I was diagnosed at 42 Stage IV de novo in late September 2019, to bones only, located in sacrum and my lower three lumbar vertebrae, and a 4-5 cm primary breast tumor. Diagnosis was chaotic and treatment didnt start until three months later, at which point my sacrum had fractured and I was on crutches. So they zapped me with some radiation to the pelvis and gave me some pills and off I went.
It took 7 months to rehab myself and get my strength back, but in that time the drugs (palbociclib, denosumab, zoladex, letrozole) have held my bones stable/healed some of them and my primary is now reduced almost 2cm. Once I found a generic brand of letrozole I liked (and stuck with it) I have no joint pain or aches or anything. I am not on any painkillers, and for the most part feel good, maybe a few days a month of fatigue. I look absolutely normal, you would never guess I have cancer. I continued to work throughout (probably the one positive of Covid is the WFH so in those early months I could go lay down if needed), do all my hobbies, moved house and lifted boxes, and workout about 3 or 4 times a week on the bike/lift light weights, and walk nightly for an hour or so.
I switched hospitals in September and went private and it was suggested I do a genetic test because of my age. It came back a surprise BRCA1 - we can't find anyone on either side with breast or ovarian cancer, but its there and it allowed me to tell my much younger sister so she can go get tested, and hopefully be spared if she is positive. To the OP, your age and original hormone profile suggests you could have a genetic driver behind this - has anyone spoken to you about being tested?
As I am highly ER/PR+ (which is not common for BRCA1, but nothing about this dumb cancer has been common) and on ovarian suppression (the zoladex) to enable the drugs to work, between the BRCA result and my age, I asked to have my ovaries removed (MO preference as well). MO referred me, with an aim to getting the surgery date set up so its ready to go when we come out of Covid.
Bone only is a good spot to be in, I know of someone on another forum who went 5 and a half years on the same drug cocktail, bone only, and has only just now progressed slightly, still in her bones. There are some women from the original trial for palbociclib who are still taking it - 8 years later. I know a few women who have brain involvement who are trucking along 8 years after diagnosis, and a woman who has had liver involvement from the start who is still here - 20 years after her initial diagnosis. If you are still TN for this recurrence, there are quite a few immunotherapy trials run in London. If its switched to triple positive well, between the Herceptin and Perjeta and the new therapies coming out, thats a good spot to be in. BC is not (yet) a chronic condition, I dont care what they say, but its edging along.
Its a totally crap situation to be in, especially in your early 40s, and when you see friends doing "normal person" things like worry about kids school or work promotions. In a way its almost been freeing to not give a **bleep** about any of that anymore, to have had the rug pulled out so completely shows how much an illusion of control and safety we have over anything in life. I control what I can and leave what I can't and don't let it bother me too much.
Good luck and come back and let us know what your plans are!
Firstly big hugs.
I too am recently diagnosed with bone mets (Dec 2019) . I was initially diagnosed June 2017 at 50 with stage 3 ER & HER 2 positive breast cancer, after my younger sister was diagnosed a week later with breast cancer, it was discovered I had BRACA2 gene ( which we had no idea about as no breast cancer history we could find) I had double mastectomy, diep reconstruction, lots of chemo, as I had issues with reactions to a few, plus Herceptin zometa, and Letrozole. Treatment took it out of me but I really felt I was getting healthier and stronger at turn of last year. Was walking dog much more during lockdown and started getting back/groin pain. GP put it down to age, working from home, muscle memory loss due to previous illness etc. Painkillers didn’t help and I was often sobbing in pain. Fast forward paid for MRI and CT scan to discover Mets in right hip (CT also shows something on liver but told it’s benign, common and looks old, but needs to be watched) . Treatment has been slow start for me, had bone biopsy, which should cancer is still ER + , still waiting on HER2 results however this week I had a booster does of radiotherapy and steroids, which has helped my pain. Start fulvestrant and zometa on Monday and seeing Orthopaedic surgeon on Thursday, with a possiblity of getting full right hip replacement to improve my pain and mobility.
I too was/am devastated, really thought I could start to park the big C in a box in my mind, hopefully never to be opened.
My 2 sons are older and left home and with lockdown/Christmas, I haven’t yet given them my full news. They know I have hip issues which are being investigated but time is coming to break the news, but not sure how you do this over telephone/zoom when you can’t cuddle and reassure them.
my husband is struggling and angry ( we are 2nd marriage and not yet 8 years) he is ex army and finding it very difficult to know what to do, he’s self employed and works away from home but has been unable to work since my diagnosis as I have been virtually housebound, so we need to get something sorted. I’m also a ‘bad’ patient fiercely independent, hate accepting/asking for help, something I fear I may have to do more in the future.
I have signed up for 2 research trials with my hospital, which is giving me something positive to focus on and my Oncologist has said ‘many woman live well in to double figures after a diagnosis like mine, but the disease is unpredictable’.
I wish you well and hope you get support/help you need. Unfortunately I’m too early in my journey to help I think but as we are both newbies to the club nobody wants to join I thought I would reach out 💕
Sorry that you find yourself here. It sounds like you've had a bit of a rollercoaster leading up to this diagnosis which like you say has just floored you, as it did myself when I was diagnosed with mets in april not long after first lockdown began. My primary diagnosis of grade 3 triple positive invasive ductal BC was in 2015 and so I'd been in remission for nearly 5 years and was well and truly putting it behind me. A niggle in my back sent me to GP, I really didn't think it would be sinister. A bone scan showed hotspot on 1 rib and left hip/femur so a CT was ordered and I was devastated to be told I not only had a recurrence in those bones but also my liver and right lung, well I was reeling! I was 39, recently turned 40.
In these short months since my diagnosis I have come across loads of ladies who have lived years and lived well with mets and in particular with bone only. I would advise not to look at data/statistics online as these are out of date and do not take into consideration newer meds. Also as there is no collection of data on individual sub types of BC and their prognosis, it all gets lumped into one statistic and an average is determined from that.
I'm sure many of the lovely ladies on here with bone only will respond soon, weekends can be quiet on here as I assume and would like to think, everyone is enjoying it, as much as you can in a lockdown anyway!
Best wishes, ems x
I’m 2 days post being told the news you never want to hear, and I’m completely floored, I really really need some support and guidance.
I was diagnosed with right grade 3 TN bc in June 2019, 5 months of chemotherapy, surgery and 20 rounds of radiotherapy later I was in remission. In Sep 2020 I felt low aches in my lower back round my kidney area and base of lungs, ultra sound of kidneys and CT of chest followed end Oct which showed nothing other than I’d probably had COVID. Roll forward to December 15th, feeling a bit rubbish, went for a COVID test and I was positive.
Last Sunday while on shift at work, I noticed an enlarged node in my arm pit - right side- it was very different to the lump I’d found previously so assumed enlarged node after having COVID was normal but to be sure spoke to the follow up breast care team on the Tuesday, Friday I was having mammograms and ultrasounds and told it looked like a recurrence that had spread to the nodes. Tuesday this week went to the Royal Marsden for a CT PET scan which revealed bone mets in the usual places (spine, pelvis, femur bones) - DEVASTATED!
Ive had a biopsy of my lymph node today to look at receptors and going in Wednesday for the plan of treatment.
Im just so broken over this news, I am 43 and have two young children and just cannot imagine not being here for them - I really just needs some light , some positives to focus on. I’m trying so hard to be positive and strong for my husband, but he is struggling so much and I don’t know what to say or do.
I see from this forum that lots of you are living with bone mets, any insight would be soooo helpful.