Invasive lobular breast cancer with metastis

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Hello.

I had a routine mammogram in June, a further appointment took place on 9th July where biopsies and further scans took place. I was diagnosed with invasive lobular breast cancer  on August 5th. I was informed it had spread to my lymph nodes and was grade 2..

Too date i have had 3 MRI, 1 CT, 2 ultra sound 1 Pet scan and further biopsies on my other breast.. Lesions have shown up on my spine, pelvis, lungs and liver.. I am still waiting results from some of these. It is now October and i still dont have a treatment plan. I take letrozole and that is it. My breast nurses informed me that they cannot agree in my MDT meetings. My mental health is declining fast, i am only 56 and relatively healthy.. Is it normal to take this long for a plan of treatment? It is 3 months now since my original biopsies.

I feel now that maybe they cant treat me so are just prolonging the inevitable Cry

L

  • Hi, I’m so sorry to read your message and that feels like a long time to wait for a plan. Are you able to ask for an appointment directly with your consultant to get clarity on the options that you have available and to better understand what they are waiting for to make a treatment decision?

    I'd also suggest you call the Macmillan support line, it’s open daily from 8am to 8pm on 0800 808 0000 and they can provide you with advice and support. They can also recommend some counselling which might help your mental health.

    I hope you find a clear path forward soon, best wishes. 

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  • Hi Jenifer,  I am so sorry to hear about your diagnosis.  The waiting is very worrying and you just want to start the treatment plan.  I had stage 3 grade 2 lobular breast cancer twelve years ago.  I had lumpectomy, chemo, radiotherapy and then 5 years of tamoxifen/letrazole.  Last year I went to the doctor in March with back and hip pain.  Sent me for X Ray which showed up two bone lesions in my pelvis.  Doctor said it was benign.  I had physio and she sent me for MRI.  It turns out I have metastatic breast cancer with mets in pelvis, spine, ribs, skull etc.  I went in March and only started treatment at the end of December so also had a long wait.  I was 47 the first time and 59 this time.   They can definitely treat you they are probably deciding on the best treatment moving forward.  I am having exemastane (as didnt get on with letrozole).  I have ribociclib and denosumab injections every four weeks.  I don't get many side effects at all and have been on holiday to Portugal this year.  I would like you to know that you are not alone on here.  I am on everyday so if you wish to chat I am here.  Please keep me updated as to your treatment plan.  Big hugs.

    Lee x

  • Thank you for your reply as it is very positive and helpful to me. I automatically wrote myself off, thinking this is it, it’s spread too far. Hopefully i will get some answers this week regarding surgery and treatment. I will keep you updated and thanks again as finding out i had  cancer took me to a very dark place … x