Hello - SBC in bones and liver (9 years after primary)

Hi Scared_2

I was diagnosed with breast cancer in Dec 2008 and after many years with no issues I started with back pain in Feb 2022, after many visits to my GP they eventually decided to do some bloods and sent me for an x-ray which showed high calcium and fractures in my spine and ribs. I was then referred back to the breast clinic and diagnosed with secondary breast cancer, thankfully it is only in my bone. I am still on my 1st line of treatment of Ribociclib, Letrozle and 4 weekly Denosaub injection, I have a CT scan every 3 months which have showed the cancer to be stable. I am now down to telephone appointments every 3 months and I am relatively pain free.

My pain was so bad that I had to use a wheelchair to get round, with six months i no longer needed it. Like yourself I was very scared, my Oncologist did say that they would be able to give me a prognosis at some point but I told him I don’t want to know as I don’t want to focus on that.

i know it is difficult but it does help to be positive and focus on the good things, we have now had several holidays abroad and just been to Egypt with our children and their respective families, yes I do take my crutches away with me but very rarely use them. Every new day is a blessing and I refuse to let cancer define me, we are all stronger than we give ourselves credit for. 

it is only early days for you and hopefully like myself once you have your treatment plan you will able to move forward.

hope this helps

keep us posted and plenty of hugs to you 

Ricepop

Hi Ricepop,
Thank you so much for replying - it's good to hear a positive story and I'm glad you're now able to get away for holidays with your extended family. We've just had to cancel our holiday for next week as I can't walk far (and I want to be available for tests, or to start treatment as soon as possible). We've told ourselves that we'll have the holiday later in the year once the treatment has reduced my pain.

Last month I was happily walking 5 miles; now I can only manage 200 yards without pain in my back/ribs . We went to Wisley Gardens yesterday and my husband had to push me in a wheelchair, but it was lovely to be out in the sunshine.

I hate the diagnosis but at the moment it's the pain that's getting me down - I'm on Naproxen and Paracetamol which takes the edge off it, but I'm definitely not living a 'normal life' which is what the oncologist said we are aiming for.

I'm having the liver biopsy tomorrow then hoping they can start treatment ASAP.

Hope you continue to respond well to your first-line treatment - and hope that I'll respond as well as you soon.

Thank you

Hi Scared_2

You wouldn’t be normal if you were not scared and the pain didn’t get you down. I still take paracetamol and codiene but only in the morning.

When I was diagnosed my Oncologist told me he would have me running round the corridors by Christmas, I laughed and told him good luck with that, I don’t think I have ran since I was at school , however I am now back at the gym which makes me feel so much better.

The one good thing for me was that I was able to retire under ill health from my job, the Oncologist told me I could return to work if I wanted but as I was 62 I thought I might as well take advantage and my husband retired at Christmas so we are not restricted to when we can go away or go out.

You will have good and bad days. On my bad days I sit and do nothing and write down how I feel. My sister who also had breast cancer 20 years ago bought me a book to write my feelings down, I used it a lot at first, now I hardly use it which must be good.

Fingers crossed for your biopsy and keep in touch.

Ricepop

Hi Ricepop

My story is a bit similar to yours as I had breast cancer in 2022 and a clear mammogram in 2023 however I had some back pain and mentioned it to the breast nurse at the time of my mammogram who sent me for a bone scan. I had spinal mets and a bit on my ribs. Unfortunately i needed an op on spine as vertebrae was about to collapse so it was a medical emergency and needed to be propped up. That was 6 months ago. I have since had radiotherapy and now on ribociclib fulvestrant and denosumab injections and on my 6 th round of this. My problem at the moment is pain in my back I’m on co codamol. I have read that Ribociclib can cause back pain too. However, I was wondering through your experience how long it took for your pain to settle. My ct so far are stable and I am currently on round 6 of ribociclib etc

kind regards 

Hennie xx

Hi Hennie

Good to hear your scans are showing everything is stable. Sorry to hear about your op and glad that it went well. They thought that I might need an op on my femur as the cancer was nibbling at the bone, however when I went to seen orthopaedic surgeon he said it was driven by pain and as wasn’t in pain any longer it was best to leave it.

My Oncologist told me that some of the medications can give you some pain in your bones.

I would say after 6-8 months I was relatively pain free, I find that it is when I stand for any length of time that I start to ache so I have to sit down for a bit., however it is only uncomfortable not the sort of pain I had before. I also find that I start to ache a bit more when I am due my injection.

i think pain is really scary for everyone with mets in their bones as you always think the worst. It might be worth you speaking to the team to see if they can recommend a different painkiller.

i hope the pain gets better for you soon and try to stay positive. 

Have a lovely bank holiday, at least the sun is out.

Sending you lots of hugs

Ricepop