Hi all I have not posted on the forum in over a year. Maybe some of you girls can help me with the terrible fear I have now of recurrence and death. I am BRAC 2 DCIS, small tumor, double mastectomy,womb and ovaries removed. All my nodes were clear. My two sisters had the same except their cancer had effected their nodes. They are both dead now. Pat 6 years ago and Angela on the 4th January. I had 6 sisters and the 3 of us carried the BRAC2 gene the other 4 are all fine. My fear now is does it matter if the cancer spread to the nodes are not or is it the fact that you have the BRAC2 gene, it is gong to spread anyway. How can it spread if you have had a double mastectomy. I have so many questions but don’t no who to ask. Cancer came back in both my sisters bones and then their bloods. DO I go to doc with every pain. Will they think Im mad. Where do I get the balance right. Can anyone help?
Having a gene doesn’t affect how the cancer will spread or if it indeed will spread… Its the type of cancer that determines that… The gene just means you’re more likely to get the cancer on the first place… Basically the gene is meant fix faulty cells but because it has a fault it doesn’t fix them so efficiently resulting in a cancer developing.
Dcis is ductal carcinoma in situ which basically means its confined within the duct of the breast and doesn’t have the ability to spread to the lymph nodes or create its vascular system so doesn’t have the power to spread.
Having a double mastectomy and full hysterectomy decreases your risk dramatically of developing both breast and ovarian cancers.
I think you need to try and find the balance between being cautious and being obsessive about your health. If you notice a change try not to jump to the conclusion its cancer… It most likely is not given your diagnosis and your risk reducing surgery.
Is it a pain, was it there before? Is it relieved by medication? Have you injured that area recently eg a bump or a bruise? Is it there all the time? Is it getting worse? Does occur at certain times of the day? Where in the body is it? Are you on any new medication which states this could be a side effect? Etc
The same really with any new symptoms like a cough, shortness of breath, unusual bleeding etc… If your worried about it see your GP, if it doesnt go away after a couple of weeks see your gp, if it doesnt get better with meds see your GP if you think it could be something serious like a heart attack go to a and e.
Lulu x
Hi bellakate
Along with the support here don’t forget you are welcome to call our helpliners to talk your fears through, lines are open weekdays 9-5 and Saturday 10-2 on 0808 800 6000
Take care
Lucy BCC
Hello Bellakate
I’m so sorry to hear about your sisters, and I think we all worry about breast cancer reappearing. Your feelings are perfectly normal.
As Lulu says, your risk reducing surgeries have reduced your bc risk drastically, to below the risk of a woman without the BRCA mutation - that is a fact. However, being BRCA2 myself, I will still worry.
My mum and her mum both died from bc. There are no other females on that side of my family. When I was diagnosed with bc in March 2013, I wasnt surprised. I got my BRCA result in November. It was a shock, but also in some ways a relief, because now I know I need the surgeries, and that they will reduce my risk dramatically.
Another BRCA woman wrote somewhere ‘I feel like I’ve been given a second chance’. I find keeping that in mind helps.
I have phoned the BBC helpline a few times now. You will always reach someone who completely understands your concerns, and is able to answer your questions.
Also, I phoned the genetics councellor who gave me my result. She has been a very good source of information.
I hope this helps xx
Thank you for replying, I am just questioning eveything at the minute. I just feel my sisters did everything just like me but it came back anyway.
Knowledge is power you can reduce your risks and hopefully get your life back. The mind does play games with us but it gets better. You are still fairly new with your Brca diagnosis so give yourself time. My BRCA 1 news was worst than having Bc twice as I knew that it could effect my daughters. One tested positive and one negative. My youngest has taken control of her life and had a double mastectomy with no regrets. X