Should I have preventative surgery?

Should I have preventative surgery?

) I too have a strong family history of breast cancer, my Mum died when she was 43 (and I was 9) with breast cancer, my eldest sister also at the age of 43 with breast cancer, and my next sister at 49 also with breast cancer. Although I was being screeened regularly from the age of 35 as I was fortunate enough to be on the ibis trials at the time, so I was able to have regular screening at a fairly young age, but that still did not stop all the worrying, so when my sister was diagnoised back in January 2002, and her cancer came back in march 2003, I decided that I would have preventative surgery, it was too much of a coincidence that my Mum and both sisters had breast cancer so I decided in September 2003 to have this done, and I can honestly say that I have not regretted it for one minute, because of the strong family history, I was able to have surgery straight away, and did not have the genes test, as I felt that I could not wait 2-3 years for the results, my sister had the genes test before she died, and just before christmas last year we were given the results that she had the brca1 gene. I to this day have still not had the test, and am now waiting to have my ovaries removed, before I have the test, as I feel that this would be my way of coping if I did have the gene, knowing that I have had all the preventative surgery that I could have had. My niece (my last sisters daughter that died had the test done and it came back negative, we are now waiting for my other niece (my eldest sisters daughter) test to come back on the 16th August. That said I have been told that if my result (when I do finally have the test done) come back negative than my own daughters will not have to worry (i also have an auntie and cousin who had breast and ovarian cancer) I personally think that you have to do what you feel is right for you,. I could not live with the constant worrying and checking, and to have to go though what my mum and sisters had to.
I feel that a hugh weight has been lifted off of my shoulders, and even if my genes test comes back negative, and although I have had surgery, I for one minute do not regret my decision as it was right for me at the time.
I hope this in some way helps,. and if I can help you any further please do not hesitate
Sandra

i do not have the extensive fmily history history that you have but i too watched and nursed my mumthrough 5 ops and then fianlly to the end which in a way was arelief for her, but i have no other rels with the disease so am ot considered high risk i have an apppointment on wed as have a lump but still had to wait 13 weeks but i too feel that if in fac ti know i have made the decison that if they say yes it is i want both off and if it is neg i wan tmy options explained cause still dont know if at my age with kids to raise want a ticking time bomb,

hope you get the help you nee good luck

Hi Anne No I dont think that you are rambling at all, all these questions that need answering for such a serious thing to do I really wish that I could have spoken to someone in the same position as me before I had my preventative surgery, and I will try and help anyone I can.

I did not have reconstruction at the same time, because I just wanted rid of my ‘boobs’ but looking back on it now I wish that I had, 2 1/2 years later, I decided that I could no longer live with the prostectics because I found them really hot and heavy especially in the summer, so after I had been on holiday last year, I decided to go for reconstruction (i was told at the time of surgery that I could go back anytime I wanted for reconstruction although I had been dead set againts it) I wrote to my consultant, and he said I was the last person he expected to hear from saying I wanted it done. The only reconstruction that I could have was becker implants, filled with saline, this involved having the operation, and the implants being put in and a valve being inserted that had a tube attached that fits under your skin the implants were slightly inflated with around 60mls of saline in each side, and then over a period of weeks, more saline is put in via the valve, this has to be done like this to allow your skin to stretch, its quite amazing really, I must admit slightly painfull at first, but now I am very happy with the results, (have now last week finished with being inflated) and have a bigger pair of ‘boobs’ and people that dont know me done know any different, it has given me back my confidence, but I would say to you think long and hard about having reconstruction immediately, as there are more options available for you, as I had left it so long I could only go down this route.

You should ask the breast care nurse when you go to the hospital to show you some pictures of reconstruction, or the consultant they should be able to show you quite a few.

I know what you mean about feeling like you have / had breast cancer, I know that feeling only to well, but I can honestly say that since I have had preventative surgery, the fear has gone, my consultant told me that I had less chance than any average woman of getting breast cancer now, which to me is what I wanted to hear. I do feel more in control now that I have had it done, and will feel even better once I have had my ovaries removed, then I will go for the genes test, so that if this comes back positive then I know that I have had all the preventative surgery that I could.

I can assure you that I also went round in circles, before I came to my decision, but for me it has been the best thing that I could have done, I am fortunate that my 3 daughters are now 16,17 and 20 so I have had my family, and I also wanted to be here for their weddings etc…

See who’s rambling now…

I dont mind how many questions you need to ask, I will always try and help you with as much information as I can, I know from experience that this is a scary road to go down, and I just wished that I had had someone to answer my questions so I will gladly help anyone I can.

Sandra xx

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

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

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.

Take care

tigger

Hi Anne,

Hope you are feeling better.

I too am 32, my mum had breast cancer too when I was 25 and she was 52, fortunately hers was caught very early and touch wood has been fine ever since (fingers crossed). Due to family history, she had a genetic test and after two years we were told that a fault had been found. (BRAC2) The test being there for whenever I wanted it. I blocked it out of my head until I was 30, I thought by that time I would be married, maybe with children and be in a better position to decide what I wanted to do, I had been told to have children as soon as possible. That was un realistic for me and still is, having not met my prince ! When I was 30 and went for my first mammogram and breast check, I thought I should start to consider things. So for the last two years I have been soul searching, in the meantime a close friend has had cancer (not bc) which made me think I don’t want to go through it if there is another way. I saw my genetic counsellor in January and decided I wanted to start the process, initially waiting to see the surgeon first before the test. Since I saw the psycologist I changed my mind. I am going for my blood test tomorrow, and should get the results in 3-4 weeks, should the test be positive, I will have 85% chance of BC - Scary ! If positive (and I have convinced myself it is) I will definately be having surgery and recon as soon as is possible. I am in the Manchester area and will be seeing Andy Baildon too, and probably will opt for expanders and implants if possible (as per Becky) Anyway thought I would share my story with you and hopefully let you know that you aren’t going through it alone, and if you want to chat feel free to drop me a line.

Don’t worry about the questions, it is important that you ask as many as you need to and get all the information you need. The best info I have had, has been through this site and from the team in Manchester.

Keep in touch
L xx

re manchester referral Hi Anne -

Contact details for Manchester Family History Clinic / Genetics Service can be found at

smuht.nwest.nhs.uk/az/showentry.asp?id=586

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:

optionsforbreastreconstruction.com/

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 -

tigger

Hi Anne,

Hope you are ok, went for my blood to be taken today, so feeling anxious about the results, going to try and forget about it until the day of reckoning ! 21st August ! 1.30pm !

The Manchester team are fab, although I imagine that other area’s are just as good. I will be seeing Andy Baildon if I need to, apparently his waiting list is 8-12 weeks, I was told today.

The site is extremely useful and I have really learnt a lot from it, looks like it is helping you too.

Keep in touch and keep posting, the more info you have the better.!

L xxx

quick question answered Hi Anne,
Sorry for the delay in getting back to you, have just come back from a lovely 2 week holiday in the sun, feel all refreshed now (till Monday morning, when I start back to work again…lol)
In answer to your questions, at first I had the saline injections every 2 weeks, then it was reduced to every 4 weeks, and now I am at the size I like (i think) I do not need to go back for 2 months, the injections vary as to how you feel comfortable with the amount that is being put in, the first day feels a bit uncomfortable but that soon passes. I do not need to have replacement permanent silicone implants, as I have been told that the becker implants I have should last me a lifetime.
Hope this answers you questions, any more dont hesitate to ask.
Sandra xx

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

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

Hi Again Bev,

Think we need to get a private chat going ! Otherwise both these sites are going to be the Bev and Lisa Show !

I was a bit worried about size, I am size 10-12, but my breast size is 34e - If I lost a stone I would still be dd though and I can’t lose any more than a stone.

I have always wanted smaller boobs so am seeing this as a chance to get what I want out of it aswell as the obvious preventative measures, I haven’t been told that there will be a problem in making them smaller using the implant method, they would just take some of the skin away when they do the recon ? I suppose I won’t know more until my appointment with Mr B. I am hoping for a D cup. Not sure about keeping nipples or not yet, want to know the risk factors first, although might be nice to have a new pair of those too !

Anyway, speak soon
L xx

Hi Hi Annie,

yes things are certainly moving on for me ! Positive result so on with the next stage !

I too am confused about size and nipples, interesting that you say that the manchester procedure is different in that they scrape (ouch) the nipples. I would like to be smaller (34e) and would like I think to be a d cup. I would like to keep my nipples but not at a big risk, so will see what they say.

Will you let me know how you get on when you have seen Mr B, I think I will see his registrar but I am not sure yet I didn’t ask. Are you seeing him this week ?

Good luck anyway and keep in touch. I am amazed at how many girls in our position are going through this, so it does really help me to chat on here and the other site.

Take Care
Lisa xx

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

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

This is becoming a habit ! I have resent my original email to you so hopefully you will have it, when you get home.

So many questions, my head is buzzing with it all. It is funny that there are a few of us in so the same situation waiting to see Mr B. It would be funny if we all got our op’s at a similar time. Wonder how hard it would be for us all to meet up sometime. Maybe something we could look to do through the other site anyway.

I was talking to Jean this morning, bless her she has squeezed me in for a mammogram the same day I see him (I was supposed to have one the week earlier) saves me going back twice, she is so helpful and lovely. She really was singing his praises, saying I couldn’t be in any better hands. I have googled him tonight, too, he does a lot of campaigning and developing pioneering procedures so makes me feel better.

Anyway speak soon no doubt !
Take care
lisa xx

Just wanted to say hi to all you girls on here.

I am considering preventative surgery sometime within the next nine years or so. My mum was diagnosed 3 years ago with dcis aged 52, and has lost 2 sisters to bc aged 46 & 49. My youngest aunt was diagnosed at 40 so I know as I get nearer to that age my risk factor increases even more ( I am 31 now). Mum has been tested for brca1&2 but no fault has yet been found. Because no-one had ovarian cancer in our family I will not be eligible for routine screening for that. I do get very nervous because I have (very lumpy breasts) as the doctors have told me, so think finding a definite lump would be unlikely. I start screening at 35. We also have bowel & prostate cancer in the family.

take care
love
Justine
x

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