Breast Cancer Now Forum

Hi Tracy Hi Tracy Welcome - you are sooooo not selfish - please don\'t think that. Like you, my mum got breast cancer young - however, after fighting it for nearly 17 years, she unfortunately passed away a year ago. I understand completely the digging the head in the sand and more than that, I totally understand where you are coming from when you say you fear that you won\'t have the gene mutation, but your younger sister will. And I also can relate to how you feel about seeing your mum and everyone around her suffer. There\'s no words to describe are there? I have a 20 year old sister (I\'m 31) and both myself and my other sister, my twin, were diagnosed with the BRCA1 mutation in June this year. My worst fear was that I wouldn\'t have it but my twin would (we didn\'t know for sure then if we were identical) - I would have rather had it that her. And now I\'m terrified for my younger sister - but at least she can follow hopefully by our example if she does end up being diagnosed too. Hopefully, it won\'t come to that for you and your family - but if it does, there is a lot that can be done - it\'s just a difficult, emotional journey in getting there. Sites like this one and the \"other\" one are a great support. I\'m currently at the surgical consultation stage (this Tuesday) to arrange which type of mast and recon I\'m going for. Whilst I\'m not dismissing how I\'ll feel nearer the time - I can honestly say I feel very empowered right now (aside from the dilemma of what type of op to have). Whatever happens - you\'ll get the support, advice and intervention that\'s right for you. Keep us posted. Take care. Bev. xxxx ... View more

Hey all Thanks for posting about your appointment with Mr B, Anne - really helpful. You must be so relieved to have seen him and he\'s confirmed for definite he will operate on you. How long did you get to chat to him for? That\'s really hopeful to hear he said skin and nipple sparing would be ok and the scars wouldn\'t be too bad - even for people with babylons of our size!!! Really pleased it went well. Thanks everyone for your thoughts / posts re my mum. Anne - I had tears in my eyes reading your post. I\'m so sorry you\'ve lost your mum too. There\'s no adequate words to express how you feel is there? Big hug back. Lisa - I\'ve emailed you - it\'s war and peace!!!! You might be there a few hours! Your appointment is on the 26th too? I thought it was the 25th. Mine is at 10.45 am. If yours is at 10.30 am then we\'ll definitely see each other. OH MY GOD - how super!!! I hope we get more than fifteen minutes to chat to Mr B though! I think on that basis, he ought to do our ops on the same day too - then we can share a ward! You too Anne - and anyone else for that matter! Justine - yes, I\'m sure we\'ve spoke on the other site, now. Where are you getting your treatment? Are you waiting to find out if the gene is in your family? I\'m going on holiday on Saturday for a week, so won\'t be posting for a while - take care everyone. Bev. xxx ... View more

Hey Sue That\'s fantastic news - the relief must be amazing. Take care. Bev. xx ... View more

Mum\'s Anniversary Hi all It\'s a year to the day today that my beautiful mum lost her battle to breast cancer. I don\'t know why I\'m posting this really, but feel like I just wanted to mark the day somehow. I\'m determined that my son will not have to watch me get breast cancer either - that\'s why this surgery is so important. My thoughts are with everyone who has lost special people to this disease. Bev. xxxx ... View more

Hi Justine Are you the same Justine on the \"other\" site? I can\'t tell from your post? If so - hello!!!! If not -hello and welcome!!! Either way, really sorry you have lost your sisters - it\'s so tough losing someone isn\'t it? It\'s the first year anniversary of my mum\'s death today. It wasn\'t as bad as I thought it was going to be - but I think about her everyday and miss her everyday. Before the gene mutation was found in our family, I was thinking of having preventative surgery anyway - I don\'t think it\'s that uncommon actually. Take care. Bev. xxx ... View more

Hi Lisa Haven\'t got your email - I\'ve emailed you an alternative email addresss, so hopefully that will get to you. Yes, I googled Mr B too!!!! Ah, bless Jean - the whole service is fantastic. Have you seen Dr Penny Hopwood for psychology? She was really lovely too. I\'ve posted this on the other site too, but I managed to get my appointment altered to 26th September - how fantastic is that? When is yours again? I\'m sure we should all meet up (if people want to) - I know I would love to - it would be amazing to meet others going through the same thing! Bev. x ... View more

Hi again Lisa!!! Yes, I\'ve posted on the other site - there was something wrong with my email address on my profile, so if you can, can you now resend the email, as I\'ve amended my address so all should be ok now (though I\'m away with work for a few days, so won\'t be able to access my personal account). Yeah, I thought about trying to lose weight too, but I think to make a real difference, I\'d have to lose stones as with me, breast weight is usually the last place to go for some reason. I could certainly afford to lose a stone or 2 (I\'m a size 12/14 on the bottom) but it would probably not that make that much difference. Like you, I\'ve always wanted smaller breasts, but I think I wouldn\'t go smaller than a D if I had my perfect choice. It\'s just not me to have small breasts. The positives will be being able to choose different clothes - I can\'t wait for that! From what I can understand about the nipple thing, is that if you attempt to keep them and then they die, it is harder to reconstruct one later. I\'ll look out for your email soon - take care. Bev. xxx ... View more

Hi Anne Wow - I\'m so pleased your PCT is going to refer you to Manchester -that\'s great news. It\'s one less worry to have isn\'t it? Have you made a private appt with Mr B so you can get your questions answered in the meantime? Yeah, Jean\'s a star isn\'t she? My psychology appointment was really interesting - I\'d been dead set on keeping my nipples and she made me think a different way. I\'m not so sure that\'s the most important thing for me anymore. And nipple recon can give some fantastic results from what I\'ve seen so far. I\'m just struggling to get my head around whether to go for tissue expanders or flap surgery. It\'s be really interesting to hear about yours and Lisa\'s appointments, as like you two, I\'m large breasted and I\'m chomping at the bit to find out if subcuteneous mastectomies are available for our size breasts. And if not, where would the scars be? I think, in an attempt to answer your question, that if you had a subcut mast, then your skin would shrink back quite a bit and they\'d put the expander impant under the muscle with a small amount of saline in it, ie. an A or B cup and then over time, fill you up with saline till you\'re the size you want. My sister met Becky Measures recently and she\'s a D and apparently they look amazing. But she was small (ish) to begin with so she has very little scars as no skin was removed. Keep us posted on how you get on - really looking forward to hearing. Bev. xx ... View more

Hi Orienne Thought I\'d say hello - I\'ve seen your post on the reconstruction forum also. I have recently been diagnosed with the BRCA1 gene mutation, I have the same geneticist and surgeon as Lisa (my appointment with the surgeon is 24th Oct) and have very large breasts for my frame - at their biggest they are 36G (as I\'ve had a tummy tuck previously, if I put on the slightest pound of weight, they go straight to my breasts!). So we are all quite similar really! I don\'t think you\'re weird at all for considering not to have a reconstruction - in some ways I wish I could consider not having one, as it would perhaps be less stressful once the decision was made. It\'s so confusing trying to make sense of what type of recon to have. Like you, Lisa - I\'ve made a long list of questions for the surgeon - currently on 23 and still growing! Angela will definitely be able to help you (on the other site) - she\'s lovely and will be happy to talk to you I\'m sure. She pointed me in the direction of a free magazine which discusses all types of b/c issues - it\'s really helpful - www.amoena.co.uk. If you register, as Lisa has suggested - one of my recent posts with Angela is discussing this very issue. Take care. Bev. xx ... View more

Hi Anne Hi Anne - how\'s it all going? I think the reason skin sparing mastectomies with reconstruction using tissue expander implants are supposedly better on smaller breasts is because there\'s less scarring involved as there\'s no need to remove any skin as they can build you back up to your normal (or slightly larger) size. Women with large breasts (I range from a 36E to a 36G depending on where I get my bras) cannot usually be built back up to their normal size by tissue expander implants alone. I think you\'d have to have tissue from elsewhere too. My sister met Becky Measures recently and apparently she\'s gone up to a D cup and that\'s as far as she can go. But she was a B I think to begin with. My sister is a 38C/D I think and she\'s been advised to lose weight if she wants the same surgery as Becky, so the skin on her breasts shrinks as she goes down in size. So, she\'s having a go at that and then going back for a further surgical appointment later in the year. I think my skin on my breasts is beyond shrinking though, since I\'ve had my son, so don\'t think it\'s an option for me. Are you going to ask your GP to refer you for ovarian screening? Is there any ovarian cancer history in your family? Bev. xxx ... View more

Hi Lisa Hi Lisa I\'ve posted on the other site too but wanted to catch you on here also. Really sorry to hear of your diagnosis - it\'s a shock isn\'t it ? Even if you think you\'re prepared. How are you doing? Was your holiday helpful? I read on the other site you have your appointment with Andrew Baildam in October - me too. Hope it goes well. Are you planning on reconstruction at the same time or are you open minded? Let us know how you get on. PM me on the other site if you wanna compare notes as a fellow Manchester patient probably about to have our surgeries at the same time. (You never know, he may do you in the morning and me in the afternoon!!) 😉 Take care. Bev. xxx ... View more

Thanks for the fact sheet! Hi Carrie Thanks for replying - that was helpful. Sorry you\'ve been diagnosed. We\'re quite similar really - my mum and grandma died recently. I\'m currently going through the processes of preparing for preventative surgery. The ovarian issue is the big thing for me and how to deal with it - it scares me quite a lot. Good luck with your advice - let us know how you get on. Bev. x ... View more

Zoladex Hi all I was wondering if any of you know anything about the drug, Zoladex? When I saw my geneticist recently to discuss the implications of BRCA1 in relation to ovaries, he said that there was a drug you could take - Zoladex - that kind of switched your ovaries off temporarily. He said if I wanted to see what menopause felt like for me (as I\'m umming and ahhing about having mine removed), I could have a couple of month\'s worth of injections and that should give me an idea. However, my sister reckons that the side effects are horrendous and don\'t really compare to what menopause feels like (from her understanding from talking to other people). Has anyone here taken it, or know anyone that has? How is everyone doing anyway - I haven\'t had chance to post in ages. Hope you are all ok. Bev. xxxx ... View more

Hi Lisa Hi Lisa - like the others, will be thinking about you on Monday. It\'s a tough day, but at least you\'ll know for sure what you\'re dealing with - no more wondering. You\'re a Manchester girl too (in terms of treatment) aren\'t you? Will you be seeing Professor Evans on Monday? Good luck anyway. Take care. Bev. xxxx ... View more

Hey Anne Hey Anne - So sorry I haven\'t replied sooner - I\'ve been struggling to find the time to switch the computer on, let alone post!! Jean\'s full name is Jean Edney - you can contact her on 0161 611 4223 or email her on Jean.Edney-at-smuht.nwest.nhs.uk. Not sure if you\'ve already contacted them or not. How\'s everything going? My psychology appointment is at the end of this month (to assess if I\'m fit for surgery) and I have my first consultation with Andrew Baildam sometime in September. My twin had her surgical consultation this week however (although with his registrar). Apparently the registrar tried to convince her not to have subcutaneous mastectomies. She said he seemed really keen to persuade her otherwise but didn\'t really substantiate it with anything other than the usual risks. Anyway, she\'s sticking by her guns but she\'s got some weight to lose (as have I) before he\'ll do the surgery as it works better on smaller breasts and we are quite large. I saw Prof Evans, the geneticist, last week. He was so great - he explained things to me in a way that Sheffield never did. Like exactly what\'s wrong with our particular gene mutation, ie. a missing chapter, not just a spelling mistake. And he also went into a lot of detail around risk management and the ovarian issue also. I didn\'t realise that it\'s recommended to have a full hysterectomy if you want the option of taking HRT later for example. It was fascinating and he\'s sent me a two page letter detailing it all. Anyway, let me know where you are with things - sorry for not posting sooner. Take care. Bev. xxx ... View more

Hi Anne Hi Anne Thanks re mum - it\'s still early days, but we\'re getting there. I\'m a twin and we\'ve both been diagnosed with the BRCA1 mutation. However, my sister lives in the catchment area for the same surgeon as Becky Measures and has had all her genetics testing by the same people and has now been referred to the surgeon and psychology before going on the waiting list for exactly the same op. However, I live in a different catchment area (yorkshire), so at first, it looked as though my only option was to go for whatever I was offered. But I told my genetics team and GP that I didn\'t think it was fair that me and my sister (and for that matter anyone) should be given different treatment due to postcode. It\'s not just the surgery, it\'s the screening options too. You can pay £60 and have a breast MRI (which my sis has now done and they arranged it very very quickly - a couple of weeks). They offer 4 monthly ovarian screening and did a baseline mammo on my sis, whereas my hospital won\'t consider it and do yearly ovarian screening. That\'s before I even start on the surgical options. I don\'t want my surgery to be about what my surgeon is capable of, it should be about what\'s best for me, given my physical situation and personal choice. I\'m digressing... Anyway, I\'ve persuaded my genetics clinic to refer me to Manchester instead of Sheffield. Manchester (who have been amazing by the way - Jean the patient co-ordinator is absolutely fantastic and will bend over backwards to get out of area patients in) have so far accepted the referral and made me an appointment with the geneticist, which is later this month. Once he\'s seen me, he\'ll refer me to the surgeon and psychologist and then I\'ll be where my sister is now on her pathway. I\'m about a month or two behind. The only stopping point will be if my PCT refuse to fund the treatment. However, since my geneticist has already made the referral, I\'m kind of seeing that as a \"purchase\", so hopefully it\'s a done deal. We\'ll see - I\'ll keep quiet until I\'m told otherwise. There is a big NHS patient choice agenda - choose and book. So you can choose any surgeon and / or hospital within a certain area. But outside that area, you would have to convince your GP or geneticist to refer you to a particular surgeon / team and then it\'s down to your PCT to fund. My GP told me that you have a clear business case if what your preferred centre is offering compared to your local treatment centre is, ie. increased ovarian screening, MRI\'s, better surgical options, then they will have trouble in turning you down. I\'ll keep you posted on what happens at my appointment at the end of the month. If you want any more info on the Manchester centre, let me know and I\'ll email you Jean\'s telephone no. Take care. Bev. xx ... View more

Well done you! Hi Joolz Well done - congratulations that it\'s over (nipples and lipo aside!). You must be so relieved. Really glad it was somewhat easier than last time. Hospital stays can be horrible can\'t they? Hope you continue to recover well. Bev. xxx ... View more

Hi Anne Hi Anne It\'s just a quick reply - but I wanted to say to thoroughly explore your options if you do go down the surgical route. I\'ve recently been diagnosed with the BRCA1 mutation (although like you, was considering preventative surgery anyway, since I thought I\'d never be able to be tested. My mum died recently and we discovered she had the gene, so that\'s how I found out). Anyway, I\'m currently going through discussions with my potential treatment team and there are so many types of breast mastectomy / recon ops you can have - including complete skin and nipple sparing, ie. hollowing out the inside only. This would not reduce your risk of cancer recurring back in the remaining breast cells as much as a full mastectomy (about 7% risk of recurrance is the current figure), but is an \"easier\" (supposedly) operation to have and for those people who really want to keep their own nipples and are happy to work with those risk figures, it\'s worth looking into. I\'m only mentioning this as it\'s pioneering surgery and not all surgeons will offer it you, let alone mention it as an option - I\'m having to fight to get this surgery by another healthcare provider (although looks as though I\'m winning). When I had my first consult with my original surgeon, she basically wouldn\'t even entertain keeping my nipples, and was very dismissive and said it couldn\'t be done as my breasts are too large. Which is not true -well, they are large, but it still can be done, just with scars similar to a breast reduction. Anyway, I just thought I\'d mention it, since this type of surgery rarely gets a mention and it\'s good to throw it into the mix! Keep us posted on your progress. Bev. x ... View more