Hi just joined & introduce myself not sute what to say...

  • 6 replies
  • 13 subscribers

Diagnosed secondary bone cancer after breast cancer in 2020

  • FormerMember

    Hey Tez, 

    We are all here for the same reason, help, support and advise, you can say as much or as little as you want, you can join in conversations, start your own or simply ask questions, you can have a read of my profile if you want and you can see what my journey has been, although I do need to update it a bit! 
    Your probably feeling, shocked, shaken, frightened and sad, but this is your story and you may feel differently. Hopefully someone will jump on and try and answer your questions or point you in the right direction, but don’t worry if your post isn’t seen straight away, it will be seen at some point but sometimes are all busy with life, app, kids but don’t feel alone, we are here for you 

    Big hug Jo xx 

  • Thanks for replying not sure how I'm feeling yet to be honest have good days & bad.... Trying to make the most of the good & sorry to say feel sorry for myself on the bad..... I know I'm quite early in my journey but already the pain never let's up & I really don't feel like me anymore... Big hugs for you x

  • Thanks for replying not sure how I'm feeling yet to be honest exept the pain is pretty constant now my life is so different....  I have good days which I try to make the most of & bad which I'm sorry to say just feel sorry for myself.... I'm just at the beginning of my journey I think (last scan in March 2020 showed a significant growth) I've no idea what's to come but a lifetime of pain does scare me.... Mammogram due on the 14th to check I'm still clear in my 1 half of a breast (roughly 10years ago lumpectomy) but has been canceled for a phone call....

  • FormerMember
    FormerMember in reply to Tez1969


    Your still in shock and you might feel like that for quite some time, when I had a good day just doing the most simple task that gave me a moment to think left me crippled with fear, I have yet to explain that feeling to anyone yet. 

    Give yourself time to grieve because that’s how I explained it to people, I was grieving for a life I wasn’t going to have, I was like this for a while till I had a talk with myself and when these thoughts came I got up and moved around, I also want to say don’t dwell long on that because there’s a lot of living to do yet!!  Treatments are so good these days and you will be surprised what’s there waiting to be tried, I take my chemo at home and go to the hospital once a month to collect my meds, although because of this virus I’m isolating so I speak to my oncologist over the phone. Please try to stay positive even though it’s hard right now, take care 

    Love Jo xx 

  • I feel like my life's been snatched away I'm in constant pain.... My last appointment was canceled mammogram due on 14th just been told its canceled to a phone call so I've no idea if it's back..... Not knowing how long I've got & how to explain to my son 

  • FormerMember
    FormerMember in reply to Tez1969

    Hi Tez1969

    sorry you have joined the club no one wants to join. I will tell a little of my story. My oncologist told me that the bad news it’s in my bones good news it’s nowhere else and your not going anywhere soon. I was the same as you thinking the worst I lost my husband to cancer 10 years ago. my daughters are 27 & 22 and I tell them the truth.  My palliative care nurse told me that they could speak to thembut I decided against that.  It’s not nice, lots of tears. There are lots of positive stories on here some people last 10 + years.  I was diagnosed in September 2019 with secondaries first In quiet a few places after been in constant pain for months and GP kept saying muscular pain. Then they found primary behind nipple after biopsy. 
    Mammogram and ultrasound clear. No lumps etc. Only did biopsy after I mentioned that 3 years earlier I had gone to have my nipple checked out has It had started to sink. Was told it was clear. I am oestrogen positive Her2 neg. I am on Letrozole, palbociclib and monthly Denosumab injections To strengthen my bones. This seems to be first line of treatment for people who are menopausal I’m 55. My pain is not as bad as it was. I can do a little bit more even bend over which I could not for nearly 12 months. My last scan in April said I’m stable.  I only take paracetamol for pain used to take iburafen But decided to stop due covid. 
    Once you have a treatment plan you will feel a little better. 
    Thinking of you