👋 Monday Mingle Meet & Greet - Welcome New Members Jan12-18👋

Thank you for sharing your story Sab005​ - I'm so sorry to hear how extensive and challenging the process has been. It is completely normal to feel shocked or overwhelmed by all this. You’ve had to make major life decisions very quickly, on top of your husband’s diagnosis, and you’ve handled it with so much strength and resilience (even if it doesn't feel that way all the time)! Waiting for a clear plan is often the hardest part. Once your healthcare team meets, you’ll get a much fuller picture of what treatment is right for you.

We are here for you while you wait! It looks like you've recently joined all the right community groups - you are in the right place and this network is here to support you ❤️ Reach out anytime and don't forget you can always call our Helpline on 1800 500 258 9am-5pm MON-FRI. 

Thank you for the welcome but I will not say that I am happy to be here. 🙁 I have been meticulous in getting my scheduled mammograms and when I was called back to the Breastscreen Centre  just before Xmas for an assessment, I was concerned but not particularly so. I had the 3D mammogram and ultrasound and nothing was said to me regarding the findings. Hence my shock when a counseller sat me down and told me that it was definitely going to be a mastectomy but that was good as I would not need radiation. Lucky me. The biopsies and meeting with a breast surgeon soon followed. This was the afternoon on the day when my husband had been told that morning that he had prostate cancer. Great pre Xmas present! 

I was later told that I had extensive DCIS covering over 5cm, ER+ and it was Grade 3. I asked about my  HER2 status but was told this was not looked for if it was DCIS. I now know that some HER2 positive patients can be offered treatment before surgery but this never came up. I did not want to have asymmetric breasts so I asked my surgeon to remove the other healthy breast and she was very understanding and respectful of my decision. I also asked for a Goldilocks reconstruction and she was happy to do this as well. Her confidence helped me feel that this was the right decision for me and so after my double mastectomy last week, I joined the flat group. I am happy with this decision but wonder what is wrong with me as I have not mourned the loss of my breasts. Perhaps the reality has not struck me yet. Unfortunately I did not have enough fat to give me new small breasts but at least I have a little shape and no concave hollows.  After struggling with my weight my entire life this was not something I expected! The surgeon’s  work was excellent and the scars are so neat and hardly noticeable.

I was naive and thought that I had escaped the worst so it was a shock at our follow-up meeting to be told that the DCIS actually covered 3 out of the 4 quadrants and that the margins were not wide enough on two sides, hence the probable need for a new operation to re-excise the margins. They also found microinvasions and I am worried that there could have been more as I assume that the pathologists only look at some of the tissue but not all of it. I am also worried that, despite my sentinel lymph node being clear, that rogue cancer cells could have left my breasts. I am definitely a ‘half glass full’ kind of person and the post surgery pathology report has added to my fears as I am HER2 positive and my googling has terrified me with words popping up like ‘grim prognosis’.

I know about treatments like Herceptin but the only mention at the post surgery appointment was possibly having hormone blockers and probably not radiation or chemo.  At this stage no treatment plan has been discussed in full as there will be a future meeting of the oncologist, surgeon, radiologist etc. but I like to be prepared so I am hoping that anyone with a similar breast cancer experience can tell me what their treatment was or if they had success with only hormone blockers. Or do doctors only tell you about possible treatments one step at a time? I know that many people on this forum have had far worse prognosis’s so I do feel like I should be happy that mine is only DCIS (though extensive and high grade) and some microinvasions but it does not help the feeling of fear that has engulfed me. I do not want to face a worse prognosis in years to come because not enough was thrown at this cancer in the initial stages.