Home Forums Introductions Surgery and Screening Updates

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  • #273
    Karen
    Participant

    Hi

    Just wanted to update everyone with how things are going re sorting surgery and screening and it is great to see more members joining the forum now and detailing their own experiences.

    As I previously mentioned I have made up my mind to have a double mastectomy and reconstruction even though I have currently been cancer free to date. All the female members on my dads side of the family had breast cancer, and at 46 knowing I have a defective P53 gene I do not want to leave it any longer.
    There has been no problem getting surgery sorted everybody from the genetics clinics to my doctor seemed in favour as there is clear evidence that preventative surgery does save lives. After speaking with other women who have had surgery I decided on a surgeon in London who has done hundreds of preventative mastectomies and understands women in this situation. I had my appointment on the Nhs last week and my surgery date has been set for 22nd October. I will be having tissue expanders fitted so I will need another smaller operation to fit a permanent implant 6-8 months later. I know it is a personal decision
    to have surgery but after looking at the other options available this was the only one for me to give me any peace of mind.

    The screening options have proved far more difficult, I also,like most people on this forum want a screening programme I feel comfortable with, and full body MRI is a must for me along with abdomen screening. I was able to get a colonoscopy sorted back in May through my local genetics clinic, I have also had an ultra sound pelvic screen through my GP. Re full body MRI screening the only options at the moment if they are to be read correctly for our condition are Manchester or the Royal Marsden London. There is meant to be a research programme commencing end of this year early next at the Marsdon and Manchester have commenced a screening programme. If you ask your local genetics clinic to register your interest then hopefully when the research commences you will be included on the programme.So it appears there are things about to happen but communication from local genetics clinics is still very sparse. All I can say is Thank God for the Internet and don’t give in until you get the screening you want we all deserve the option.

    Karen x

    #274
    sandra_may
    Participant

    Hi Karen, I’ve only just found this site but I’m so glad I have. It’s good to hear you have decided on your surgery. I really hope it goes well for you.

    I have also heard about the study in the last few days and believe it is called SIGNIFY. My genetics doc is going to get me the details as soon as possible and register our interest. Do you have any more info at the moment?

    Also can you please clarify what you mean where you say “and Manchester have commenced a screening programme”? If there is a screening programme underway there I would be very interested in the details as when I recently requested that we undertake the Toronto Protocol my genetics doc contacted Manchester and was told that they do not offer intensive routine screening. I’m wondering whether this is the response from just one doctor there maybe?

    Sandra
    Xx

    #279
    Karen
    Participant

    Hi Sandra,

    I have an appointment to go to Manchester early September to discuss MRI body scans further so I should be able to let you know more about it after my visit.

    Re the Marsden I only know that they are hoping to commence the research programme end of this year or early next and they will contact those interested with the details nearer the time.

    My feelings are that the Marsden and Manchester seem the most switched on about the condition so maybe you could ask your genetics clinic or GP to refer you to see a specialist at either one of these places.

    Karen xx

    #283
    Sonja
    Participant

    Hi Sandra and Karen,

    does anyone of you know if this study (Signify?) is only for UK patients or EU/world-wide?

    Thanks,
    sonja

    #284
    Karen
    Participant

    Hi Sonja, you would need to contact the Royal Marsden in London to find out. However from my experience I have found that these studies are usually only for residents of that country, I contacted France ans America earlier this year about their studies and was told I would not be able to participate being a UK resident.

    From what you have said in your earlier post it looks like have been able to get all the screening required in Germany as standard which seems very good. In the UK the screening protocol is nowhere near as good, do you know if the screening you had is standard in Germany for Li-Fraumeni sufferers ?

    Take Care

    Karen xx

    #285
    Pan
    Keymaster

    Hi Sonja,

    I will be contacting people at the Marsden and some contacts I have in Manchester to see if we can get some official confirmation of a trial and what the details are. As soon as I have anything I’ll post it here.

    Pan

    #288
    Pan
    Keymaster

    I’ve had confirmation that the SIGNIFY trial is close to being started. More details are available here:

    [url=http://www.anticancer.org.uk/2012/08/signify-new-uk-lfs-study.html]http://www.anticancer.org.uk/2012/08/signify-new-uk-lfs-study.html[/url]

    #290
    sandra_may
    Participant

    That’s brilliant. My geneticist is going to be getting the details for us. We are up in the North East so not really near Manchester or the Marsden. Hopefully we can participate from here, with so few people to choose from to take part I don’t see how they can say no. But in saying that I am quite willing to go to Manchester (about 2 hours drive) if that’s what it takes to get the screening.

    #310
    Karen
    Participant

    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

    #311
    Pan
    Keymaster

    Good luck, Karen, sounds like a bit of a hectic schedule. Hope it all goes well.

    Interesting to see that they’re keen to have people enrolled on the SIGNIFY trial. This should give hope to everyone else who wants to join.

    #315
    sandra_may
    Participant

    Karen, just wanted to say Good Luck for your surgery, wishing you a speedy recovery. Xx

    #319
    Karen
    Participant

    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

    #320
    Pan
    Keymaster

    Glad it went well. Hope you can recover enough to enjoy London for a bit.

    All the best,

    Pan

    #329
    Karen
    Participant

    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.

    #330
    Pan
    Keymaster

    That’s excellent news, Karen. Thanks for letting the group know.

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