Well, just come back from Genetics hospital appointment to get results of my blood test. I'm BRACA 2. I simply don't know how I feel 🤔
I lost my darling sister to this horrible disease (only 2 years ago), and when she was diagnosed at 57 yrs I was told I didn't need testing as I was very low risk!!! When I was diagnosed October 2016 at the exact same age of 57 I knew it couldn't be a coincidence.
In one way I feel relieved that I know why I got it and to know I can access Parps if required, I feel incredibly selfish for thinking that because of giving this legacy to my daughter and son, my poor niece and nephew who are still grieving for their mum have to face this news too. But then I think ..well at least they can be closely monitored.
A downside is that I now have to think about my boobs. It's been a dreadful traumatic 9 months and the thought of a double mastectomy after all of that is too much. I guess I will keep screening for now and see how my oc behaves.
Sorry to ramble, I'm just full on f mixed up emotions right now.
Hope you are all ok
Marian x
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I am so very sorry about this...please don't apologize....you have had three of the most horrible traumatic experiences any human being can have in three years ....plus you now have this ultra distressing news. All I can say is be kind to youtprself and do what you would advise your very best friend in the world. Don't rush into any major decisions , you need time to recover from these experiences. Surely with very careful and frequent monitoring you will be able to delay a decision for some time ?
Thank you for replying Charlie, you brought a tear to my eye but in a really good way, you are so correct when you say that I don't need to make any major decisions right now.
I'm going to try to appreciate my current NED and leave everything else for now
It's only natural to feel this way on the plus side more options are available in future should you require them. PARP's are available for those not BRACA positive now as my special person will be starting them within 3 months of her 3rd line finishing hopefully it's the 'magic' tablet/medicine that works for many years for people, don't feel as if your being selfish unfortunately when you get this disease you have to be selfish to try and get through it yourself without being mean to anyone. People do understand this and your family will too xxx
Remember you need to enjoy the now don't worry about what could happen cross that bridge when it comes to it maybe book a few days away take your mind off it and remember you're an individual on your own teal journey and may not do what the average person does. My special person is doing well same as most people ups and downs 🙂 But we can't complain she's still here 2 years 4 months after initial diagnosis and being told plan your funeral you have 6 months with chemo, the surgeon was shocked to see her 6 months later for surgery 😊 Xxx
I think I probably know exactly how you are feeling, been there at the age of 47, done that, got the t-shirt as they say. Firstly, there is no certainty that you have passed on the gene to your children or that your sister passed it on to hers, you won't know until they are tested . If they do decide to get tested (and some people prefer not to ) and are positive then they will be monitored very closely from an early age. With regard to the issue of your boobs, I faced the same dilemma, however, I opted not to have an operation and have yearly mammograms , I decided that I just couldn't face a double mastectomy after all I had been through, personal choice/decision for various reasons. I've also been told that the risk diminishes the older you get, it will be worth you talking to your breast nurse who you will get referred to. The decision I made is reversible so if I change my mind at any time I can go ahead with a mastectomy etc. Feel free to ask any questions. Sending you a big hug xx Kathy xx
Thanks Kathy. It helps to hear from those who understand the conflict of emotions that this result has. I think that I'm going to take a very similar approach to you. Xx
Hello Marian..I was dx at 58 BRCA 1 and following my OC diagnosis. As at that age my risk for BC was falling I went for annual mammograms. Hope this helps xx
I can totally empathise with your situation but you just have to get all the information you can and then make your own decision.
I can just tell you that I was diagnosed brca1 in 2013. We thought our family cancers were genetic but didnt have the technology earlier. My mum, gt grandmother and gtgt gran all died of breast cancer. Mum was diagnosed aged 36 (died aged 40) i was also diagnosed with breast cancer aged 36 in 1999. I opted for a bi lateral mastectomy as mums cancer returned quickly and I had rather large breasts which would have been harder to match . I was then diagnosed with 3c ovarian in 2013, I am currently on a trial as I got a 2nd recurrence in march but positive and feeling well.
Both my daughters were diagnosed brca 1in 2013. My eldest had a bi lateral mastectomy 2 years ago aged 26 and her breasts look wonderful how things have changed since I had mine done, my youngest daughter aged 22 is having hers this year. I think being so close to cancer most of their lives helped them make their decisions.
My mastectomy isn't the greatest but then having them removed with cancer reduces your options a little as the tumour removal comes before cosmetic outlook. I look absolutely fine with clothes/swimsuit on lol - you do go through a lot of emotions but when you think of the possible alternative . I would rather be here enjoying my life and family than not😀.
Thanks so much for your response. You and your daughters have been so courageous. Like you say having had BC pretty much made the mastectomy decision for you.
I so very glad to hear that you are currently doing well, long may that continue for you. Very best wishes to you and your family too
So sorry you're having to go through so much at the moment. Not sure if my experience will help much but just wanted to share it with you. My ex husbands sister was diagnosed with BC at age 30 so was tested for the BRCA gene which came back positive so all of the family received packs giving them the the option to be tested too. My youngest daughter who was 20 at the time decided she didn't want to know, but my eldest who was 23 then decided to have the test, and sadly came back positive for BRCA2. Since then, her dad has had cancer, but has survived and doing really well, and then by some sick twist, just 1 year later I was diagnosed with OC at last Christmas. My treatment is also going well and my oncologist expects my scan in 3 weeks to be clear. Because I was diagnosed with OC I was tested for BRCA 1 and 2 and my test came back negative (go figure!) Once my youngest daughter finishes university, I'm hoping to discuss the option of her being tested again now that I have OC, but ultimately it's her descision.
I know i'm waffling a bit but I guess what I'm trying to say is, that maybe neither you or your poor sister have passed the bad gene onto your children, and even if they have the gene, it doesn't mean they will necessarily develop cancer, just the same way that I didn't have the gene but still got cancer anyway. Life's just a lucky dip sometimes isn't it and we just never know what's going to be thrown at us, but we just have to keep on fighting and the good news is that now you are being monitored closely.
Thanks for sharing your story. It's a very interesting one and has made me more conscious of whether we have BRACA or not, people still get these cancers regardless.
I hope that you get your clear scan and can enjoy NED, I've been NED from first line treatment and surgery for just over 2 months now.
I was also very surprised by the BRCA II positive dx. My father had had prostate and pancreatic 19 years ago (passed away in 1997) and we kept asking the doctors what the connection was since he got them 3 years apart and they said none, not a single connection. Never thought to be tested. When I got OC, to participate in a trial, they insisted on testing me and that's how I found out. I have two sisters and two sons, an aunt on my father's side with a daughter--and all got tested, all negative. I got lucky!
Anyway--two things: 1) I could not imagine another surgery (had two big, two small surgeries for OC) and at the end of chemo, went to the high risk breast doctor at Memorial Sloan to discuss (waited 6 months for the appt due to her highly regarded reputation of determining risk and assessment--that's her title!). She told me I am a "low risk, high risk patient". These were her reasons:
1) No history of breast cancer in my family
2) My ovaries are removed, therefore feeding less, if any estrogen to my boobs
3) Believe it or not, I exercise almost daily and she said that lowers risk by 30%
4) Carbo and Taxol is what they use to treat BC in BRCA II and if I even had had the smallest morsel of C, the chemo would have eradicated it. For now of course.
Her suggestion is 6-month monitoring. 3-D imaging, along with regular mammo, plus sonogram. Eventually she wants to move to MRIs every 6 months (she said not yet because MRIs are so sensitive, she is worried it will show a false positive and my clinical trial people will pull me off the trial if they suspect BC). So she wants to wait for the trial to be over (one more year).
This is my personal experience of course, but I was so relieved to not face surgery again and to be closely monitored. I still want both sons tested but they are in their 20s and even the genetic counselor said they have time till they should be tested. Still, there is a slightly higher risk of melanoma and they both go in the sun enough for me to be the "crazy Mom" demanding they lather in sunscreen---always, but minimally til they are tested.
BUT--my hematologist is BRCA II and before ANY disease, she had both removed--breasts and ovaries. I think I would have also preventatively. And she is fine and happy she did it--she has that "you do what you have to do attitude" and she said its a personal choice--no one can decide for you, but good doctors with experience in the matter can be helpful in discussing YOU to help you weigh your personal factors.
I hope this helps---I don't think anyone can say there is a right answer but one of my favorite things about this site is those who are going through it give their personal experiences and that helps me alot.
Good luck, wishing you some worry-free days, weeks, etc. and that you rest easy with your decision to be watched (as I am).
Thank you for sharing another interesting experience. You make many very thought provoking points . I think I will definitely wait and opt for close monitoring. Will wait to talk to the breast clinic to make a definitive decision & I just pray my children and niece and nephew test negative
Hi Marian, I have also been confirmed BRCA 2, same dilemma, not too sure which way to go, for now I will wait to speak to breast clinic, and like you pray we haven't passed it on to our children......
I think not knowing how to feel is probably how many people feel at this point. I think genetic testing brings with it an answer but raises many questions. It helps to give some direction to treatment and management, but then can raise many uncertainties.
My background is that I was diagnosed with OC at 39. With a history of BC on my mother's side I qualified for the genetic testing. However I tested negative. My sister was very conflicted about it and didn't want me to have the test. However, I asked her if she wanted to know my results before I told her (she did want to know). I don't know if she felt relief or not as she was already checking her breasts regularly because of the family history. My test of negative does not necessarily mean that there isn't a cancer gene in the family. There could still be BRCA from my mother's side or there could be a gene that is not yet known.
My partner went through genetic testing a few years prior to me for a completely different genetic condition which his father has. He tested positive. So he now has to watch out for the symptoms of the condition. I remember the day he got his results and how his father looked that day. As a parent it is an extremely difficult emotional experience I think.
There is nothing we can do about our genes. The differences that genetic testing provide are that it can help to inform treatment or regular monitoring. But that knowledge does not mean that we have to change who we are and what we can do with our lives.
As with most things in life this is very complex. I'm not sure there are many things that have a definitive right or wrong answer. Each experience seems to bring with it the good and the bad. I guess most people try to thrive by using the good things to get through the bad things.
Thank you, you are so right in that it doesn't have to change us. I can't help feeling guilty that I have this, but like you and everyone else says, it's no ones fault.
I can understand how you feel. I was told I was BRCA 2 positive while in the middle of treatment. It brings with it such huge decisions doesn't it - elective surgery, how to tell family members, and so on - at a time when we are already overwhelmed, exhausted, and unwell. I think it's ok to leave it for a while, let your mind and body recover from all you have been through without asking any more of yourself. Like you I was most concerned and distressed about my family ( my two daughters, my sister and my niece). I am wondering if you have spoken to a genetic counsellor? Its my understanding that it is part of NHS guidelines to offer this to all women who are BRCA diagnosed. The counsellor I saw was really helpful and she was able to talk me through what would happen if any of the children tested positive in the future. This helped me in turn to talk to my family. My oncologist was also reassuring about putting decisions about future surgery on hold and advised regular check ups were enough.
Good wishes for your recovery from treatment and thoughts with you for whatever decisions you make in the future.
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