I’m 45 years old and found out in August that I’m brca2+. In June I had just completed treatment for triple negative breast cancer-lumpectomy, chemo, radiation. As when I was diagnosed with cancer, I feel things are moving so slowly. Every ache, pain and odd feeling has me afraid that I already have ovarian cancer or a recurrence of breast cancer or metastasis somewhere else in my body. I’m going to have a BSO, but it was 2 weeks after my initial conversation with my onco till I saw my gyno, then another 2 weeks to see her surgeon, then another week to schedule an ultrasound so she can make sure my ovaries look normal. And if they don’t look normal? It’ll be at least another couple of weeks until I can see the gyn onco.
Having already had cancer and knowing that my risk for future cancers is greater than normal, I’m in constant fear that by the time I actually get somewhere in my treatment, I’ll be full of cancer. I live in constant fear. Some days it’s nearly debilitating. I take ativan for the anxiety but some days I feel depressed, too. I just want my tubes, ovaries and breasts GONE! My oncologist is recommending surveillance on my breasts but I’m not comfortable with that and will definitely push for a PBM. Time can’t move fast enough on all this. I just want as many potentially cancerous parts of me GONE and as soon as possible!Customer 1
Living with a BRCA mutation is a mixed bag. On the up side, at least I know what caused my original cancer and I know what treatments are likely to work now that it has recurred. I can access trials that may prolong my life. These are not necessarily options for women with no known cause for their cancer and who often blame themselves for somehow “causing” their cancer.
But it is also a heavy load. I am a mother, sister and aunt and have had to inform so many people about my BRCA1+ result. Each time I felt as though I was handing over a heavy burden. Each of them will in time gain knowledge and power around their own BRCA status but it is a long road and it is hard to be the person setting them on it, especially when several of them are so young.
My first hope is that my daughters, who are 11 and 15, have not inherited this BRCA1 mutation. If they have, then my sincere hope for this research is that they will face easier choices around cancer prevention when their time comes.
It’s like having an albatross on your shoulder. You never know when /if it’s going to strike.
You feel angry for yourself and your family who have to live with it with you as well as face the possibility of having the gene themselves.Customer 5
I found out I was Brca2 in December 2013
Since then I had my Ovaries and Tubes removed by keyhole (April 2014) and then had a bi-lateral mastectomy with diep/tram flap reconstruction.
I have a huge family history of breast and ovarian cancer, my gran had ovarian cancer and my mum had breast cancer but we have a large family tree detailing other people.
I don’t feel bad about my results and my following surgery – I look at my Brca2 as having given me the best possible chance to take control of my life. I have a younger sister who tested negative and she has 3 girls who we now know are at no more risk in the future than the rest of the population.
I do sometimes fear for my son and how he will be affected but as we do not yet know if he has inherited my faulty gene – I try not to dwell on it. I just know that finding out and being able to have my risk removed through surgery gives me the best chance to be here for him in the future.Customer 2
Living with a BRCA mutation means increased concern about cancer and dying. It means becoming a detective in order to give yourself the longest life possible, and tracking down diverse information about statistical risks and possible interventions. It means having many medical appointments to discuss issues of surveillance, surgery, fertility and menopause, as well as sometimes needing emotional support via counselling. It means time off work and financial sacrifice for investigations, surgeries and post op recovery. It means dealing with haters and disbelievers who minimise what this brca mutation signifies. It can also highlight true friends in our life who support us unconditionally. It means concern and fear for our family members who we may have passed the gene onto – which sometimes brings up guilt and worry. The BRCA mutation can result in empowering ourselves to be active in our lives and give ourselves the best chance at life, for ourselves and for our families. But some will buckle under the stress of having this mutation, even be dropped into depression and others will go into denial, unable to face their mortality. For some of us it means cancer diagnosis, chemotherapy and radiotherapy treatments, and for some it means death. Some of us had cancer before we knew our BRCA status, others had family history to warn us and give us the opportunity to choose risk reducing surgery. For many, it makes us appreciate the life we have more than we did before, because nothing is taken for granted anymore.Customer 4
Excited for tomorrow's BRCA panel at Limmud at 12:10. A chance to hear personal testimonies and think through the issues together #limmud
Serial measurements of CA125 with ultrasound screening improves survival and reduces unnecessary surgery scienceblog.cancerresearchuk.…
Big launch today of the new BRCA PROTECT Research Clinic at UCL. Watch and please share our launch video: youtu.be/nn85HUexGC0