Results May Take some time Hi Belinda,
I too have been through the family history/genetics process. The first appointment really isn\'t anything to get worried about - its quite interesting as they will do a family tree. Mine was a real eye-opener because my Mother and I both attended in the belief that if there did turn out to be a genetic mutation then it would be from her side of the family - she had BC in 1986. In fact it turned out that the genetic fault was from my Father. We had never considered that but when the family tree was done it was glaringly obvious. There were a great number of female relatives on my Fathers side who had suffered from Breast or ovarian cancer. Unfortunately all but one of those relatives had died so we were unable to do the test for a long time as you have to have tissue samples from two family members who had (or have) the disease. We eventually managed to track down some tissue samples which had been stored in Northern Ireland where my sister was treated until she died in 1994. I think it took about four years - start to finish for me - but that was just because of my particular circumstances - and i DO have the BRCA1 genetic fault.
With regard to your daughter and the unfortunate timing - You will probably have quite a few sessions with the genetics people before you reach the stage of having the test done. You may also be referred for counselling as i was so the process can take quite some time.
So don\'t worry about the test for the time being - just look at this appointment as taking the first step in a long process. Remember to write all your questions down and take them with you to your appointment too!
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I\'ll come too if I\'m up to it Hi Lisa,
Just spotted the date and location for the get together. I will come along too if i am up to it by then (its likely to be busy and i can\'t cope with crowds at the best of times)!
I can also show you how things are progressing with my recon - it might help you with your decision. I have taken photos each week since the op bit i look so awful at the moment i can\'t look at them myself let alone show them off!
I am going back to the clinic on Monday to see my consultant and i am expecting to have some saline put in the expanders.
I think one of the expanders has moved since the op - its much lower and further under my arm than it was so i\'m hoping it can be sorted out quickly.
i\'ll keep in touch
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My BRCA1 from my Dad too! Hi Tammy,
I have also got the BRCA 1 gene mutation from my Father. I am not sure if he knows or not - we have very little contact since he & my Mother divorced 15 yrs ago.
I know exactly what you\'re going through as do so many of us on this site. Keep your chin up - at least you know about it and will be monitored.
I had a Nipple preserving preventative Bilateral Mastectomy on 30th September. I have tissue expanders in at the moment which will eventually be replaced by silicon implants in about 6 to 8 months time when everything is healed and settled down.
I am uncomfortable at the moment but not in pain. I don\'t look very nice at the moment but its early days and i have seen the end results as three of my cousins have already had this op. They look perfectly normal now - better actually because they all have nice perky boobs - no middle age droop any more!
I don\'t regret it one bit - even looking the way I do right now!
There are a lot of choices to make with regard to the surgery - take your time and research as much as you can until you feel happy to make the decision which is right for you.
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Skin and Nipple sparing bilateral mastectomy Hi Anne,
In response to your question regarding the skin and nipple sparing mastectomy...
I had had this done by Mr C Holcombe in the Royal Liverpool University Teaching Hospital on 30th September.
I can\'t say yet how happy i am with the results because i haven\'t even started the expansion yet. At the moment i look really terrible - like my chest has been trodden on!
On the plus side I have absolutely no bruising whatsoever - which i find amazing - unless it just hasn\'t appeared yet!
Unfortunately i got an infection in the stiches on my right side but this is clearing up quickly with the antibiotics.
I have the full range of movement in my arms which is also pretty amazing but i am unable to lift anything yet. Other than that i am meeting each day as it comes.
There are a lot of options open to you so do as much research as you possibly can. Its only when you are happy that you know all the available options that you feel in a position to decide which method is for you.
I also went to a clinical psychologist for six months before i made my decision which i found a great help. If that is available then to you then i recommend it.
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MRI Scanning Hi Marie,
just thought of something else you might not be aware of.
The Magnetic Resonance Imaging Team at the Royal Liverpool Teaching Hospital offer MRI scans to high risk women for Ã‚Â£60.00 (that how much it was earlier this year anyway)!
I was part of their MARIBS study which was a comparison of mammography and MRI screening to detect breast cancer. The study results were extremely encouraging - the MRI detection was as high as 92% in some of the cases and higher than Mammography in all cases for younger women.
You may not be aware but mammography isn\'t very successful in detecting cancer in pre menopausal women anyway which is probably why they\'ve stopped offering them to you.
MRI scanning is painless - not in the least uncomfortable unlike mammograms (god I hated those).
The MRI team are pushing to have MRI screening made more widely available, but like everything else - its down to cost in the end.
Give them a call, its worth Ã‚Â£60 of anyones money for the peace of mind. A day out in Liverpool is good too!
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Check out your Dads side Hi Marie,
Don\'t just look at you Mum\'s side of the family. When my sister died of BC at 36 my Mum had it at the same time so we assumed it was passed down from her. It turned out it was passed down my Fathers side - the history was staggering when we did the Breast Cancer \'family tree\'.
For quite a few years i was unable to have the gene test as all but one of my (many) relatives had already died from BC.
We got a breakthrough after the Alder Hey Hospital organ scandal - i\'m sure you will remember, when it was discovered that body parts from children and babies had been kept without their parents consent.
Following the publicity from that my Mum wrote to the hospital in Belfast where my sister had been treated - and yes, eventually we tracked down some tissue samples they had kept and the gene test was achieved.
I am BRCA1 positive as are several of my cousins.
So don\'t give up - you might have to stand your ground and insist on being seen by the genetics people - but it can be done.
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Don\'t be nervous Hi Sandra,
I had a hysterectony with bilateral sal ooph in 2002 following some worrying results from the screening.
I had the surgery by abdominal incision so it was a much bigger op than yours but i recovered very quickly.
The first three weeks were pretty rough - you really are as weak as a kitten and not even able to lift a kettle for a brew - but my strength came back very quickly. I could have returned to work after three months but i stayed off for five - because i could - and because i really enjoyed not working!
I was put on Oestrogen only HRT immediately, never had any menopause symptoms and have felt marvellous ever since. My hair is glossy & grows really quickly, my nails are stronger and healthier and my skin is much better ( I have always suffered from acne and that has cleared up completely). I also had very heavy painful periods so obviously they had gone too - bliss!!
I wouldn\'t worry at all about HRT. You have already had a mastectomy so the increased risk of breast cancer due to HRT is not an issue for you.
Just slap on those patches and enjoy the new you!!
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Whoopeeee I got my date!! Hi Lisa,
Well, I finally got my date today - I go in next Friday 29th and have the Op on 30th. People in work think i am crackers - they said I am the only person they have ever come across who is delighted to be having surgery.
Ha, thats because they don\'t know what its like to live with the curse!
I am having my Op at Liverpool Royal Teaching Hospital - that is where the Linda McCartney centre is, where i attend the Family History Unit.
I haven\'t got the details yet - that will be in a letter which is on its way apparently.
The date is a bit unfortunate - it will be the 13th anniversary of my sisters death from breast cancer - still i\'m not going to dwell on that - she would still be here today if she had had this op.
Gotta go now, I\'m off to my friends house to celebrate with a few glugs of chilled wine.
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Ramble on...... Hi Lisa,
Its really great to speak with someone who understands.
I know what you mean about making light of it at work - i have done exactly the same. Its absolutely amazing how many people think it will just be like getting a free boob job on the NHS. Even one of the students at the hospital asked me why i didn\'t just just have them off and get a nice new pair. She looked a bit shamefaced when i answered that i didn\'t want new ones i just wanted breasts that wouldn\'t kill me!
To be honest i really don\'t have any angry feelings any more. I am a very positive person and since my sisters death from BC 12 years ago i really cherish my life.
I have known for five years that I have the BRCA1 gene so I\'ve had plenty of time to come to terms with it.
For at least four of those years I never really thought about actually getting cancer - i just felt lucky that if anything did start to develop, with all the screening, it would be detected and dealt with in the early stages.
I had a hysterectomy in 2002 because my ovarian screening was showing worrying results - what a relief that was. No more heavy painful periods or mood swings - a huge inprovement in my quality of life!
It is only as i have got older (I\'m 47 now) that i feel the risk of getting breast cancer is probably increasing,so rather than have it looming like a dark cloud, i\'m getting rid of the problem. That\'ll be it then - everything sorted.
That\'s if i ever get a damn date to go in!!!!
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Get all the help you can. Hi Tracy,
I\'m so sorry you\'ve had to cope with all of this whilst at the same time as grieving for your Mum.
My case is similar in that I lost my sister to cancer (she was 36) and I had to watch her husband fall to pieces and try to cope alone with their 5 year old son. My Mum also had breast cancer at the same time but she recovered and has blamed herself for my sisters death ever since.
As it turned out the BRCA1 gene comes from my Fathers side not my Mother.
Even though I knew it was a 50:50 chance I was still very very shocked when I was told my test was positive. If you go for the test don\'t underestimate the shock you will feel if you are found to have the gene - it is completely shattering.
Apart from myself, my main concern was (and still is) that my daughter may have inherited it too. As she was only 14 at the time my geneticist would not test her. I agreed with this absolutely as i believe that the changes she was going through during puberty were quite enough to contend with without having to deal with that too.
I mentioned this because at 16 your sister has an awful lot going on in her life and she may just not be ready to face it yet.
You know her better than anyone else so you should decide whether to include her at this stage or not.
My daughter is now fully aware of me having BRCA1 and what it means. She knows she could have inherited it too but has decided to deal with that when she is older. She did have a very hard time coming to terms with it though.
I think you need to have some sort of counselling before you proceed with the genetics testing. You\'ve had a really tough time over the last five years and it sounds as if you are still going through the grieving process after the loss of your Mum. Ask for a referral to a bereavement counsellor, it really does help.
Its a long process but the support is out there - your GP is definitely the first person to go to.
Good Luck - and remember - you\'re not alone.
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Its not unreasonable Hi Lisa,
no you are not being unreasonable. if you worked for a small company and it would cause them real hardship to pay someone else to cover in your absence then they would have a point. Clearly this is not the case.
I hope you can reach a solution without having to fight for it - that just causes awkwardness when you go back.
My employer is really supportive with anything related to cancer. We don\'t even go onto half pay after six months (not that I expect to be off that long of course)!
My problem is the uncertainty of the admission date - I am currently avoiding some particular tasks in case I am not there to finish them. Its very frustrating.
I have also been quite bothered about who knows the nature of the surgery. I work in a very male dominated organisation where men talking to you whilst staring at your chest is not uncommon. I dread the thought that they will all be checking me out to see how much my boobs have grown each time they see me!
That is why I hope to work from home for a while after the surgery. I want to be fully adjusted to the new me before i have to face the scrutiny!!
There are soooo.. many things to think about and to come to terms with - before we even get under the knife aren\'t there?
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quite settled on implants Hi Lisa,
I am now settled on expanders with implants. It was the \'hardness\' issue which was giving me the most doubts but after reading your last reply i\'m settled about that now too - thanks for that, i really appreciate your help.
I am still waiting for a date for my op and it\'s driving me mad. I had my pre-op on 31st August and was told they are trying to \'fit me in\' before the end of September. They have a target that patients will not be on the waiting list longer than 6 months, i am now 5 months and 29 days!!
I\'ve phoned a couple of times about it but still got nothing definite - its really unsettling. I am just expecting a phone call telling me to go in the next day.
Its a bit like waiting to go into labour - my hospital bag is packed and ready to go!
On the positive side - i am really looking forward to the time off work. I suppose the longer i wait, the more likely it is that i will not have to go back to work until after Xmas and New Year.
I am very lucky with my employer - I can take as much time as i need and i can probably work from home for a while afterwards too.
I just wish they would ring with that date........!
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thanks Lisa Hi Lisa,
thanks for getting back to me.
I am reassured by your information from Becky it confirms my decision thats for sure.
I also watched the programme about Becky - she was great wasn\'t she, so matter of fact about it all.
I am 47 so I am not expecting as good a result as her - the skin and tissue just doesn\'t respond to surgery in the same way as you get older.
Was it a plastic surgeon who did Beckys Op (and will do yours) or was it a general surgeon?
My surgeon specialises in breast surgery but is not a plastic surgeon. I don\'t know whether i should insist on seeing a plastic surgeon or not so i have decided to stay with this one for the mastectomy and expanders. I will see how things are looking when i\'m fully expanded and if i\'m not happy with the results i will consult a plastic surgeon before the implants are done.
The friends of yours who\'ve had implants - did their breasts stay very firm (like tennis balls) or did they soften up after a while? A member of my family has had the op and hers are quite hard though they look really good.
I think its probably a trade-off really, \'looks\' versus \'feel\'.
anyway i\'ve waffled on as usual !
thanks again for your response
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I\'m keeping mine Hi Lisa,
In a fortnight I will be having a bilateral mastectomy with reconstruction using expanders (I have BRCA1)
I will be keeping my nipples.
My surgeon wasn\'t overly keen as he says there will be a slight risk as there will be some breast tissue left behind - but i insisted!
I have done rather a lot of research about it and I have found in most reports that the risks are actually quite small. I also made the point to my surgeon that if something should develop in the remaining tissue it will be found straight away as it will be just under the skin. He agreed with me on that.
I\'m happy with my decision to have the surgery and settled on keeping my nipples but i am dithering over whether i should have a lati Dorsi reconstruction or expanders with implants. There are a lot of postings from women who\'ve had the LD reconstruction but are experiencing problems. There are very few postings from women who have had reconstruction with expanders & implants (I am assuming that they don\'t post after their ops because they are completely happy with the results).
Has anyone out there any info for me?
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Don\'t Give Up Hi Debby,
I just thought i would tell you my experience with regard to the availability of genetic testing.
I too was told that the genetic test would not be available - in my case it was because all but one of the affected members of my family had already died. (I was told two positive samples were needed).
We just accepted this until the Alder Hey Hospital scandal (where tissue samples were taken from children treated at the hospital and stored without the parents knowledge or consent).
My Mother came up with the idea that if it was common practice to retain tissue samples from those children, then maybe the practice was much more widespread and tissue samples from my relatives may also be retained.
We found that in fact this IS the case.
Believe me it wasn\'t easy but we managed to track down samples from my sister - eight years after she died!
So, it might be worth having a think about it. if more than one of your relatives has died of breast cancer - then it might be worthwhile writing to the hospitals where they were treated.
You just never know.
Myself and six of my cousins have now been tested and four of us have been found to have the faulty BRCA1 gene. Three have already had preventative mastectomies and i am waiting for a date to have mine done.
Don\'t give up.
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