BRCA

Hi ladies,

Did you have to ask to be tested for the BRCA gene or did they automatically let you know? I have never discussed this with my consultant and wonder if I should as I have a daughter.

Best wishes to everyone, Zena xx

94 Replies

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  • Hi Zena. They put me forward based on my family history. xx Kathy xx

  • Thanks Kathy xx

  • I had to ask

  • Thanks x

  • Me too

  • My nurse said it's standard now. I got letter in post xxx

  • I wonder why it's never been mentioned to me. xx

  • I had to be asked and sign consent zee x

  • I'm on it. Going to contact consultant as doctor won't do it. xx

  • I wish they would make it standard here. Where I'm from it isn't offered. My insurance wouldn't cover I had to pay out of pocket to see if I had it

  • That's a shame but at least you know. It can't be offered here willy nilly as no one has mentioned it to me. I'm looking into it now though. xx

  • I don't think they can test you without your permission x

  • Having read what everyone says I think I'd like it just to be on the safe side. x

  • I agree with you, if there is a family history they may suggest the test otherwise not but it will be introduced for all patients new and recurrent in due course to tailor the treatment to suit the patient. Also if you have had surgery recently ask if your biopsy was profiled and if so what was the result

  • I feel so dim. I have no idea about it. My next appointment isn't for another six months. My surgery was four years ago. Thanks for the advice xx

  • probably not available then but do ring your CNS and ask for the braca testting which is a blood text

  • I've phoned Suzuki and been told I can have it. I'm just waiting to find out when. xx

  • I asked, and it wasn’t a problem to have the testing done.

  • Thanks xx

  • Hi Zena,

    I was tested because of my disease hIstology. They asked permission first.

    X

  • I haven't got any history as I was adopted so I'm a bit disappointed they didn't do it just for peace of mind. x

  • Sorry Zena I meant the histology of the disease from the biopsy - X

  • I'm always getting confused. I went to doctor today but they won't do it, I've got to go through consultant. xx

  • Hi Zena, can you contact your CNS or Consultants secretary tomorrow

  • I phoned today and as long as it doesn't affect my trial I can have the test. xx

  • Hi Zena. I too was adopted, and I was offered testing because I had no family history, and because my type of cancer is linked to the BRCA gene mutation. I turned out to have BRCA2, so both my children were also offered testing. My daughter took up the offer and found she too has inherited the gene. I think you should push to be tested.

  • I will Numi, I don't know what I'll say to my daughter. I'll keep it to myself for now until I know for certain. Hope you are all okay. xx

  • My consultant did the test at diagnosis as he said result could reflect on treatments available and it takes time for result. Mine took 6 weeks. x Shona

  • Thanks Shona. More waiting in an anxiety state then. xx

  • Hi Zena. They wrote to me asking me to go in and be tested. I’m BRCA2 positive. I’m glad I know. Was a bit surprised. Xxx

  • Thanks Suzanne. I think I'll look into it. I don't know anything about it so now's the time. xx

  • I didn’t really know anything about it, just received a letter so thought it best to find out.

    I think it’s good to know. They told me I’ve now got a greater chance of getting breast cancer but a positive is that there are more treatment options - apparently.

    Hope you get on ok. Xxxx

  • Thanks Suzanne, doctors won't do it so I'll contact consultant when I get round to it. xx

  • After years of attending my Mum's appointments with my two sisters and young daughter, and never knowing Mum's BRCA status, we requested Mum was tested. There were no problems when we asked, and turns out it was negative, but frustrating we weren't automatically offered. x

  • Thanks Charlotte, I'm feeling a bit like that now. Perhaps it was down to cost but it doesn't seem as if anyone has had trouble getting it done once they ask. xx

  • A lady from Target Ovarian told me once diagnosed with OC, you are entitled to ask to be tested. It's something they are big on making aware xx

  • Thanks Jessica-Diane. I want to know now. The more I'm reading all the replies the more I want to know. xx

  • My oncologist said the NHS have said it should be now done for Ovarian Cancer as the incidence of BRCA gene is a higher percentage than in Breast Cancer and asked if I would like Genetic Testing. So am now waiting for it

  • Are you waiting to be asked or waiting for the results? Either way, good luck xx

  • I went on holiday two days after my last appointment. We only got back on Sunday. My CNS said she would ring me when I got back to make an appointment for Blood Test. So I expect to hear from her soon. Will let you know when I find out more. Good luck to you too.xx

  • Hope you had a good time on holiday. Hope you don't have to wait too long. I hate all the waiting for everything. xx

  • Hi Zenaj, I am surprised you haven't been offered this test by now. It was offered to me right a way. The only problem it took almost a year for the cancer nurse to do it she kept making excuses. I am negative but it's really worth asking for it.

    I have a lot of oc & bc in the family if you don't they might not be too concern about testing you but do ask.

    Also have you had your ct scan results yet? Please keep us up dated take care Cindyxx

  • Hi Cindy, No, I'm still waiting for the results but I'm assuming from this that all is well.

    I don't know if there's any family history as I was adopted. In saying this I have recently found my birth family and have my mothers death certificate. She died from Kidney cancer.

    I'm going to contact my consultant as my doctor said they can't do it as it's genetic. I hope they don't try to put me off or take ages like you.

    Thanks Cindy, xxx Zena

  • Hi Zenaj, I had it done at the hospital where I receive my treatment. I would ask your onc because they should be able to offer it to you. The fact you don't know your family history should go for you.

    In my case the reason I had to wait a very long time was down to the nurse but she has gone now. The cancer nurse that has taken her place is so much better.

    It can take a couple of weeks to get your results. I will keep my fingers cross. Take care Cindyxx

  • Thanks Cindy. I'll let you know how I get on. I'm going to phone my trial nurse tomorrow to see what she says. xxZena x

  • Hi Zena, that's a good idea. I can't see any reason why they would refuse you. Just one point they can fobb you off much easier by phone than in person. If they do this then ask for an appointment to see your onc. I am sure the trial nurse will changed her mind.

    I am sorry if I come over as if I don't trust anyone but to be honest I don't. Take care Cindyxx

  • Don't blame you Cindy. I told my cancer nurse today that there is so much I didn't know about before joining Ovacome. I feel a bit thick and I'm not stupid. Anyway, she's up for me having it and going to check with the trial nurse to make sure it won't affect that. I'll let you know what happens. xx

  • Hi Zena, are you on a trial? I keep asking about trails & have I been fobbed off for the last 2+ years. They keep saying I am not there for trails yet.If you are on one good on you!!!!

    I am glad they will be looking into the BRAC testing for you,.

    I wish I had known about this site when I first found out I had oc. I knew so little even though members of my family had this cancer. I believe this site has helped me to in prove my chances of living longer. Take care Cindyxx

  • I agree Cindy, I didn't know about this site. It's been 4 years since my operation and I learning lots on here.

    I was asked to go on a trial at my diagnosis meeting. They knew I had completed paid trials in the past so maybe that was why they asked. I've had communication from places round the world to complete surveys about the cancer as well. These were one off things where the one with the hospital is a five year trial.

    At one of my meetings my trial nurse told me I was very lucky because most of the ladies on the trial with my stage cancer had died. I didn't answer that one. I think she meant to make me feel better to still be here but actually I had to laugh because I thought it was an odd thing to tell someone.

    It's good to have the support of the ladies on here and I much appreciate it. xx

  • Hi Zena, I could make a book with all the funny things GPS & professional say to me while having cancer. Maybe if your nurse was sitting in your place she would of seen what she said to you in a different light.Please keep us up dated with your results. Take care Cindyxx

  • Will do Cindy. Doesn't look like anything's going to happen this week. xxx

  • Hi Zena, I was ask if I would like to have the BRAC test done I did as I have two daughters, my test was negative which is good news for my daughters.

    My understanding is if you are positive it my open option to more treatment.

    I would ask about it next time you see your consultant,

    Best wishes and take care Lorraine 💙💙

    ps, Zena as you asked I will post a picture of the blue mountains behind my property it is a lovely area but sometimes has it's disadvantages we are coming into our fire season , only 3 years back we had a bad season 175 home where lost and more damaged in my street and surrounding areas.

    Nature can be harsh look at your side of the world.

  • Hi Lorraine, I would love to see the picture it sounds beautiful. It must be very hard to protect your home against fire season. I hope your home is safe its the last thing you need while dealing with oc. Take care Cindyxx

  • Thanks Lorraine, I'm looking into getting it tested now as I have a daughter.

    Sounds really scary where you live. I remember when I was in South Africa watching fires approaching and that was scary but then I found out they were purpose set fires to control the National Park.

    Where I live we had a really bad flood. People were killed and it affected Netherlands as well. Many died. That was way back in 1953 before I lived here. We now have a sea wall all round the Island and that protects us, thank goodness.

    Look forward to the picture. xx

  • I asked, because there was some family history; took a while as I think they are getting busier and busier as more is known about this....like everything I guess! love C x

  • Thanks Chris, xx

  • I was relieved to find I'm negative because I didn't have to worry so much about the wider family. I would say though that BRAC mutations probably aren't the only risk factors. I did have to ask but I believe testing is now available more widely because of targetted treatments.

    When looking at family, it's worth taking into account that men can pass on mutations to their children so the paternal line is important. Lots of doctors don't take this into account but the situation is improving with greater awareness. Xxx

  • In case you weren't told, you can be Negative on your first test, but until you reach Menopause, it is possible for the BRCA mutations to occur during your many monthly cycles. It's considered "fair wear and tear". So a second test after Menopause might find your status changed to Positive.

    The good news is that they have found a way to reverse the mutation and restore your natural defense against OvCa.

  • Thanks for reply. I'm well through my menopause. I had that in my 40's and I'm nearly 66 now. I'm thinking of my daughter really rather than myself. xx

  • Thanks Tina, glad you had good results. xx

  • Hi. I was asked if I would like to be tested. I thought about it for a few days and as I have two daughters an six granddaughters knew that I had to do it. I also have two sons, and they can pass the gene onto their daughters. Sometimes, people don't realise that.

    Jenny

  • Hi Jenny, thanks for reply. I'm going to sort it out as soon as I can, mainly like you, for my family. xx

  • Hi i asked for it as i have 2 daughters. Before you had to have some family history but i was told by the research nurse who consented me that it is going to be funded for all OC patients.They are also developing a new gene test which should be available in 6 months time which is going to be more accurate . it would provide more info for breast cancer pts. It was on the news recently.

  • Hi there, I saw that on the news if it can help breast cancer patients then one day it could help us. There are new discoveries for testing cancer & treating it all the time. We have to hope & pray the sooner the better. Take care Cindyxx

  • Thanks Mumtaz, I can't believe I don't know any of this. I'm in the process of asking about it having read everyones replies. xxx

  • My gyne surgeon recommended it due to my type and grade.

  • Thanks Chezp, xxx

  • I had to prompt the question, then I had to do a family questionnaire from Birmingham genetics dept via my GP, then I had an appt with a geneticist. I'm neg, but did do lots of thinking what I'd do if I was positive.

  • Thanks Kay, Your experience sounds much more complicated than others. My GP won't do it, I asked this morning. I'm going to contact my Consultant or Trial Nurse. xxx

  • Hi

    Not sure whether they will test everyone in the future. My type of oc which is mucinous is known not to be braca. Cannot remember why now.

    Fay

  • Thanks Fay. Perhaps they'll tell me that. I don't know what sort of tumour I had. Hope you are okay. xx

  • I was referred for gene counselling by my surgeon. However they decided not to test me as there is not much family history of cancer and also because clear cell is not normally associated with inherited cancers apparently.

  • Thanks Neona, someone else mentioned about the clear cell. I have no idea so I'll request the test and see what happens. xx

  • Hi Zena I was put forward by consultant to be tested for BRCA and also Lynch syndrome, due to father having bowel cancer at 51.

    Ellsey xx

  • Oh dear Ellsey, you must not have known if you were on your head or your heels. I hope all was okay for you. xxx

  • My Mother (77) asked for it, as she has reccurent OC and she was tested negative. If she were positive, she'd had better solution for her treatment, it is a OLIPARIB- LYNPARZA, tablets, that keep the cancer not growing further. As she is BRCA 1&2 negative, she has to continue with standard Chemotherapy, No4 this time- Caelyx and maybe Avastin. Sorry for my English, not native language...

    Wish you all the best!!!

    Maja

  • Thanks Maja, nothing wrong with your English and much better than any of my language efforts. I can only speak English and sometimes even that isn't good. More Cockney having East End of London connections and living in Essex.

    Hope all is well with you. xx

  • Hi ZenaJ I was asked by my consultant if I wanted to have BRACA testing and was then referred to the Genetics team. Perhaps, it depends whether your hospital have a genetics team or not. I would have a chat with your consultant. Family history plays a large part too - you can have a strong familial history without being BRACA1 or 2. Personally, I think it should be offered to everyone now, but I know that regionally that isn't the case. Good luck anyway, Sue xxx

  • Thanks Sue, I'm definitely going to enquire and hope they let me have it, for my daughters sake. I'll let everyone know how I get on. I've already been told today that my GP can't do it. xx

  • Hi Zena- I was asked for the genetic testing. I had to sign consent forms.

    However I was not asked for my tumor to be profiled and it was. I received a hefty bill. My Inc nurse said to call them and they would waive fees if insurance did not cover it.

  • Thank goodness for that. We're so lucky to have NHS. I don't know where I'd be without it. Hope you had good news. xx

  • I had to ask. I only found out when read on a google site. I spoke to my cancer nurse and she was trained to do the test but hadn’t suggested it.

  • Thanks for your reply. It's so random. Lucky I'm in this site to know about it. xx

  • Shouldn’t be random should it?

    Sad that every county/country seem to differ so much.

  • Not just every country but every hospital by the look of it. xx

  • It's a very expensive test. I'm negative Dr tested. Heard a lot of insurance won't cover.

  • I'm expecting to be negative too but it won't hurt to find out. If I'm entitled to it, I want it. xx

  • Put forward by the onc after he asked if I wanted it.

    Em

    X

  • Ps blood test in mid July and positive result from Guy's & St Thomas' in sept. I've just had appointment through to see genetics team, breast surgeon etc last week in October. Pretty good service really. Just debating how much to tell my Mum. As she will worry but may want to get tested too. X

  • Good luck Em. Even though I'm expecting negative I'm already considering what I'll tell my daughter if I'm wrong. I'm not mentioning it at all until I know. xx

  • Thanks Emxx

  • I asked to be tested as had bowel and ovarian cancer. Just had result and it was negative.

  • That's one bit of good news xx

  • I was offered the test on my first visit with Oncologist I've just found out I've BRCA2

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