Hi I have newly joined this forum and am looking for anyone who has gone through or is going through the same process as me who can offer some mutual support. My mum died of breast cancer 4 years ago and my aunt, her twin sister, died of the same just over a week ago. Went to see genetics doctors today and they are going to test my aunts dna for brca 1 or 2 am currently just about in the high risk category and the results of the dna test will tell whether i am higher or more moderate was hoping for someone to chat to who is in a similar situation to provide support to each other. take care all x
Hi Pennie,
I’m really sorry about your mum and your aunt, that must be so hard for you. It’s good they’re able to test your aunt’s dna, hopefully you will get some answers soon. I’m high risk too but not brca1/2 and hoping to have preventative surgery. How old are you? (If you don’t mind me asking). Are you currently having screening? I’m 30 so not entitled to screening for another 5 years.
Zoe x x
Hi Pennie
I went through genetic testing and have recently had my first preventative mast and recon. I am now waiting to in for second op. I will also have my ovaries removed but in the meantime I am taking part in ovarian cancer research programme (bloods and scans).
My mum had BC twice and she has various cousins and aunts who have had breast, ovarian, bowel cancer and some have then gone on to develop leukaeimia. My mum tested negative to BRCA 1 or 2 but I was placed high risk. Guys mentioned a syndrome which presents with all the above cancers which I do not believe the gene has been identified yet.
I found the decision whether to have surgery very difficult to make, but now I am so pleased I have gone through it (well half way anyway). I am a single parent ( in a new relationship but not living together), I have 2 jobs, 2 kids, 2 dogs and a horse to look after, so I was worried about how I would cope afterwards. But it was nowhere near as bad as I thought. True friends show their worth at times like these.
The whole process took approx 3 years to get to this stage (the blood test took 15 months to come back).
Anyway, welcome to the forum and please feel free to ask ANY questions you wish.
Jackie. x
Jackie,
Hope you don’t mind me butting in and asking you a question. I saw a surgeon last week to discuss bilateral mx and she’s not keen to do it without a proven gene fault. Did you have this problem before your operation?
Zoe x x
Hi Zoe
No not at all. My surgeon briefly asked me what relatives had had BC and she had a copy of the letter fro Genetics saying I was high risk and that seemed to be enough.
How was it left with your surgeon? Are you goiing to persist and insist? How keen are you to have surgery (if keen is the right word)?
Jackie x
Hi Jackie,
Yes, keen is the right word and I am very keen!! I have to go back next week to see the BCN, then see the surgeon again, then she will make her decision. I’m not sure if it’s a kind of test they put everyone through to make sure you’re serious about it and realise the implications etc, because otherwise what’s the point in seeing me in the first place? They told me that not many surgeons in the country will operate with no gene fault. If she says no I plan to ask for a referral to a surgeon who will do it. Was your surgery at Guys or was that just genetics?
Zoe x x
Hi Zoe
I saw Genetics at Guys but my surgery was at Maidstone, Kent. I live approx 45 miles away and I was not referred to my local hospital because Guys did not know if the local surgeon would operate as he is quite new in post.
You could be right about the ‘test’, I felt like I was at an interview and needed to give the ‘right’ answers.
What part of the world are you in? Will you be going to Guys?
Jackie x
Hi Jackie,
I’m in Cardiff. I know there are plastic surgeons who do breast recons in Swansea and Bristol so I’m hoping someone will do it (anyone!!). Yes, it was exactly like a job interview but with a breast examination halfway through. It’s really good to hear that you feel happy after your surgery, when did you have the operation? How old are your children? Mine are 3 and 7 months so I’m a bit worried about how I’ll cope afterwards.
Zoe x x
Zoe
I had my op 9 weeks ago. I did not need a plastic surgeon because I had the lattissimus dorsi method of recon (back muscle flap) with silicone implants. This was the only option given to me as I am quite thin, or I was then, and I did not have enough abdominal tissue to make 2 breasts. I am very pleased with the realistic result and I am back to full duties around the house and stables. I was hoping to stay off work until after both ops but there is a bed crisis and I do not know when I am even likely to go back in. Back to work Thursday 
My kids are bigger than yours 14 and 18, so they were great at looking after me. Do you have lots of supprt from your family? Toddlers are heavy arn’t they!
Jackie x
Jackie,
I’m hoping to have implants and tissue expanders as I’m also quite thin and small framed. I’m a bit confused about the PS issue, the surgeon I saw is a breast surgeon and she warned me recons done by PS’s look much better, but the picture she showed me she had done looked exactly as I expected. Maybe she was just trying to freak me out. Maybe some people expect to have a celeb style boob job, who knows.
I’m hoping my husband can take time time off work and my mum can help out too, although I sometimes feel the whole process is taking so long my boys may be teenagers by the time I get it done and they can look after themselves!
Good luck with your return to work, are your colleagues aware of the situation?
Zoe x x
Hi Zoe
Your surgeon sounds a bit un-helpful and not making this easy for you, maybe the BCN could me more helpful. What type of recon are you aiming for?
My immediate colleagues are aware of what I have had done but I work within the Police setting and the vast majority of them do not know. I work within the custody cells and it can get a bit lively at times. I don’t get involved in restraint but I do have to get out the way a bit quickly sometimes so occupational health have said I am not allowed to go into my normal work environment, so I have no idea what I will be doing, probably answering the phone, tidying up or something.
Jackie x
ps I was in Cardiff very recently visiting my partners family. Hope you dont get any snow tonight (unless you want it).
Jackie,
I would have implants and tissue expanders as I’m small and I want a fast-ish recovery time because of the children. How are you finding the implants? Do they feel strange? I think I’m more concerned about the ‘foreign body’ sensation than how they’ll look.
The BCN was lovely, but she said herself that it’s not her I have to convince. Maybe I should resort to begging!
Your job sounds a bit full on, you’ll be better off making tea or something until you’re fully recovered, even of it’s a bit boring!
Zoe x x
Hi Zoe
There is plenty of tea drinking so I think that would fill my time. 10 weeks worth of e-mails should do it also!
I really do not think about my implant. It feels part of me from the inside and out. To begin with it felt very heavy and one day I ran a few steps which was very painful. At the moment it does feel very different to my remaining natural breast, both in movement and feel. It sits in a different position, and is a little bigger. I am having to choose carefully what I wear to hide this.
My surgeon explained to me the risk of encapsulation of the implant, but by putting it under a layer of muscle this is far less likely. I recently read that the level of remaining risk of getting BC after surgery is unknown because prophylactic mastectomy is a relatively new risk reduction. My surgeoun said taking the nipple away is the most important part of reducing risk.
Overall I feel so much more relaxed and still have a feeling of relief that I do not have this decision hanging over my head, whether to go ahead with surgery. I sometimes forget that I still have to go through it again. Sooner the better.
It really does seem a shame that you have to ‘get past’ your surgeon. This is a very difficult decision to make and she sure is not making it any easier for you. My surgeon gave me the feeling of ‘here are the facts, now go away and let me know when you have decided. Take as long as you like’
When you say you will have implants, will you have any tissue or muscle used from your abdomen or back? I can understand you needing a quick recovery because of your children, I was virtually fully active from 6 weeks or even a bit less.
Jackie.x
Pennie
Please do not feel Zoe and I have taken over your thread. I hope you have found our original comments helpful, and our subsequent disscussion.
Please stay in touch if you wish.
Jackie x
Hi Jackie,
I’m not having a lat dorsi or tram, have been told that I’m too little, and to be honest I don’t really fancy it, although in pics I have seen it does look more realistic. I’ve read the risk reduction is around 90-95%, but as you say, no large studies have been carried out because it’s relatively new. It’s interesting what your surgeon told you about removing the nipples, I have spoken to other people who have been told keeping their nipples adds almost no extra risk. Incidentally, I have been told that I can’t keep mine, which is fine, kinda glad I don’t have to make the decision myself. Your surgeon sounds great, I wish I had him instead!
My cousin tested negative for brca1/2 fault but my geneticist wants to test my mum as well, just for ‘completeness’, he thinks it extremely unlikey it will come back positive. I still want prophylactic mastectomy regardless, the only difference it would make is that I would have my ovaries removed in a few years if I had a mutation. Anyway, the surgeon is missing the point and talking about waiting for my mum’s result - she hasn’t even been tested yet.
Anyway, I will let you know how I get on on Thurs, same day as you go back to work, blimey, it’ll take ages to catch up with 10 weeks of emails!!
Zoe x x
Hi Zoe
I’m not following you round forums haha! Sorry to butt in on your conversations!
I hope you are ok?
Jackie
I’m intersted in what your surgeon said about nipples as I had my bilateral mastectomy with tissue expanders end of dec and kept my nipples as my breasts were very small and apparntly had a good enough blood supply. My surgeon said that the risk of keeping my nipples was minimal and I think he said that if any cancer did grow there it would be isolated and very easy to remove. He is a great surgeon and a specialist in genetics and family history and bc. It is very interesting what your surgeon said and has worried me. I really hope I made the right decision in keeping them. I speak to him in 2 weeks and will be discussing this with him.
Pennie
I am so sorry about about your mum and aunt.
I am 33 and tested brac1 positive sept 07. My sister got bc and died 18 months later age 35 (March 07) and I wasn’t taking any chances! My dad’s sister died before age 50 when I was about 14. Nottingham genetics got in touch with me and after my sister got tested and was positive I agreed to get tested. I got my results last sept, saw the surgeon and bc nurse 3 weeks later and met them again and then booked my surgery date by early Nov. I had my bilateral mastectomy and tissue expanders done 31st dec and am delighted with the results so far. I have gone up almost 2 cup sizes and so far they look very pert and round! However the main thing is that now feel I actually have a future! It felt like I had a huge cloud over me and it was always at the back of my mind that I may not have long to live.
I hope that if you end up getting tested that you test negative although hopefully not inconclusive as sometimes it’s just easier to be given a definate. If you are brac1/2 or decide on surgery just know that the the worse bit was the anticipation and I was all over the place before my op. It gives you a sense of relief even after the date is booked. I felt huge relief after my surgery. The results can be really pretty good.
Please know that there are quite alot of ladies in a similar position to yourself that are really happy to help you through it all.
Take Care of yourselves
Katie xx
Hi Katie,
It’s ok, I didn’t think you were stalking me or anything, ha ha!
I can understand you being worried, I thought of you straight away when I read Jackie’s comments about nipples. Your surgeon is a specialist in genetics etc as you say, so he must know his stuff. It seems strange that we’ve all been told different things, possibly because it’s a relatively ‘new’ science. It’s good you’re seeing him soon so he can hopefully put your mind at rest.
I’m ok, I went out with friends on Fri night and was really hungover on Sat and felt mega rough (but at least it took my mind off difficult surgeons!) then today my family came round to watch the football, Cardiff are in the FA cup final for the first time in 81 year, woo hoo!!
Hope you’re ok and have had a good weekend,
Zoe x x
Glad you had a good night friday. I’m sure you needed it!
We went to friends for diner friday and met a friend for lunch on saturday. Was nice but been pretty down over weekend. Hope to snap out of it soon!
Boo hoo where has the weekend gone? Don’t want to go back to work!
Anyway take care and chat soon
Katie xx
Hi katie, zoe and jackie thank you for all the replies.
I’m 30 too - well will be tomorrow. I’ve been advised to have screening from 35 whether or not the gene is there, although the doctors I have spoken to are where my family are from, I’ve moved away and am not sure if they start screening from 35 or 40 where I live. My family is very small so only had my mum and aunt, so there’s no other women to have or not have got it if you get what I mean. Their aunt had it and another aunt may have had ovarian cancer so I’m trying to trace her death certificate so I can find out for sure as that would put me in the category for ovarian screening too, but it’s quite a long process as I don’t know any names so have to start with my grandfather’s birth certificate and work from there. It’s good to here you all being positive about surgery, I think I’d have to do that if I had the option, at the moment they’ve put me as just in high risk and depending on whether they find the gene the risk will either go up and down. It does worry me slightly living in a different health authority to my sister, as for her they were very keen to put her and my aunt’s case forward to the medical genetics department but my GP who I had only just joined basically said what was I worrying about but that she would refer me if I really wanted her to. I suppose she’ll change her tune when she gets the letter from medical genetics and at least the two different hospitals in the two different areas will liase. It’s just the possibilities for screening etc that bothers me. Also I have been trying for a baby but now I’m not sure what to do fo the best, just carry on or put things on hold for a year until I know, I don’t know I guess it’s just a lot to get my head around especially as it’s only 2 weeks since my aunt died and so there’s just so much to take in.
Anyway, hope this message is not too long and rambling, it is good to be able to talk to people who know what I’m talking about.
Take care, Pennie x
Hi Pennie
It sounds like you are having to do a lot of work on your family tree.
It is a shame your GP has adopted that attitude. I also come from a small family and I asked to be referred years ago but I was initially told you had to have 2 1st degree relatives with BC to be entitled to genetic testing. I only have 2 1st degree relatives still alive so basically it meant I had to wait for my sister to get BC. My mum was diagnosed a second time so I went back and they then went ahead with testing. Guys said it was wrong that I was sent away the first time and my extended family cancer history alone was enough to go by. Sometimes you have to fight for your rights so keep asking for screening.
I think if I was you I would continue trying for a baby.
Have a very Happy Birthday tomorrow.
Jackie x