Newly diagnosed at 32 and Brca1 +

FisalidaFisalida Member Posts: 4
Hi all, 

I would like to share my journey so far too. I keep reading all these amazing posts and I 've been drawn so much power from all of you!!!
I 've recently relocated from UK to Sydney with my husband and our little daughter and we were really happy to enjoy our new full of sunshine life here. 
I have had some abnormal bleeding since we first arrived and I decided to visit a GP. I 've been really cautious with any symptoms as I 've lost my mum from ovarian cancer and was tested positive with the Brca1 gene. I have also tested positive few years back but all the doctors in UK were reassuring me that I am too young to get any type of cancer at this moment. 
I was terrified that I had ovarian cancer, I had an ultrasound and I couldn't sleep until I got the results back. Long story short I 've had they found a polyp and a cyst. Few weeks later I had another ultrasound to see if anything changed, the cyst was gone but the polyp was still there and they booked me in to have a day surgery to remove it. 
Following all this testing my GP (thank god) suggested me to have a breast ultrasound too just for screening.
They found a tiny cyst and suggested to have a biopsy done just to put my mind at ease. Her actual words was - "If it was someone else I wouldn't suggest a biopsy, it is definitely a cyst, but because of your history I would suggest you to have it done just to put your mind at ease"!!!
Results came back, triple negative breast cancer!!! I just couldn't believe it !!! I just had a baby! I am so young, how it is even possible!!!
I couldn't sleep or eat for 2 days (I 've got the results back on Saturday) until I met the doc on Monday. She reassured me that it is curable and I should calm down and I did. I started feeling lucky, happy that I was in Australia and I found it so early. If I was in UK I would probably found it when it would have be a massive lump. (They don't check you if you have no symptoms). 
I have started AC chemos last week and they are going really well. Minimum side effects at the moment and still no hair loss. Does anyone know when you start loosing hair with AC? 
I will get 2 cycles of chemos following with double mastectomy as even with an early stage cancer I have lots of chances for recurrence. 

With love 
Catherine
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Comments

  • AfraserAfraser MelbourneMember Posts: 1,138
    Sorry you are joining us but glad you have an early diagnosis. 75% of us are post menopausal - which means 25% of are much younger. Excellent you are doing well with AC - nausea isn't automatic and I had none either, felt remarkably well. But hair does go and usually about the 2 week mark. Best advice from most is to cut it really short (or shave your head, I didn't fancy that so just cut it really short) before it starts to go as it's less dramatic. This network has been very active in getting benefits for women with breast cancer so avail yourself of everything you can. Best wishes for the future, calm optimism is a great asset!!
  • Lizzie13Lizzie13 Dragonfly Posts: 46
    Hi Fisladia, there is an Australian Triple negative breast cancer facebook page with a few women who are also in a similar boat to you. If you are interested do a search on FB for Triple Negative Breast cancer Australian sisters and ask to join. I am one of the administrators and I will keep an eye out and approve you. It is always good to have support of those with a similar category to talk to.
    regards
    Lizzie
  • FisalidaFisalida Member Posts: 4
    Thank you so much! I just made a request on the group. That is a huge support. 
  • primekprimek Broken HillMember Posts: 3,573
    Welcome. So much happening so quick. Wonderful it was picked up so soon. You may also like a referral for genetic counselling here. You know you have the gene...what to do next is worth a discussion. I too had a bilateral mastectomy and was considering seeing an onco gynacologist due to my family risks. I turned out to be neg. But haven't regretted the  decision.
  • FisalidaFisalida Member Posts: 4
    Yeah I am seeing a genetic consellor too. They are suggesting to have an ooferectomy in few years. I may try have another baby but who knows if I would be able after the chemos :neutral:
  • Ann-MarieAnn-Marie Member Posts: 1,158
    Hi @Fisalida I just wanted to pop in here and share with you that we have tagged posts on both triple negative and BRCA1/BRCA2. You may find some helpful information there.
  • melclaritymelclarity Member Posts: 2,555
    @Fisalida

    Catherine,  sorry to hear of your story. I can understand how overwhelming it can be. I had Fec and Taxol so bit different, and lost hair but it came back as in my pic. Im ER+ only had a recurrence at the 4 year mark. So had to do genetic testing to determine if i do a single or double mastectomy. I came back negative so they said only a single was nevessary. Mind you if positive i would have done a double no qualms. So glad you found out early and into treatment. Sounds like youre in good hands. Everyone is so supportive here so anything we can help in anyway sing out. Hugs Melinda xo
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
    Hey @Fisalida

    Where about in Sydney are you? I'm central if you're nearby and want to catch up for a tea or something and talk for a while?

    - Rebecca
  • FisalidaFisalida Member Posts: 4
    Hey, I live in Cremorne close to Neutral Bay. I would love to meet and catch up, I am sure we 'll have a lot to share!!!
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