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Willow21's avatar
Willow21
Member
12 years ago

New Member

Hi everyone, Thanks for having me in your group. This is my story. I was diagnosed in the 8th Feb 2013 at the age of 38. I have a husband and two children aged 15 and 12. I'm a nursing student and currently living north of Brisbane. I felt a lump and went to the GP for advice, that's when the roller coaster started. The mammogram, ultrasound and breast MRI showed a IDC 17mm grade 3 ER+ & PR+ HER2-. So off to surgery I went for a lumpectomy and SNB. While the surgeon was removing the IDC she found another tumor which NONE of the other scanning tools picked up! It was a 20mm grade 3 poorly differentiated neuroendrine breast primary cancer (rare) ER+ PR + HER2- thank goodness my breast surgeon had a feel around. To top it off one of my lymph nodes had micro mets. Back to surgery for a mastectomy and full axilla clearance (plenty of tears). Next stop on the roller coaster ride was chemo, the fun never ends. 4 cycles of FEC followed by 12 cycles of paclitaxol. Due to the mastectomy I thankfully didn't need radiation but started on tamoxifen. Next stop was genetic testing. I didn't realize the full extent of my family BC history until my diagnosis. I knew my maternal grandmother was diagnosed with breast cancer in her early 30s and again in early 60s and her sister was diagnosed in her mid 70s but that was it. Well no, there was 6 of us over 4 generations. My genetic results show I'm negative to BRCA 1 & 2 but still classified as high risk. I'm booked in for a prophylactic mastectomy and bilateral tissue expanders on the 3rd Feb at the Wesley. Sorry it's long but that's my story in a nut shell. Thanks for having me in your group. Thanks Alison x
coping
her2
mastectomy

6 Replies

  • Willow21's avatar
    Willow21
    Member
    11 years ago
    Hi Anita, I'm sorry to hear of your diagnosis. Its a scary time but it can be a positive outcome. My poorly differentiated neuroendocrine cancer (PDNEC) was treated the same as my IDC. I had 4 x FEC and 12 x paclitaxol followed by tamoxifen. I'm doing pretty well and cancer free. Since my last post I have had a prophylactic mastectomy, tissue expanders and implants. I did have a CT scan to establish that the PDNEC was a breast primary and not from another part of my body as neuroendocrine is usually found in the gut or lungs. It is rare to be found in the breast. PDNEC is usually made up of approximately 50%+ neuroendocrine markers and basically the cells are malfunctioning and growing out of control and in my case with grade 3 it was growing very fast. My oncologist wasn't worried about my NEC and her research lead her to treat it the same as IDC. As one of my nodes had micro invasion I didn't need radiation. Best of luck with your up coming treatment/s. If you have any other questions shot them my way. Alison x
  • Anita_geary's avatar
    Anita_geary
    Member
    11 years ago
    Hi alison, I see that it has been some time since this post but I have recently (yesterday) been diagnosed with a 30mm poorly differentiated cancer with possible lymph node issues as well. I'm too scared to google what type of cancer this is so I was wondering if you wouldn't mind sharing your knowledge of what it means to have a poorly differentiated cancer and what the treatment implications are from your experience? Anita
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    Yes I get confused sometimes what I have read and posted where. It's normal to be nervous. I was very nervous before mine, but I was fine and I am sure you will be too. Yes I agree it's a great site to find support from others who have gone through what you are about too. I am now 7 weeks post op bilateral tram flap reconstruction and doing well. I did my second lot of chemo at the Wesley. It's a great hospital. All the best for the 3rd. Paula
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    Yes I get confused sometimes what I have read and posted where. It's normal to be nervous. I was very nervous before mine, but I was fine and I am sure you will be too. Yes I agree it's a great site to find support from others who have gone through what you are about too. I am now 7 weeks post op bilateral tram flap reconstruction and doing well. I did my second lot of chemo at the Wesley. It's a great hospital. All the best for the 3rd. Paula
  • Willow21's avatar
    Willow21
    Member
    12 years ago
    Hi Paula, I can't remember if I posted a blog in recon site although I have asked several questions to the lovely ladies about my upcoming surgery. Thanks for your well wishes with my surgery as I do believe I will need them. Starting to feel pretty nervous but I'm sure I will be fine. The ongoing support on this site and others I'm on are fabulous. Take care Alison x
  • Willow21's avatar
    Willow21
    Member
    12 years ago
    Hi Paula, I can't remember if I posted a blog in recon site although I have asked several questions to the lovely ladies about my upcoming surgery. Thanks for your well wishes with my surgery as I do believe I will need them. Starting to feel pretty nervous but I'm sure I will be fine. The ongoing support on this site and others I'm on are fabulous. Take care Alison x