What's the truth about genetics ?

I attended Ninewells Hospital in Dundee, having been referred by my GP. I was 47 and had a strong family history of BC. My sister had already died, age 56, my mother had been diagnosed 2 years earlier, and my neice, had been diagnosed 3 years earlier at the age of 24, yet I was told that due to my age it was unlikely I had BC and the whole family history thing ‘wasn’t worht worrying about, as that’s just a myth’. This was from a hospital that runs a genetic clinic! After 5 months of to-ing and fro-ing between the hospital ( saying there was nothing wrong) and my GP, who kept sending me back saying there was, I was eventually diagnosed with BC and was told ‘sorry, we made a mistake’. To compensate for this, I was rushed in for a mx and recon, which was cancelled the evening before the op was due to be done, as the surgeon hadn’t read my notes before agreeing to carry out the recon, and when my husband asked if this was ok with my medical problems, the surgeon glanced through my notes and said ‘No’. I was given no attention after the op, being left in a bloody theatre gown until my hubby helped me change to go home 2 days later. I had to buy a prosthesis off E-bay, as no info was given, then was told post op that they had ‘got it all’ and no further treatment was needed. The notes in my medical records said ‘Prognosis good’, less than 3 years later it was back in other side. I am sorry I had the first op and have vowed I will have no more treatment. I find it very difficult to face each day and feel as though I have been disfigured to help the hospital statisitics look good.
Can I add that I was treated in Aberdeen the 2nd time and things could not have been better.

Mo, I was appalled and dismayed to read your post. As BRCA2 carrier, originaly from Edinburgh (but now living in Devon), many of my cousins are being seen at the gentics clinic in Edinburgh. They have nothing but praise for the help, support and professionalism of the staff there. I can’t tell from your post if you still want genetic testing? If you do, can I suggest that you ask for a referral to Edinburgh? I’m disgusted at Ninewells claim that genetics is a myth-if you feel strong enough, could you write a very strong letter of complaint? Doing so could help you cope in some small way too.

im being treated in edinburgh and under the genetics team at the WGH and have brca 2…

your treatment sounds very poor… even telling you because of your age its very unlikely however at age 40 there is a 1 in 200 chance of bc and at 50 its 1 in 50 just think how many people that age there are living the same area… you wont be the only one you age so its terrible that they dismissed you as they did.

you can ask to be referred to genetics even if they dont agree with you its up to the genetic team to assess your risk and counsel you not the breast team.

im glad to hear the treatment has improved at Aberdeen.

if you area gene carrier then they usually recommend mastectomy so although you have declined further treatment it may be managed an awful lot better in aberdeen.

i also had a good prognosis after getting bc at 37 but like you i had a new cancer 3 years later in the other breast and although i only had lumpectomy for both at the time im now considering bilateral Mx since i found out i was a gene carrier 4 weeks ago… my mum who also had bc about 18 months before me and my sister are both waiting on their results and have to debate the possibility of us all needing mastectomies… in our family only my mum and myself have had cancer and we werent considered an increased risk, however due my new cancer and my age i was tested.

i think if you havent been tested yet its maybe worth considering because even if you dont want further surgery you can have more frequent and thorough screening for early detection of any further cancers in the future if you are a gene carrier.

best wishes

Lulu x

I only found out my family is high risk because I attended a BCC Info session on family history! In spite of filling in various forms at dx the hospital hadn’t picked up the importance of my aunt having ovarian cancer. The BCC session was a presentation by someone from the local genetic service and she told me that I met the criteria for referral if I wanted it, which I then followed up through my GP.

I’m not at all convinced that my local Multi-disciplinary Team understand the genetics issue properly. My GP was very helpful and it sounds as if yours was pretty on the ball, madmo. If you want to take the genetics issue further it may be worth asking them to refer you to you local genetics service.

Eliza xx

My daughter has been referred to the gentic clinic, although on her first appointment guess what…they made a mistake (sounds familiar), and had sent her to the wrong clinic, so she is waiting for another appointment, hopefully to see the right person. Having had the 2 mxs I really don’t think I am (emotionally) up to any further treatment, and have found it extremely difficult to live with ‘my new shape’. I would not have gone ahead with the second mx if I had attended the appointment at Aberdeen alone, but as my husband was with me I let myself be talked into the 2nd mx and have regretted it everyday since. I have no wish to be tested now, as my daughter will find out if she carries the gene and can then gather any info, which I will help her with, she can also be awre of the risks for herelf and her daughter. Thank you all for your help and info about Edinburgh.