[Karen]

Hi Pan, that’s a great idea. I know you have lots of ideas on prevention so that would be good. I think we
can help ourselves with looking at our diets and life style, I do believe that diet is important and keeping a strong immune system. I have also read the above book and agree with Helen. Also updates on the way forward by the medical professionals and how signify is progressing would be good.

Look forward to seeing your agenda

Karen

[Karen]

Hi TP,

Welcome to the forum.

I am Karen and you may have read some of my earlier posts. I carry the gene defect but have been lucky
To remain cancer free to date. All of the females in my dads side of the family had breast cancer so when
I discovered I had the defect gene back in 2011 I saw breast cancer as my first risk followed by sarcoma, which my brother unfortunately had before passing away the end of last year. For me the decision was an easy one, I knew I had to have a double mastectomy even though I hadn’t got cancer, and in Oct 12 I went ahead followed by reconstruction. I have had no regrets and would do exactly the same thing again. I am currently having full body MRI scans on a yearly basis due to the sarcoma risk but at least the breast cancer risk is greatly reduced now. If you have any questions please let me know, Pan has my e-mail address if you would like to e-mail me.

Wishing you all the best

Karen

[Karen]

Hi Renu, so sorry to hear the sad news about Sunny. I know Paul often chatted to him on the forum and they discussed various options. I send you and your family my best wishes during this difficult time.

Karen xx (Paul’s sister)

[Karen]

Thank You for your kind words Surinder, so sorry to hear about your situation. Like you say it is important
For us to keep pushing for the research going forward. X

[Karen]

Hi Pan

I know you did a lot of work on looking at Metformin as a possibility for reducing cancer risk. When I went to Manchester I asked how things were moving forward with this option and was also interested to see that a pilot study taking Metformin is already under way in the States for people with Li-Fraumeni. I was told that once funding could be raised in the UK it was quite possible this study could also go ahead here. The signify study has been a very good step forward for us all but how fantastic it would be if we could find something that could actually help prevent the cancer from developing in the first place. I think it is in all our interests to persue this. I am not sure how much funding is required for a project like this, you may have a better idea, but perhaps we should all have a serious think about fund raising ideas to help move things forward as quickly as possible.

Karen

[Karen]

Hi

To the best of my knowledge if you are not carrying the defect gene then your daughter will be fine. Your genetics clinic will be able to answer any questions you may have.

Karen

[Karen]

Hi Pan

I think the forum is a great source of information especially for people newly diagnosed or worried they may have the defect gene. Although the postings may be limited there are a large number of people who come onto the site and read the postings, this means that more awareness of the condition is being created which can only be a good thing. It would be a great shame now if the forum was to be closed although I do appreciate it takes a lot of time and effort from you to keep it running.

Karen

[Karen]

Hi Pan

I look forward to hearing about your research in the near future, it would be great like you say if we can move further forward.

Thanks

Karen

[Karen]

Hi Everyone,

I am now 5 weeks on from my surgery and am recovering very well. The first 2 weeks were the worst because I felt such an invalid but luckily my Mom was at hand to help out. My main problems were my arm movement, it took me 10 days to be able to lift myself up out of bed, I had to be pulled up, and I could not lift my arms above shoulder height. Once the first 2 weeks were out the way thing seemed to progress much better. The pain I was getting whilst getting into bed at night seem to clear and I was off my pain killers during the day and just took them when required at night. By the end of week 3 I no longer required them. I went back to London for my check up and to have my dressings removed and my surgeon was extremely pleased with the healing process and the way I was feeling. My tissue results were also clear which was excellent news. I also saw a physio doctor and was given daily exercises to get my arm movement back and these to have worked really well.
Last week I started to drive again . I am going back to work next week, but have been advised to go back part time for at least the first week so I don’t over do it. Rest has been very important in the healing process so I have made sure I have been getting 7-8 hours sleep a night now, in the early days it was about 9 hours. On saying that after the first 10 days I have not required any sleep in the during the day which has been very good compared to a lot of women who have the op. Prior to the op I used to only get about 6 hours.
The next stage for me now is to go back to London 20/12 for my first saline injection to start stretching the skin and giving me some shape. I did have some saline put in the expanders when I had the op but am obviously still quite flat. Iam looking forward to getting my new boobs which will take about 8 months to be complete.
The other Good News I had last week was a message from Manchester to say there was nothing of concern showing on my full body MRI scan and they will write to me in due course. So to date it has all been good news. I feel no regrets having the preventative surgery just a great relief that I have removed one barrier going forward and do not need to worry about the breast cancer side like I did before. The full body MRI has put my mind at rest for the moment re the sarcoma risk I have, I just want to know that I will be able to have them on a regular basis going forward.
Surgery may seem radical to some people but there is proof that it saves lives going forward and for me who needs to take control of my health as much as possible, it was the only thing to do.

[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

[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

[Karen]

Hi , just wanted to let you now I have come out of hospital today and all has gone well with the surgery to date. I am resting in London until Saturday and then will come back home.

Also had my full body MRI scan on Sunday it was all a bit of a rush but glad I had it done now.

Take Care

Karen xx

[Karen]

Hi

As you know I visited Manchester on 3/9 and was told they would try to sort out my MRI scan before my surgery in London on 22/10 which is this Monday. Anyway they have just managed to sort it, Iam going to Manchester for my full body MRI this Sunday at 7.30am. Earlier this week I received details of the signify study from the Marsden inviting me to take part, when I told them I had my scan arranged for Sunday at Manchester they contacted them to see if this scan can be part of the study because they are looking to raise more funding going forward and needed the people for the study. I am being sent the questionnaires in the post to complete.
After my scan which will only take about one hour I am coming back to the Midlands and will then leave for London as I have to be in the hospital for 7.00am the following morning so am stopping in London overnight. It has all been a bit of a rush but I have been waiting to have this scan since February so am not going to miss out now.
Will let you all know how my surgery goes next week, am having six weeks off work to recover, just keeping my fingers crossed I get good results from the surgery and the scan now.

Karen x

[Karen]

That’s great to see in the press, it shows that public awareness is even more important now. If would be parents know that they are carriers hopefully in the near future it will be possible for children to be born free of the condition meaning that the majority of cases can be eliminated.

[Karen]

Hi

I have been up to Manchester today to meet Professor Gareth Evans at the Christie Hospital and I must say I was really impressed with him. He has a wonderful manner in the way he explains things to you and seems to have a very good knowledge of the subject. Not only this but he is also arranging full body MRI Scans as a clinical service if you are a patient of his. To date 4-5 patients have had these scans and it is only a recent thing that has been set up. You do need to be referred to him by your doctor and visit him in Manchester as I have done today so that he can arrange for the scan, which again takes place in Manchester. He is now arranging my first scan for me hopefully to take place prior to my surgery. The scans will be carried out on a yearly basis.
He also explained to me about the research programme and that patients having the scans will be transferred to this once it is up and running. It has taken 7 months of being told no by others to achieve thiis but now I feel I am finally getting somewhere so if you do not want to wait until the research programme get your doctor to refer you to him and he can sort this out for you.

I also get colonoscopy through the clinic in Birmingham but only once every 5 years.

Hope this helps.

Karen xx

[Author]

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