Never ending nightmare: Well today I turned up... - My Ovacome

My Ovacome

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Never ending nightmare

25 Replies

Well today I turned up for my first gem/carbo appt at 12 eventually started at 3.45!! In the middle of waiting my daughter got her gene test results and unfortunately she is brca positive she is 30 no children! I'm so gutted for her I know it's a good thing because she shouldn't end up like me now but bloody hell where does this nightmare stop!! Xx

25 Replies
Millie-c profile image
Millie-c

So sorry to hear that the results show she is BRCA positive.

It's difficult to think of her one day being in the same situation as you. I felt the same when my sister tested positive for BRCA 1.

Try to think of the results as a positive thing though. The scans she can have now every year for both ovarian and breast cancer at her age can help to find anything at an early stage so that's a bonus. Also she has the option of preventative surgery which will virtually eliminate the effects of the gene.

I don't know if I have made that read how I wanted to say it but she is in a better position knowing than just waiting to be told she has this horrible disease.

Hope the chemo went ok. Big hugs,

Mandy, xx

in reply to Millie-c

Thanks Mandy you are right it's better knowing than finding it late like I did xx

HogwartsDK profile image
HogwartsDK

Alison it was certainly "one of those days" for you!

I am so sorry to hear about your daughter but as Mandy said she is now armed with information that will ensure that she has all avenues available to her at the earliest possible time!

I am waiting to be called for the genetic testing, I am dreading it cos if it's positive I just don't know what I will do! Not going to think about it until I am presented with the information!!!

Hope you are not feeling too bad after your Chemo today!

All the best to you and your daughter!

Dx

in reply to HogwartsDK

Thanks D! Good luck with your test let us know how you go on! I wasn't bothered about having the test no cancer in my family so didn't think for one minute I would be positive oh how wrong was I xxx

Julie40 profile image
Julie40 in reply to

Alison I was exactly the same. No history or so I thought ! Turns out my granny didn't have cervical cancer it must have been ovarian. Family were told at the time it was Gynae and assumptions were made. My mum is also positive but had a hysterectomy in her late 20's for general Gynae problems, she managed to avoid cancer so another positive sign that preventative surgery has worked

I take comfort in the fact that knowledge is power and if I had known could have helped myself but my cancer will now protect my family. Drastic way to have to protect them but it's the positive I take out of it all.

I remember sitting waiting to go for chemo and my daughter at 22 and still in uni tells me she was pregnant. I was shocked but the BRCA issue was going on in the background and I hadn't told anyone as I was waiting on my results. Thought my head was going to explode with it all but it was all for the best in the end. Turns out her little boy was a blessing and has given us all so much love and happiness. She has now been referred to fertility for PGD and hopes to have another baby next year then a hysterectomy. Your daughter can get help and be able to look at options for the future through the fertility clinic.

There is so much to take in and I'm dreading my other two being tested but needs must and we have to stay on top of it all. If you ever need to chat about it you have my number call anytime.

Hope you're feeling a bit better today. The first session is always so tough. I hope it eases soon. Hugs xo

Dollysmum profile image
Dollysmum

Alison, I'm sorry to hear that. What a pants day! That said, knowledge, irrespective of how rubbish it is, is power.

Hope you are both ok this evening.

Debs xxx

in reply to Dollysmum

Thanks Debs xx

Yoshbosh profile image
Yoshbosh

Really sorry to hear that, Alison. Although it's devastating news, at least she can make informed decision on her life and benefit from additional monitoring. Not much comfort, but at least she knows.

I'm being referred for genetic testing at the moment, and I really hope I come back negative because I have two little girls. On the other hand, if it comes back positive that might go some way to explain why I got OC at 38.

That was a rather long wait wasnt it and a long day, I hope you went to bed early. I am so sorry about your daughter being positive for the test. But knowledge is power and as the other ladies said, she can make informed decisions at her own pace. All in all it wasnt a good day but good things can happen too

Oh no so sorry to hear that. I am just about to be tested for the BRCA gene. I also have a 30 year old daughter with no children and praying that we don't have it. It's a real blow for you but at least she will be closely monitored. Take care xx🌻

LittleSan profile image
LittleSan

Oh no - that's gutting. Here's to more healthier and more positive times for you. Xxx

Mrs_Atko profile image
Mrs_Atko

How horrible :( A day to be filed alongside the other 'cruddy' ones, that's for sure! It never rains but it pours!

I'm sorry to hear your news, but as others have said, at least your daughter knows now and has options ahead of her. Sending you both plenty of 'healthier, positive' vibes for the days/weeks ahead xx

in reply to Mrs_Atko

Thank you xx

Caroles1 profile image
Caroles1

Sorry about your news,as everyone said,better to be told than not.

My OC wasn't genetic,but my husbands mother and Nan died of it, so we have to go through another horrible wait.

I have a daughter nearly 30 and a son who could be a carrier, I pray my husband doesn't have the BRAC gene.

At times life is a bitch,but what doesn't kill us makes us stronger.

Love to all you brave ladies

Carole xxx

in reply to Caroles1

Oh good luck Carole I hope ur news is good

Have a nice weekend xx

Caroles1 profile image
Caroles1 in reply to

Thanks Alison and you xx

judyved-US profile image
judyved-US

Here's hoping for better days, Allison......Judy V

in reply to judyved-US

Thanks judy xx

IrishMollyO profile image
IrishMollyO

Hi Alison

I am sorry if this is such a late reply. I want to first of all wish you well in your own treatment . My heart really goes out to you when you talk about your daughter. It is a shock of course but I think forewarned is forearmed . You may probably save your daughters life. There was no gene testing in years gone by and it was usually found way too late. This way your daughter can steal a march on this horrible disease as she will be so closely monitored . If she is ever diagnosed it will be found in enough time to beat it. I really hope you don't mind me saying this but I think it is a positive.

Take care

XXX

in reply to IrishMollyO

Hi Molly Thank you for replying I really appreciate it and I don't mind you saying you are right and very nicely put

Thank u xx

IrishMollyO profile image
IrishMollyO in reply to

Thanks for replying Alidin. I did hope i was not offending you

IrishMollyO profile image
IrishMollyO in reply to

Sorry Alison

My reply went way too soon and plus I misspelt your name . I am glad you got what I was very awkwardly trying to say but I really spoke from my heart. I hope and pray your daughter will never have to face treatment but if she does she will be one step ahead. Take care

XXX

Definitely not xx

Karencwillow profile image
Karencwillow

do any of you lovely ladies mind me asking if you were routinely offered the genetic testing when you had your diagnosis? my mum was diagnosed in Feb. this year and she hasn't been offered this and I know I cant be tested unless she has, can anyone shed some light? many thanks

Morning Karen sorry to hear about your mum! I was 48 when diagnosed and my oncologist said straight away that he thought it was genetic even though I told him there was no cancer in the family! He suggested I got tested so I did and was shocked to find It was! As for if its routine I'm not sure maybe your mum can ask her oncologist for the test?

Sending you big hugs I know how hard it is for daughters to watch their mum go through this we are here for you if you need to ask any other questions or if we can help you although I don't think I've been to helpful this time

Take care xx

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