Worried

[Dragonfighter]

Hi, I was diagnosed with breast cancer in January 2020, had surgery, told my cancer was stage 2 by the surgeon, based on lymph nodes and tumor size. My first set of scans revealed a tumor on my spine, this changed everything. I have been on Ibrance and letrozole for 3 years,doing well, but starting to worry about progression. I am wondering if anyone has had as much luck with their second line of treatment as their first? thanks

[Nocillo]

My first line was Anastrozole and Fulvestrant and they lasted 5 1/2 years. Now I’ve been on Ibrance and Tamoxifen for 2 years and still doing well. I’ve got lobular and ductal. It’s the lobular that went to my stomach lining that caused the drug change. The bone Mets are still stable. You’re on good drugs. They should work well.

[Dragonfighter in reply to Nocillo]

thank-you, makes me hopeful!

[Fiercefighter13]

I did not have very good success on Ibrance/Letrozole. My progression started about 1 year into therapy, but I stayed on it almost 2 1/2 years. I had more progression on Verzenio/Faslodex right off the bat, so we switched to Faslodex/Anastrozole, no luck either. Changed to Piqray/Faslodex and had a major allergic reaction. Finally started Xeloda and it’s killing the cancer and wiping it out. My markers went from 586 to 109 in 3 months. I’m ER/PR + lobular carcinoma. Everyone reacts differently to these meds so it’s hard to foresee how anyone will do on any of them. Wishing you a good long run on your protocol! There are many other great meds that work well for second and third, fourth and so on…treatments. Wishing you well, take care!

[Dragonfighter]

thank-you, you take care too!

[Andersl]

Hi, like you I was told I was stage 2 . Within 2 months, 2 different consultants who were investigating other conditions called me to say I needed to speak to my oncologist. They could see cancer nodes in my spine, lungs and thorax. I was actually stage iv.That was March 2019. I'm now on 2nd line treatment, Kadcyla, and im doing well. I did have a few tiny brain nodes but they were successfully treated with stereotactic treatment. It's important for me to put this in context. I'd been off treatment for 9 weeks while I recovered from a cataract operation. The op caused me enormous stress as the pain relief had worn off before they started and I felt everything ! I believe the break in treatment and stress caused the cancer to grow.

I accept the cancer may reappear somewhere one day but ive learnt over time, to tell myself i'll deal with that when it happens as worry causes stress and that may weaken my immune system.

Based on my experience my advice is to focus on what you can control ... a healthy immune system and emotional stability.

Lastly, read about all the research work being carried out. New treatments are frequently being approved.

I hope this helps.

Best wishes x

[mariootsi in reply to Andersl]

Blessings to you

[Dragonfighter in reply to Andersl]

It does help so much, thank-you. I fact I find this whole site helpful and encouraging. Cancer can be lonely. I am wishing for the best for you!

[Lulis in reply to Andersl]

I wonder how often this happens? I was initially told I was probably Stage 1, then Stage 2 after an MRI and then 3C after surgery. I asked the oncologist if I should have a biopsy since the cancer was further along than previously thought. He agreed and 4 months after the surgery, I was diagnosed with metastatic cancer. Your story gives me hope. Blessing to you.

[Andersl in reply to Lulis]

Thank you.I suspect it happens quite often in the UK.

In my case I wasn't given a body scan as it wasn't mandatory at the time.

I contacted the UK NICE organisation to find out why. Apparently some years ago they changed the requirement for a body scan to be performed routinely as part of the initial diagnostic tests and thus it is up to individual consultants/hospital practice whether they perform them or not. My consultant didnt 'suspect' it had spread so he didn't think a scan was necessary.

[Lulis in reply to Andersl]

I had a bone scan before my surgery, but my spine didn't light up. Previously, on an xray, they thought something looked off, but when the body scan came back clear, they said it was a genetic condition (which made sense since I had back pain ever since I was a teenager). They did a PET scan after the surgery and that one came back clear as well for spine mets. That's when the oncologist ordered the biopsy and determined that indeed it is in the spine.

[Andersl in reply to Lulis]

Thank goodness the consultant pursued the matter x

[diamags]

I had your experience. Except they found my spine tumor when planning my radiation for the stage 2 treatments 😡. Anyway, I've been on Fulvestrant and Anastrozole for 9.5 years!

[Dragonfighter in reply to diamags]

Wow, thank you for answering and best wishes to you! This is what I needed to hear today!

[Liessie2014 in reply to diamags]

Thats Fantastic ! 9.5 years , you have made me feel so good today , Thankyou ❤️

[diamags]

It's such a hard road to travel. Keep the faith!!! We need to stay healthy enough for them to keep finding new ways to keep us healthy!!!