New Here, brca1 + and tnbc

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Hi everyone

New here and just trying to navigate my diagnosis. I found a small lump back in July, doc sent me for ultrasound and mammo. Radiologist report identified it as a complex cyst. Mammo showed density. Told me to come back in 6 mths. It was growing so I went back in 3 weeks and did repeat ultrasound. Came back as complex cyst again. After 4 ultrasounds, 2 mammos,  2 spot compressions and multiple Radiologist reports all stating birad 3 complex cyst, me persisting to be seen by a specialist, finally my doctor sent a referral 2nd week of Sept. Biopsy ordered and came back as triple negative bc. I was referred to genetics and tested for brca. Came back positive. My team has advised me not to google so I haven't but every now and then something very scary comes up in my social media and poof.... negative thoughts come racing in. I'd love to hear some positive stories here, life after tnbc? Are there groups here with survivor stories? Anyone here brca1+?

I've started chemo and immunotherapy with plans for a double mastectomy, more immunotherapy and radiation... I'll be removing my ovaries as well but 1st comes 1st!

Thank you Blush

  • Hi Annieb80

    Welcome to the forum and I am sorry to hear that you have been diagnosed with triple negative breast cancer and that you tested positive for the BRCA 1 gene.  I was diagnosed with triple negative breast cancer over three years ago and after having chemo, surgery and radiotherapy I made a full recovery.

    There is a BRCA positive forum which you can join but just to warn you it’s not a very busy forum. It’s called BRCA Positive Forum and here’s the link to it: community.macmillan.org.uk/cancer_experiences/brca-positive-forum.

    Wishing you:the best of luck with the rest of your treatment and with whatever comes next for you.

    Best wishes

    Daisy53

    Community Champion Badge

  • Hi Annie,

    I was diagnosed with TNBC in July 2021 and later found out that I had a BRCA1 mutation too. i had chemo, radio, a few operations and also took olaparib for a year. In March 2023 I had a double mastectomy and since I'm still only 38, my ovary removal is planned in a few years time after I turn 40. I am cancer free 2.5 years later and feel very happy and healthy. I think I feel better than ever after my mastectomy because I know my recurrence/new cancer risk has dramatically reduced. I hope that your treatment is going well so far and that you too will have a positive outcome xx

  • Hi Anniebe80

    I'm also BRCA1 positive.

    I was diagnosed with TNBC in January 22 at the age of 38.

    I did 6 months of chemo then soon after, in the July I had a double mastectomy. I also had to do 12 months on Olaparib (oral medicine). I have also just under gone a risk reducing surgery to remove my ovaries and fallopian tubes.

    I will try and answer any questions you may have, there is so much to take in my brain is still boogled after 2 years of it.

    Sending lots of positive vibes and virtual hugs. x x x

  • Hi scrivs38,

    I too have TNBC and BRCA1 gene mutation. I have just undergone 6 months of chemo and bilateral mastectomies with reconstruction. I am hoping to start Olaparib shortly and wondered if you had any side effects from it?

    Thank you and looking forward to hearing from you.

    Lovely to hear all the positive stories and how well you're doing. 

    Xx

  • Hi Maisie, 

    I took olaparib for a year and found that for the first 1-2 weeks I felt like I had a kind of flu and was quite lethargic, but that quickly disappeared. Then, for the first month or so I would sometimes have dizzy spells when doing exercise, but again, that disappeared. After that, I didn't have any noticeable side effects from olaparib. I had regular blood tests and my white blood cells remained low and my kidney function decreased throughout the course of treatment, but my oncologist said this was normal (and temporary!) and it was important to always stay hydrated to help. Once I finished it, my kidney function quickly improved again.

    xx

  • Then you. That's really helpful. 

    All the best to you.

    Xx

  • Apologies for the typo. Thank you 

  • I can't believe all you went through before you were given a biopsy.  I have cysts in my right breast and found a lump in my left. I had a mammogram, ultrasound and a biopsy all on the same day despite the doctor saying to me that she's pretty sure it's another cyst.  It was the sonographer who ordered a biopsy because the "cyst" looked different to the others.  I was diagnosed TNBC BRCA1 and am the first in the family to suffer.  With it being a 50/50 percent chance my brother's, sister and son having the gene, I'm worried about them because I have little nieces and nephews everywhere. My dad passed from cancer just before Christmas but not from anything under the BRCA "umbrella". I'm awaiting a geneticist appointment on how to approach my family to see about them getting tested. 

    I'm actually currently having chemo and immunotherapy as I type this.

    All the best for you in your treatment. It's a massive emotional and anxiety ride all this.

  • Hi Annieb80

    Apologies for the late reply.  I'm a little ahead of you in the journey . Its all v daunting but doable. As you say, one step at a time.  I was diagnosed with tnbc back in May last year. BRCA1 gene mutation found on genetic testing. I had 6 months of chemo / immunotherapy, then bilateral mastectomies with reconstruction. Thankfully lymph nodes were clear and bc shrunk to 3mm so I had a v good response to the chemo. Radiation whilst was originally part of the plan was deemed not necessary once the histology results came back. However because it hadn't completely  gone with chemo, I'll start Olaparib which is a PARP inhibitor to reduce risk of recurrence in the future. I'll also have ovaries and fallopian tubes removed in due course. It's certainly a lenghty journey but you can do it and I'm sure you'll come out the other end. This is a great site for support and information sharing so do use it and yes don't google. Chemo and immunotherapy isn't nice but tolerable. I was OK with it though it did knock my haemoglobin causing anaemia. All manageable though. I was dreading the surgery but again with family support it wasn't as bad as I was expecting.

    All the best and do keep in touch. Ask anything and remember we are all here to help and support each other.

    I for one have been v grateful to everyone who has responded to my queries and anxieties. 

    Take care lovely.

    Xx