I had my appointment with the oncology department yesterday and it has been confirmed that I do have bone mets in my hip - a large blackened area on the scan right across the ‘right interior iliac blade’( - I think that that’s what he said!) and 2 hot spots, one on the back of my neck and one in my shoulder. These 2 haven’t been confirmed, as the are both common arthritis sites, apparently, and I didn’t feel any pain when he pressed them. They will watch them closely and monitor any progress, but are leaving these alone for now. He is going to arrange radiotherapy for a week to relieve the pain in my hip. He isn’t going to do chemo at this point, he wants to control the local symptoms as much as possible by hormonal drugs.
I am going back next Wednesday to discuss medication as he wants me to go for further tests (CT scans I think he said) to detect any possible disease anywhere else and is particularly looking at my kidney function (I have had problems in the past) to determine ‘how far they can be pushed’ with medication.
Does this ‘treatment plan’ fit with your experiences? I was surprised (but pleased) not to be facing the prospect of chemo (yet anyway!). I feel very well and am very controlled and rational when discussing treatments. However any emotional aspects about leaving my husband, teenage son and Mum behind are very hard for me to cope with at the moment.
I went into work (I am a teacher) and handed over any management/subject leadership responsibilities and will stop being a perfectionist at work. I have informed everyone that I will leave work at 5 everynight and will not take anything home with me. My free time is now to be spent (even Sunday evenings) doing what I want to do with my family! I want to carry on being as normal as is possible and was wondering what level of work/scaling down others find themselves doing since having a secondary diagnosis? Has it changed your work/life balance? I would like to go part time but my husband isn’t earning enough to make this viable at the moment.
I look forward to hearing your responses, your replies last week really helped me and although we are all reluctantly in this section of the forum, I look forward to ‘meeting’ and sharing experiences with you all.
Hello Nicky, I’m so sorry to hear you have bone mets…it can be hard to get your head round a secondaries diagnosis. I just went with the flow at first, each day was different. I had better days, bad days at first. I think I was in shock for a while but, over time, it’s surprising how much ‘normal’ creeps back into your life, your routine. It’s a new normal but life really does go on. After my breast cancer and bone mets diagnosis (I was diagnosed with both at the same time) I went on to to have 5 years of (effective, no active cancer) hormonal treatments.
I gave up a part time job in further education through choice and seven years on from diagnosis life is in many ways incredibly unchanged…yes I have the hospital appointments but in between I have a great life…Good Luck, I hope you have some FANTASTIC responses to hormonal treatments…this forum is always welcoming and supportive…xx
Hello Nicky, I have been dealing with bone mets for 11 years and was first diagnosed witrh BC 21 years ago. Regarding giving up work or working part time…do you know that you can apply for Disability Living Allowance and you can still work if you are entitled to it. I decided to give up work years ago…the best decision for me…and I get DLA. I spoke to another lady on this site months ago who was working as a nurse and she was reluctant to apply for DLA. But she did and now she gets DLA and still goes to work but she works less hours. I have bone mets in my spine, ribs thorax and pelvis and yet I continue to lead a happy life…something I thought would not happen. I have had rariotherapy on a few occasions and it has helped with the pain and I also have several different painkillers that I take daily and they have made a huge difference in pain management.I have had to adjust a few things and I have the support of a wonderful husband who helps me both mentally and physically now. Send me a private message at any time if you want to ask anything. I wish you well and hope your treatment goes well. Love Val
so sorry to hear that bone mets has been confirmed. My experience I suppose is similar to val’s. Originally dx 21 years ago, then very extensive bone mets in 2002. At first of course the shock was difficult to cope with and I thought maybe I hadn’t got long, but that was 8 yrs ago now. I have like val had various bits of rads to painful areas but generally for 6 years I haven’t had to make much in the way of adjustments. We have our own business and I was able to continue doing as much work as I wanted. Latterly, the last 2 years pain has become more of a problem and I have had to resort to pain meds to make life a bit more comfortable.
My treatment has been bisphosphonates, at first pamidronate, and just recently changed to zoledronic acid. I am also her2+++ so have been on herceptin as well.
I also went for DLA - and you should be able to get this under Special Rules DS1500 and a macmillan nurse can help with getting that completed. You are also welcome to ask here, or pm with any other questions you might have. Between us all I think we have plenty of experience we can share
Hi Nicky, welcome to the club no-one wants to join - really sorry to hear your news, you’ll find everyone on this section of the forum really helpful and supportive though.
I was dx’ed with bone mets (upper and lower spine, ribs and shoulder) from the word go in December 2008. It has taken me a long time to get my head around things, but as others have said it does get easier in time and you do learn to live with the new normal. I started off on Tamoxifen which didn’t work at all, so my onc put me on a course of chemo which worked wonders. Since then I’ve also had five weeks radiotherapy to the breast and underarm etc. I’m now on Arimidex and Zoladex, together with four-weekly Pamidronate for my bones.
Regarding work, I work from home for myself but it involves sitting at the computer for several hours at a time. Some days I find I can manage a very full day, other days less so, but on the whole I’m pain-free and do work pretty much full-time. I suppose I’m lucky in that I can pick my own hours. I think your approach to your job sounds very sensible, but don’t go overdoing things, if you’re having a bad few days or whatever, then get your GP to sign you off for a while. It’s been hard for me to learn to pace myself as I’ve always tended to overwork, but I’m getting better at relaxing!
I also have claimed DLA under the special rules, my breast care nurse sorted it all out for me and it means an extra £122 per week which might make a small difference to your situation …
Hi Nicky, sorry to hear about your diagnosis of bone mets. I have found the ladies with bone mets to be very supportive and if I ever get all doom and gloom, I always re-read the posts. As you can see there are ladies here that have had bone mets for a long time and are still getting the most they can out of life.
My bone mets were diagnosed in June 2009, three areas in the spine and one rib. I have only been treated with hormones and one session of radiotherapy so far. Most of the ladies seem to have been given bisphosphonates. I have been questioning my Onc about why I haven’t been given them and was told that the effects on the kidneys have to be considered. As I now have pain in my hip, this is being reviewed. I had a blood test last week to check my kidney function and tumour markers. (Not had that done before) If my kidneys are alright then I will be offered the bisphosphonates.
I don’t go to work but have three boys to look after on my own. Since bone mets, things haven’t really changed much. I have learnt to rest when I am tired and we seem to manage alright.
I applied for DLA under the special rules, the blue badge has been a great help for parking near shops and for hospital appointments. It is worth applying for.
Nicky really sorry to hear your latest news… was sooooo hoping for a better outcome… sending love and hugs to get you through this.
I’m sorry to read of your recent diagnosis. As well as the support you are receiving from the other users you may find it useful to order the BCC secondary resources pack. It has information on diagnosis and different treatments available. We also have a fact sheet on secondaries in the bone. Below are both links where you can either order or read on line this information.
I hope this is helpful.
Sam (BCC Facilitator)
Just to add to all the other lovely ladies replies that I am also sorry to hear you have had the suspected bone mets confirmed. As with you I have one large area on my hip and a small hotspot on my spine. The hip I can feel from time to time, the spine one I had to ask where it was after 6 months or so as I had no idea and no pain. I was in your position 2 years ago and understand how you feel (as we all do) but you do eventually adjust. I have been lucky to not need pain relief so far so I expect that is one of the main things to get sorted if you are suffering from it. Otherwise the treatment plan sounds pretty standard to me. I did have chemo but this was also to do with a local recurrence and I’ve since been on hormone treatments (A I’s) that have kept things stable, as well as bisphos. Once I got my head round my dx I returned to my part time work which involves sitting at a pc, like Lesley. This is OK and I just seem to get the usual aches from sitting badly at work plus a few extra thrown in due to my total lack of hormones now I decided that still working was right for me but I am lucky that it is part time and only 3, very flexible, days a week. I guess we all find what’s right for us and certainly telling your school that you are cutting back on all the extra responsibilities is a good start. DLA is definitely worth it and don’t be put off with the ‘special rules’ form - it says you only have an expected 6 months to live but I argued with my reluctant GP that if he can guarantee I’ll still be here in 6 mths then don’t sign it - of course he had to sign it! Good luck with your treatment and adjusting to this new ‘normal’ as we seem to call it. I certainly get on with everything I used to and now only go to the hospital every 6 months for checkups, scans etc so it doesn’t interfere with what else I do. In between scans when I know I’ve had good results I plan extra things to do like mini breaks, holidays etc to make the most of the next 6 months.
Take care and continue to join in with these forums they really are such a help, as I have found.
Have been following your posts and was hoping for better news… Sorry that your bone mets have been confirmed.
I was dx with bone mets last June with primary. Chemo started in July and Zometa was added in Aug (and still on it now). When 6 months of chemo was finished (it worked really well), I was switched to Tamoxifen and that didn’t work at all. Liver mets dx a few weeks ago and now back on chemo… But no progression in bone, so Zometa did a good job in holding up the bone mets.
As for work, I was given a whole year sick leave with full pay! - I know, that’s very generous of my boss. I was planning to go back to work at least part time from home when I was on Tamoxifen, but then came the liver mets dx, so I’m not too sure what I’m going to do now. I need to have a good discussion with my boss before July (what’s when my sick leave ends officially). Definitely won’t be able to manage full time when on chemo etc. Also facing the prospect of renewing my visa in Nov (I’m from another country, so don’t think DLA will apply to me - please correct me if I’m wrong!) and without a full time job, that’s not going to be easy. Sorry for going off on a tangent. It’s been playing on my mind for a while. Anyway, not being able to stay in the UK isn’t the end of the world - that’s the least of my worries for now!
Take care xx
Thank you again for your messages they have helped me so much on 2 levels:-
Firstly emotionally, inspiring stories are exactly what I need now and all of you have really lifted my spirits and are enabling me to face this uncertainty with new found optimism - so I am so grateful for that.
Secondly on a practical level, my colleagues at work are fantastic so caring and supportive and I will need their support if I attempt to keep up ‘my level of normality’ by working. However by reading your posts I am beginning to see light at the end of the tunnel regarding part-time work and the possibility of time for myself.
I have unearthed a ‘critical illness policy’ that I took out 10 years ago (unfortunately when we extended and remortgaged I didn’t update it, so it would only cover about a third of our current mortgage/level of debt, but it would reduce monthly outgoings if I was successful) and if I was able to claim DLA as well, I might be able to survive financially at least! My Mum is understandably very keen to spend time with me while she can, as is my husband
If I was successful in claiming this money I would be able to have the free time that I will be denied later in life (- I am 21 years away from my pension and possible retirement - surely nobody can inspire me enough to believe that this is possible???)
Your responses will spur me on to contact somebody to find out about claiming it.
Thank you Nicky
Hi again Nicky, I believe, as Dawn has mentioned you should now automatically qualify for the special rules DLA.
Re the 20 years, I believe Penny Brohn, one of the founders of the Bristol, now Penny Brohn Centre lived with bone mets for 20 years. I have been told by one of my Onc doctors patients living for 14-15 years with bone mets is not at all unusual. One lady I knew lived for 10 years (and very little of her treatment was ever effective) but for many of those ten years she had a good quality of life. I was told this week I still have no active cancer…I’m seven years down the line.
Have you seen these inspiring stories from some Australian women living full lives with mets?
For m1yu…Hi…do apply for DLA…I hope you may well be eligible…x
Have a lovely l-o-n-g weekend everyone…xx