Hi all - I had bilateral LD, and had both ports removed under local anaesthetic six months after initial surgery, done as a day case. Whole thing (including nipple tatoos) took about an hour.
Definitely been much more comfortable since!!! Can wear any bra / crop top without it hurting / itching.Scars are approx one inch long, and have healed so well they are hardly noticeable.
I found the whole thing a very minor procedure, and well worth the result
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Hi - I have a strong family history of BC (and other cancers) but no available relative for testing; however, I was offered (and accepted) preventive mastectomies having been confirmed as being at 'high risk' by genetics department - i.e. no 'proof' of there being a genetic link.
The NICE Clinical Guideline for 'Familial Breast Cancer' (CG41) outlines 'best practice' in this area - copies are available on the NICE website (www.nice.org.uk/CG041), and worth looking at if you can. It is clear about what should happen when. BUt briefly:
For women with
• a greater than 8% chance of developing breast cancer age 40–49 years
• a 30% or greater lifetime risk of developing breast cancer
• a 20% or greater chance of a BRCA1, BRCA2 or TP53 mutation in the family
the following steps are recommended:
Offer genetic counselling
• undertake personal risk estimate, if requested, and provide:
– information about uncertainties of estimation
– a written summary of consultation.
Following discussion of risks and benefits:
• offer mammographic +/– MRI surveillance if criteria met (see pages 9–10)
• if 20% or greater chance of BRCA1, BRCA2 or TP53 mutation in the family and there is an affected relative
available, offer genetic testing following two sessions of pre-test counselling
• offer risk-reducing surgery (mastectomy and/or oophorectomy), including pre-operative counselling (if no mutation identified, this should be following validation of family history or agreement with multidisciplinary team).
In my own case, my locat hospital did not offer immediate reconstruction, so my GP referred me to one that did. I was concerned about the funding aspect (I live in Wales, the hospital I was referred to was in England) but it was not mentioned as an issue.
I wish you every luck in achieving your operation. It's hard enough being in the position of making the decision, without having to fight for it to happen. But I do think the PCT would have a hard time defending a decision not to fund, if you fir into the criteria in the NICE guidelines
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Hi - I had bilateral preventive mastectomies with LD flap / implant reconstruction a bit over 2 years ago ...and had twitching similar to what has been described here. Quite funny as a party trick, but a nuisance in everyday life!
In Feb of this year I had surgery specifically to dissect the LD nerves (scars in armpit) and this sorted the problem, at least for a short time. Unfortunately the twitching on the right seemed to return a month or so later, and I have just had 'another go' at dissection a couple of weeks back. The surgeon seemed to think the nerve had healed itself after being cut, and so this time remove a section to prevent it happening again! Anyway, so far all seem well, though early days as yet.
So - some clinics recognise that this twitching is (a) quite distressing and (b) something that they can do something about. Even if you've been told that the nerve was dissected at your original operation (I was), my own experience is that sometimes the nerves seem to heal and so 'another go' is worthwhile. I wasn't offered medication, but clearly this seems to also be an effective option, and matbe worth a try in the first instance
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not knowing for sure Hi Kelly
Sorry to hear about all the history of cancer in your family.
Some cancers (like breast cancers) can either have a genetic link or just be \'happenchance\'... so in your family, there\'s either a genetic link, or you\'ve all been VERY unlucky. Given the numbers involved, the \'very unlucky\' explanation is pretty unlikely, so a gene fault is the probable explanation.
BRCA1/BRCA2 are the well know \'faults\', but they are unlikely to be the only ones - so the fact that neither was identified in your mother means either that one of the faults was there but not found, or the gene fault in your family is a different one that has not yet been identified. The difficulty with gene tests at present is that \'not found\' doesn\'t necessarily mean \'all ok\'. Its more of a \'can\'t be sure one way or another\'.
I would suggest that you get referred to a cancer genetics centre, where they will collect all the information your have about your relatives, and your own breast / reproductive health, and calculate your own risk of breast cancer. While this may not feel as concrete a piece of information as knowing one way or another about having a particular genetic fault, its important to remember that people with a known fault don\'t inevitably get breast cancer, and nor do people who have a high risk. But I know what you mean about the worry about \'when will it be me?\' taking up a lot of room in your head!
In my own case, with a strong family history of breast cancer, genetic testing was not possible as there was no-one who had had cancer to test. But based on who had had what and when, my own risk was calculated (greater than 1 in 3), and after discussions of my options I chose to have preventive mastectomies with reconstruction. Three months post-op, I\'m very happy with my decision, and the results of the surgery, but most of all relieved that I don\'t need to worry about breast cancer any more. The \'peace of mind\' has (for me) been well worth all I\'ve been through.
Clearly you are also wondering about oopherectomy, and this brings a slightly different set of considerations - loss of fertility and early menopause - that would need to be thought about. Again, information about pros and cons of all the options to reduce / manage your risk of ovarian cancer would be available via your genetics clinic.
I wish you all the best with your decision making, and a long and healthy future for you and your family
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re manchester referral Hi Anne -
Contact details for Manchester Family History Clinic / Genetics Service can be found at
Give Jean a call and I\'m sure she\'\'l be helpful.
I went to Manchester because I live in North Wales and they don\'t do the surgery locally. I was referred both by the local clinical genetics service and by my GP; it took about five months to be seen for the first appointment with Mr B, which was Sept 2005, and had several appointments with him, their genetics dept, breast care nurse and psychologist between then and op in April. Its a good centre; they\'ve done lots of mastectomies and recons, and there\'s choice of methods available either from Mr B or one of his colleagues if you opt for TRAM / DIEP methods.
Door-to-door travel time to where I live to the various different hopsital sites that I attended was 60-80 mins - time-consuming but fine for pre-op outpatient visits, but difficult for friends / family to visit me as an inpatient and for immediate post-op follow-up (I needed seroma drained on my back for several weeks after discharge) and subsequent clinic visits. Obviously this depends on the type of surgery, and on how you get on generally, but if you go for implants I would think you\'d be going back there fairly frequently for the expansion injections. So do think about the time / cost / discomfort aspects of going further afield from your local area.
[A great tip from suefab was to make sure had pillows in the car for me trip home from hospital - I had one behind me to cushion the back scars, and one in front of me to protect my new boobs from the seat belt - well worth remembering! That said, it was uncomfortable, rather than painful, and may well be somethng that you feel is preferable to going locally.]
Also, you might find the following site worth looking at:
It provides lots of info about the various different techniques, and goes through the pros and cons for each. I though it was quite helpful when I was thinking about what I\'d have done.
With best wishes -
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slow down woman! Hi Annieanne
Sorry to read about the difficult time you had nursing your Mum.
Like you I had my risk of breast cancer calculated, based on family history and personal factors, and it came out about the same as yours. Although I\'ve known this for many years, it\'s only recenty (since I looked after my brother through terminal cancer) that it really bothered me a lot, and I wanted to \'prevent\' breast cancer rather than \'pick it up early\'. I was referred to Manchester (Mr Baildam!) in September last year and had bilateral mastectomies with LD reconstruction in April (three months ago yesterday!)
My mental health has improved a million-fold since the op; I hadn\'t fully appreciated how much space in my head all the worrying about BC was taking until it didn\'t need to be there any more ( yes, I know its not 100% but it feels SO much better than 40%). I opted to have my nipples removed, as I felt I wanted as much breast tissue gone as possible. Plus as I had F-cup size before, there was enough skin around not to need a skin flap. I\'ll have areola tattooing at some point in the future, but don\'t think I\'ll bother with nipple reconstruction.
There\'s a lot to think about, and no right or wrong answers. I\'m sure it will help you once you meet up with your Breast Care nurse, particularly if you can talk to someone whose had it done. The various operation types mean that there are some different after-effects in looks / feelings, but I think the overall experience is similar, so even if you can\'t meet with someone who has had exactly the same op as you want, it should still be very reassuring.
As for perhaps going privately - please don\'t rush this decision. I can understand your reluctance to return to an environment that brings back so many difficult memories, but there\'s a lot to be said for \'staying in the system\' - provided it doesn\'t mean waiting forever, of course! Have you thought about visiting the ward, maybe with your Breast Nurse, to talk to staff about your anxieties? If they know the particular emotional difficulties that being nursed on the ward brings for you, they may be able to make your stay much more bearable. I visited the ward where I was to be admitted, and blubbed a lot - there was nothing specific to the ward, but I just hate being a inpatient . It helped me to do this, although I don\'t really think the staff understood quite where I was coming from - they thought I was worried about the op, whereas I was worried about living in a ward environment and not having any control over my life.... but it may well be worth a try - they all seemed to bend over backwards with the reassurance. That said, I fully agree that your mental health is worth protecting, and if you really can\'t face the place, and going somewhere else is an option, then go for it.
I wish you all the best in your decision-making. One step at a time, and you\'ll get through all that needs to be got through.
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gene testing not always needed Hi Red24
Have you seen a genetics specialist? I ask because like you I have a strong family history of breast (and other) cancers, but no-one available for initial gene testing - so I was not able to determine whether I carry a mutation or not.
However, I was seen at my local genetics unit, who used the information about the cancers in my family that I had knowledge of to draw up a family tree; this was enough on its own for my risk of breast cancer to be calculated. As it was high (30-50%), I asked to be referred to a specialist centre for a second opinion and to discuss all the options re screening / prevention. I have now - at my own request - just had bilateral prophylactic mastectomies and LD flap reconstruction. I was treated by the team in Machester, who have a long established and very supportive practice in providing advice and support to women in \'high risk\' situations.
Although the surgical route to prevention is not a choice for everyone, it was definitely what I wanted - t I was very distrustful of annual mammography (I had large and very \'dense\' breasts which made getting good views difficult), and having had several lumps removed in the past added to difficulties in interpretation. It\'s now nearly 4 weeks since surgery, and although still very tired and a little sore, I am certain that I made the right decision for me.
If you haven\'t already had one, I would recommend to ask for a referral for genetics counselling, and see what they can do for you even without access to affected relatives\' samples. If Manchester is possible to get to, I can recommend the Team there.
With very best wishes for the outcome you want -
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Celeste - found these bits but not sure it\'s what you were looking for - Have you any other info about \'Opie\' e.g initial / date of report / where you heard about it?? Can access extensive health search engines through my work, so happy to look again if you can find any other info to go on -
this came from UWE website:
\"UWE researcher seeks women for breast cancer study
Issue date: 13/02/2006
A researcher from the University of the West of England is seeking women who have been diagnosed with pre-invasive breast cancer to take part in a UK wide study. Fiona Kennedy is working in partnership with Breast Cancer Campaign to explore the psychosocial affect of being diagnosed with pre invasive breast cancer. ...
BCC is calling on women throughout the UK who have been diagnosed with DCIS to take part in a confidential interview (either in person or over the phone) to explore their experiences. For more information about the study or details on how to take part please visit http://www.breastcancercampaign.org or call the lead researcher Fiona Kennedy on 0117 3281890\"
OR: Macmillan Cancer Care are looking at this area:
\"Cancer sufferers call for emotional research (03.10.05)
Cancer patients have spoken out about the need for increased research into the issues surrounding the disease other than scientific and medical factors.
A nationwide study carried out by cancer charity Macmillan asked people affected by cancer what the issues were that they see as a day-to-day priority, and it found that the practical, social and emotional factors of the disease were often most important.
The study collected the opinions of 105 cancer patients from a range of ethnic backgrounds and age groups, and at varying stages of treatment.
The Macmillan Listening Study found that the most important factor in need of research in the eyes of sufferers was, \"the impact cancer has on life, and how to live with cancer and related support issues\". \"
Also - NEW YORK (Reuters Health) - \"The long-term emotional impact of breast cancer may be greater for young women, new research suggests.
The study of nearly 600 breast cancer survivors found that several years after diagnosis, women who developed the disease in their 20s or early 30s reported poorer emotional well-being than did older women. These younger women were also more likely to say they lacked energy, according to findings published in the Journal of Clinical Oncology. ...
the study shows that if a woman feels long-term emotional effects, it\'s normal and she\'s \"not alone,\" lead author Dr. Patricia A. Ganz told Reuters Health.
\"This is really the largest study to look at this in a comprehensive way,\" Ganz said.
SOURCE: Journal of Clinical Oncology, November 15, 2003. \"
OR - \"At the Cancer Research UK Psychosocial Oncology Group at St Thomas\' Hospital, Professor Amanda Ramirez is evaluating the emotional and social effects of having breast cancer.
They are also looking at the emotional impact of genetic testing for breast cancer risk and the factors influencing its uptake. \"
All these a cut-and-paste pieces from various websites. Seems that there\'s a fair bit of research into the area - let me know if you want links, etc - hope something is helpful
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don\'t panic ---but take the opportunity of having the lump removed. then you won\'t have to fret about it any more. others have reported elsewhere on this forum that their biopsy showed benign but on removal their lump was malignant. better to be safe than sorry
I\'ve had four lumps out over the years, and the thinking about it has always been much worse than the reality. I even had one out under local anaesthetic, which was quite surreal, but couldn\'t see or feel anything, so not gory!
And once the surgeon assured me that I would look excellent in a bikini when he\'d done his stuff ... had hoped this would mean a free session of tummy and thigh liposuction whilst I was \'under\' but woke to find a small and very neat scar discretely placed so it would be hidden by even the briefest bikini top. Lovely, but the excess tummy and thighs still let down overall look.!
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