No words

Hi,

Me & my daughters have had genetic testing Braca was clear, a friend of my daughters was positive but rather than any preventative surgery she has scans & mammograms yearly.

I am waiting for results for pT testing. Not sure what this is .May know more this Monday.

Regarding the `mistake`, contact PALS & tell them what has happened. They will ask if you want to formally complain, say yes.

I had a similar experience a few months ago, the first reply tried to fob me off.

It may safe guard others from this horrendous wrong diagnosis.

I replied that none of my questions had been addressed.

Still waiting for answers.

Just face each day & do whatever you need to cope.

Scilly 

Hi

I am so sorry to hear about everything you’ve been through. The mistake over your diagnosis was serious and I am glad you had an apology. It should not happen. 

My story is a bit different to yours - I was diagnosed with a high grade womb cancer that turned out to be brca1 related. My sister found she had the brca mutation and had her ovaries removed. Then both her daughters tested positive and they are still considering their options. 

You sound very scared in your post. Have you been able to sit down with a cup of tea yet? That possibly sounds silly but I do mean it. This feeling of being like a ticking time bomb will pass. You won’t always feel like this. 

For the most part, removing the ovaries is not offered to women under 40. This is an evidence based and carefully considered policy. It takes into account the low risk of developing ovarian cancer before 40 as well as the risks associated with an early surgical menopause. It also takes into account the fact that you might want a baby. Decisions in individual cases can also take into account individual family cancer patterns. In my family, cancer has been diagnosed typically around the age of 50. In other families it’s earlier. Not all brca mutations are the same; some are more lethal than others. 

I do agree that anyone carrying this gene defect is very likely to have anxiety. I think that’s all the more reason to see a psychologist who will help you manage your feelings and make a properly informed decision about surgery. This is a life changing operation, you’re very young to lose your ovaries and it’s vital you make the right choice for you. Ironically, I’ve heard many complaints from women who were not offered psychological support before their operation - some charities are campaigning for this to be standard practice. 

To answer your question “now what do I do?”, my advice is go to a meeting with the psychologist and go with an open mind. I have met enough young women who pushed hard for an early removal on of their ovaries and went on to regret it. It may not give you the peace of mind that you seem to be seeking. I would also be asking whether there is any surveillance I could be offered. 

I wonder if anyone has been through the risk numbers with you? I get quite angry about the life time risks that get bandied around. In what sense is it helpful to know you carry a lifetime risk of 40%? What does that even mean? A much more useful statistic for me was my one year risk. I was 51 when I found out I was brca1 and the genetics doctor explained that I had a 2% chance of developing breast cancer that year - this compared to  a 1% risk in a woman of 51 with no brca mutation. With that information it was easy to decide not to have breast surgery but opt instead for annual mammograms. 

I hope this is helpful. I wish you all the best 

I do understand your frustration and dilemma.  I also am under Guy's and have had a more positive experience than you.  However I have found the geneticists do vary.My husband and I met with the psychologist and did find it helpful.  I do not know whether to have breast reconstruction.

I have learnt over the last year to not let matters rest.  You need clarity over your diagnosis and over your options. Perseverance can be hard and have you a buddy that can listen to you.

If you live in Kent then BRCA Kent is another support route.  Un fortunately I don't and there is very little support in my area.

You are not limbo and you are in control to a degree with your destiny.