Anyone been diagnosed with BRCA 2 gene mutation?

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Hi, I’m currently going through chemo (just done my 4th of 6) after being diagnosed with GRADE 2 invasive ductal cancer after it was initially thought to be DCIS in April last year. I’ve had a mastectomy also. 
I had been referred to genetics due to my age (44) . Yesterday I had the call to say I had the BRCA 2 gene mutation. I just feel like this is never ending cycle . Just as I am getting somewhere something else pops up! 
Anyone been through this & have any advice or know what to expect going forward? The lady I spoke to said I will be referred back to the breast surgery team & to gynaecology as I can have my other breast removed & a hysterectomy. 
I feel so tired of this all. I had been looking forward to the chemo being over & putting this behind me but looks like I’ve gotta keep going .

MRSB x

  • Hi  , I haven’t got the BRCA gene mutation but I was positive for an ATM gene mutation. It carries a moderate risk for breast cancer so I have a higher chance of getting another breast cancer in my other breast. But it apparently doesn’t warrant any other treatment at this point. 
    There’s a separate group here which I joined while I was waiting for my test results. I’m not good at posting links but will check what it’s called. You could post in that group as well as here and it’s worth reading the threads there too. It’s not as ‘busy’ as this group but still worth a look. Love and hugs, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Hi again, it’s the BRCA Positive Forum on this site xx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Hi MrsB23, hope you are ok. 
    I have so far had 2 ops on my right breast (3 invasive tumours and DCIS) and am waiting for BRCA results (due this week in theory) before further treatment.

    I don’t know much but sharing what I was told in case helpful. 

    With a positive genetic mutation, I have been told it’s possible to monitor breast/s but more difficult with ovaries. So the decision is whether to have preventive surgery (removing breasts and / or ovaries) or be vigilant / have regular checks. Your mutation may not be ovaries too. 

    I hope you get an appointment soon to discuss options and wish you all the best with the decision making. X 

  • Hello. 
    I was diagnosed with IDC grade 3 in January ( last year) and my genetics came back in the June with BRCA 2 mutation ( I’m 41).  I hear what your saying about ‘never ending cycle’ 

    We are all different but my experience with having the BRCA 2 has felt less overwhelming that the cancer treatment and initial mastectomy:  I am on Olaparib ( due to BRCA) and although some side effects they aren’t like chemo.  I’m back at work, adjusted duties but back.  And am now waiting for gynae and further mastectomy where I’m hoping to have bilateral reconstruction at the same time.  Feels like a lot of waiting.    I haven’t managed to talk to many people who have had a cancer diagnosis ( and treatment) and BRCA so happy to support and talk with you if you would find it helpful.   My sister has just tested positive and is starting to look in to preventive options. If you have any specific I can help with let me know. I hope your mind is not too full.  

  • Hi I'm new here going for chemo next week I have very bad anxiety don't know what to do x

  • Hello.  I’m sorry that your feeling like this, and I don’t know if this will help, but I think we all had/were/are anxious as we navigate through what we have to, to get through this. 

    My experience and that’s all I can share is that I feared more than I needed to. Told myself to just take one step at a time. 1st step turn up for chemo. And so forth, the first time I was really anxious, and the second time not so much.  This group has lots of people  that have done this, are doing it and I’m sure they will all tell you your feelings are ‘normal’  Tell your team how your feeling. I hope we can offer you some reassurance x

  • Hi MrsB,

    I found out I had a BRCA1 mutation after finishing chemo and radio so I know how it feels when you say it's never ending.

    To the contrary though, my mutation turned out to be more of a positive thing for me. My cancer was triple negative and at the time (2021/2022), aside from chemo and radiotherapy, there was nothing else offered to help combat recurrence. Since I had the genetic mutation combined with HER- cancer, I was offered to take olaparib for one year to reduce my recurrence risk. All treatments come with some side effects but with olaparib it was minimal and the year I took it meant I had a year of peaceful reflection about having a preventative mastectomy (since I had so much radiotherapy, I was advised to wait a year before the surgery).

    It also brought me a lot of peace when I found out about my mutation as it answered part of the 'why did I get cancer so young' question (I was 35 at the time). My family were tested and my sister came back positive, so I also feel like I helped to save her from going through cancer as she has since had preventative surgery too. 

    I know there are some differences with BRCA1 & 2, but for me I was offered a double mastectomy, and fallopian tube removal after 40 followed by ovary removal once I hit the menopause. The two stage fallopian tube/ovary removal is a trial as it's hypothesised that most ovarian cancers start in the tubes first and progress into the ovaries so by removing those first you reduce some of the risk and keep your natural hormones. I turn 40 later this year, so that part is still to come. For now, I have an annual pelvic ultrasound.

    It feels like a lot, especially if you're going through chemo at the minute and you're probably exhausted, but actually it's a good thing to be aware of it and to have the knowledge to be able to protect yourself in future. Of course I would rather to not have it than have it, but if I do have it, it's better to know about it! 

    Wishing you the best of luck and don't hesitate to ask if you have any questions :) x

  • I'm in the same boat right now. Diagnosed with IDC middle November 2024. Had ultrasound, MRI, PET/CT, all measuring my tumor 14x6 mm with 6-cm DCIS around, no suspicious lymph nodes on any scan. According to core biopsy, it was ER and PR+, Her2-. Surgery took place on 7th January, mastectomy with immediate implant reconstruction. 3 weeks later, pathology showed 3.2-cm and  6-mm invasive tumors with DCIS around and 2/6 positive nodes. I also got the genetic report showing BRCA2. My original plan was surgery with endocrine therapy, now it is chemotherapy, radiotherapy, PARPi and extended endocrine therapy. I am 50 and scared to death. I feel like it is getting worse with every new results and I have very limited treatment options (cdk4/6 inhibitors does not seem to work and probably endocrine therapy  is also less effective due to the BRCA2-mutation).

    Those who already received chemotherapy, which chemotherapy drugs were used? Did you have any major side effects?

  • Hello Wave 

    my chemotherapy looked like this:

    3 doses of EC (21 days apart) followed by weekly pacitaxol for 9 weeks. Everyone is different as we all say but my side effects looked a little like this.  
    EC was the most tiring as in I felt fatigued and slept on and off for 9 days ish- they controlled any nausea I never felt sick once, I did however lose my taste ( or altered) after 9 days I was sluggish but overall feeling quite ok. I lost my hair quite quickly ( didn’t try not too) definitely fatigue was my biggest battle.

    weekly pacitaxol was a breeze in comparison I spent 1 day a bit washed out and the next doing normal ish things- cooking, washing but no aerobics or medals for exercising. 
    I understand the feeling of things getting worse, I felt like that too in the beginning with every scan and test coming back with something else to think about or deal with. I hope one of us can bring you some comfort. Hugs and thoughts being sent your way x

  • Hi 

    My chemo was 4 cycles EC every 21days. The first 10 days I felt fatigued with gastric upset. I lost my taste and had mouth ulcer, however I was advised to freeze pineapple juice into cubes. I smashed them like a smoothie and tucked on them. This helped apparently there's an enzyme in the frozen pineapple that helps. It did.  Not pleasant but doable. I slept a lot and lost my hair at 2nd cycle. I didn't try cold cap.

    Good luck with your treatment plan  sending hugs xx