Secondary breast cancer in the bone

Hi Liverbird.    Sorry to hear about your diagnosis but good that they have caught it early.  I had breast cancer in 2013 and had lumpectomy and node biopsy with cancer in one node.  I had chemo, radiotherapy and then tamoxifen.  Last year had back pain and hip pain.  I have now been diagnosed with secondary breast cancer with mets in pelvis, spine, ribs and skull.  I am on Ribociclib, denosumab and Exemastane as my cancer is hormone positive and yours must be HER 2 positive.  No cancer in breast this time but spread through the blood.  I have four dogs and they certainly keep me active.  I think the key is to keep to normal routine and stay as active as you can.  I had to take early medical retirement from work.  I worked for 21 years in jobcentre and immune system is compromised and also too painful to sit for long periods.  They say the earlier they find this cancer the more treatable it is.  You will have to visit your dentist before you start denosumab as it can affect your jaw.  Do you want to keep on working?  I find these forums very helpful for me as writing it down sort of offloads it.  Also we are all in the same position and so much help and support on here.  There is a forum on here called Living with Incurable cancer forum - patients only which is very active and such a great bunch of people.  I wanted you to know that you are not alone.  Big hugs.

Lee x

PS I love Liverpool 

Thanks Lee for your response. I’m hoping they’ve caught this really early, albeit by chance,  otherwise I would have rung that bell and gone off not knowing that cancer had manifested itself into my bones and where it would have gone without further treatment! 
I must admit I find sitting uncomfortable for long periods but put that down to bulging discs in lumbar and degenerative arthritis in that area rather than the tumour in my T10 vertebrae. Hoping to keep going for as long as possible but some days it’s hard to keep positive and see past the negativity  of the big C! The oncologist says think of it as living with diabetes, not curable but manageable with treatment but you can’t help worrying every time you feel a twinge or feel slightly unwell! It’s coming up to a year since my breast cancer diagnosis and hopefully my follow up mammogram will show nothing in my remaining breast.  x

First of all, I am sorry you find yourself here.

I have a different cancer (TNBC) and a different metastasis (liver). Like you I thought I was dealing with something early stage as it hadn’t spread to my lymph nodes. Like you I had a problem during chemo that led to an emergency hospital admission and a scan I wouldn’t have otherwise had. Like you, I got the explanation that it had likely travelled through my blood stream. Once I got beyond the initial despair, I was grateful that my secondary cancer had been found by chance before it had the opportunity to spread even further.

Your treatment path will be different to mine but we share the benefit of having had a relatively low cancer load for treatment to work on. As a source of encouragement, my secondary diagnosis was in 2022. It’s not always been easy but I am still here, generally well, and in remission. I would say don’t ask for a prognosis. They probably can’t give you one anyway, but you don’t want a use by date hanging over your head.

It does become something you settle into and think of as a chronic disease. 

Hi Liverbird strange I have a bulging disc in my spine as well and osteoarthritis.  I had radiotherapy on this four weeks ago to stop it pressing into my spinal column.  I also have a back brace to wear.  To be honest in this heat haven't worn it as often as I should but oncologist said it will protect my spine.  Yes we are not dying of cancer but living with cancer.  I am determined to be here a long time and enjoy my life.  It is hard to keep positive, but you know what it is okay not to be positive sometimes.  We all have to deal with it in our own way and in the beginning felt like bashing everyone around the head that told me to 'be positive'.  Like Coddfish says we will just settle into this and deal with it like a annoying disease.  I take hope that we can go into remission like Coddfish.  I have claimed PIP which is an independent benefit that you can claim and still work depending on how your cancer affects your life style and mobility.  Anyway fingers crossed that your mammogram comes up clear.

Lee x

Hi thanks for your response and yes although a different diagnosis you’ve had a similar path, glad yours was also caught early too and you’re coping well. I’m hoping my mind will get use to the position and I can continue to live a fairly normal life. Start Phesgo today so will see how that helps

Hi Liverbird, so sorry to hear about your diagnosis. I'm in a similar situation.

My first diagnosis of breast cancer was about 35 years ago. I had a lumpectomy followed by radiotherapy and that was that.

32 years later a routine mammogram spotted DCIS  - 'grade 0, non-invasive' they said. Another lumpectomy,  no radio (can only be given once in the same location), no chemo, cosmetic surgery for symmetry,  all done. 

Another 2 years later I had a bad back. It gradually got worse until I could barely stand and I finally had an MRI, which showed a degenerating disc, as well as traces of cancer in the bones. 

An amazing surgeon fixed my spine, removing a tumour at the same time (analysis showed it to be secondary breast cancer), after which I had 4 blasts of radiotherapy.  I then started chemo, 6 three-week cycles of docitaxel with filgrastin, in parallel  with targeted therapy  - Phesgo and Denosumab.

The chemo was brutal,  to the point that my oncologist stopped it after the second cycle due to its toxicity.

Since then I've continued with Phesgo and Denosumab, with an oral calcium supplement, and I feel so much better.

The jabs are on odd cycles - 3 weeks and 4 weeks - but they're very quick, and almost painless. I'm sometimes nauseous and/or tired the day after a jab - and I have a very drippy nose! - but otherwise I feel fine. I'm back to doing pretty much everything I used to do. My last scan (the first since starting treatment)  showed an improvement; according to the doctor, the bones were repairing.

In a sense i feel lucky; if I hadn't had backache I wouldn't have known anything about it.  How many people are walking around oblivious to what's happening inside their own body? 

It has focused my attention though. There's nothing quite like a reminder of your mortality to put things into perspective. Having put my affairs in order, I'm booking holidays while I can. (I'm retired, so no work issues fortunately. )

Whilst it's certainly tough going through it all, i really think it's harder on family and friends who feel helpless. In my experience,  accepting offers of help works both ways, relieving stress for me but allowing others to feel useful.

Sorry for the very lengthy post, but I hope it helps you feel you're not alone. These drugs are really good, and newer and better ones are being developed all the time. Stay strong, try to be positive, and make a point of doing the things you always meant to do. 

Sending gentle hugs!