Hello,
I was diagnosed with grade 2 lobular breast cancer in September 2019, ct picked up suspicious areas on spine but couldn’t be confirmed. Did 4 rounds of ec chemo then one paclitaxel, had a ct scan 2 weeks ago and the results weren’t what I had hoped. The chemo has shrunk the breast lump and made it softer and that’s about it. I was also told that what they picked up on my spine was indeed secondary cancer, my chemo has been stopped and I’m now starting targeted drugs of letrozole, goserelin and bisphsophonates to slow the growth and try and prevent spread for as long as possible. I am er positive and HER2 negative. I am looking for support and advice as I was only diagnosed on Tuesday this week and I am struggling and very frightened. I am 35 with 2 boys 10 and 14. X
Hi Lollypop - So sorry to hear about your diagnosis. I got my diagnosis (bone and lung mets) at the end of September last year. It feels scary at first but once you have a treatment plan in place and get started on it I think that helps. I’m on letrozole, zoladex, denosumab and Palbociclib. So similar to you - except with the addition of Palbociclib. It is very doable this treatment plan. What I was also going to say is that if you are on Facebook look up the ‘Younger Breast Cancer Network (UK)’ page and if you private message them you can ask to join the YBCN private group for living with inoperable/secondary cancer. It’s a group for women under the age of 45 and all the ladies are really supportive and it’s a great place to chat privately and ask questions. I was 26 when I got my primary diagnosis and 41 when I got my secondary diagnosis. I think it helps to talk to other ladies in a similar situation xx
Hi Lollypop,
It is so scary at first and really sorry the first treatment didn’t help with your spine mets. I would definitely ask about them giving you a drug called Denosumab. It’s usually given every 2-3 months as a small injection (either at GP or hospital). It’s kept my bone mets stable for over nine years now. xx
Hi Lollypop
I’m sorry to hear of your diagnosis and that the Chemo didn’t work very well for you.
I have a very similar diagnosis to you, Lobular in breast and lymph nodes with mets in lower spine and sternum ER positive and HER2 negative.
I have had no surgery except a lymph node biopsy in March 2019 and was then put straight on to the same drugs as you with the addition of Abemaciclib which I believe is the same group of drugs as Palbociclib.
I’ve had good results so far and am hoping it continues to work well.
I have read that lobular often responds well to hormone suppression and not so well to Chemo so try to keep hope, this treatment might surprise you (I would definitely ask about Abema/Palbociclib too).
I too have young Children, it’s so hard to wrap your head around such a shocking diagnosis and have to slap a smile on for the kids but it does get easier with time.
Best Wishes x