support you!

Shoonu

Post edited by: shoonu, at: 07/28/2010 07:06 AM

Hey hon. I'm so so sorry for your loss. I'm glad you found us.

I was just reading a discussion on a European LFS site discussing this. LFS is so different than BRCA or other genetic mutations because so many of the people who have develop cancer BEFORE age 18, yet the standards don't recommend testing until age 18. UGH.

Personally, I would follow the standard protocol for annual screenings for your children as if they did have it. And then demand immediate attention for anything unusual that pops up. It's tough to learn to balance between being aware and being freaked out over every lump and bump, but it is doable!!!

I didn't find out about our LFS until WAY after my son and I had cancer. But, because I had just gotten done with treatment when we found my son's lump...we didn't mess around. You know what's normal for your kiddos. Do you have a doc that is above par and at all familiar with LFS?

Like Shoonu said...we are all here to support you.

Hi Becky,

I’m so sorry for your loss; it is so unfair that something so rare as LFS has to chose our families. I’ll share with you my short stories and experiences in hopes of adding just a little more for you.

My late father and brother had LFS as well as do I. My sister was never tested as she never wanted to be. She has two children who I don’t believe she cares to have tested, but luckily for her and her kids, they have all been cancer free. My late brother has a now 9 year old daughter who has never been tested. Before he died, they decided not to test her as they didn’t want to live in fear for every little bump and bruise she got in life. Now that he has passed I think her mom is reconsidering having her tested. This decision is so very personal and there is no right or wrong one.

I have 3 year old twins which I have not had tested. The decision to have them tested is still undecided between me and my wife. So I guess I am kind of in a similar decision making boat as you are right now. My kids are healthy, knock on wood, and hopefully stay that way forever. But at some point we need to think about this, the decision is so hard I can truly relate.

I hope with all the stories and feedback received here at this group, you can work on making an intelligent decision for your and your family. Like I said, it is a very personal decision whether or not to be tested, and there is no right or wrong decision. Please feel welcomed as a part of this group and feel free to turn to us all for support; that’s what we’re here for, to help each other.

John

Hi Becky, I'm so sorry to hear of your loss too. I can only imagine what you must be going through. My husband has LFS too and has had 3 cancers in the last five years and may have cancer on his kidney now...so I worry about losing him. I put it out of my mind as much as possible because there's no sense ruining my present time with him by wasting time projecting what might happen in the future.

About testing your children...we chose not to test our children until recently. My daughter needed a stem cell transplant. That kind of forced the issue, and we tested then to see if the other kids would be a good candidate for donor. It's a complicated decision. For me, I chose just to carefully watch the children and if anything came up we did more agressive testing than a normal family might do. Our philosophy is to treat each new lump, bump, etc. as if it is cancer until proven otherwise. I don't panic about it, we just test more agressively. My oldest son is the only one who hasn't been tested for LFS but will be soon. We already knew he wasn't a match for our daughter since he was tested years ago for his brother's bone marrow transplant. So far 4 out of our 5 children have LFS. Our oldest is the only unknown. He worries about it, I know. He has become a vegan because he feels avoiding animal protein may protect him against some cancers. Like the others have said, you really can't make a wrong decision.

We're here for you.

~Kim

I am very sorry you lost your husband. I know I don't know how you feel. Still that is a scenario I myself, as a husband, have feared since I was diagnosed. My deepest sympathy.

Knowledge can be power but it can also be pain. Chances are that some of your kids don't have LFS and some of them do. Through that knowledge you can get better contacts to doctors who know what they are doing and what they are dealing with. Also right now you are worrying for four children - maybe in the future you can worry for a lesser amount (even zero, if one is allowed to hope).

However, this knowledge comes with a price. Growing up with LFS is socially not-so-great, to say the least. It's harder to make social contacts, date and all that. When is the right time to tell you boyfriend/girlfriend, for example, that you are likely to have cancer? You tell to early, you spook them away. You tell too late, you have been dishonest.

There are no easy answers. The hard part is that you are making these choices for your children and they may blame you later for making them. They may also blame you for not making them.

Either way, there are pros and cons involved in both of them. I would personally take the information. I would justify it because I'd think my need to protect my children's life is greater than everything else. Though, at the same time, one can be diagnosed with LFS and be pained by the knowledge through a healthy life with no cancer. Then again, I'd think the 50/50 looming over your head can be equally painful?

Whatever decision you make, only you know the situation and what is best. Make a decision and stick to it. No looking back.

Post edited by: Dexma, at: 09/18/2010 01:42 AM

Hi Becky- sorry for the late reply- I have a tough time navigating this site. I have 4 kids(11,9,5,4), all were tested to facilitate Preventative screening. My husband is in the military so we don't have a lot of the civilian health insurance issues. It's a tough call. I go in cycles of being so worried I can't sleep at night to taking it as it comes. I think you ultimately do the best you can. If testing means getting the preventative screening they need- it's worth it. If testing means losing health care coverage- it's not worth it. Knowing the signs and symptoms of the common cancers of the syndrome and also having a detailed family history for appointments helps. You must navigate the healthcare system and if you think something is wrong- keep navigating until you find the person who listens. Try not to live with so much fear that you forget to live. You cannot possibly prepare for all the what-ifs there are. Pay attention to signs and symptoms and trust your gut. Hang in there.

Hi Becky,

I just lost my wife in May and my 5 year old son was diagnosed with a brain tumor in June. He was tested and his test came back positive for LFS. The specialist believe my wife had LFS as well but we will never know for sure... I was given the choice to test my daughter and I and we will be having this done next month as I am the type of person that likes to know what I am dealing with. It is a very personal choice but what ever you choose will be the right choice.

Well I guess life gets ahead of us sometimes. I haven't been on this site since 2010. Crazy life with 4 young kids. Anyway thank you all for your responses to my question about testing my kids. Since my last post, I had all my children tested. My oldest, now almost 14 tested positive for LFS and she knows about it. Just recently I had the other 3 tested and my 10 year old and 5 year old both also tested positive. So now I look at them and just want to cry all the time. I immediately regretted having them tested and once it began to sink in I realized that having them tested was the best thing I could have done. Whether I had them tested or not, 3 of them still would have had LFS. The day I found out, their dr. called me and we started right in on what our routine would be for their check ups. She has been in contact with the pediatric oncologist here and she has a contact from Dana-Farber in Boston. I have been researching the best diets to be on and I really feel like I can now be proactive in their care. When I say care I mean the things I have control over. I guess even though I knew in my head that all of them could have LFS, I really prayed that they wouldn't. I find myself staring at them and watching their movements for signs of anything abnormal. I'm sure this will pass once the shock wears off, but for now I guess I need to try to chill out. :o)

So that's where I am right now and I'm trying to live for today.

Hi Becky

Im just starting the process of having my 13 and 10 year old boys tested for lfs i have been fighting for the last 3 years to get them tested as none of the genetics would do it but have now agreed to i keep thinking i would rather know so i can prepare myself for the worest but now im not so sure do you think you done the right thing getting your kids tested?