Hi Hope44441 I had an MRI scan because I had awful pain between my shoulder blades, I then noticed a lump in my boob so was sent for a biopsy the spine cancer report came through first and I was told it had metastasised but not told where the main cancer was (which was in my boob) but that result came through after to my consultants horror !!
I was then sent for a CT scan which had shown no signs of spreading to any other organs so I am now having the oestrogen blocker, which is the Letrozole, the Ribociclib and an injection to strengthen the bones but I have problems swallowing large tablets and have been struggling, any tips appreciated
These messages are really helpful thanks everyone it is such a worrying time
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Hi rascal,
Glad your CT scan was clear.
How long did it take before you got your results?
Mine is to check for further spread or a new primary as mine was 13 years ago!
Iām hopeless at swallowing large tablets, too! Xx
I had mets diagnosed in ribs and spine and sacrum after just thinking I had hurt a rib.
I did have a biopsy on my sacrum to check it was the same type of cancer cell and found that actually a much better biopsy than the original one from my breast tumour. Not painful at all .
I was on fulvestrant injections and Ribociclib for 10 months . I found both of those very manageable all told although I did have to be on the lowest dose of Ribociclib because of blood levels . I got quite tired but found it good to have some exercise every day and that helped.
I am 76 but managed pretty well .
I now have to change to a Chemo tablet which I will take unless side effectās are unmanageable .
There are lots of treatments out there and like others I have known of people with spread to the bones who have been going for up to 10 years or more.
It is all unknowable and therefore scary of course . I hope it goes really well for you.
I find all the comments on this forum to do with secondary breast cancer very helpful.
The actual treatment of course depends upon the particular Cancer cell characteristics .
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Thank you so much for replying with such detail. You have been subject to a lot of pain since you first felt something was wrong. You still have a lot to go through with your CT Scan tomorrow. The good thing is you are now getting the investigations but I think we all know how you feel about waiting for results etc. I hope you will post on here when you know more and meantime I wish you all the best.
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Thank you xx
Hi Gillmary,
Was your biopsy under local anaesthetic? Xx
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@Bookie hi. Thanks for your post. I e so need to hear more of these success stories. Strength to us all.
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Hi I was told about my scan results 5 days after the scan by the GP at 6pm with a phone call, the consultant was in disbelief that I was told this way but then I had an appointment 2 weeks later after they had their multi Dept meeting to discuss everything and tell me all my results and that made me feel a bit better because I knew that there was hope, although it is very much a roller coaster
Has anyone had side effects of taking the ribocilab ?
Hi smb and all,
Im new to this forum. Itās comforting to read all your posts and makes me feel
Less alone with all this.
I was diagnosed with metastatic breast cancer which has spread to the bone back in November. Iām on Palbocyclib, Letrozole and Denusomab injections. Side effects not too bad but I do get loads of hot flashes and tiredness. Not sure if I will have surgery on breast and lymph nodes as yet.
Psychologically it has been very hard to deal with the fear and uncertainty, and I too get very anxious at times. I find yoga has helped a lot with the worry and makes me feel much calmer so I recommend you try this.
I keep being told itās incurable but I know that many women live for many years on this treatment.
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I was on ribocyclib but switched to Palbocyclib which is a much smaller tablet so easier to swallow.
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I got my results and the CT shows a nodule in my lung which at this stage theyāre not too concerned about and will monitor it with a follow up CT scan in 3 months.
However they are concerned about one thatās in my spine (vertebrae in my neck) I am having an MRI on Friday and if it does turn out to be cancer it will be discussed with an oncologist regarding next steps. Depending on that then will then schedule my lymph node clearance surgery.
Sometimes all of this feels so surreal, I canāt believe I have cancer and having to deal with all of this. But I need to be strong and fight this
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Yes it was .
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Thanks hattie1 I will mention that next time I speak to my oncologist
Hi . I originally had hip pain & struggled to walk any significant distance. I was misdiagnosed for 6 months ( told I had a pulled muscle due to working from home). After a biopsy in my hip I was told i had secondary cancer (bone loss in my hip) and confirmed primary BC ( Medically retired at 58). I am now under Christies and the ROH ( Birmingham). After Radiotherapy, I commenced Letrozole, Ribociclib, monthly Denosumab Injections. I attend Christies for 3 monthly scans. I am using crutches and have a mobility scooter ā¦but I focus on what I can do and attend weekly fitness classes (suitable for me) and hydrotherapy ( NHS & Private). I am lucky i have allot of support and actually feel ok. Hopefully this is helpful - good luck
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I had breast cancer in 2012 , mastectomy, radiotherapy chemotherapy then 10 yearās of hormonal therapy
In January 2024 i broke a bone in my neck and scans showed mets in my spine, ribs and sacrum. I had radiotherapy in March followed by Fulvestrant Palbociclib and Denosumab. Unfortunatly a CT scan in May showed the cancer had spread further in my spine and i had broken a rib. I have now had one cycle of oral cancer chemotherapy tablet Capecitabine and crossing fingers it wirks. So far no side effects and I stay positive. You ladies are an inspiration.
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Yes to side effects. Sorry to hear you are going through similar experiences. Not nice what so ever! On kisqali ribocicilib My liver readings shot up disastrously quickly and they had to take me off them. Tried a reduced dose and liver reacted the same. As for side effects I joked with the oncology nurses as I seemed to tick off the boxes! All within the first 3 months of this year.
I passed out twice banging my head and had an interesting time lying on beds in A& E for about 13hrs each time until they let me home. I donāt normally react that way to drugs.
You could say that Iām unfortunate as Iām one of the people it didnāt work for so my only alternative is letrozole and zumata intravenous for bone strengthening.
Stage 4 Her 2 negative ER positive cancer in bones, lungs and glands. It all came a bit out of the blue in December as I was being treated for arthritis and had attended a 12week gym pain management course!
However, I was diagnosed with Stage 2 invasive Breast cancer in 1996 and enjoyed years of working full time, holidaying and getting on with life. Lots of exciting and precious experiences with my family.
I do hope you can overcome the side effects as I totally realise itās not easy and that you are able to get on with everyday living. The breaks make a difference and tended for me to be good weeks.
My primary Breast Cancer was in 2018 - had lumpectomy and full node clearance . Chemo and radiotherapy.
Fell and broke my hip last April and it seemed to be healing OK . I was on Letrozole and so pushed for a Dexa scan to check for osteoporosis which did indeed show that . Started on Alendronic Acid but couldnāt tolerate it so referred to rheumatologist for Zolendronic Acid infusion . He wanted to do more scans and I was by this time in a lot of pain and finding it difficult to walk .
Sadly scans showed metastases in hips and spine and a few more places - was completely devastated. I did have the Zolendronic Acid infusion and that was marvellous for reducing my pain and I am back to walking almost normally again - still use some sticks on longer walks .
Had bone biopsy - possibly one of the most horrible things ever - to find the biology of the cancer.
Now being treated with 6 rounds of chemo (Docetaxol) with Perjeta and Herceptin as well as Denosumab . After the 6 rounds will have the targeted therapy as injections (Phesgo) every 3 weeks for as long as it keeps working.
My oncologist is the most uplifting doctor and makes me feel positive about the success of the treatment .
It is so good to read about people who are living so well with this - I was in complete bits for weeks waiting for results and appointments.
Good luck to you all on your journeys.
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Hi Hattie1, how are you getting on with it all? The flushes are awful for me but its the insomnia thats the absolute worst. I have metastatic spread to my left lung and 5 place in my spine, where are your bone?
So lovely of you to message me, thank you 
I have bone metastases in my hip and spine. Iām getting on ok thanks. I also canāt sleep but never was a good sleeper anyway! Main problem is fear of the future and what will transpire. Itās so frightening. Have you joined the online therapy group with Cancer now for women in our situation? Iām thinking of starting.
Hope you get a decent nights sleep tonight !
Hattie x
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Hi,
I was a really good sleeper prior to cancer, usually had a good 8-9 hours a night, now, 3 or 4 hours broken sleep. I have been prescribed tablets to help but I try not to depend on them too much as the body gets used to them and they wont work so well. I keep them for the weekend. I still work 4 days a week but with the lack of sleep it is tough. Do you still work?
I too am fearful for the future, mostly the pain and being helpless. I was always very active and still am as much as i can.
I have not joined the online therapy group but I will consider it. Just being on here is a big step for me.
Jackie x
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