New To The BRCA Group ?

Hi Diane

Can I let you in on a secret? I'm not really very brave or inspiring. I'm just out the other side of this. So from experience I can say that what you're going through right now is pretty tough stuff and it's likely everything feels like an emergency. This feeling of panic is likely to subside in time. Hold tight. You'll get there xx

Hi  

I was going to link to the OPERA brca online risk assessment tool on Macmillan but it is down at the moment.

There is another BRCA risk assessment tool section at the Ovarian Cancer Action website (link) you could take a look at ?

Hope this is of some help, G n' J  (breast group)

Hi everyone,

I'm new to the group, in a weeks time I'm due to get my test for the brca gene, partly because of a faint family history and also because I had breast cancer (albeit early stage) last year when I was 39.

Could anyone give me a rough idea of how long you wait for results ( I live in Northern Ireland).

I'm dreading this appointment as I have just lost my husband recently, he died suddenly and unexpectedly. He was my rock when it came to appointments and throughout my treatment and after effects.

Any info on the test would be greatly appreciated.

Hi there Mrs Mulholland

I'm so sorry to hear what a tough time you have been through - and are going through. My sincere condolences 

I waited about eight weeks for results. I had a letter informing me it was a positive result. The consultant clinical geneticist called a few days later and then about a month later I spent the afternoon at a BRCA clinic where I met with all the different specialists I needed to see. 

I hope you don't have to wait too long. It can be a trying time and I coped with it by putting it out of my mind. 

Good luck xxx

Dear J

I am so sorry that you have been going through some much.  I pray to God for you for strength to get through everything. 

My BRCA test was done October  2015 at Churchill Oxford hospital genetics dept.  They did rush the test as I was waiting to decide between having a single or bilateral mastectomy. It took 10 working days to come.  So I now know that on special requests they can push you up the que. 

They gave me a choice if I wanted to hear the results by phone or letter and I requested for a phone call. I always prefer to hear these things in person. Also the lettersfrom hospital always take long time to get to me. 

I wrote down all my questions and took them with me  when I went for genetic counselling and the test.  

It is also a good idea to get a friend to come with you.  I found the information given at the counselling most useful for me and my family but very overwhelming.

Unfortunately the test i have found that all doctors and nurses in meet at Wycombe and Stoke Mandeville hospital have limited knowledge of breast cancer gene mutations.  So groups like these and information on the web are really useful.

I wish you all the best xxx and sending you lots of hugs xx

Morning,

Noticed a few new members joining this BRCA Group, so wanted to 'bump' this message as there are BRCA information links on page 1 which can be found clicking here.  As well as Risk Reducing Breast Surgery and Reconstruction info.

If you have any questions, just reply to any message, or start a New Discussion and other members of the group can offer support and/or advice.

G n' J

Hi

My name is Mike and I was diagnosed with breast cancer in 2014. Luckily caught it early and I had a mastectomy and FEC chemo. Had my two year all clear in April.

I've been tested and have been found to have the BRCA 2 gene.

It seems, as it is quite rare in men, that I got the gene from my mother's sister.

I have three grown up sons and two of them have been tested and are clear :) The third lad doesn't seem to want to be tested, but that's up to him.

I'm getting regular mammograms, 12 monthly instead of 18 monthly and will be getting regular prostate tests.

Bit of a pain, but it is making me very vigilant and it has brought a huge amount of education into the family making us all very self-testing aware.

Hope everyone is as good as they can be.

Best wishes

Mike

Hi Mike

How interesting! Thanks for sharing your story. I'm so glad you caught the breast cancer early and that your treatment was so successful. 

On the rarity factor, BRCA mutations are no less or more rare in men than women. We all carry two copies of the BRCA1 and BRCA2 genes, one of each from our mother and our father. You say you are BRCA 2; more accurately you carry a mutation in one of your BRCA 2 genes that increases your risk of developing cancer. 

The BRCA genes are responsible for DNA repair so if there is a mutation in one copy, our DNA accumulates damage making it more likely that we develop cancer. That's kind of the simple version - people with a BRCA mutation are at risk of specific types of cancer (namely breast and ovarian) so there's something else going on too and it's likely to be hormone related. So although it's equally likely that women and men can inherit the faulty gene, it's women carriers who are at greater risk of developing cancer. But male carriers are just as likely to pass on the faulty gene to their children as are women. Each of your sons has a one in two chance of inheriting the BRCA2 mutation  that caused your breast cancer. Great to hear that two of them are not carriers. 

It is possible for two people who carry BRCA mutations to have kids and there are known cases of their children carrying a faulty BRCA 1 and 2 gene or two faulty BRCA 2 genes making them even higher risk for cancer than their parents. There are no known cases of double BRCA 1 mutation carriers and it's thought that a foetus with both mutations would not survive to birth. 

I hope this is helpful and not just confusing or patronising. 

All the best 

Daloni 

PS you will have inherited your BRCA2 mutation from your own mother. It's not possible any other way. Around one third of carriers never develop cancer - something that's often over looked. 

Afternoon  

That is a bit of a turn up for the book. Was your mums sister being found brca a deciding factor to get your brca checked or was it symptoms related ?

I suppose in a good way you at least have an answer but it opens up a can of worms for other cancer concerns - There was a message posted earlier today from some other fella who was ex breast cancer and now also has prostate cancer. It may be worth you having a chat with him regarding signs to be on the lookout for :-/  I'll see if I can find his member name and copy it in.  It was a bloke from Australia member name

Have your team got back to you about stepping up vigilance in this area for you now ?

Hope your other son is clear as well, it would be a cruel twist if he was the only one not to go ahead with the test and it came back later to bite him. As you say this does make you all more aware.

Take care, G n' J

Hi Daloni & George

Thanks for your very informative replies. My original post was poorly worded. I meant to say mutation but it came out as gene :) (I blame all the drugs)

Also, I left out the part where my mother's sister died in her early 30s of breast cancer. You'd think that would be the most important part eh? 

Thanks for taking the time to reply