Mum diagnosed with secondary breast cancer that's spread to her bones

Hi Tilly

Sorry to hear what has happened to both of your parents. Incurable cancer just means the cancer has spread from its original site, travelling either via lymph or blood streams. There could be cancer cells circulating anywhere, so the usual approach is to treat in order to reduce the cancer load and therefore symptoms, whilst also minimising side effects. Depending on the type and amount of cancer, the reaction to treatment, overall health etc, some people can live for a long time like this. Terminal is usually used to describe the final stage when there is certainty the patient will die soon. Hopefully your mum is incurable and treatable, and will be able to maintain a reasonable quality of life for some time. Unfortunately all of us incurables die at some point, but it can be with cancer rather than because of cancer.

I have metastatic TNBC which had spread to my liver. Following treatment, I have been in remission for some months - ie no visible evidence of cancer. So that can happen too. 

It does become easier once you have a treatment plan and your mum can start to adjust to whatever that entails. I can’t imagine how tough this is for you all having just lost her husband / your father. 

Hi Coddfish

Thank you so much for your kind words and sharing that with me I really appreciate it 

When we see the oncologist and we can get clarity that'll be a huge help to understand what we're up against.

I'm so pleased to hear you've been in remission, cancer is a truly awful thing and it's not until you're either suffering with it or see a loved one suffer/die from it does it truly hit home how horrendous it is but also how important it is to have hope and I'm hopeful that mam will respond well to the treatment, she's otherwise healthy so hopefully that'll stand her in good stead xx

Hi Tilly

Sorry to hear about your mum.  As Coddfish says, once cancer has spread through your body from your breast it becomes secondary, stage 4 or metastatic breast cancer and yes it is incurable but can hopefully be controlled with treatment.   I have the same since this time last year, as have many of us unfortunately.  I am on treatment and had radiotherapy on my spine which has reduced the cancer.  There are many new and successful treatments available now.  Terminal I understand as being less than 12 months to live.

Once your Mum has a treatment plan things will become easier.

I am in a Secondary Breast Cancer Support group which is invaluable as we all have similar and it is easier when others understand exactly what you are going through.  Check out Breast Cancer Now who run these across UK.  Make Seconds Count are similar.  Some friends in the group have had SBC for many years and live a full and active life.

Hopefully that helps a little.

K x

Hi K

Thank you for your response and sharing that with me. Mum is eager to start treatment which is completely understandable so hopefully she will have the oncology appointment asap so we can get clarity and she can begin.

My mother noticed changes in her breast in lockdown z couldn't get an appointment and left it because she wasn't experiencing any symptoms (unbeknown to my sister and I until she told us 2 weeks ago). 

My biggest concern is because ages potentially had this die years has this limited gee options or time which is a very frightening thought... The treatment should work as she's otherwise a very healthy 77 year old 

Thank you for the support group info I'll check it out x

Morning Tilly, sorry to hear about your Mums diagnosis. I have Secondary breast cancer after being cancer free for over 20 years. Diagnosed 2 years ago with Metastatic breast cancer ER8, PR7,HER2 -ve in my left jaw for which l was taking Anastrozole tablet daily which was keeping it under control then in April this year l had a full body scan as l was suffering with severe back pain and was diagnosed with Increased bony metastic disease for which l am now having Fulvestrant injections and Ribociclib  tablets, Anastrozole has been stopped now. I am 78 

I wish your Mum well. 

*update*

The oncologist confirmed that the secondary breast cancer of the bone is present in all of the bones scanned in her CT which is basically pelvis, entire spine, shoulders etc... she's now been referred to have a bone scan to check the rest of her bones. They're also going to start her on bone strengthening treatment, mam just needs to get a recent dentist checkup done (has one tomorrow after having to sort them out to get one sooner than December that they tried to book her for!) and she's had bloods done , dentist is required before they start the treatment due to it potentially impacting her jaw/teeth... 

She confirmed it's stage 4 incurable secondary breast cancer which she said "I won't be surprised if it's in the kidney/bladder tube" as mam has a cystoscopy next week to check the tube that connecther bladder and right kidney... So there's a chance the cancer is there as well   the appointment for that is a week Friday!  

The breast cancer she has is a hormonal one... She's been given letrozole to take from the day of the appointment & we're waiting for the final result of the biopsy to understand if it's HER2 positive/negative as that will dictate of she then has chemo or tablets

I'm pleased that mam can now finally make a start on her treatment journey & has something in the meantime but finding out the extent of the spread to the bones and now potentially in the kidney feels like finding out allover again... My mother has been incredibly brave during these appointments and the entire journey since finding out... I'm being strong for her but my god it's so hard to process this.

Hi Tilly, This is very hard on you but at least the ball is rolling now and your mum is getting a detailed diagnosis. Just be reassured that there is treatment available. I have metastatic BC which has spread to my spine. Only found out because I had broken a vertebrae and it showed up on the CT.  I am still trying to get my head around this but I have been told to think of metastatic cancer as a chronic disease like e.g. diabetes which can be treated.  Those affected by cancer are made to realise so unkindly that life does not go on indefinitely whereas the others carry on pretending that they are going to live forever.  Staring at the inevitable helps me get my act together and stops me wasting time putting things off until tomorrow. Was always a bit of a procrastinator.  I am 68.

I wish you and your mum all the best. Hugs xx

*update*

I can't believe so much has happened since my last post but here we are ... Firstly, as someone who's supporting my mother in her cancer journey I take my hat off to everyone that is suffering with such an awful disease.. not just coming to terms with the news, living with symptoms/side effects but also going to so many appointments and taking in so much information!

So my mother has had the bone scan results & oncologist confirmed that the cancer is in her ribs, shoulders, tops of her legs, spine, pelvis and one side of her jaw! Absolutely heartbreaking  . She had her first bone strengthening treatment Dinosumab which seems to have made her bone pains worse where the Letrozole previously had made her pain alot better... Is this temporary? Will her pain ease as she has more bone treatment? She has to have 1 injection every 4 weeks.

This week she has started Ribociclib which terrifies the both of us after being told all of the monitoring that's needed, the settling in period to get the right dosage, side effects etc ... She's 2 days in and will have regular appointments with the oncologist and constant bloods/observations now ... It's reassuring that she is being closely monitored.

In her last oncologist appointment last week, she requested an x-ray of her hips to check bone density there as she may potentially need to refer her to orthopedics for further support... I forgot to ask but I wonder if this could mean eventually her mobility will be worsened? 

I've been able to secure her a blue badge for when I take her to appointments etc and it makes such a difference!

This last week the magnitude of the situation has hit me like a tonne of bricks, whilst I've never been in denial I've been and still am running on adrenaline to support my mam and this week I just had a total emotional breakdown to my husband as the fear of losing her becomes real... And like when my step father was terminally ill and died in July, I can feel the same anticipatory grief coming back.

We're down velindre next week for an MRI of her spine just to get a baseline of what it's like now as she progresses further into treatment.

I'm pleased she's been able to have an additional drug to help stave off the resistancy the cancer could develop against the Letrozole, I just csnt believe my mother is going through this and it wont be cured

Hi Tiley 24

I was diagnosed in June with secondary breast cancer in the spine it was picked up because I found out in March that I had a new primary cancer to the oesophageal I had only just finished my breast cancer treatment .   I am on denosumab injections I have had three so far yes I have found that I have more back pain since starting these injections I just had a MRI scan this week at Verlindra to see if the cancer as got worse or is the pain from the injections I will have the results in two weeks. 

Thanks for sharing JaneyM1 . I'm so sorry you're going through this, please know you're not alone... Although the pain is still there in your bones did it ease up at all over those 3 treatments? 

Keeping everything crossed that it hasn't gotten worse for you xx