Waiting for results and having a meltdown!!!!

Good morning!

I need to write this down somewhere and I thought here is as good as any, everyone is always so helpful and kind and you all understand!

I am over my bilat mx, awaiting recon next year but still waiting for my BRCA 1/2 results. I rang the genetics team yesterday and asked when the results would be available (should have been end of November) and they said I am in the ‘dictation’ pile! I’m finding the whole thing very frustrating and I’ve been told I should get them next week.

I’ve never felt so out of control. In fact today I have had a bit of a meltdown. I feel worse now than when I was waiting for my cancer diagnosis!

How have others dealt with the wait? I’m so convinced I’ll come back BRCA2, because of maternal deaths from pancreatic cancer (that’s my biggest worry, ovarian is too). The genetic counsellor said to prepare myself for this as it’s looking that way family history wise. I know that the news isn’t immediately a death sentence but I’m finding it incredibly difficult to see it as anything else right now! Pancreatic cancer scares me so badly and I’m doing everything I can to improve my lifestyle. I have to lose weight to have my DIEP next year!

Please, anyone, I’m feeling desperate today!

Thanks

Viv xxxxx

Hi Viv

While you’re waiting for your fellow forum members to reply, could I suggest you give the helpline here a ring, they’re just a free phone call away with the listening ear I think you could do with at the minute. 0808 800 6000, lines are open now give them a call.

Take care,

Jo, Facilitator

Hi Viv, Just sending you a big hug (((((o))))), im waiting for my Genetic results too ,was told i would proberly have them in December ,but nothing yet, dont know if thats a good sign or not, im trying not to worry about the results as i cant change them but realy wanted them doing for my children so at least if mine come back negative they will be able to relax a bit more, but also that if they do come back positve at least they can have some risk reduceing treatments if they choose too. BC seems all about waiting for results sometimes doesnt it, i think it is one of the worst things about this blooming desease.
Fingers crossed for you that you wont carry the BRCA genes, and for me too.
Linda x

Thanks Linda, I really appreciate your reply. I too want them done for the kids and my family. I have 2 boys so at least the breast cancer side isn’t so prevalent.

Fingers crossed for you too. Have you had bc already or are you going for prophylactic if they come back positive?

Love Viv xxxxx

Yes ive had BC twice now in 5yrs, both Primarys but in my opposite breasts ,so that was the reason why i was offered the Genetic testing, though i do have some cancers on my dads side but not BC, i think it was because there is a higher risk of carrying the BRCA genes if youve had bilateral BC , i have a daughter and 2 sons and also a very young grandaughter and 2 young grandsons , when i went for the genetic counselling they said even though BC as we know is much rarer in men, it could still have implications for their daughters if they were found to carry the gene too . I took my daughter along with me to the conselling as know she is very worried with me haveing BC twice! Anyway, lets hope we both get our fears allayed soon, i think the risk of carrying the gene is still quite small for most BC ladies thankfully so fingers crossed for both of us.
Linda xx

Wow Linda you have been through it! Yes it is so worrying for the future generations.

I feel better tonight about it but I’ve been off my head with worry today. I am normally not someone who worries about things we can’t change but I suppose I’m allowed an off day.

I work in a school as a counsellor so just didn’t feel I could offer myself to people today.

Blimey this is like sitting on a can of worms.

Good luck, do let me know how you get on.

Viv xxxxx

You too Viv, Stress is my middle name lately lol ,so think we are def allowed a day off or TWO now and again eh!! Let me know how you get on too , hope it wont be too much longer for you. Big Hugs to you.
Linda xx

I got my results and I am BRCA negative. The breast cancer was just bad luck. I am very relieved as now I know that I have as much chance as anyone else of getting pancreatic cancer. That was my biggest fear!

I am really happy with this news and now can’t wait to crack on to 2013 and get christmas out of the way.

How long do you have to wait for your results Linda?

I am going to try and PM you.

Lots of love
Viv xxxxx

Am so pleased for you Viv Yayyyyyyy!!! I got my results yesterday too and am also BRCA Negative , am so relieved like you, especialy so for my children/grandchildren as they will now have no more risk of getting BC than the rest of the population so a huge relief all round!!
A fantastic chrissie present for both of us ((((((0)))))), and like you i am now looking forward to 2013 and definately seeing the back of 2012, its been a horrible yr for so many people with BC and i realy hope the new year will bring better health ,peace and happiness for all of us.
Merry Christmas to you Viv, keep in touch.
Love and Massive Big Hugs to you.
Linda xxx

Hi Viv and Linda

so glad your results are neg.

Viv like you i have a big fear of panc Ca… i had Bc 3 times at 37, 40 and 42 and have the BRCA2 gene with no family history of BC but had one relative with panc ca and one with ovarian ca… so i certainly can understand your concerns. i am so pleased to hear that both of you had negative results.

Happy New Year
love Lulu xx

Hi Linda!

I am so happy for you too! My goodness what a relief. I actually fell to my knees when I got the letter and I think I let all my emotion out in one afternoon. I have never cried over everything to do with my bc. People keep telling me how ‘brave’ I’ve been but I have actually just been burying myself in everyone else’s feelings.

Had a crisis talk with the bcn on Friday last week as I was feeling so flat! Just been feeling so depressed and she said it’s not unusual to feel like this. I would have put a lot of money on the results coming back positive so it was almost unbelievable!

Lulu, I hope you are managing your diagnoses and do you have the option to have surgeries for ovarian cancer? Did you contact Europac? I know you were talking about it. Have you have any response from them?

Happy New year to you both and sending lots of love.

Viv xxxxxxxxxxxxxxxxxxxxxxxx

Hi Viv
I have bc diagnosed at 41, my sister at 35 and my mum at 30! My grandad also had pancreatic ca early 50’s
My sis tested negative to both braca genes and I was tested on Thursday last week.
I don’t think a neg result will reassure me the way it has you though, as to me I just think we have a genetic cause as yet unknown. Not sure ifi that makes sense to you though. The genetic councillor won’t say “yes it’s genetic” but to me it so clearly is
Glad yo had the results you were after, good luck
Mandy xx

HiI Viv
just wanted to add that like you I had a bilateral mx in July this year…may as well reduce risk as much as possible eh? I just Walsh I’d done it a damn sight sooner. Hindsight and all that
xxx