GENE TESTING
Just a thought. If, like myself, you are diagnosed with bilateral breast cancer (Stage 2), wouldn't it make sense to have a BRCA1 or BRCA2 gene test done prior to any surgery? My radiation oncologist - seen a few weeks after surgery ordered the test prior to radiation treatment and now the results are holding that up. The frustrating part is... if I do have the gene, then radiation therapy is useless and I may need to consider a mastectomy! Would it not be much more prudent to have the testing done first in order to avoid "unnecessary" surgery and all that goes with it? The whole process has all felt quite rushed (although the team has been great throughout) and now this is adding to it all - potentially unnecessarily.
Do you have the BRCA1 Gene Mutation? Are you Interested in joining the BRCA-P trial?
This popped onto my FB feed .... thought it may interest those with the BRCA1 gene Game-Changing Research to Prevent Breast Cancer in Women with a BRCA1 Gene Mutation The BRCA-P clinical trial has the potential to become a game-changer in the way we manage breast cancer risk, by preventing the disease from ever developing in women with the BRCA1 gene mutation. Currently, many women with the BRCA1 gene mutation undertake life changing preventative measures for breast and ovarian cancer, including the surgical removal of their breasts and ovaries. The BRCA-P clinical trial hopes to offer these women a better prevention option. You can Participate in a world-first clinical trial to prevent breast cancer in women with the BRCA1 gene mutation. Are you Interested in joining the BRCA-P trial? Click on the link below: https://www.breastcancertrials.org.au/breastolution/
Clinical Trials Update
Hello members, Our BCNA Senior Policy Officer has provided the below information regarding clinical trials that may be of interest to our members. These are also being shared in our Health Professionals Network News and the Metastatic Advisory Group (I shall post in the mets private group re EMBRACE Phase II trial). Nivolumab neoadjuvant/adjuvant clinical trial The CA209-7FL neoadjuvant/adjuvant breast cancer trial continues to be open to recruitment, running in South Australia, New South Wales and Victoria for patients with estrogen receptor-positive, human epidermal growth factor receptor 2-negative early-stage breast cancer. Bristol Myers Squibb will be implementing a digital advertising campaign expected to launch in October/November 2021. This will target both health professionals and patients. More information on the trial can be found here. EMBRACE Phase II Olaparib clinical trial EMBRACE is a Phase II clinical trial of the PARP inhibitor, Olaparib, in HR-deficient metastatic breast and relapsed ovarian cancer in patients without germline mutations in BRCA1 and BRCA2. Patients with metastatic triple negative breast cancer (TNBC) or relapsed platinum-sensitive high grade serous ovarian cancer (HGSOC) after first line/adjuvant therapy who have an eligible tumour molecular analysis result are suitable for the trial. There are 11 sites open in Australia in NSW, QLD, VIC, SA and WA. More information on the trial can be found here or by emailing embrace.study@sydney.edu.au We encourage members to talk with their treatment team in the first instance about any clinical trials.
So I have BRCA 2 mutation 🙄
I'm coming up to 12mths post chemo. 18mths post double mastectomy. 6mths post oophrectomy (ovaries out) after my IDC diagnosis after self detecting a small lump at age 46. Genetics is obviously something they put on a back burner during all this process but my sample was sent to the US after my recent genetics appointment. Results are in BRCA 2 identified.. I have mixed feelings tbh. First thought..oh my kids! Please don't let my family endure anymore elevated cancer risk. I have 3 children 2 daughters and a son i guess the chances are one of them does at least.. Then thank goodness i opted for a double mastectomy, and i chose to remove to remove my ovaries also. It looks like my risk of other cancers is also elevated now. Sometimes i really wish i could go back to the good old days, pre cancer! Oh how sweet was life! Today i have to talk with them about getting tested. 😕 but knowledge is power they say. Thanks for listening 💜
Who has to test for BRCA Gene
Hi ladies I'm 34 and got diagnosed with stage 2 IDC (clear margins lumpectomy, no lymph nodes involved). I've never been asked about testing for the BRCA gene. I have no family history of any time of ovarian or breast cancer. Should I be requesting for a test.. or is that only reserved for those who pose as high risk.
Surgeon recommendations for bilateral salpingo-oophorectomy in Melbourne
Hi ladies, I am currently searching for a gynaecological oncologist in the Melbourne Metro area to do my bilateral salpingo-oophorectomy surgery. This surgery is partly for treatment of metastatic breast cancer (ER/PR+) and so I don't have to have zoladex every 4 weeks. Also, I have a BRCA2 mutation so this surgery will be a preventative measure to lower my risk of developing ovarian cancer. My oncologist (whom I adore) has referred me to "the best" surgeon but he has terribly high out of pocket costs for this type of surgery. I know that I can go to a public hospital but I have private health insurance and would like to utilise it. I was wondering if anyone could provide any advice on who they have seen and roughly how much they were out of pocket. Thanks in advance, Rachelle
It's back again :(((
I'm a BRCA 2 carrier. Had DCIS the first time (2013) at 22 years old. I had a lumpectomy back then, no radiation no medication, have no idea why. Now 2017 my DCIS is back again in the same breast (the right). At first, I didn't want to have a mastectomy, but my DCIS is in different locations and I saw two surgeons and they highly recommend it, so I have no other choice. I'm not married, and after this don't if I ever will be. I still wanna keep my other healthy breast and I pray to God every day that it stays away from the devil CANCER. Would love to have the joy of breastfeeding my kids, if I end up having any, although I don't know what the future has for me. It's so hard to be forced to let go of a very precious part of your body and feminine. My concern now, I don't know if I shall get implants or not because I don't have much on my body to take from. I'm worried about implants due to the complications that so many women had in term of illness and so on. I would really appreciate if anyone of you ladies with implants or had single mastectomy and implants share their experience both negative and positive. Thank you in advance.
Those that carry a faulty gene
im a 52 yr old who's had Bc twice . Each breast , resulting in 2 lumpectomys a masectomy /lat dorsi. Both sides radiation . Currently taking tamoxifen . Am down for gene testing but earliest appt is November in my area. As I don't tolerate tamoxifen well the plan is to take overies and tubes out. I met with gyno and said I want full hysterectomy but he says no I'll just take tubes and overies and if need b down the track can take the rest . Like I want to keep doing this . Can those tht have been through similar plz give me input. I even read there's a possible link between uterine cancers and braca gene?? Should I b pushing to have all removed?? those with faulty genes wht did u do?
Touching Base to say hi
Hello everyone, It has been quite some time since I have been on here so I feel a little out of touch with everyone. I hope you are all travelling ok. Following my bilateral mastectomy and TRAM flap recon back in July, I returned to fulltime work in September. Yeah, I know, crazy lady. But it was good to be back - to a life away from cancer - despite battling a frozen shoulder, a result of all the trauma inflicted on my poor arm this year. A week before Christmas I went in for my third surgery for the year - this time saying goodbye to my ovaries and tubes. My last preventative surgery, (being BRCA2 pos) and the pathology results came back all clear so yay. Bad news though is that while the surgeon was in there he noticed that something wasn't quite right with my intestines - red, inflamed, some scarring apparently. I have suffered from IBS my whole life but chemo this year really affected my tummy and with all the other drugs I have had thrown at me, things in that department haven't exactly been moving smoothly - or in most cases, too smoothly. My surgeon suggested Crohn's. I'm hoping it's not and that it's just some side effects that can be easily fixed. I'm grasping. Anyway, just when I thought that the last surgery marked the end of it all, no, it has marked the beginning of something else. So now it's off to the gastroenterologist. I'm having a little difficulty navigating this new site - I kind of preferred the old one, found it easier. But I just wanted to put it out there that if anyone needed a chat or some advice following my journey - early breast cancer, triple neg, lumpectomy, chemo, BRCA2 pos, bilateral mastectomy, TRAM flap recon, ovaries and tubes gone - then I am more than happy to share my experiences. Heck, I can even throw in a frozen shoulder, early menopause and now intestinal issues following treatment to the mix!! It's been a hell of a year, How many days left? Sherril
BRCA 2 gene Positive :(
Just found out i have tested positive for the BRCA 2. There hasn't been a family history of breast cancer so this has come as a complete shock. Just wondering if there is anyone who is BRCA positive and what their experience has been with future treatments. Did you choose to do preventative surgeries or just rigorous screenings?