new member looking for help

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hi everyone - been browsing on different support groups for a while now and now taking the plunge to ask for some advise.

my story is that my grandma (both breasts), mum and aunt (and probably great grandma) had either breast or ovary cancer. mum found out she had the bad brca1 gene so i got tested and have it too.

have been getting counselling from the genetics nurse and it seems that surgery to remove the breasts and probably the ovaries is the most recommended. however they also say that even with that you can still get the cancer as its in the genes.

So i am thinking of not having the operation and just going with the screening. but the family are against this and dont understand why i want to keep my body parts. i’ve always had great boobs (don’t mean to sound big headed lol!) and i love them. also haven’t given up on havn another baby.

does everyone go for the operation? is there anyone else that hasnt had the operation and how did there families take it? what advice can anyone give me?

thanks for reading.

J

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Hello stuckhere

Welcome to the forums.

The users of this site have a wealth of experience and knowledge between them and I’m sure they will be along to support you soon.

In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

best wishes
June, moderator

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Hello stuckhere,
so sorry you are in this situation - my situation is different but there will be other women on this forum who can help you from very similar experiences. I had a lumpectomy and then single MX - I loved my breasts, they were my best body part so I can empathise with you - but you know what - one year on I am really lreaning to live with only one breast left, my body is different, but I am still me.
Having said that I feel really strongly, having been through what I’ve been through, that it is only you who can decide - others who love you will want to have their say but its your life and your body so its down to you…thats my bossy old view anyway. wishing you the best and hoping other women with more relevant experience can jump on this thread for you.
bw Nicola

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Hi
sorry you are this situation. My grandma had BC and aunty had ovarian cancer also a few other relatives. I had BC was never offered genetic screening. My sister has regular screeming now.
However only you can make this very big and life changing decission.
Best of luck
Rehana

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Hi all - I agree with happy cat, I too had BC was diagnosed a year ago today had a lumpectomy last march. I made the decision to have a prophylactic bilateral mastectomy and reconstruction as I am the fifth female on my mother’s side of the family to have had premenopausal BC. One of my relatives also had ovarian cancer however when tested for the BRAC1 and 2 I tested negative. I had the bilateral mastectomy last June and have tissue expanders in at the moment these are going to be replaced by implants next month. What I would say to you is that reconstructions are not always straight forward, they can be very uncomfortable. The psychological effects of undertaking this surgery are huge and if you are in any doubt it is not a good idea to go ahead, it’s a very complicated decision that you and only you can take. I must say it’s taken me on an emotional roller coaster but I feel I’m winning. I’m now 49 years old so it was a good time to have it done as I’ve had my children, I’m not sure I would of had it done if I was in my twenties or thirties! I really hope this helps!

,

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thanks everyone thats responded. Its true what you are all saying - its just such a big decision, well it is to me anyway. My friends say to me…its a no brainer - have the surgery …but its not a no brainer to me - I just don’t want to have it done.

i think it would maybe be different if there was a gaurantee that it would ‘cure’ me but there isn’t - although there’s never any guarantees i suppose.

can i ask anyone that has had it done - how long did it take you to make your decision - did you know right away that you were going to go with it or did you take a while to make up your mind? is there anyone out there that was going to have it done and then decided not to? i feel i am being vain and friends are making me feel as if i am putting my looks before my health but i don;t see it like that. i feel it would help if i knew what other women had done to make their mind up.

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hi stuckhere… sorry this is a bit of an essay!

i have a brca2 mutation but no real family history… personal history of two primary cancers one at 37 and one at 40… my mum and great gran also had BC and it was because of this i was able to be tested however the gene comes from my dads side of the family and there is no history of BC there.

i now work as a breast nurse in genetic screening and i know deciding on surgery is not an easy one as i go from yes having the mx to know ill just stick with screening so i can entirely empathise at what a momentous decision it is.

i had lumpectomy on each side in 2006 and 2009 but think i will probably have mastectomy and reconstruction surgery in about a years time…

its a year since i found out i had the gene and straight away i saw my breats surgeon and plastic surgeon and at that time i was really undecided but did kinda concede to what my PS was saying… i thought id just wait and see if i got BC again and then have the surgery but he said if i would consider surgery after BC then i should consider it before BC. i agreed to the surgery but as it got closer to the time to have it done (end of last year) i changed my mind and asked to delay it… i now have to let my breast surgeon know when i want it done and he can put me on his waiting list about 3 months prior to surgery… some people say to me too that its a no brainer just get the surgery but i also have folk in the other camp saying oh its a bit extreme and i may never get breast cancer again so is it really worth it.

i have asked to be referred back to the psychology servise and seen her once and by this time i had kinda decided myself to have the surgery next year after seeing some of my frineds recons and asking how they felt about it… this has made a real difference to me… you might find the BRCA umbrella website of help as the members have all been through this same decision… im seeing my psychologist again in a couple of months and doubt i will need to see her again as i do feel that i am actually getting my head around the whole thing.

i had a hysterectomy 5 months ago and that wasnt such a hard decision as even though i was planning to try for a baby when i was diagnosed the second time i was told the chemo had put me in the menopause so i knew that a baby was no longer on the cards… and as i said before the family history on my dads side there was no breast cancers but was one ovarian cancer in a cousin who died at 45 and as i was 42 i think this encouraged me to have the hysterectomy.

in terms of risk although the surgery cannot reduce your risk by 100% it does reduce it to less than the risk of the general public… without a gene you have about a 12% risk of BC with a gene you have about 80% chance of developing BC but with risk reducing surgery your risk is under 5%.

the ovarian risk is higher in brca 1 than brca 2 around 40-60% for brca 1 and about 20-40% for brca 2 compared to around 2% in the general population however risk reducing ovarian surgery reduces your risk to less than 2%.

some people who have a gene mutation will not get breast or ovarian cancer but unfortunately we cannot tell who these will be… the screening for women with mutations is changing slightly although is subject to funding in your area but they now meant to be offering annual MRI scanning between 30 and 50 and mammo annualy from 40 to 50… obviously screening does not prevent cancer but it helps to find it at an early stage so it can be treated effectively and you no doubt will be very breast aware now yourself.

you dont say what age you are as that may influence whetehr you choose to do anything radical just now… we normally start screening 5 years younger than the youngest diagnosed person… i would say dont feel pushed to doing anything yoru not ready to do and choosing not to have surgery just now doesnt mean you cannot change your mind a few years down the line.

please do feel free to contact me again if you wanna chat about it some more… good luck making your decision.

Lulu xxxx

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Lulu - thank u so much for letting me hear your story - i cant believe there are so many of us. i knew breast cancer was quite common but the whole thing - its not simple - i used to think it was just an operation if you had it and that was that but now there is all this stuff about taking the breasts away even if you dont have cancer- sometimes i wish they’d never had the genetics.

I am nearly 36 and i;ve not yet made the decision to have no more kids - altho not nec wanting anymore either - but would like the choice.

another thing i’m not sure about - how long do people get to make the decision? if i say no - what happens if i change my mind? if i decide to go for it, how long will it be before they do it? does it depend on where you live? so scared of making the wrong decision.

another thing - i admire u Lulu doing the work you do in your situation - not sure i could do that? were you working in that area before u got brca?

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hi again stuck here

no i wasnt working in this area prior to cancer, and i think some folk think im a bit crazy but im very passionate about it and love my job.

in respect of how much time you have to decide… you have forever… if you dont want to have any surgery then that is fine you can have screening regularly… if in 5 years or 10 years or 20 years or even 30 years you decide to have surgery then thats OK.

dont be pressurised into surgery if your not really sure about it… even if you do opt for surgery the waiting list and the whole process can take quite a while… it can be a few months before you can see the plastic surgeon to discuss it and then the waiting list can be anything from about 12 weeks to about 2 1/2 years depending where in the country you are… it also depends on the type of surgery you want or can have… some are more straightforward shorter ops and can be slotted in a few weeks time where others may need two surgeons or more and need the operating theatre for the whole day so can take many months to organise this… if you do decide to have surgery then you have the next delightful task of deciding what kind to have… so more dilemmas to keep you awake at night LOL

i was at a study day with colleagues a couple of days ago on triple negative breast cancer associated with BRCA genes, (i had this the second time) and one of them didnt like what she heard and was telling me i HAD to go and have surgery NOW! its easy for somebody who isnt in the situation to say that but when its actually happening to you its completely different… i did think id have surgery immediately if i was positive when i got tested but i think that was cos i didnt think i would have the gene but when it became a reality i just couldnt go through with it so quickly.

in my job i see lots of women who are undecided some want to wait till they have more children some want to wait till they are nearer the age off affected family members, some want to wait indefinitely and some never want to have the surgery… its very variable as we are all so different… but what you are going through just now is not unusual.

as for making a choice you have to be able to make a decision you can live with… so maybe think about 10 years down the line… how would you feel if you had the surgery and how would you feel if you didnt and what events could occur that may make you feel one route is better than another.

take your time and make the decision thats right for you.

Lulu

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Hi J,
Its not an easy decision to make, I have 2 friends (sisters) who have the BRCA1 mutation, one had a mx aprox 10 years ago (no recon) and the other had a WLE 18 months ago. They were both tested after the second one got breast cancer. One has decided to go ahead and have a double mx and recon, where as the other is going to wait and see, they have both had their overies removed they are both under 45. You have to do what you feel is right for you hun and like Lulu says, you can always change your mind if you dont want to have the surgery at the moment.

I have been tested and have a BRAC1 gene mutation which is non specific - they don’t at this point know if it causes breast cancer or not, but I have joined a study in london to see what they can find out. My genentics team don’t seem to want to test the rest of my family (I’m no4 so far, all surviving) so I am waiting to see my consultant at post rads check up for more information, my breast care nurse is fantastic and is getting me into see a consultant who spends alot of time with the genetics team so we can discuss where we go next.

Lulu, I don’t think you are crazy, I would love a job like yours, I’m one of those people who crave information, and dig into everything. I come from a family of nurses but fancied it myself.

I hope everyone has a good day
Tracey xx

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Hi J, I originally though I’d be happy with just screening before I tested positive for BRCA1 - then 4 members of the family were diagnosed with cancer in a short space of time and I decided to go for prophylactic surgery. However, meantime was offered MRI prior to this which showed cancer both breasts, caught early. Now had bilateral mx and chemo. We’re all individual though. I was never really too bothered about breasts, but my two daughters have very different ideas about what they’ll do if they test positive too. BB

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Hi stuckhere

Thought you might like to know that we’re running a special Live Chat session on 18 May for people who have been identified as carrying one of the known altered breast cancer genes (BRCA 1, 2 or TP53) and who have not had breast cancer.

It’s an online chat session, in the evening, time TBC, where you’ll be able to chat to each other in real time. The session will be facilitated by one of our clinical nurse specialists who has an interest in the subject, but for most people sharing experiences and talking about it with each other is the most important thing.

If you’re interested in joining this Live Chat, please email us on <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%66%61%6d%69%6c%79%68%69%73%74%6f%72%79%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%66%61%6d%69%6c%79%68%69%73%74%6f%72%79%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> to book your place.

Best wishes
Leah

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just wanted to say thanks again to those who have posted comments. i am finding the support here so helpful - wish i had started posting months ago.

also - thanks for the info re the online chat - i have put my name forward for that.

i got a bit upset at work today thinking about things. i was quite surprised because it turned out that one of the women i work with had a similar situation - her family has uterine cancer gene fault and she was tested a while back - it came back negative and she hasnt told anyone about it. but she was also saying that she wasnt sure if she would have the surgery if it came back positive. that reassured me a bit - that i’m not the only one wondering about it.

but although i am thinking about not having the surgery, i am wondering how i will live day to day - thinking how i will function knowing that i might get cancer. will i be able to put it to the back of my mind? deep down i guess i no that no-one can make the decision for me or no what it will be like for me - but it does help to hear the views of other people who have been thro it.