Shock an understatement, symptoms, burning pain between shoulder blades, achy pain in lumbar area, slight altered sensation in never regions, bowel movements, no real feeling, thats what prompted myself to walk into A&E, gut feeling something wasnt right, gp said osteo symptoms. Show up as bone mets, was offered radiotherapy for pain management, but ive put that on hold for when i need it in the future.
I dont mind answering any questions you might have, if i can
My upper arm has been painful for 6 months.
Then I started having trouble lifting it up to steering wheel and to change gear when driving.
Tried to get a GP appointment which took 4 weeks. Another 2 weeks to get X-ray, then another 4 weeks to CT scan appointment which is tomorrow.
All the while pain is getting worse and āthe thingā must be spreading.
Re radiotherapy, is that used for shrinking the tumours, pain relief or both?
Hope everything goes well today with your CT scan. Radiotherapy does both, ive been told. Only radiotherapy ive had was back in 2021 after my breast cancer surgery 5x intense sessions 26gy spread over 7 days.
Sending hugs to you
Hello. Iām new here! I was diagnosed with BC Dec 2023 and after countless scans had a masectomy and further surgery in March and April 2024, only to be told 1 day prior to chemo in July that I had secondary cancer in my bones - and they think it was there all along so mets in bones - extensive in ātrunkā is the most Iāve been told but I know for sure itās all the spine, due to numerous spine MRIs. So on letrozole, ribiciclin and denosumab. Only have a stiff lower back - but put that down to lots of running and having a desk job. Iām only 49 years old so very keen to read positive stories so can see daughter grow up.
Any tips for exercises and all round positively v welcome, and equally Iād like to support other who may be behind me on this journey x
I too am am on three months xgeva . First Cape tablets tonight . Let us know how you get on on the new E-E Treatment. My oncologist told me that if Cape doesnāt work or I canāt handle side effects thatās what I would be offered . Iāve been going through lines of treatment rather fast . I hope all goes well for you. It sounds like youāre on a similar journey.
Hello, I had primary stage 1 in Nov 22 and got diagnosed with secondary Mar 24. In the spine, I also just had a back ache - which I put down to the effects of radiotherapy. Itās absolutely devastating to receive a diagnosis isnāt it? Iāve found comfort from people on this forum but the sense of it all being so unfair, when a lot of my friends/family are cancer free some 15 years later, is tough. Iām swinging between giving up work (to do the things I want) or carrying on as itās a great distraction!
Hi there and sorry that we are in the same boat. Yes it is the worst news ever and even though I donāt want to feel sorry for myself I do feel ātoo youngā but I guess there is no such thing unfortunately. Iām currently on sick leave but am already keen to stop work. Itās always been a massive part of my life and really loved it but equally Iād rather have āmyā time now so trying to work out how I can make that happen when way off retirement age/ pension access / practical stuff etc. I guess these are all big decisions and donāt need to be taken quickly. Just when we are ready x
Hi Hope4441, I am still on here, I ended up in the hospital last Tuesday for 1 night the 3 Ribociclib didnāt agree with me and I had awful awful indigestion couldnāt keep liquids down plus my blood pressure was sky high had a lovely pharmacist call me and has reduced my dose down to 1 instead of 3 (I only took them for 4 days) I am starting the 1 tablet on Monday and I am praying that there are no issues
Did you have your appointment/scan ?
I am feeling so comforted by this page you are all amazing
I also take comfort in all your journeys!
Iām still on āregular checksā mode, no other medication apart from tamoxifen.
Iāll be having the next one (bloods + CT) in about 3 weeks and Iām a bit aprehensive, since 3 months ago the bloods said my cancer markers were elevated - but the oncologist said it was still ok not to do anythingā¦
The 1 year anniversary of my secondary diagnosis is coming up at the end of the month and thatās another date thatās been on my mind.
Although to be fair, I tend to forget sometimes Iāve got it, since my dadās got dementia and thatās filling my mind all the time
Hi rascal,
Hope you are feeling better now.
I did have my CT scan, followed by MRI spine, MRI liver and liver biopsy during an unexpected 4 night stay in hospital!
Long story short, I have Mets in my liver, lungs, shoulder, spine, sacrum etc etc and a clot on my lung to top it all off.
Feeling terrified and pretty hopeless.
Awaiting orthopaedic opinion to see if I need surgical stabilisation of my humerus, before radiotherapy and an Oncology appointment to get all results and, hopefully, some kind of treatment plan.
Oh Hope4441 bless you that must have been a terrible shock for you but as we read on this page there are so many positive stories with multiple mets but the waiting is the worst, once you know what you are dealing with and the treatment they are going to give you it will feel more positive, sounds like you have been through such a lot xx
I totally get how you must be feeling this disease is relentless but we cannot give in to it, thinking of you and please keep us posted on your journey xx
I am heading to A&E shortly as I have come out in a rash and have been advised by the hotline to go there today xx
Relentless is a very good word to describe it!
Sorry to hear about your rash. Hoping you have a very short wait in A&E and that they can get on top of it with antihistamines xxxx
Hi Hope44441
Just checking in to see how things are going ? Have you got a treatment plan in place. Iāve mets in Lung, Liver and Sacrum and just started Ribociclib, Zometa infusion and Fulvestrant.
Early days but so far so good. We are living with daily uncertainty, however the range of drugs available to treat the secondaries and enable us to live reasonably well are available, with more coming down the line, according to my Oncologist. Wishing you the very best in your journey with all this. You are not alone.
Good morning,
I am new here.
First of all, I give all my love and strength to all of you and thank you so much for sharing your experiences. They all give us a lot of strength and hope and my end.
I am writing on behalf of my mum, she was diagnosed with breast and lymphatic cancer 4 weeks ago, and before starting the treatment, the other checks gave her as well positive cancer on the bones produced by the breastā¦ all hormonal due to the age stating with the menopause, she is 58.
They told us it doesnāt have a cure ā¦ but started the treatment this week, so 4 days inā¦
Please apologies my mess-ups with the language, I am Spanish, and just moved back home after 15 years in UK, to stay with family and the idea of having my own one with my parents nearā¦ now I am so scared to be honest with all that is happening.
Her initial treatment was to start chemo intravein every 14 days at the hospital, followed by 12 weeks (weekly) then removal of the tumours and then radio. After the second diagnosis, everything changed and now is at home with pills, that treat the body in general.
I have been reading all of your threats and messages and am full of hope she will be the same warrior as you all are.
Seeking as well for some sort of guidance on what she can do to benefit her day-to-day regarding food, exercise etc etcā¦
Hi, Iāve recently been diagnosed with bone mets (apparently just one small lesion in my pelvis) and am waiting for CT scan results to check if itās spread anywhere else (keeping everything crossed it hasnāt). Iāve found reading everyoneās stories and positive posts so helpful so thankyou for sharing.
Iāve been started on Denosumab injections after being on bisphosphonates and had first injection last Weds - I didnāt really have any side effects after apart from maybe a tiny bit of nausea, but since Sunday Iāve had an almost constant headache and pain in my neck and shoulders and feeling bit more tired - Iāve obviously convinced myself that Iāve got brain mets too because of the headache but just wondering if this could potentially be related to the Denosumab or if itās unlikely with it being a few days after? Thanks x
so mets in bones - extensive in ātrunkā is the most Iāve been told but I know for sure itās all the spine, due to numerous spine MRIs. So on letrozole, ribiciclin and denosumab. Only have a stiff lower back - but put that down to lots of running and having a desk job. Iām only 49 years old so very keen to read positive stories so can see daughter grow up.
xxxx