Test Results Today - Bad News

Test Results Today - Bad News

Test Results Today - Bad News Hi All,

Got my results today - you may have guessed - positive I have the BRAC2 mutation !

My appointment was at 1.30 - longest morning of my life ! My mum and my friend (suzi) came. I did insist however on hearing the news alone, selfish maybe, but I just wanted a minute. I wasn’t kept waiting more than 30 seconds before my counsellor came to get me, I could see it in her eyes. We sat down and she said “Lisa you have the gene fault” and showed me the test sheet, I cried and she had tears in her eyes too. I had a little cry and then my mum and friend were brought in. Mum was very upset and Suzi just couldn’t speak. I did consider throwing myself on the floor and having a tantrum but managed to restrain myself.

On saturday I had recieved my appointment to see Andy Baildon to discuss surgery, the appt was requested before I had the test as initially I wanted to see him first, so when that arrived I thought it was fate that I was going to get a positive result. I was right - unfortunately. I am sure that I will feel better once I have discussed my options and what sort of surgery I will be having.

I don’t know how I feel, I just feel a bit strange like it is happening to someone else. I stand by my decision that I want surgery as soon as possible. My counsellor has urged me to take some time out to reflect. I don’t need that though. There is no way that I can live with the thought that I could get BC. I know I might not get it, but that is not a risk I am willing to take. I have a choice and feel lucky. I am a positive person and people think I am brave, I don’t see it like that though, I just think and feel it is something I have to do. Of course I am scared and worried and that I am going to have to tell people. I will be ok though I know that.

Slightly dissapointed that I am now not going to buy the new underwear set that I had my eye on which was going to be my treat. But I am now going to wear all my best underwear for work, as otherwise I won’t ever get my wear out of it. I want a perky small pair.
I did always want a reduction, (I am currently 34e) a drastic way of getting one, but never the less, every cloud has a silver lining and all that.

I am rambling now so I best go.

Thanks for all your messages of support, it does mean a lot and it really helps for sure.

Speak soon
Lisa xxx

Hi Lisa,

So sorry to hear your results - I was thinking of you all day and really hoping they’d come back negative.

After having breast cancer myself, and finding out I have the faulty BRCA1 gene, I wish I’d been able to have a test earlier, so that I could have taken steps to avoid what I’ve been through over the last 2 years. Having the faulty gene doesn’t mean you will get cancer, but I do undertand you wanting to do all you can to avoid it.

Take your time making your decisions - and talk to as many people as you can. And shout if you have any questions for us here.

Hope you’re feeling OK - take care.

Love
Sue
x

lisa Hi Lisa,sorry you got this result, I have the braca1 faulty gene,read my profile, and have had numerous ops. All I can say is take it one step at a time.

luv ruthine

Hi Lisa,
if you are worried about the underware, then dont be, there are LOADS of lovely mastectomy bras out there.
I had my preventitve double mastectomy 3 weeks ago and am amazed at some of the lovely bras around. Marks and Spencers now do a post op range, and are very affordable.
You will come to terms with having the gene, i know when i found out i decided not to be negative but look at it in a positive manner. I kept thinking “how many women have the chance to know that they are definatley at risk”, i am sure any woman would agree that if they had the chance to find out if the carried a faulty gene, they probably would.
Take your time with any surgeons you meet, and find out all your options, and dont worry about asking to see a different surgeon for more surgery options, as no 2 surgeons agree on what is the best surgery procedure for you!
I feel very relieved now its all over for me, having my breasts removed was the easiest decision of my life, i will sort out my ovaries and womb in a couple of years.
Good luck and keep your chin up
Angela
x x x

Hi Lisa I was thinking of you yesterday and wondered how you were getting on, and I’m sorry it wasn’t a better result for you.
We’ve chatted on my posting about preventative surgery and you know this is something I’m looking at, so anytime you want to chat please get in touch. I have an appointment in Sept with the surgeon so should know more then.
I’m in slightly different circs as I haven’t had the genetics test as I don’t qualify, and they couldn’t find the BRCA fault in mum’s DNA when tested, but the Genetics team have told me not to get too hung up about exact percentage risks as they do consider me to be at high risk in relation to women of
my age in the general population. With 4 cases of breast cancer in
relatives with an average age of 50 the risk could be up to 40% that I carry an as yet unidentified gene fault inherited from my mother.
With regards to the testing they could have missed a BRCA mutation on current testing or it could be they tested the wrong genes.
Alternatively, the cancers in my family could be due to multiple
factors. So impossible to be more exact about mine - which leaves it a whole lot of `what if’s’. I still feel this is something I need to do though, with or without knowing, as I can’t take the risk that what happened to mum and others in the family will happen to me - especially knowing I could’ve done something about it.
I’m sure you’ve gone round and round in circles, just take your time though, its a bit different to hear something in black and white, but it might make your decision making clearer in a weird way?
Take care of yourself,
Anne
xxxx

Hi all,

Thanks for your msg’s and kind thoughts.

I have had ups and downs over the last few days and today is a good day.

I am going on holiday tomorrow so will reply properly and let you know how I am getting on when I get back in a week.

Take care
Lisa xx

BRCA2 Hi Lisa

Sorry to hear that you have tested positive. I hope you had a great holiday (by the time you read this) and that you didn’t think about it too much while you were away - although very difficult not to I suspect.

I’m the same age as you (32 in November) and my mum has also just tested positive for BRCA2 so my turn next! We are working with Dr Tutt - from Guys I believe. He’s coming down to Worthing to meet with my mum and I to discuss everything so we are at the very early stages. Read my mum’s profile if you want to learn a little more about us.

It’s a shame we have to be posting on this forum; the whole site in fact but it is reassuring for the likes of you and me who are just starting on the path of preventing this disease ‘getting hold of us’.

Whether I have the mutated gene or not, I still have a very strong family history of BC in my family so I’m hoping they will screen me from 35. I’ll let you know how I get on. Is it roughly two weeks that you have to wait for the results? I haven’t even had blood taken yet so I guess it’s the counselling stages first. Could you fill me in on your experience of the procedure from the time of your mum’s test to yours - how long does it all take, what do you have to do, who do you see?

If this is all too much for you right now I totally understand. I hope you are keeping well.

Best wishes

Kim

For Lisa Hi Lisa

Just read the posts on this tread and I’m very sorry to hear you have the gene!

May I ask you how long did you have to wait for the results from the 1st initial test?

I’m worried I may have the gene, however there is no family history, and I am the youngest of 5 daughters and the only one with BC which was dx in Oct 1998.

Any info would be helpful

Thanks

Julie

Hi Hello, im also sorry to hear your news, just wondered how you ‘qualify’ for test? Mum had BC last year and had lumpectomy chemo and rads now on arimadex as couldnt get on with tamoxifan, i dont think anyone has spoken to her about having the test, do you have to ask or is it something that they will ASK you if you want?

Thanx luv Mel xx

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!!) :wink:

Take care.

Bev.
xxx

Hi Kim,

Thanks for your msg.

Have read your profile, sorry to hear about your mum, hope she is feeling better.

Will try not to ramble, but it is something I am doing quite a bit of !

I had a relaxing holiday and managed to “forget” if that is the right word, until I got home today and opened my front door, feel like I am back to face the music. Got an appointment with the surgeon at the end of September.

To cut a long story short (read my other posts if you can) Mum had the test about 7 years ago (it took 2 yrs to get the initial results) which was positive BRAC2 - fortunately her bc was caught early and touch wood she is fine. I took a long time to make my decisions. Saw my counsellor again in Feb to discuss options and started the ball rolling, saw the consultant genetitist in May and then saw the psycologist in June, initially thought that I wanted to see the sugeon first before I had the test. Then decided I wanted the test asap. Had the blood taken then waited for the results (longest 4 weeks of my life). Got my result 21st August. Now just waiting to see the surgeon to discuss options. Definately having surgery just a matter of what type and when. Appt with surgeon 25th Sept - hoping that I will get a date for surgery then.

Happy to chat further with you, you can email me privately from the other site. let me know if you need the address - it is on one of my earlier postings.

Take care and keep in touch
Lisa xx

Hi Julie

Thanks for your msg. Hope you are well.

We waited approx 2 years for the initial test result, not sure if this is still the case. They came and did family history tree before going into anything further, they look for all types of cancer which could incidate genetic faults not just bc. They do say that only 3% of bc is down the family history though !

If it is something you are worried about I would certainly look further into it, ask your GP maybe would be the first step.

Good luck and let me know if I can help further.
Lisa xx

Hi Mel

Thanks for your msg.

We asked after mum was diagnosed, (she was aged 52) I think it depends on any family members being daignosed young and other family members with cancer not just bc. You do have to ask though, well we did anyway.

Our family history wasn’t necessarily just mum as she was aged 52, but interestingly - her dad had stomach and pancreatic, his twin brother had bc, (his daughter bc at age 47), their sister ovarian and cervical (her daughter bc aged 33)

Hope that helps.

Feel free to email from the other site if you want to talk privately.

Good luck.
Lisa xx

Thanks Hi Lisa, thank you for replying (you must have so much on your mind at the moment) Will have a chat to mum and get her to ask about it at her next check up.

Thanks again, take care
luv Mel

Mel

No problem, don’t worry about me, I do have a lot on my mind but I am ok and this does help so ask all you want.

Take care
Lisa xx