I’ve been a lurker on this forum for quite some time and have finally plucked up the courage to say “hello”.
I was diagnosed and treated in 2018 at the age of 50 for stage 2 ER + cancer but sadly have just found out that I have metastatic spread to my bones… sternum, ribs, pelvis, both femur and left humerus. After a long 3 months since I became unwell again I will be starting treatment on the 10th.
I’m just looking to share experiences and to give and receive support from others going through the same. I feel as if my world has just been turned upside down and my future uncertain. I work as a nurse and going back to work looks unlikely.
I’m looking forward to getting to know some of you and to getting some advice on how to cope with the treatments. Thanks in advance.
Hi @dundeelass welcome to the forum. I’m so sorry that this has happened but you’ll find lots of support here. You may wish to also post here Living with secondary breast cancer - Breast Cancer Now forum as you’ll have direct access to people who can offer advice and support particularly around the wealth of treatments now available to those with a secondary diagnosis. Breast Cancer Now also offers the Someone Like Me support programme which you can find out more about here Someone Like Me | Breast Cancer Now in which you can have a more personal one-to-one relationship with someone who has been where you are now as you navigate your new circumstances. You can also speak to one of the nurses on the phone on 0808 800 6000. They won’t rush you and you don’t need to have a question if you just need a chat. They are available now until 1pm or between 9.00-16.00 Mondays to Fridays. My advice is to use all of the support mechanisms available to help you process the changes to your life. Big hugs to you.
Thank you so much. I have so many thoughts swimming around in my head just now. Goid to know there’s so much support available.
Hi, im sorry to hear your news, and can empathise a lot with how you are feeling. I was 54 when i was diagnosed with lobular bc in 2017. In May last year i was diagnosed with secondary spread to my bones in a few different areas. After months of nerve pain an mri scan showed a small tumor on my spine that was the cause of my pain. I was fast tracked for a week of radiotherapy and targeted hormone therapy the week after. I was then also started on abemaciclib 150mg twice daily. After a few months the Diahorrea side effect kicked in and became more frequent and i was taken off for a month and started again on a lower dose. Instead of 100mg however i was put on the 50mg and im feeling much better on it. My oncologist says this does not affect the efficacy of the treatment. Im keeping well and would say the only side effect is i feel a bit more tired than before i was diagnosed. I decided to retire as my job in social care was too .much. i am trying to keep positive and .manage most of the time. Down days are normal i think. I would be interested to know what treatment you are started on. Keep in touch…wishing you the best. X
Hi sorry to hear this.thankfully you’re now getting the required medication which I hope help you feel better. It’s always a constant worry for us all. I was diagnosed with stage 2 lobular bc with activity in 1/4 nodes nearly four years ago. I had a lumpectomy and after an Onco type test I was given three weeks of radiotherapy . I’m on Letrozole and took ibadronic acid daily for three years which I’ve just finished. I’m constantly getting niggling aches and pains and constantly worrying about the cancer spreading. I’m experiencing on and off lower neck pain which radiates down my upper/ mid back And with occasional tingling in my arms. I saw a physio a few months ago who said it was a pinched nerve and gave me done exercises to do which did help but it has come back. I’m now worried it could be something more sinister. How were your symptoms?
Hi irene i suddenly developed pain in my pelvis and hip spreading into my groin. Gp said sounded like sciatica but i was never convinced. Tried different medication for nerve pain and finally pregabalin and tramadol helped a bit. Gp referred me to ortho and consultant said it sounded like femoral nerve pain as it was the front of my leg that was affected. It was he that advised an mri was needed to confirm what was causing the pain. As you say its a constant worry. Xx
I’m starting treatment next week… 4 weekly Denosumab injections snd Ribociclib. My Tamoxifen has stoppand I’m now taking Letrazole. I’m having a discussion next week to see about having radiotherapy on my right hip. Has anyone else started similar treatment?
Hi @dundeelass,
I’m on Abemacliclib and Letrozole. I was also a nurse but diagnosed at 55 so was able to retire. There’s no way I could run around a ward again with these aching legs n joints!! I understand u may not the thinking about work at present but bear in mind that u may be eligible for ill health retirement xxx
As soon as I got my diagnosis my manager suggested it. I’m really not sure how to go about the process. Is it fairly straightforward? I know there are different tiers depending on severity of illness. I’ve been started on Mst now for the pain in my hip so mobility is an issue at present. I haven’t made a decision yet but going back to work seems unlikely.
Hi @dundeelass, welcome to the forum. Our boards are here for you to post to if you ever need to put your thoughts down in writing.
Our nursing team is here too in case you need to be in touch on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).
Sending you our warmest wishes ahead of the start of your treatment
Bernard
Hi @dundeelass, I’d be lying if I said it was an easy process cos it wasn’t!! But if u get your union rep to help u (I had a fab one) and phone the pensions dept to get the ball rolling (think mine took about 9 months to sort out)!! Feel free to message me again.
Good luck xxx
Hello there! I am so sorry to hear this. It just seems so unfair. We are told our prognosis is good, and then we feel a bit cheated when things don’t work out that way. I can tell you, as someone who has been where you are, that you will feel better soon. Your experience sounds very similar to mine. Diagnosed during Covid at 48 with primary ER+ stage 2 breast cancer. Lumpectomy, radiotherapy and Tamoxifen for 10 years. I was a teacher, but always struggled with tiredness after initial treatment. Sound familiar? After back pain just over 15 months ago I was sent for an MRI which eventually diagnosed bone lesions in spine and sternum, and also small nodes in lungs. I was treated with Ribo, Letrazole, Zoladex and Denusomab monthly injections. I find the Ribo and Letrazole the hardest to deal with- aches and pains etc, but have actually had quite mild side effects so far. I take both in the morning after a big bowl of porridge which minimises the nausea pretty effectively. I have 3 month CT scans and after 6 months the scan showed all areas inactive and the scans were essentially normal. Long may that continue. I have given up teaching due to the high infection risks and the tiredness, but otherwise life continues pretty well normally at the moment. Once the initial shock was got over, I just have to think we are lucky to have good treatments that do work. And make the best of the life we have. I really hope that your outcomes are really positive, and I am happy to answer any questions I can if you have them. Good luck and good wishes to you. Xx
It’s completely normal to feel overwhelmed-anyone would in your shoes. I hope your treatment on the 10th goes as smoothly as possible.
Hi, I’m sorry to hear about your news, my breast cancer was not similar to your diagnosis.
I was a manager within the NHS and had just retired at 62 when I was diagnosed a week later after having my mammogram via the breast screening programme.
As a manager I supported a few staff members for ill health retiral, please ensure that your manager/HR manager or union rep request an ill health option as well as a retiral option as this can be more beneficial depending on your age or length of service.
You can also go on a Teams call which the SPPA run for staff planning to retire within a year, I found this very beneficial for my own retirement.
Wishing you good luck with your treatment x
Hello @dundeelass
Just want to send you a hug and to let you know that we are all here to listen and support you as and when you need it 
hello dundeelass !
i simply wanted to wish you all the best, with the start of your treatment tomorrow !
stay strong and positive- if possible… hope you will find the strength, to fight this… and have the energy to tackle the treatment !!
Hi
I had exactly the same happen to me. I had primary breast cancer in 2021 and diagnosed with secondary in 2024 due to ongoing pain in my hip. The cancer has spread to many bones.
I’m on Letrozole, Abemocylib and Densomab injections.
My main side effect is fatigue which is debilitating. I’ve taken early ill health retirement.
I spent the first 3 months of my diagnosis having tests and doing paperwork e.g retirement, power of attorney etc! It was a crazy time.
Things are slowing down now and once you get into a routine things will get easier.
Good luck. There’s plenty of support out there.xxx
Hello @dundeelass
So sorry to hear of your diagnosis - just wanted to show my support as a fellow Nurse . A few years ago I had a retinal vein occlusion which was very debilitating and at one point I was unsure if I would be able to go back to work. I was 54 at the time and eligible for early retirement on the old pension scheme at 55 but I looked into retiring early as I thought they might actually sack me before we got to that point . I did get back to work and took a Retire and Return .My Union Rep was great - also we have a Pensions Officer which I know that not every Trust still has and he was great and expedited all the forms and also gave me advice about what to do if if I wasn’t able to come back to work. I was referred to see an OH Dr. but you may not have to jump through that particular hoop with your diagnosis but I would keep/ save any letters / appointment info that you have as you may have to submit them . If your Trust doesn’t have a Pensions Officer then I would ring the NHS Pensions Helpline . It’s horrible when things change so fast - I remember being in tears when I spoke to my union rep and saying " this isn’t how I wanted to end my career " and my heart really goes out to you. Xx
Sorry to hear that you’ve had to go through this . Thankfully the scans are show good results. Did you have severe ongoing pain in your back and if so did how long before MRI. I get on and off pain in my neck and upper back which physio has put down to wear and tear in my neck from sitting in my phone too long . I’m constantly worried it could be something more sinister