Advice Please
Advice Please New user Tracy has posted the following and seeks advice:
BCC Host
Hi there, I have read through a lot of the forum letters and I feel really selfish now. My mum was told she had breast cancer when she was 32., while I was a the age of 12. I watched her suffer through all the theatments with nothing more than bravery, but then to be told in the few moths of remission and peace that the cancer had spread and there was nothing they could do. She died at the age of 36. I was 16, my brother was 21 and my sister was 6. I am now 26 and have spent my life pushing everyone away so they will never have to see and suffer what my mother went throgh. I have spent my life thinking if not assuming it will happen to me. I can not get out of my head the suffering my mother went through for these years,and I have seen the effect of losing his wife on my father and he has never, or will ever recover from.My fear is that I have that gene and history repeats itself. I have been offered gene testing in the past and I declined, but I feel I now need to know where I stand. I am not sure if other family members have had breast cancer, but my mother was only 32 when she was Diagnosed . I just really do not know what to do? My other main main concern is that it will skip me but my wee sister as the gene. What are we supposed to do? Does anyone have any advice for me?
Tracy
For Tracy Hi Tracy
First of all, you must not feel selfish. Many people have the same feelings as yourself, we know this at Breast Cancer Care due to the number of people who have contacted us with similar fears and questions as yourself.
I would suggest that you go and speak with your G.P. or one of the G.P. team at your local surgery who you feel you can discuss this with and ask to be referred to the Family History unit at a breast clinic in your locality . Your G.P. should be able to advise which in his/her opinion is the best clinic to go to. If you have the same G.P. as your Mum this may also help. I have included two internet links which may help you if you take a look at these before you speak to your GP, these are: www.nice.org.uk/page.aspx?o=CG014 and www.breastcancercare.org.uk/docs/familial_breast_cancer_update_may_06_0.pdf
I would say do involve your sister and your brother if you feel you can talk with them about this, so you can all be included in any screening that you may be offered.
If you feel you need to speak to someone in confidence about this, please do not hesitate to contact Breast Cancer Care freephone Helpline on 0808 800 6000 which is available Monday to Friday 9am – 5pm and Saturdays 9am – 2 pm.
With best wishes,
BCC Host
Get all the help you can. Hi Tracy,
I’m so sorry you’ve had to cope with all of this whilst at the same time as grieving for your Mum.
My case is similar in that I lost my sister to cancer (she was 36) and I had to watch her husband fall to pieces and try to cope alone with their 5 year old son. My Mum also had breast cancer at the same time but she recovered and has blamed herself for my sisters death ever since.
As it turned out the BRCA1 gene comes from my Fathers side not my Mother.
Even though I knew it was a 50:50 chance I was still very very shocked when I was told my test was positive. If you go for the test don’t underestimate the shock you will feel if you are found to have the gene - it is completely shattering.
Apart from myself, my main concern was (and still is) that my daughter may have inherited it too. As she was only 14 at the time my geneticist would not test her. I agreed with this absolutely as i believe that the changes she was going through during puberty were quite enough to contend with without having to deal with that too.
I mentioned this because at 16 your sister has an awful lot going on in her life and she may just not be ready to face it yet.
You know her better than anyone else so you should decide whether to include her at this stage or not.
My daughter is now fully aware of me having BRCA1 and what it means. She knows she could have inherited it too but has decided to deal with that when she is older. She did have a very hard time coming to terms with it though.
I think you need to have some sort of counselling before you proceed with the genetics testing. You’ve had a really tough time over the last five years and it sounds as if you are still going through the grieving process after the loss of your Mum. Ask for a referral to a bereavement counsellor, it really does help.
Its a long process but the support is out there - your GP is definitely the first person to go to.
Good Luck - and remember - you’re not alone.
Gingernut
Welcome Tracy Hi Tracy
Don’t feel selfish at all, you have been through the mill and you have concerns and worries.
I would definately go to your gp and get referred to your genetic team as soon as possible. Even if to get some counselling and put things into perspective for you. If your mother had a bc gene both you and your sister will have a 50/50 chance. Hard to take I know. It is horrible to have to make decisions when you want to bury your head in the sand and I did for several years !
I totally understand how you feel, my mum was 51 when she got bc and touch wood is ok now 7 years on. However she was also found to have BRAC2. I initially declined the test and like you decided I didn’t want to know if I had it, but almost convinced myself that I would get bc at some point. As I got older and considered it more, looking into the options, I realised that I had a choice and actually I may not have the gene. Before I decided to have the test (and this is totally personal to me and in some ways back to front) I researched and decided that if my test result was positive I would have preventative surgery. My result was positive, and whilst I am sometimes angry, I also feel lucky to have the choice.
Take care and ask any questions here, there are plenty of girls in your position and also in mine who are more than happy to help.
Also check out the other website, can’t get to the address from here but will post it for you separately, you can send private messages and also.
Lisa xxxxx
other website phpbbserver.com/breastcancer
Hi Hi Tracey,
You must not think you are selfish.
Im really sorry to hear that you have lost your mum and had to watch her suffer. I am also sorry to hear that you have lived in fear ever since.
My story is different to yours - as my mum got bc twice - once at 52, then again at 57 - however she is 62 now and is still going strong. We found out she had the gene - so I made the decision I would have the test too.
My reasons were personal - but they were based on the fact that I did not want to live my life in fear. I was found to have the BRCA 1 gene and am now working out what options of recon I want - I know for definate that I want preventative surgery.
Like Lisa, and all of us who have followed the genetic testing path - we get angry sometimes and life is not always easy - far from it - but I would not want to not know. The everyday fear of getting cancer - and not being able to do anything about it - is the thing that keeps me going.
But I would start with your gp - but then research all your options like Lisa did. I spent all my time preparing myself for a positive result - which when it arrived I was totally fine with - but had spent no time looking into breast ops etc…before my test I felt I would just be screened - but knowing I have the gene has pushed me to want breast surgery - so all the options etc… have been another huge hurdle to get over.
This sight is brill for reading the forum and picking up what others are facing etc… and there are some amazing people on here - to help you through. I would also use the other site as Lisa says it allows you to private message etc…which might really help you.
If you find us on the other site dont hesitate to get in touch,
Good luck Tracey ,
Orienne
Hi Tracy Hi Tracy
Welcome - you are sooooo not selfish - please don’t think that.
Like you, my mum got breast cancer young - however, after fighting it for nearly 17 years, she unfortunately passed away a year ago. I understand completely the digging the head in the sand and more than that, I totally understand where you are coming from when you say you fear that you won’t have the gene mutation, but your younger sister will. And I also can relate to how you feel about seeing your mum and everyone around her suffer. There’s no words to describe are there?
I have a 20 year old sister (I’m 31) and both myself and my other sister, my twin, were diagnosed with the BRCA1 mutation in June this year. My worst fear was that I wouldn’t have it but my twin would (we didn’t know for sure then if we were identical) - I would have rather had it that her. And now I’m terrified for my younger sister - but at least she can follow hopefully by our example if she does end up being diagnosed too.
Hopefully, it won’t come to that for you and your family - but if it does, there is a lot that can be done - it’s just a difficult, emotional journey in getting there. Sites like this one and the “other” one are a great support. I’m currently at the surgical consultation stage (this Tuesday) to arrange which type of mast and recon I’m going for. Whilst I’m not dismissing how I’ll feel nearer the time - I can honestly say I feel very empowered right now (aside from the dilemma of what type of op to have).
Whatever happens - you’ll get the support, advice and intervention that’s right for you. Keep us posted.
Take care.
Bev.
xxxx