Nicky08 - 11 years on

Hi everyone

As I’m an active member of the forum I’m sure many of you have come across my posts and odd snippets of my ‘story’ but I have never written it down. I thought I would as, like blondie’s recent post, I feel it gives hope to those who are newly diagnosed.

I will make it as short as I can, but it’s not been that straight forward!

I was diagnosed with hormone positive BC in 2003. It was low grade, caught early and no spread to lymph nodes. My treatment was WLE, radiotherapy followed by zoladex (for 2 years) and Tamoxifen, I was 41.

A routine mammogram in 2008 showed a local recurrence and subsequent bone and CT scans showed I had 1 bone met and another hot spot on my spine. This was on April Fools Day 2008 - some joke! I had 6 cycles of FEC chemo followed by anastrozole (an Aromatase Inhibitor)

After I had finished FEC I developed Paroxysmal Atrial Fibrillation (PAF), a heart condition. Over the next 4-5 years this was sort of treated with medication (but I now understand the wrong sort!). About the same time (4-5 years) I had a scan which showed the mets had spread to my liver. I asked for a biopsy to be done and it showed I was now HER2+, having been HER2- up until now. This was a complete surprise but meant I would need Herceptin. However my heart function was so bad I couldn’t have Herceptin. I started on Capecitabine and, after suffering a TIA (mini stroke caused by the PAF) I was referred by my then oncologist to a cardio-oncology unit in London.  After many months, lots of medication and a couple of heart procedures they managed to stop my PAF and my heart function recovered enough to have Herceptin. Over the next 4-5 years my liver mets shrank or disappeared all except one ‘rogue’ one which seemed to grow every time I was on a hormonal treatment but shrink on chemo. Last year my current oncologist suggested a liver resection to remove this lesion, plus a couple of very small other ones. I had this done a year ago and since then have had no evidence of disease in my liver. A biopsy of the removed lesion showed it to be triple negative - no wonder it hadn’t responded to targeted treatments! My bone mets, after having spread a lot in 2013, have remained stable since. I am currently in a hormonal treatment, Fulvestrant, and a bone strengthener, Denosumab. At some point I will need to change treaments which I am well aware of but for now I can honestly say I feel far healthier than I was 6 years ago when my liver mets were 1st diagnosed and my heart function was dangerously low. 

I wanted to write this as it shows that not all secondary breast cancer follows a particular path, we are all different but I am hoping it helps to show that you can actually feel better even years after your SBC diagnosis.

The one lesson I, and my family, have learnt is Carpe Diem - Seize the Day

Nicky x

Thank you for this. 6 months in from diagnosis. I am screenshottting your post to send to my children 

Well done, Nicky, and thanks for telling your story as it gives us all hope and determination. We need both to help us keep going through sometimes very challenging treatments. I am a bit low at the moment…am I strong enough?..but your story gives me courage. You deserve a medal! And you are a fairy godmother out on the threads, keeping an eye on us all! Happy 11th anniversary!

 

mo.      xxxx

Nicky, you are one of the most inspirational ladies I know. The knowledge and support you give here on the forum (& in real life at our group) is so helpful. You have been through so much and still going strong, here’s to many more cancerversaries.

Helen x 

Dear Nicky,

I can only echo the others in saying how inspirational. informative and comforting I have found your messages since I started reading them after my secondaries diagnosis in July 17.

I had 2 lots of primaries in 1995 and 2007,  dealt with by WLE and radiotherapy, then mastectomy and chemo. Both were ‘strongly HR+’ as my Onc.  put it … so imagine my surprise at all levels when it

returned to my bones and liver as triple negative!.

After one trial chemo (Cabazitaxel) and now 9 months on wonderful Cape (Thank you for all the tips)  I am feeling good nearly 2 years down the road, even though chemos are my only option.  Carpe diem indeed!

As you say, every  one’s experience may be different but this forum and these threads are a lifeline of practical  and heartwarming reassurance.

So thank you and long may you be posting cancerversaries on here!

Maggie

xx

Thanks so much for sharing you story. It’s always pleasing to hear stories like yours. It always uplifts my mood. May good health continue for you and many more on here.

Hi Nicky - I know this is an old thread but so was wondering how you are getting on now? 
Kara x

Hi Nicky 

Mir was so refreshing to hear your storey it really was I am in so much fear and am trying to practise faith over fear as I want to live with joy of anything cancer has taught me is to not take my life for granted I was diagnosed with breast cancer in 2021 and then 2 weeks later was told it’s spread to my bones I had chemotherapy and was under the impression I was having surgery then radiotherapy but my oncologist went of on long term sick and my whole treatment plan has changed which has left me so frightened my head says because of the Covid backlog I am not important as I have secondary they are putting me to the back of the quee I honestly have days where I feel no one understands but I am lucky to have the best sister and the best boyfriend thanks for your post it has really helped me to have hope x