Metastatic bone cancer

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Hi I am very new to this forum. I was diagnosed with breast cancer July 2017 and had a right side mastectomy August 2017 and have been going for check ups every year since, and after the usual mamogram  have been given the all clear every time. I have been seeing my doctor since August 2021 with pain in my hip only to be told that I am getting old and we all get arthritis so they have been treating me with painkillers for arthritis ever since. Last month having now gone private to sort my arthritis they gave me an MRI, for which the results came in Friday 10th june 22.

I now have a new diagnosis I dont have arthritis I have Metastatic bone cancer with a pathological fracture of the left Iliac blade etc, etc.

I would be very interested to talk to anybody with simlar problems.

  • Sorry to hear your result. Don’t despair - I’ve was similarly diagnosed in 2015, much to Docs surprise as all bloods were good! I’ve been on Letrozole and Denosumab since then with minor setback of titanium nail in my femur due to a lesion in 2016.  Tumour is at bottom of my spine so in 2015 I had radiotherapy to it before treatment above. Thus there is treatment - at present I have some progression with the possibility of new drugs of I so choose. I originally had Stage 4 cancer in left breast some 22 years ago.  I am now 77!  I hope this encourages you.

  • Thanks for that you have been a great help. Glad to hear that you have been doing well I have today spoken to one of the nurses at our local breast care unit and she is setting me up an urgent appointment with the Oncologist so things are happening. I am also 77 and hope that age does not write me off.

  • Hello 77 year olds.  I am 77 in October.  I have mets in my spine and sternum.  I also was told I had arthritis.  I am on Palbociclib and Letrozole plus infusions every three months.  Overall I dont feel too bad but cannot walk too far.  I do not have a great deal of energy and am breathless.  Can I ask you both how you feel.  Do you get tired?  Hugs to you both.

  • Hello, It almost looks like we are getting a 77 club going here. If you are breathless you need to get checked out, I had the same problem about 5 years ago and it turned out to no connection to my cancer as it was a heart problem. and have been on beta blockers and aspirin ever since. Take care all.

  • Hi my diagnosis was very similar to you, during start of lockdown I had pain in leg back etc - X-ray said arthritis in hip - had physio over telephone for months which made no difference. Finally pestered to see someone- this is when discovered cancer had returned to bones - I had breast cancer 15 years ago, I had my femur pinned immediately due to severity of bone and started chemotherapy and herceptin and other drug - now phesgo - 6 rounds of chemo helped to stabilise cancer cells and I now just have phesgo injection every 3 weeks and denenusab bone strengthener injection every 6 weeks. I have a ct scan every 3 months and so far all still stable ! Treatment is easy now after chemo, I have no side effects and can carry on with my life . Only problem I have is a vertebrae collapsed at top of my spine before treatment started, so my back is curved which causes discomfort if I stand or walk too far , but I manage .

    Hope you get treatment regime soon, best wishes , I am 66 and fingers crossed carry on for some time x

  • Hi you guys are all telling me that there is light at the end of the tunnel, after reading all of your posts today I feel a whole lot less deflated. Thanks for that. Sounds like a long haul Winship but thankfully you seem to have come out the other end. 

    I rang up and got the breast care nurses on the case this morning and have a meeting already arranged for 15/6 so fingers crossed something will start moving fairly soon.

    Best wishes to all

  • Apologies 

    I have flaged to moderator in error. Its too easy to hit the button when you're hovering over the text!

  • It makes me so cross that we are not all given the information of what to watch out for regarding secondaries when discharged from primary treatment.  Doctors should be on red alert for any signs of secondary but they are not  - so we have to educate ourselves.  I was helped by the After Breast Cancer Diagnosis infographic here -https://www.abcdiagnosis.co.uk/resources/infographics/

    I asked for a scan when I had a very enlarged lymph node in my neck five years after primary BC as I realised it was a "red flag" and they found secondaries in my liver. Described by Drs as an "incidental" discovery! I'm sorry you got fobbed off at first but well done for persisting and I'm so glad you have finally got your diagnosis because now you will get the treatment you need. 

    I attend a secondary breast cancer support group on zoom which is organised by Breast Cancer Now. Its so good to speak to others in the same situation, you might find it helpful? Sending love Heart

  • Totally agree, my yearly checks have only checked my remaining breast for lumps but as I have since found out secondary cancer in any part of the body is very common and all doctors should be aware of it. The only way that I found out that I had secondary cancer was from a random scan on my hip investigating my "arthritis". 

    Until last Friday I was totally unaware that secondary cancer existed probably my own fault as I did not ask the questions after the mastectomy.

    My thoughts are that If secondary cancer is so easy to spot on a MRI why aren't all all cancer sufferers post cancer automatically offered yearly scans and GP's either reminded and or made aware of secondary cancers.

    Apologies for the rant but hope you are getting sorted now. Best wishes

  • Hi , I’m a newbie & I also agree about having yearly scans after being given the all clear ,

     I was first diagnosed with breast cancer back in  2017, had chemo, mastectomy & radiotherapy and in April 2018 was told all was good . Was given tamoxifen to take for at least 10 years , continued with yearly mammos and blood tests , all ok , well liked to think it was .

    Had never been told about secondary cancers & what to look for,  So in October 2021 started to get shoulder pain ,and couldn’t raise my arm, thought I had a rotary cuff tear as was doing a lot of work in the garden so just carried on but soon started  to become breathless.

    By December after giving in and went to the docs followed by X-rays & scan , was then diagnosed with secondary breast cancer in my bones,sternum, hip, liver & lung pleurisy !  I’ve been on capecitabine & also have a pleurisy drain & denosumab injection every 6 weeks, previous  scans have shown shrinkage & drainage is becoming less , hoping CT results next week will also be promising.
    Stay positive everyone !