my mastectomy after braca 2 results,feel great!

hello ladies, i am 47, had breast cancer 2 years ago, had a wle and node removal, had 6 cycles of chemo, had 20 rads and am taking arimidex.
My mum and other relatives had breast cancer by the age of 45, my mum had it twice, she had it at 42, then again at 60,She didnt really have the option of reconstruction as this was a few years ago now. Sadly she passed away 4 years ago,not from caner i will add, but before she passed away, we had a test for brca 1, we were both found not to have the gene, sadly after she passed away , i was diagnosed with breast cancer, after i had all the treatment for the breast cancer i found out that my mums blood had been tested, and found to contain the brca 2 gene, i was later tested and also found to have it. To cut a long story short, after a year of finishing radiotherapy, i chose to have a bilateral risk reducing mastectomy with expander implants fitted, this was 4 weeks ago. I am healing nicely, have a tiny infection on the wound but antibiotics are clearing it, i have b cups at the moment, will start the have them filled in the next couple of weeks, but what i really wanted to say was, that for me, it is the best decision i have ever made, honestly, i was a dd cup before, but to have some breasts that look good even without to much fluid in them, i was sooooooo suprised that i would feel as positive as i do.I can honestly say that i have had no tears, which i thought i would have had, i have no nipples, but i will have some tattooed at a later date,i hope this may help some of the ladies who are undecided about going ahead with risk reducing surgery.If i can support anyone who may be going through the same thing, please feel free the message me, i dont know what i would have done without this site, take care, Sandrae x

Hello Nanny4,

I lost my mum and grandmother to breast cancer but tested negative for BRCA but opted to have risk reducing surgery too. I was diagnosed this year at the age of 33 and knew that I had to have a mastectomy on my left hand side and opted to have the right hand side removed too. It was a really easy decision for me - I knew that I would not only be happier knowing I’d done all I could to reduce my risks in the future - but also knew I’d be happier not being lopsided. I had the op in October and also had expanders put in (am going to have DIEP at an opportune time) and have also gone from a DD to a B cup and am really happy with my neat scars. I, too, found it fine! No tears or trauma. They look good! But I am looking forward to getting pumped up a bit and also to my reconstruction, after which I will have nipples and tatoos done too.

I am going with my sister to see a surgeon later on this month as she is also considering risk reducing surgery - but it is a much harder decision for her as she does not already have a diagnosis so would be having 2 healthy breasts removed.

x

Hi Nanny4 & Sandytoes
I’m pleased your surgeries went well and you are both happy with the results. I found out just over 2 years ago I have inherited the faulty BRCA2 gene. About 15 months ago I had my ovaries removed and I should be having risk reducing surgery and reconstruction with expander implants next month. I did want to have DIEP reconstruction but I was told I wasn’t suitable for this type of surgery so it’s really reassuring to hear your positive comments about the expander implants. Can I just ask how long you were in hospital for ? Did you have drains in when you came home ? What was the pain like ? How long was the op ? Were the implants inflated during the op or how long did you have to wait for the first inflation ? How big are the scars ?How long will it be before the expanders are replaced and you can have the nipple reconstruction and tattoos ? How long were you off work and unable to drive ?
I’m getting quite nervous now about the op but I know I’m doing the right/sensible thing . Fortunately I’ve never been diagnosed with breast cancer but I have had a few scares so I’m sure it’s the right decision for me. I just want to do all that I can to reduce my risk and get on with my life. Since I found out about the gene not a day has gone by that I haven’t worried about getting cancer.
Hopefully you won’t mind answering my questions( sorry there’s so many!) Thanks very much
Take care
Debra x

Hi Debra,

I will be having a DIEP at a later date, so the expanders are temporary for me.

I was in hospital for 1 night and my surgeon didn’t use drains, but I believe most do. I didn’t really have pain - more just an uncomfortable, tight feeling across my chest like someone was sat on my chest as your muscles are pulled forward but it was a bit sore for a week or so when I tensed my chest muscles. It caught me out quite alot as I kept doing things and then forgetting that it involved my chest muscles that were quite sore for a couple of weeks. For example, I got stuck in the bath as just didn’t think that you haul yourself out using your arms that then tense your chest muscles! I had to flail around onto my front and then wiggle onto my knees. Not very dignified…!! Ha! I had both done at the same time and I was under for 3 hours. My expanders were inflated to a size B while I was under and I haven’t had a further inflation yet as I had radiotherapy afterwards but I could have had them inflated about a month after surgery if I hadn’t had rads. I’m seeing my surgeon on Thursday and hoping for an inflation then! My scars are an inverted T shape with a line running under my breast - but very neat and have healed really well. I’m waiting until I’ve had my DIEP before having the nipple reconstruction and tatoos as there’d be no point for me to have it done before then as they’d just need to be cut open again. I guess for you you’d need to wait until you were expanded to the size you wanted to be. I’m not working at the moment, but was told to take a month off work. If I had been working I reckon I could have gone back after a couple of weeks. I think I was driving after a couple of weeks too - the delay mainly due to my axillary lymph node clearance rather than the chest area.

Ummmm…trying to think if I have any top tips for you! Front opening pyjamas are quite handy as they will come and check the site quite often and it saves you from having to lift your arms in the air. My surgeon recommended a tight non-underwired bra and said it reduced the swelling. I wore one every day and night and never had a problem with seromas. I think that’s about it…

It’s a brave decision you’ve made. A much easier decision when you’ve already had a diagnosis. I’m going to see a surgeon with my sister in a couple of weeks as she is considering preventative surgery so I would be really interested in hearing about your experience after you’ve had it done to see how you feel about it.

If you have any other questions, just let me know.

x

Dear Debra

I am 41 and found out I have the faulty BRAC2 gene in 2008. I had a low grade breast cancer in 2007 which I found when my second child was only 4 months. My sister died of breast cancer in June 2010 - she was 47 and also had the faulty gene. I had risk reducing surgery and expander implants put in 2010. I am so glad that I had the surgery as the breast cancer worry is almost gone. I want to give myself every opportunity to be there for my children for as long as possible and not leave them too early like my sister had to.

I would recommend the surgery, it was a little painful during the expansion with the expanders under the chest muscles and it does feel tight until you get used to the sensation but nearly two years on, I have forgotten about how it felt before implants! I was a small B cup before and now I am a C cup which is great. You have to make the experience into as positive one as possible and get the breast size you want! I had the expenders replaced with permanent implants after about 6 months and nipples tattood 6 months later. The breast which had radiotherapy in 2007 is a little hard but overall I am happy.

On another note, I am having my ovaries removed in a couple of weeks time so I actually wanted to ask you a question too (or any one that has had this surgery). I live in Dubai (am coming to the UK for the surgery) and so do not get anything like the support and opportunity to talk to doctors like you do in the UK. I am doing this to prevent the risk of Ovarian cancer which is quite high for BRAC2 as I am sure you all know. As my original breast cancer was not hormone responsive, I am able to go on HRT which to me seems sensible as a woman in my early 40s. Debra are you on HRT? and if so what kind and what is your experience of it? If not how did you find going having hormones to no hormones?

I woudl really appreciate any feedback from anyone that has had their ovaries removed as a preventative measure.

Thank you

xx

Hi Sandytoes & Emary
Thank you both for your replies.
Sandytoes, thanks for answering the questions I had regarding the surgery and for tip about front opening pjs. I’ve got an appoinmtent with the breast care nurse again next week and hopefully I will be given a date for surgery . When I saw the plastic surgeon in December he thought it would be February. I will certainly keep in touch and let you know how it all went and hopefully it may help your sister in making a decision. It’s not an easy one to make! I always said I would definately have surgery if the genetic test came back positive but when it did and it was a reality it wasn’t so easy. It has been over 2 years now since I found out about the gene and in this time I’ve changed my mind a few times and thought I would just have screening. I’ve been fortunate to have yearly MRIs and mammograms but I feel almost like I’m just waiting to get cancer. My worry is that neither MRIs or mamograms are 100% effective and something may get missed. I’ve also had a couple of recalls which turned out to be nothing but it was worrying at the time and all I kept thinking was why hadn’t I had the risk reducing surgery.Anyway, I’m ready now for it and know it’s the right thing for me. I wish your sister well and I hope your DIEP goes well in the future. xx
Emary, Thank you too for sharing your experience.I’m really sorry to hear about your sister and totally understand why you had risk reducing surgery. I’m a B cup too and at the moment I’m thinking I will stay that size but I may decide to go a bit bigger!
I had my oophorectomy in October 2010 when I was 39. It was keyhole surgery and I was in hospital for just 1 night. I felt pretty rough straight after but I think that was mainly due to the anaesthetic which made me really nauseous.I’d say it took me about 3 weeks to recover fully and I started HRT about 5 weeks after the op. Initially my GP prescribed a cyclic HRT which meant I had bleed every month like a period but when I went for a post op at the hospital I saw my surgeon who said I didn’t need to take this type and he prescibed a continuous combined HRT and I’ve been on this ever since. I take it daily in tablet form as I did the other HRT but there’s no bleed which is a bonus. The surgeon prescribed a 1mg dose and said that if I suffered bad menopausal symptons I could try the 2mg version. I can honestly say though that I haven’t really had any, no hot flushes, night sweats, dry hair ,dry skin etc. The only thing I can say I’ve noticed is a lower libido. I’m not sure if this would improve if I was to try the 2mg dose maybe I will mention it to my GP next time I go. I have been told I should take it til I’m 52. I have no regrets having the op. My children were 14 and 11 and I didn’t plan on having any more. My husband had already had a vasectomy. As there’s no effective screening for ovarian cancer and it’s very difficult to treat I didn’t want to take the risk. My sister who also has the BRCA2 gene is due to have the op too in a few weeks. She’s 44 and doesn’t have children so it has been a much harder decision for her.She has had IVF several times unsuccessfully and having her ovaries removed meant she had to accept she was never going to conceive. She has come to terms with this now though and is going to have the surgery.
All the best any way with your op. If you have any questions just let me know xx

Debra x

Hi emary

I’m also brca 2 positive and found two years ago after getting a second breast cancer (and now have a recurrence). I had a bso and hysterectomy 15 month ago and had been debating asking for hrt in the summer when I got the recurrence but as I haven’t had mastectomies I dont know if my surgeon or onc would have been too keen as my first cancer was strongly hormone positve, the 2nd was hormone neg as is the recurrence… Pretty sure surgeon would have been happy for me to have hrt as he is quite pro it and at some point I may still ask for it, but not 100% certain now.

I had been contemplating mastectomy later this year as it would ave been three years since second diagnosis in may but didn’t quite make it that far and surgeon not keen for me to have mastectomy surgery just now so he can keep an eye on the area I had the recurrence as its in the chest wall so doesn’t actually appear on mammos and think if I had reconstruction it could obliterate the view with other scans, like ultrasound and CT… Iv not ruled it out completely but have ummed and ahhed over it for the last two years so it’s actually quite nice at the mo where I don’t have to think too much about what I want to do.

Lxxx

I had the genetic testing done and it was found that I had a ‘variant’ gene on the Braca 2 strand.

My cousin who also has had bc 2 years ago with exactly same diagnoses - multi focal - 100 % ER + (seems a bit of a coincidence) and her Mum had ovarian ca at 65 years old has just had her blood taken yesterday as they are going to send it to the Wessex labs to see if she also carries this gene then it will have further testing to see if it is a ca causing gene (8 weeks) which is I suppose quicker than my initial testing. Hoepfully this will help others who have this variant, because if I had not pushed it forward it would just have been left at that.

My next thoughts are if I should have another mastectomy and reconstruction. Are there any ladies out there who have not had reconstruction done as I would totally appreciate you thoughts please.

HI,
So my braca 2 came positive… My mom and two sisters have already been diagnosed and cured in the past 16 yrs. Now I need to decide weather or not to undergo a preventive surgery… or should I say surgeries! Its not easy when you have not been diagnosed yet. Im now almost 41 and my doctor says its the best time to get my ovaries removed and a bilateral mastectomy with reconstruction. After reading you posts I believe it will be the best decision to take. Any suggestions? Oh my… I’m so overwhelmed and need encouregement right now. I would do it for my family, I have three daughters (16,13 and 7) and I want to be there for them for a long time.
Thanks for this forum, its really helping through tough times. Decisions decisions!!!

Olga

Hiya

To be honest I think it is a real chance and benefit to actually be able to have surgery to prevent cancer before it appears. I never thought to get BC and here I sit with a large tumour, nodes involved, anxcious re secondaries. If I could turn the clock back and have all sorts removed to prevent to get to where I am now, I would do it. Think if you don’t do it and you get cancer, would you wish you would have done it? I bet you would, so that would answer it for me if I were in your shoes.

Love and hugs,

Christine xx

Hi Lancslass,
I had mx in December with no recon. I wanted quick simple option and knew the door would not be closed if I thought of recon later. My main concern was getting through chemo and rads before asking my body to take any more.
I’m 61 and even at that I’m finding it hard to look at my changed body. If you’re younger you need to think about your morale as well. I have no problem going out with my prosthesis in but I can’t let my husband see my body as it is now ( to be honest, he shows no interest in the reality of my illness - he takes great care of me but this is not the body he knew and he is much too squeamish to be faced with it)
Only you, with advice from nurse and doctor, can decide about reconstruction. I will certainly think about it when my treatment is done and I can bear to ask about my prognosis.
Best of luck in finding the solution that is right for you.
hugs,
Kathleen

Hi Olga

It is a very personal choice but our team should have discussed your risks of breast and ovarian cancer… Risk of getting breast cancer is about 80% chance you will have developed BC by age 80 and between 20-40% chance of ovarian cancer… The risk of BC is highest between age 40 and 60 and OC is highest over age 60, but having your ovaries out when you are still premenopausal is found to be the best time to prevent OC.

There is no screening for OC so for many people with brca1/2 will opt to have their ovaries out.

With BC there is screening involving an annual MRI and Mammo it doesn’t prevent BC but would hopefully be able to identify it at an early stage… Some people know from the outset exactly what they will do but for others it can be an extremely hard decision to make.

Lulu x

Hi Olga

I’m going through the same as you right now! I got the news I had a variant B 2 gene just after xmas. My sister was tested at the sametime as she is clear. Just to give you a bit of background… I feel I have lived with BC all my life even though I have never had it. My grandmother died when she was 33yrs - chemo of course was never around then. She had 3 daughters (one being my mum) - all three daughters developed BC, my mum 20 months ago, sadly she was actually diagnosed a year to the date of losing her middle sister to BC…so so sad for our family. We only had a breakthough on this gene about 6 months ago when it was found in a few other families and they were then happy to go ahead with testing the rest of the family. So there we are in a nutshell…all women in my family have developed BC and I’m the first (or the next) in line to have the option to take risk reducing surgery. For me, it really isn’t a hard decision to make, I’ve seen the cold face of BC and I really hope not to see it in our family again. I am hoping that my surgery is going to take place this September and then when I turn 40 ish I’ll have my ovaries removed.

These decisions are massive to make and do need time to process and take on board. This forum is amazing and the woman that write are an inspiration. I found it very useful talking to a 121 supporter Breast Cancer Care can match you with someone going through similar situations as you…although interestingly there wasn’t a true match for me but the 2 ladies I chat to are amazing.

All I can say is somedays I feel people like you and I have an amazing chance to prevent this (as best as we can - we all know nothing is fullproof!), other days it seems rather drastic and somewhat dramatic to be taking these steps…it all just depends to my mood!

Good luck Olga it would be lovely to hear how you get on.

x

My cousins blood results have come back and she doesnt carry the rare variant that I have so back to square 1 !! It seems so strange that we both developed multi focal BC at near enough the same, and that we were so both strongly 100% oestrogen. My Aunty, Julies Mum passed away with ovarian which is another strange link?

I am going to speak to my oncologist in May to see if she can guide me further.

x

I’am 19 and going through the bRACA 2 test at the moment my cousin has just been confirmed as braca2 positive and my mother grandmother and auntie all had the gene. My cousin is opting for the preventative surgery and has been told she can only go up to a C cup despite being an E cup currently do you not feel you have lost anything by going down in size i just feel if i have to face this option it will take a massive toll on my self confidence.

X

Hi, i found out last month i hve BRCA 2 cancer gene and it has been suggested i have double mastectomy. My mum is due to have the surgery in april and had hysterectomy last year.I’m only 27 and not in a relationship so really struggling with the thought of he surgery.
I think deep down i know i have to do it so not to put my life at risk so hoping that chatting to some people who have already been through it and come out the other side will give me the confidence i need.

xxxxx

I think for women in their teens and twenties it can be harder as you don’t fit the criteria for screening which starts at thirty.

Although nobody can predict if you will get cancer, five years younger than the youngest person affected is when your increased risk usually starts so if your relatives were in their 40s it gives you a bit of leeway.

Most people with faulty genes do not opt for surgery but it’s becoming more and more common so you will find lots of support out there… Try the national hereditary breast cancer helpline, brca umbrella, and force websites and brca sisterhood Facebook group.

Lulu x

I went to the Geneticist today and had blood tests for Braca 1 and Braca 2 and was told that if they came back ‘normal’ I would then be asked to take part in a Braca 3 trial as they believe there are other faulty genes which might account for the prevalence of BC in families. The test results take around 3 months seemingly and they will send the results in the post.

I too feel for the younger women who have to make the decision. I have two daughters of 30 and 27 who are in trepidation of my results. I too have a strong family history of BC and so far everyone who has had this horrible disease has unfortunately died from it - my 45 year old sister sadly just 3 weeks after I received my diagnosis.

On a more positive note I think that reconstruction techniques are changing and improving by the week though and soon people taking this option as a preventative measure will undoubtedly be able to get great results.

Jan
x

Hi ladies

I posted earlier on about my family history of BC. Just to re-cap our family has a variant in the BC 2. GG died at 33 and all her daughters had it, one now deceased. I’m the next relative in line. After a long-awaited breakthrough in the gene I was tested positive.

I’m 33 this year and I’ve opted to have risk reducing surgery. I know it is a hard thing to come to terms with and as my breast nurse said…‘we are brave ladies, we aren’t reacting to a tumour, we are acting of statistics and that takes guts!’… For me that really is no choice all of my female family so far have had BC and I don’t intend to be the next!

I met for the first time on Thursday my surgeon - this felt like a massive weight had been lifted as I truely felt I’m now on this journey moving forward and doing something about it…I’m not very good at waiting!!! We were able to discuss the type of reconstruction that would suit me and how long surgery, recovery and generally getting back to normal would take. I did have a bit of a rain check on my expectations - there is no quick fix solution to this and to get the reconstruction done does take time.

All I wanted to say to those other younger ladies out there is we have an amazing opportunity to prevent (as much as we possibly can) getting what our family have had to have. I’ve had an MRI it wasn’t much fun and my thoughts on screening are that although you get early warnings - screening is not a preventative.

My next appointment is in April with my breast nurse we are going to look at some pictures of boobs…!

Good luck to those making this decision and happy to chat and answer any questions you may have.

x

Hello ladies,sorry I haven’t been here for a while ,I hope you are all doing well all things considered,I am now nearly 4 months post bilateral risk reducing mx,and I can honestly say I have never looked back.for me it was the best decision I have ever made,I feel no less of a woman,which I must admit I thought I would,I am due to see my surgeon next week,where I will be put on his list to have my permenant implants fitted .I wanted to say that I was really an E cup before and am now a D cup,I feel much better because before I had larger saggy breasts, now I have pert comfy breasts.I had my implants inflated 4 times,I think I had 400mls in total,not including the amount that was put in during my surgery.I hope everyone who is having to consider risk reducing surgery finds their decision a little easier to make.take care,Sandy x