Hi! I’m being tested for LFS

[SEaster]

Hello,

Today I found out that my mum has been diagnosed with LFS, She first got breast cancer when she was 40 and has had 7 bouts of cancer since then; breast, spindel cell sarcoma, and most recently colon cancer, in spite of this she is now 63 and fighting fit! To be honest it is a relief to finally know why she keeps getting cancer.

We have been told that I have a 50% chance of also having LFS. I’m going to have the test to find out for sure. Has anyone out there been through the test?

[PanP]

Hi and welcome.

Lots of people here have had the test – some turn out to have the defective gene but others don’t. Your mum sounds like an amazing lady. Still, you would have thought that she’d have been diagnosed with LFS sooner given how many cancers she’s had.

Pan

[Karen]

Hi , I am Karen, welcome to the forum.

I had the test at the end of last year , after we found out my brother Paul had LFS when he was diagnosed with a soft tissue sarcoma. He was the 7th member of my dads side of the family to get cancer.
I needed to know so I could face the situation going forward if my results were also positive and at the end of January I received the news that they were.

At the age of 46 I had to make up my mind about preventative surgery. All of my female relatives had developed breast cancer first although at younger ages than me. However I still knew surgery was right for me to take away as much as that risk as possible, so 1 month ago I went ahead and had a preventative bi-lateral mastectomy with tissue expanders. I am making a good recovery and have no regrets on the decision I made, I just feel so lucky I have had an opportunity to make a decision. Re the sarcoma risk I also have, I have had a full body MRI scan at Manchester and am still currently awaiting the results which should be through soon. As you may have read there is a new trial taking place called Signify which now will make a full body MRI available to adults if they wish to participate. So there are options now becoming available to sufferers which were not there in the past.

I know it can be a frightening time for you now especially the not knowing. I found it much easier to cope with once I did have my results and had got my surgeon sorted and the MRI body scan done, I am just keeping everything crossed that these results are good.

Good Luck with everything and hopefully your test results will be negative, if you have any questions please feel free to ask.

Karen x

[SEaster]

Thanks Karen and Pan for your replies. My name is Sarah by the way, I’m about to turn 35 and have had no cancers so far.

It does seem crazy that my mum was not diagnosed earlier, we even had a couple of her consultants advise her not to get genetic testing!! In the end I got the ball rolling by arranging to see a geneticist myself and she said my mum needed to be tested first so they knew what to look for in me. Its such a revelation to find out about LFS and shocking how rare it is.

I’m going to contact that geneticist I saw at Great Ormond St and get the test sorted asap. I read that it takes 8 weeks to do the test, is that right? :unsure:

Thanks, Sarah

[Karen]

Hi Sarah

It took about 6 weeks for my test result to come back. Out of interest do you have any other family members on your Moms side of the family who have developed cancer? We have 2 prominent types of cancer that show up on our family tree which are breast and sarcoma, although my dad did develop prostate which is considered a rogue cancer.

Please keep us informed how things go, I think you are doing the right thing in taking the test. Do you have any children or brothers/ sisters? Both myself and my brother have no children so at least we do not have the worry of that going forward I know it is very stressful for parents when faced with this situation.

I have a couple of male cousins who have decided to not take the test and one has a daughter who has had children and from what I can gather he is not going to make her aware of the situation. I find that difficult to comprehend and have asked him to take the test first without telling her and if he comes back positive he only need explain then, however he still wants to ignore the situation. I do not know her so can not get involved but I know if it was my child/ granchildrenI would want to take the test to find out for their
sakes.

Good Luck and hopefully everything will turn out well.

Karen x

[Author]

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