Breast Cancer Now Forum

Hi Im in similar position, but my liver mets have been picked up on my CT scan, first after diagnosis of bone mets in hip and and only 5 weeks after starting Palbociclib.  I had no idea pain in right arm/shoulder could indicate this!!!   I too am very very scared, im getting a further scan on 3rd August, having given Palbociclib 3 full cycles to have hopefully shown some stability, however im doubting this as I don’t feel so good now (however praying this is my extreme anxiety!) I really hope things work out for you and you are spared this diagnosis. hugs xx   ... View more

Hi I’m in a similar position, worked hard after primary diagnosis in 2017 to lose chemo kilos and regain fitness, only just started to get to a reasonable weight and good level of fitness (able to walk 40 mins twice a day), when I started to get hip/back/groin pain which turned out to be mets in right hip (Dec 2020) Back to pilling on pounds due to being immobile and in pain plus eating wrong things due to sore mouth/taste changes with Palbociclib.  I’m getting referred for physio so hoping that helps and gives me some direction on what to do. Totally agree, people think we have more to worry about than our weight (and we do) and also that cancer patients always lose weight!  we are all ( I know I am) far too hard on ourselves!   sending huge hugs S x  ... View more

Well done and what a marvellous post to read, especially for a newbie like me (diagnosed dec 20) and today frightened I won’t see another Mother’s Day! I totally agree NHS is marvellous without it I doubt I would have survived my primary diagnosis in June 2017 stage 3 HER2 Er+ . Unfortunately now back in my hip still ER+ but now HER2-  on fulverstrant and about to start palbocicolb after I have hip replacement surgery in 2 weeks to remove as much of mets as they can.   My oncologist tells me ladies now surviving into double figures but not sure if I believed it. Blondie stay well, sending hugs  Sib xxx ... View more

Thank you so much for your reply. second dose of fulvestrant next week so will see how I am. x ... View more

Just saw this post on PIP, and was interested as I am recently diagnosed with bone mets in right hip, my mobility is greatly reduced to extent on 2 occasions in last 4 weeks we have been unable to get me upstairs to bed due to pain/immobility and have had to sleep on sofa!  Phoned Macmillan today and they weren’t totally convinced I would get PIP. My husband, who is self employed, has been unable to work for last month as I am just not mobile enough most of time to be left alone. I’m getting full hip replacement (plus more) with minimum 12 weeks recovery soon to try to increase my mobility.  Is it really worth even trying to claim this?? How bad do you have to be? I’m totally furious I have worked all my life and can’t understand why I don’t seem to be able to get some financial assistance in my hour of need,    ... View more

Hi Sam Firstly big hugs. I too am recently diagnosed with bone mets (Dec 2019) .  I was initially diagnosed June 2017 at 50  with stage 3 ER & HER 2 positive breast cancer, after my younger sister was diagnosed a week later with breast cancer, it was discovered I had BRACA2 gene ( which we had no idea about as no breast cancer history we could find)  I had double mastectomy, diep reconstruction, lots of chemo, as I had issues with reactions to a few, plus Herceptin zometa, and Letrozole.  Treatment took it out of me but I really felt I was getting healthier and stronger at turn of last year.  Was walking dog much more during lockdown and started getting back/groin pain. GP put it down to age, working from home, muscle memory loss due to previous illness etc. Painkillers didn’t help and I was often sobbing in pain. Fast forward paid for MRI and CT scan to discover Mets in right hip (CT also shows something on liver but told it’s benign, common and looks old, but needs to be watched) . Treatment has been slow start for me, had bone biopsy, which should cancer is still ER + , still waiting on HER2 results however this week I had a booster does of radiotherapy and steroids, which has helped my pain.  Start fulvestrant and zometa on Monday and seeing Orthopaedic surgeon on Thursday, with a possiblity of getting full right hip replacement to improve my pain and mobility.  I too was/am devastated, really thought I could start to park the big C in a box in my mind, hopefully never to be opened. My 2 sons are older and left home and with lockdown/Christmas, I haven’t yet given them my full news. They know I have hip issues which are being investigated but time is coming to break the news, but not sure how you do this over telephone/zoom when you can’t cuddle and reassure them. my husband is struggling and angry ( we are 2nd marriage and not yet 8 years) he is ex army and finding it very difficult to know what to do, he’s self employed and works away from home but has been unable to work since my diagnosis as I have been virtually housebound, so we need to get something sorted.  I’m also a ‘bad’ patient fiercely independent, hate accepting/asking for help, something I fear I may have to do more in the future. I have signed up for 2 research trials with my hospital, which is giving me something positive to focus on and my Oncologist has said ‘many woman live well in to double figures after a diagnosis like mine, but the disease is unpredictable’. I wish you well and hope you get support/help you need. Unfortunately I’m too early in my journey to help I think but as we are both newbies to the club nobody wants to join I thought I would reach out 💕 Shirley xx ... View more

Hi Gillyflower, thanks for your reply and kind words, they really mean alot. it’s so true we are in a dire situation, every time I hear them say on TV ‘the nhs is still open for other conditions’ I scream , because it is so difficult to get any kind on appointments/investigations at the moment. I just feel any woman with pain/symptoms which don’t improve, who has had a primary breast cancer diagnosis should be referred straight back to a specialist not left for things to get worse and spread . I knew something was badly wrong and should have been listened to.  i know I’m ‘lucky’ as at moment I only have ‘low volume’ secondary and it is only in my hip but during my bad moments this is little comfort.  Sib  xx       ... View more

Hi Amanda. sending a huge hug. I too have recently been diagnosed with secondary breast cancer in my right hip and very worryingly I too struggled to get diagnosed and be taken seriously about the pain I was in! This is a real problem it seems. It appears if blood tests come back ok (as mine did) and X-ray is ok as mine did , pain is put down to age (I’m 54) working from home, poor posture or Arthritis.  I too was sobbing in pain, unable to walk and begging for help and  I too did more damage and caused myself more pain by doing physio ( not to the extent you have) and had to go privately to see orthopaedic consultant (as I was told it was probably 6months waiting time on NHS) when consultant saw me he told me immediately I didn’t have arthritis and needed urgent MRI scan (again paid for privately due to long wait on NHS) This scan showed tumour on my right hip, orthopaedic consultant advised me to get back in touch with my original NHS cancer team as I need CT scan and bone scan. Bone scan was done on NHS but again I couldn’t be offered a CT scan before New Year on NHS (this was 9th December ) so I paid again for CT scan. The delays have been impossible to bear, I felt like I was being left to die with no treatment!  I had a bone biopsy on 12th January and only this week saw my oncologist, will be getting radiotherapy next week and fulvestrant week after with zometa. I have been told I may be eligible for hip replacement, to get me out of pain, but again this is likely to be private procedure. I had a long chat with my BCN yesterday and she agreed things hadn’t gone well for me and it was disappointing I had to get scans done privately but said ultimately it would have been same outcome if I had been seen sooner. I know the NHS is under pressure and I have nothing but admiration for them but everything seems to have taken a back place against Covid and there is simply not enough awareness of secondary breast cancer symptoms ! There seem to be far too many of us on here who struggled to get diagnosed. x ... View more

Hi,  I’m 54 just diagnosed with secondary bone mets in hip which is ER+ (still waiting on HER2 results but was positive previously) struggling to come to terms with diagnosis too. Was first diagnosed with breast cancer in 2017 had double mastectomy, chemotherapy and reconstruction with herceptin and Zometa. I’m just about to start radiotherapy and fulvestrant.  I still work full time ( though not furloughed) and have 2 sons, a husband  and a dog (I adore animals especially dogsI  I would be happy to chat with your Mum, (I don’t have Facebook either) by email, text etc in hope we could support each other. Please PM me if you want my email address. shirley x   ... View more

Thank you all for your support and replies, it’s very comforting. I’m still waiting for results of my CT scan done on Tuesday, to see if it has spread, best case scenario is it’s just in my hip. Been told my oncologist finished for Christmas holiday today so unclear where this leaves me as I’m totally hanging in limbo at moment.  wish you all well and sending hugs to you all    Shirley xxxx ... View more

Hi Jools, thank you so much for taking time to reply. I wish you well in your treatment, I’m sure we will chat again  shirley x ... View more

Thanks for your reply.  Waiting to hear if it’s spread is torture, my oncologist told me to go to my GP for morphine, but I’m not ready for that yet, to me that’s the beginning of the end. I’m currently on 500mg of naproxen twice a day topped up with Tramadol when desperate. I have never ever been so scared .  I do have specialist nurse but don’t like to keep bothering her and we really need to know now what we are fully dealing with before they can give me a plan  Shirley x ... View more

I had single mx with double diep reconstruction on 24th sept (1st mastectomy was july 2017) just over 2 weeks ago. I was terrified of operation and recovery time as i am fiercely independent . I was in hospital 6 days and physio made sure i was able to get up and do stairs etc before i got home, my husband took a week off work to look after me (he normally works away from home) but honestly it was no where near as bad as i feared, yes i was tired and needed naps (still do) but i have been able to do all my personal care myself and potter around house very well. I was out walking dog exactly 1 week after my op albeit a bit slow. District nurses are available to change dressings (hubby did this for me). I know everyone is different but i certainly (so far) have not found recovery as bad as i feared. Hope this helps. Sending a hug x ... View more

Good luck helenann, my immediate reconstruction site us right like you. Xxx ... View more

Hi Xela, fingers crossed you only need Tamoxifen. Read a few interesting comments regarding results, my biopsy and mastectomy/lymph results were back within 7 days (i live in Scotland) clearly huge differences in each region. I am expecting to be in hospital 8 days, 2 days in high dependency and further 5 to 6 on ward, will have 4 drains , 2 each side. Had a drain with first mastectomy so know how debilitating they are, but my main concern is the recovery from the diep on stomach and the pain. Used to have a high pain threshold but after 14 months of treatments i wince at the slightest thing. Good luck and hugs to all going through surgery this week. Xxx ... View more

Thanks Xela, first mastectomy was ok, also had lymph clearance, was in hospital 3 nights driving in 3 weeks and well enough for chemo to start after 4 weeks. But i think i was fitter then, chemo has taken a lot out of me and letrozole has given me painful joints so moving is already more difficult before tummy surgery. How is your recovery going? How long were you in hospital? X ... View more