Secondary breast cancer in spine

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Hi

This is the first I have posted here bur have been on and off for the last year and a half.

January 2022, I had DCIS resulting in four surgeries, the last one being a bilateral mammoplasty followed by radiotherapy.

Following my first annual check up, followed by ultrasound, biopsies, CT scan and MRIs, I have been diagnosed with secondary Breast Cancer.  This is in my left axilla lymph nodes and my lower spine L5 joint - ER positive, HER2 negative.  I am so scared of what is ahead.  My back has been very painful for the last month and getting worse.  Thank god I mentioned it as I originally thought it was arthritis/muscular.

I am seeing an Oncologist on Monday and apparently starting RT on my back next week.  I know it can’t be cured but will it stop the pain? Can it shrink the cancer?

The  lymph nodes will be dealt with separately by RT, surgery and hormone treatment.  They haven’t ruled out chemo yet which probably means, I will have chemo.

Last year, I went through so much but remained mostly up beat and positive.  This time I am so scared as it is very different.

Any help will be much appreciated.

K xo

  • Hi KazED

    I'm so sorry you are so scared but it's only natural after receiving your news . Radiotherapy will hopefully help alleviate your pain.Your oncologist & breast cancer nurse are also there to help you with questions/ fears you may have about your treatment & advise you re pain relief  . I would advise you to have a small notebook to write questions down when they pop into your head . Sometimes when we attend our appts we are so overwhelmed we forget to ask so your notebook will be of help  & keep you on track .
     Like you I've just recently been diagnosed with secondary breast cancer in my spine & pelvis  ( ER positive, HER2 negative )
    Please seek out counselling which can be of help so you are not stuck in the diagnosis .  I was so scared too but now at the moment I live in the present & try to keep to a normal routine as much as I can .
      Have you got close friends & family you can reach out to for support . You can also speak with a Macmillan nurse who can answer some of the many questions you have cluttering your head .
    I know I might not have helped you much but I just wanted to reach out to you  so you know you are not alone in how you feel .   I will be thinking of you . Please take care of yourself x

  • Hi AliceT

    Thank you for your reply and good that we are in the same situation - well not good as such!

    My nurse is a Macmillan nurse and is so lovely.  She is trying to get me counselling. And I am lucky to have some good friends, family and colleagues as support.

    I have bought a Breast Cancer pink notebook to keep a track of everything and note down questions and answers. I have an Oncology appt on Monday for discussion and planning scan for my spine and hopefully back within a few days for RT.  So glad that it’s moved quickly.  

    How are you doing? 

    K x

  • Hi KazED

    I'm so pleased to hear things are moving quickly for you . Hopefully you will have a plan of care on monday. It's the not knowing & waiting is the worst.  Also good to hear your Macmillan nurse is supportive.

    I've had one session of radiotherapy to my lower & mid back which has definitely helped ease the pain.  I'm on cycle one of  Ribocliclib, Denusomab & also take  Letrozole as like you ( ER positive and HER 2 negative.) . They also check bloods & have regular Ecg to ensure I'm coping with the treatment .

    Hope all goes well for you on Monday.  Take care & keep on touch if you wish 

    AliceT x

  • Hi KazED 

    I'm sorry to hear of your diagnosis, I too have recently been diagnosed with SBC in my lungs, spine & pelvis it was a total shock as I had my primary 23 yrs ago, I am really struggling to come to terms with it all after such a long time being clear & like you feel very scared for what the future will bring. I have just started treatment this week with Ribociclib, Letrozole & Denosumab.  I did find my appointment with oncologist really overwhelming & didn't ask many questions so good idea to jot down anything you want to ask. Glad everything is moving forward quickly for you & I hope the RT helps with your pain. 

    Take care xx 

  • Hi there

    its totally fine to feel ike you do..it’s such a shock!!  I’m also er+ and was diagnosed with secondaries to my bones 8 months ago. My treatment plan is letrozole, ribociclib and quarterly mri scan. I’ve had to take a break from ribociclib as my liver enzymes shot up but now they are back down again I’m restarting ribociclib..this treatment has controlled all the lesions and my cancer count went from 180 to 60 and I was showing good remission ".I’m looking forward to restarting the ribociclib at a lower dose and all I can say is give yourself time to adjust and hoping the treatment plan works well for you

    all the best

  • Thanks everyone.

    So I had my one and only session of RT on my back today.  I was very sore before and even sorer now.  I know the Oncologist and Radiographers said it would be worse for a few days.  I am worried though.  Does it get better?

    I also started on Letrozole yesterday.  Next week, I am back at the Oncologist and going onto a chemo tablet and also injections every week but I can’t remember what they are for.

    They have decided against surgery on my lymph nodes. I need to ask why and probably so many other questions.

    I am starting to feel I am on my way out!

    Any advice or wise words greatly appreciated.

    K x

  • Hi KazED 

    I've had one session of RT to my lower back & mid back . The consultant warned me that I could feel worse for a week to 10 days but then it would improve . I would say it took 10 - 14 days with it intensifying for a few days after RT . Now I'm definitely feeling the benefits & I am able to sit more comfortably. So hang in there & take regular pain relief.  I've been told by an oncology nurse to take my anti inflammatory medication for at least 6 weeks post RT. 

    Re your injections did they mention Denosumab  It's a targeted therapy drug & is used to treat secondary bone cancer. Plenty of info on macmillan site & breast cancer now site . I'm also on Letrozole & was advised by the nurse to take it at night to help with side effects

    Its a lot of info totake in & can be overwhelming . I hope this is of some help.

    Take care Alice T x

  • Hi AliceT

    Thank you.  That is very helpful and much appreciated.

    They didn’t mention Denosumab but I see a lot of others on here mention it.  The first appointment was really about the RT on my back as they arranged it quickly - my consultant/surgeon arranged it as there had been so much delay with CT scan and MRI.

    I will find out more on Tuesday about the chemo tablet and injections at my local hospital.

    How are you doing?

    K x

  • Hi KazED  fingers crossed in next few weeks you will notice your pain decreasing . There are so many different medications / injections & hopefully you will be more informed on tuesday.  Remember to write questions down in your book before your appt . I know I wouldn't remember to ask half my questions if I didn't have my wee book . 

    I'm doing ok thanks & just like everyone hoping & praying this treatment works well .

    Keep in touch  X

  • Hi there,

    well at least that part of the treatment is out of the way and take the pain relief till the soreness wears off, I think the injections are likely to be a bone strengthening drug…as you mentioned.

    just try to rest when you are able to and everyone on here understands what you’re going through Relieved

    take good care of yourself