Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Hi- Newly diagnosed

Ruby2016
Posted by

Hi Nicky,

I don’t think what you’ve said is a moan, it’s your opinion ! I am on Facebook and another forum but nothing else - I want to be on WhatsApp and join a few groups I’ve been invited to but I am a novice with technology and don’t have an iPhone. So just manage without it at the mo!

xxxxxxx

Nickyd1
Posted by

an iPhone helps but isn’t essential. My partner got a Huawei last year and it outstrips my old iPhone. The apps get more sophisticated all the time and phones cannot cope. My poor old iPad is on the drawer of shame in the dresser alongside old cables and batteries that fit nothing, it’s like watching Toy Story when the old toys go in boxes! 

Daylightdancer666
Posted by

Hello all. My name is cazzy aged 33 breast cancer spread to spine snd bones. Was 32 when diagnosed secondary breast canceer nice to meet you all xxxx

Love hugs and cat paws 
Cazzy xxx
wino
Posted by

Hello my name is wino, firstly sorry to hear about your diagnoses. I am new on this site as of today,i was diagnosed with breast cancer 16 years ago and today found out i might have secondary bone cancer i have been fast tracked but if i am honest its not looking good should have scans next week hope we can all keep in touch for a long time xxxxx

ownedbystaffies
Posted by

Hi

Like you I had a long clear period from breast cancer in 2004, and then diagnosed with secondary breast cancer with mets in liver and bones in 2017. I had 13 clear years. It was a bit of a shock as I am sure it must be for you, because inevitably we assume we are pretty clear after that length of time.But on the positive side, I have had treatment for 2 years ( weekly paclitaxol) and everything held stable for that time. I am now on a different non chemo treatment and hope that this will keep everything stable for another decent period. So what I am saying is, don't despair even if you do get bad news - there are plenty of treatment options for those of us who may be deemed incurable but treatable. Good luck with the results.

wino
Posted by

Hi ownedbystaffies                                                                                                                                                                                                                                                                                                                                            I really appreciate your message its been a couple of bad days should hopefully get my scan next week to see what i am up against. Like you it was a shock i went to doctors thinking i had pulled a muscle had a chest x ray and now a big possability of secondary bone cancer wow.I am trying to stay positive and seeing what your treatment involved it has made me less anxious (thanks) i just assumed there was nothing to be done for bone cancer so lets hope i can have the same treatment options and feel a little better about things, i realise its not curable and its all about quality of life but its really stressful thank you for sharing i am really pleased i came on this site and will let you know how things go Best Wishes

Jo6
Posted by

Hi

It is hard hearing that something is not curable. I've had a 'sad' couple of days. It seems to be every time I go for my tests every 3 weeks, on my week off chemo drug and everything hits me again! It's exhausting and I need some positive stories and I look on here for support from people who truly understand what you are feeling and going through. I went to the doctor with a sore what I thought was a pulled muscle under my ribs. I had a clear mammogram in Feb and breast care nurses were happy in March last year. I then felt a breast mass and went to my doctor twice in June with breast pain and an inverted nipple to be told that it was nothing to worry about- most likely hormonal and that cancer wasn't sore. I was happy and trusted the doctor (big mistake) and was away for most of the summer. I still wasn't happy mid August and went back to a different doctor and all urgent referrals went from there! I am so angry with the doctor given my mum and sister also had breast cancer and she knew this and I'm finding it very difficult to not think about what if. I am fairly confident the cancer hadn't spread from the breast to the bone in June as I wasn't sore in the places I am now. I feel the doctor made a huge mistake and I'm also angry at myself for trusting her! I now have cancer in a lot of bones and my life has just changed completely! I have supported my sister who is cancer free now through her cancer and I've lost my brother, my mum and my 14 month old godson in the space of two-three years and my family have been through enough! I'm finding it really hard to stay positive and although I have family around me, I feel very alone! These forums do help. I really hope we can support each other. My treatment is going well so far and remember although it is incurable... it is treatable and new drugs are coming out all the time! I hope everything goes well and you get positive news. Xx

Jo x
wino
Posted by

Hi Jo6                                                                                                                                                                                                                                                  I also look on here for positive stories, and you are right a great place for support from people who know how it really feels our families and friends are great but they only want to comfort you and make things better, but sometimes you need a chat with someone who is walking in your shoes.Reading your story i can fully understand where you are coming from in connection to the doctors and i would feel angry too,and your trust in the system must be right down there,especially with your family history. You have had a terrible 2/3 years and having to deal with all this now must be so so stressful. I know the feeling of being alone, when you wake up in the night  ( to go to the loo in my case ) and then all these thought come into your head , and they are not good ones as we both know,it hard very hard, i am usually a positive person but all i have done these last few day is cry i will have to stop or nobody will want to be with me ha ha. Its good to hear your treatment is going well so far and i hope you keep well,i would like it too if we can support each other, and thank you for the best wishes hopefully scan next week.I came on line and read your message then lost it so its take 10 minutes to find it again i don,t find this site easy to use but will practice more so please be patient ha ha best wishes try to stay positiveXx

Ruby2016
Posted by

Hi Wino,

Firstly I apologise for being a bit late in saying ‘hello’.

I can only imagine the shock you felt when a pulled muscle and pain by your rib has turned into something else.  I thought I was going to get some injections from the Haematology department to boost my dodgy blood count and solve my chronic exhaustion.  Even when they brought the follow-up appointment (after a bone marrow biopsy) forward by a week, I still didn’t click that anything was amiss.  I was diagnosed with Secondary Breast Cancer in the bones 3 months’ ago.  I’ve had a ct scan and a bone scan and according to my oncologist they are not much help (or words to that effect!) although it does show in my right rib.  I’ve had aches and pains for years and thought it was arthritis. To complicate matters, I am adopted and don’t have any family medical history.

Any questions, please ask on here or message me or any of the lovely lovely and supportive women on here. 

Very best wishes to you

xxxxxxxxx

Ruby2016
Posted by

Hi Jo6,

I don’t want to click ‘like’ as that seems wrong to me.  I am sending you a virtual hug as you more than deserve it.

xxxxxxxxx

Jo6
Posted by

Hi Wino

I also find it very difficult to navigate this site and I keep getting lost too! Takes me ages and then for some reason it keeps crashing and telling me I've lost connection.

I know how you feel. After my week of tests and appointments I've found it very difficult to sleep and to motivate myself and have watched 4 movies on my iPad the last two nights in the middle of the night and have tried to hide the fact that I can't hold it together and try to cry when no one is looking as I find my family and friends struggle with me becoming emotional as they don't know how to help and it distresses them particularly after what we have gone through as a family over the last few years! I'm a bit out of routine and I'm bored having stopped work to see where I am with this. I'm scared my body now wants to wake at 4am every morning so I really don't want to make that routine! I am also usually a positive person and I'm normally the one there for others so I'm really struggling with the fact that I need others to help me this time and I want to be independent. I'm trying really hard but find it so difficult and I'm currently struggling to get out of bed- mainly because I've nothing to do and think what's the point! I lived and worked away from home so my job and my friends are not near by which im struggling with! I would like to return to work but that means moving away and I live on my own so I'm in a bit of a pickle over what to do which is distressing me to no end! I'm on my 5th cycle of Palbociclib and my next scan is the end of March so I will know more then!

Keeping you in my thoughts for good news! Xx

Jo x
Dreamthief
Posted by

Hi 

Re; navigating the site.

If you have a look at the the discussion tools box on the right hand side you will see one option "save this in my favourites"  every discussion you select this on will save it under the Favourites tab on your profile page.

Makes threads with your previous replies or those of interest much easier to find 

Hope this helps you from getting lost, G n' J

Jo6
Posted by

Hi Ruby2016

Thank you for your message. It must be very difficult not knowing your family history although I knew mine and went to yearly checks because of it and I still have the diagnosis after being so careful and I was refused genetic testing as I didn't have enough people in my close family diagnosed. The test came back negative for the gene strands they have identified but they are not ruling out that it could be other genetic strands they have yet to identify!

I was diagnosed 3-4 months ago-diagnosed with breast and bone in same couple of weeks and my aches and pains I put down to me rowing for years! It is very difficult to know and you do genuinely think they are just normal aches and pains and because I feel I look a bit younger than my age I feel doctors just assumed I was fine and over exaggerating hence the delay in my diagnosis!

Stay strong! X

Jo x
Jo6
Posted by

Thank you dreamthief x

Jo x
Daylightdancer666
Posted by

Hi wino 

I can really understand the frustration and anger you have with the doctor thinking tjst you thought was pulled muscle under your ribb and it was cancer I really can relate i had back pain for over two years whuch we thought was due ny job as carer my osrenrd paid fortune in private physio as doctors palmed me with off naproxin and whrn I coughed snd in got lump on my breast my physio was pulled muscle. It was only wjen i showed ny sister lump in june lsst year she is a doctor told me get appointment straight away. It turned out i was few days from being paralysed because od spinal compression as had crushed verrbae and cancer sll in my bones. I didn't exoect sll this ar sged 32

Fast foreard today ive had radiotherapy oj lumber thorasic skull neck femur which shrunk cancer considerably asnwell ss my treatment lethzole shrunk tumours. However I'm dealing with now mymmums csncer diagnosis wnd treatment =( so on highest dose of antidepressants seeing physcolgist as you say dark days more do nights for me.

Im also seeing suregon regarding crushed verrbae and pain in t zone or back we tried radiotherapy but didnt work but consultant was honest didnt think it would.

Anyway that's me rambling 

Love hugs for all 

Love hugs and cat paws 
Cazzy xxx