What to do...

Out of the blue, due to screening, diagnosed Grade 3 invasive ductal carcinoma ER3 PRO HER2 3+

Still in a state of shock of diagnosis 3 procedures/lumpectomies later I finally have the clear margins.

I could not accept chemo that was recommended before surgery as too shocked and my long hair has been my trademark for 40years.

3 procedures/lumpectomies later to get the clear margins I now have to have consultations with Oncologist and Radiotherapy teams.

I am 62, do not look too bad foir my age but I am terrified and confinced the person I am now will no longer exist if I have chemo.

Why oh why can i not have Herceptin without chemo?

 

  • Bernnn, I'm so very sorry that you've been diagnosed with cancer. I understand that you are in a state of shock and can't quite believe what's happening to you. It's awful and your head is spinning. 

    Your team are working to keep you alive. Herceptin is a target drug but won't kill the cancer. If you're being told you need chemotherapy then that's what you really need.

    I had lovely long blonde hair pre-cancer and now I have purple spiky hair. It's the new me, because I'm not the person I was before my diagnosis. You can try the cold cap and you can have a wig but your hair isn't what's important to the people that love you, you are!

    Chemotherapy isn't pleasant but it's a means to the end of cancer. Your life will be an endless calendar of appointments but you can get through to the other side. It's all in your mindset. You have to fight and be strong. You can cry into your pillow at night when you need to but you need to fight for the life you want. Time with family and friends, holidays, everything that is important to you.

    I can say this because 2 years ago I was given up to 2 years to live. I have stage 4 inflammatory breast cancer which had spread to lungs and liver. I did what I was told was impossible and went into remission. It wasn't easy... I almost died from COVID, I've had sepsis twice and now it's back on my lung. I'm preparing for surgery to have a piece of my lung removed. I'm still fighting because I'm not ready to go yet. I'm 53 and want to see my youngest son settle down. I want to be a grandma and I want to spend time with my family and friends. 

    You're trying to come to terms with everything, I understand that but go to your appointments and ask questions before you make a decision. Your life isn't over it's taken a wrong turn.

    Let me know how you get on and what you decide to do. Be the warrior that you are. B xx

  • You are incredibly kind to respond, thank you.

    I was desperate when I posted that message and probably wish I hadn't, I don't even do social media...

    I'm reeling from the diagnosis let alone realising grade 3 is a particular b***h.

    You are amazing, the true warrier.

    xx

  • Bern 

    hello hope you are ok , fab news your cancer has gone .

    hsve you heard about the Oncotype DX test ? 
     

    checkmif you are allegable , in this way your score will determine if chemo will benefit you ? Take care Lara x

  • Gosh thank you so much for suggesting this!

    I had not heard of it.

    I resist the urge to look too closly on the interent as without fail they always predict the worst outcome.

     

    You take care too.

    xx

     

  • Bern 

    I'm same I don't google but this is not scary the Oncotype is very good , it's called oncotype DX you could read this , ask your oncologist if it's something you can have please let me no how you get on xx 

    I'm currently waiting on results like you don't particularly want chemo at all xx 

    take care Lara 

  • Amazing I will.

    Good luck everything crossed, including toes, you get the best end result.

    Did you have to suggest this test to your team or was it it automatically carried out?

     

    Bxx

  • I heard of it whilst being on this site so I asked for it xx they did not suggest I nagged x

  • Can you call your oncologist, as the test takes a few weeks , you don't need to do anything only sign a form your tumour which they already got they send off no further tests for you xx 

  • I will tomorrow.

    I'm not being seen for another week so I can at least pre-empt a potential conversation. I'll speak with my nurse.

    I've not met the Oncologist yet.

    Thanks x

  • Yes the breast nurses will definitely no about this please let me no how you get on xx