bloods and brac1?

[claireRoberts76]

hello again ladies... mum been to hospital today and bloods have come down after one chemo so they have told her shes on right track.... another thing they want me and my sister tested for brac1 and 2... so worried about this now!!! feel my life is one big worry ! but happy for mum x

[Lindaura]

Dear Claire,

It really upsets me that so many women on this site do not understand that knowledge is power.

Either they do not know how to research properly or they have got their heads stuck in the sand and prefer to wait and see what the future springs upon them or prefer to listen to anecdotal evidence only and not the research and data available to them.

The truth is that I have learned so much from my online research about genetic mutations like BRCA1 and 2, along with so many others that can be inherited by you and your sister.

Knowing about them will give you the opportunity to consider risk reduction surgery, available in the UK on the NHS, along with genetic counselling.

Having one of these mutations opens up more opportunities for treatment for your mother!

Don’t Call it Dr Google.

That is a ridiculous nickname.

Google is merely the search engine you can use to find helpful information from sites like Ovacome, Target Cancer or merely the latest research on new treatments, along with information on clinical trials that could be useful.

It is useless to worry, and worthless to hide your head in the sand.

Your mother is doing well on her current treatment. I can only surmise that she has already had the BRCA Mutation testing, if the doctor recommends that you have it, too.

My entire extended family have been tested, but only one sister and myself have it, along with my daughter. The mutation was passed down from my father, who died when I was 12.

My mother does not have it and has nnever had cancer of any kind.

My words may seem harsh to many ears, but I want only to enlighten you.

Do not shut yourself off from an excellent research tool. Use it wisely and you will gain wisdom,

Best wishes,

Laura

[rossnbren in reply to Lindaura]

Absolutely!!.. couldn’t agree more!!

[claireRoberts76 in reply to Lindaura]

Hello... Thank you for reply... my mother has not been tested yet but is having it done this coming monday before her chemo, my grandfather had breast cancer back in the 80s so Im thinking he has passed it down to my mother ... The doctor asked my mother if she has daughters so me and my sister are being tested also in the very near future! Im afraid iam a worrier after mum being diagnosed only 5 weeks ago and now a good chance of me being a carrier i think its only natural. Its all so much to take in and very scary ... sleepless nights and worry is awful x

[Lindaura in reply to claireRoberts76]

Dear Claire,

It is a worry. And it is easy for me to say don’t worry, when of course, we all do.

My diagnosis was a complete shock and I knew nothing about Ovarian Cancer at that time.

When I found out about the BRCA Mutations, I wanted to get tested right away, to spare my daughter the fearful situation I was in.

Yet it took so long to get the test here in Bath, from Bristol, more than six months from the request, that we all ended up getting tested privately while We were visiting our family in California during my second three months in remission.

I thought it would be a relief for my beloved daughter to learn she was BRCA1 positive, but it has turned out to be heartbreaking.

She is 40 and has never had children and it is too late to save her eggs, so she has gone for the first risk-reduction surgery, a BSO to remove her ovaries and Fallopian tubes.

It wasn’t as easy as we thought it would be, but she very sweetly stayed with me in my special room next to our downstairs bathroom, while she recuperated and I recovered from my 4th infusion.

This entire ordeal has been terrifying, but it has also been an education.

And this forum has been amazing and extremely helpful .

I don’t know what I would have done without it.

We all can share experiences and gain a glimpse into what might lie ahead, how to avoid problems, and how to deal with one’s we could not avoid.

All the best,

Laura

[mrstadpole]

Hi Claire

I was diagnosed with OC in 2017.I volunteered to take part in a research programme then.Two weeks ago I had results from the genome research and I am seeing a geneticist to discuss the BRCA 2 gene.No one in my family has ever had breast cancer and only my maternal grandmother had OC. You can carry the mutation with out actually developing cancer.

I will be worried until I see the geneticist.

Ann x

[claireRoberts76 in reply to mrstadpole]

Hello! my grandfather had breast cancer my mum's father... now my mum has ppc .. shes being tested on monday, if it comes back positive only then will we be tested...so worrying isnt it... as far as i know there is no other cancer my mum is one of 6... nobody else o my 20+ cousins!! how are you? are you better? x

[mrstadpole in reply to claireRoberts76]

Hi Claire I feel really well at the moment but once you have been through this diagnosis it is always at the back of your mind.I have two more Avastin treatments left.

I am back to normal, take no medication and enjoying life.

Hope all is well with you.

Ann xx

[Flamingobeef18]

Hi Claire

So sorry your mum and family are going through this. After only five weeks you must still be reeling from the shock but things will settle and get easier. It is amazing what we can all adapt to and it is great news that your mum is responding well to her chemo.

Try not to worry too much about the genetic testing. I have a history of reproductive cancer in my family but I ended up testing negative. Therefore my daughters ended up not even having to consider testing.

Do remember that testing is optional and a big part of the process is the genetic counseling you have here in the UK before you decide to get the test. This covers every aspect of the process so you can make a fully informed decision as to whether testing is the right thing for you. There is no right or wrong decision.

Juliax

[claireRoberts76 in reply to Flamingobeef18]

Hello! thank you... I know they have said to her bloods have come down after one chemo and are on the right track... Was so pleased then mum said we might need to be tested and i read up and didnt sleep a wink last night!!!! Feel were all living in a nightmare atm ... Just want mum better and this test now is worrying me non stop!

[sjg81]

Hi Claire

Its really good that your mum has a fantastic team around her and they are really on the ball. As you know my mum finished her chemo in December and has never been offered the testing for BRCA which is something we will be asking about at her next appointment.

Like Laura said knowing opens up different treatments if your mum should ever get a recurrence.

Everyone is different though and I would want to know but my sister wouldn't.

I'm pleased to hear your mum is doing well x

[claireRoberts76 in reply to sjg81]

hello!!! how is your mum doing???? my mum is having this test on monday... If positive we are having it, if ok were not .. Im really really nervous about this now! Still in shock after finding out about mum with ppc! xxx

[sjg81 in reply to claireRoberts76]

She's doing ok at the moment thank you. It's all been a massive shock for you all. I hope you mum is doing ok x

[claireRoberts76 in reply to sjg81]

shes doing well thank you💓🙏🏼

[sjg81 in reply to claireRoberts76]

Good to hear ❤ x

[Lyndy]

Hi Claire

You are dealing with so many things at once! Most of this should be good news...your Mum is doing well and is likely to have an excellent response to platinum based chemo if she is BRCA 1 ( I was stage 4 and had a remarkable response to chemo which made them suspect I was BRCA). Being tested yourself will help the medics decide if you need extra monitoring- a positive result does not mean you will definitely get cancer. All this information is coming in a big rush with the stress of your Mum being ill. Try to take the positives if you can! xx

[claireRoberts76 in reply to Lyndy]

Hello! mum is doing very well so far but early days!...they have said its come down nothing major as yet but on right road..... yes its a lot to deal with im being positive but im funding so so hard and a busy hairdressers to run... putting on a brave face when im so scared i appreciate everybody who replies and thank you x

[mrstadpole in reply to claireRoberts76]

I made a very good recovery after one chemo of carbo.It made such a huge different to me.So pleased to hear it is helping your mum xx