Hi, I wanted to start a new thread for those of us who have pelvic mets. I think we have particular problems with mobility and with trying to find the right exercise which we CAN take part in. I am 41 years old with extensive pelvic mets especially in left hip and neck for femur. I can walk with one crutch. I completed radiotherapy in January 2012. I am much more mobile than I was, but need advice about what I can do to help myself. I can walk, but not very far without getting very very sore, even with pain relief! Any ideas or inspiration will be very welcome. I hope you will join in and we can share knowledge and experiences! Xxxxx Katy
Hi Katy!
I have/had pelvic mets, diagnosed in 2008. I had radiotherapy which greatly improved my mobility at that point, albeit still with crutches. In 2009 I had to have it replaced due to a fracture, so presumably now the hip mets have all been cut out? I was told at diagnosis that I was at ‘high risk of fracture’ and my orthopedic surgeon was really playing a waiting game with my hip - he was hoping the bone would heal sufficiently on its own so that a replacement wouldn’t be necessary. Even before the replacement I applied for and was awarded DLA mobility, higher rate, as I couldn’t walk except with crutches, as I’ve said, and with pain, and the risk of fracture was so high. Since the replacment, I’ve got nerve damage from the operation which has left me stiff (the radiotherapy ditto) and several mets to the lumbar spine which cause quite a bit of pain so I’ve kept the DLA. Have you applied for this? Disability badge a real boon, I have to say, even if I often feel such a fraud for using it! Have to say though that the hip replacement was a real success and the hip per se is now the absolute least of my troubles. I barely think about it.
You mentioned exercise - my orthopedic surgeon said it would be ok for me to swim, which I do occasionally but not as much as I should (memo to self!), and I try to walk my daughter to school on my better days. I have a secret fantasy of being able to get on a horse (I used to ride as a child and now my daughter is riding it’s left me very wistful) but really and truly I know that won’t happen.
Do you have mets elsewhere, either in the bone or beyond? Mine are just bone mets, thankfully. I’m on Herceptin, which is really working for me, although I’ve been having new problems with my left shoulder for the last six months. I’m 46 by the way.
Something else I would say to you is regarding pain relief. It took me about three years to work my way up to a very modest dose of MST (morphine sulphate slow release) tablets, which for the most part now do the trick pain relief wise. I resisted and resisted, but the lesser pain relief pills just weren’t strong enough. So if you’re in pain and your medication isn’t controlling it, don’t be afraid to try something stronger. Obviously the MST has stronger side effects, but that’s another issue …! I think I take pills to counter the pills to counter the pills …
Best wishes.
Alison
Hi Katy
I too had extensive mets in hip joint and pelvis - rads really helped my pain at the time of diagnosis in 2006 and bondronat since then seems to have helped too.
I took up yoga - I found that strengthening my muscles and improving flexibility helped tremendously - also the whole relaxation thing did wonders for me.
As Alison says don’t be afraid of pain killers when you need them either - bone pain can be really debilitating.
Best wishes
Smartie x
I also have my pelvis/hips lower spine incl. sacroiliac joints messed up by tumours. In the early days back in 2002 I had rads to the left hip then about 3 years ago the right hip & lower spine. Some helped with pain and some didn’t. But I have found over the past 3 years that I have need a lot of heavy duty meds. I was one of those that hated the thought of pills but pain really does get debillitating when you have it day upon day. Even now I haven’t got it completely right but I have tried so many different combinations and what I am on now agrees best with me. I use fentanyl patches from 150 to 200 depending on how bad. The actiq fentanyl lozenges for breakthru pain and pregabalin. That mix can make me quite sleepy so when I have to be more awake e.g. doing the business accounts! or driving I do use dexamfetamines. I only need one but have been told I can use 2-3 a day. I prefer to reduce the meds a bit. You can’t win really but I am very fortunate that I suffer very few side effects from it all.
As for exercise - I don’t! apart from the general sort of living stuff - housework or gentle bit of gardening for pleasure, and trimming the bonsais. I used to swim but started to find it too painful on my neck (bad habits with swimming style) so I gave up. I find with any sort of exercise so many bits of me protested. I did find for a while I used go about with a walking stick because I didnt trust my hip plus I struggled with quite severe foot cramps and was scared of falling and I also had a small mobility scooter which helped if we wanted to go out and it involved a lot of walking.
Dawn
xx
I have L hip, both femurs, and sacroiliac mets, and though I don’t need crutches etc. my main exercise was walking… until my feet protested because of the capecitabine for liver mets 
Non-swimmer, so I wish there was some way to get exercise while avoiding foot problems, it would help me with weight control too!
Wow, thanks everyone for your responses. Im really interested in what you have been doing.
My mets are just bone but ribs, pelvis and spine. I do get a fair bit of pain, but its so much better than it was. Now i really ache and twinge and get really fatigued. I’m going to see a physio soon I hope and I will post what she suggests. I do find though, like Dawn, that my body protests when I do much. I think having foot pain must be miserable, does it wear off ? I’m just going to have to have some self control with the choccy! Difficult when you feel like ‘what the hell’!! Any advice regarding controlling weight when physically disabled very much appreciated. I have recently got my DLA and will hopefully get my automatic car next week. Haven’t been able to drive as can’t change gear on my old car so I’m so excited to do the school run! Xxxxxx to you all xxxx
Hi ladies,
Just wondering for those with bony hip mets, what were your first symptoms?
I am nearly 18 months since dx BC grade 3, ER+ve, HER2+++, had WLE/ax cl/chemo/rads and just finished 12 months herceptin.
Last Nov 2011, had a clear bone scan (done for back pain).
In January 2012 I first noticed mild aching in my laft hip. Throughout March, it’s becoming more persistent and is making me limp at times, my left leg feels heavy and sometimes I’m dragging it behind. At night I’m getting gyp from it, sometimes no position will feel comfy in bed and I’m tossing and turning.
I am sitting still and it hurts now, but other days it doesnt cause too much bother, and actually seems less painful if I’m being more active. It’s like a niggling toothache.
So I’d like to know if this is typical of bone mets pain, it seems more like arthritic pain, perhaps? I am 39 yrs old, I’m also on tamoxifen, which I know causes joint pains, but no other joint is affected.
Paracetamol & ibuprofen do help.
I’m due to see onc in 3 weeks, I don’t want to have any unnecessary scans, and I feel its too soon to repeat a bone scan.
Thanks,
Truddles
Strange how this subject has come up. I spent 5 hours in A&E on Friday, because of excruciating hip pain. X-ray showed a suspicious area in the neck of the femur. They said it looked sclerotic, which is what it looks like, when it is an old met that has healed. This is what they think it is and they think that the treatment that I’ve had, has dealt with it. I’ve got mets in 3 places in my spine.
Anyway, it is still really painful. They said to continue taking the pain killers (which don’t seem to be having much effect) and that my Oncologist will be in touch.
What I want to know, is why it’s so painful, if it’s a healed met? And you know what, I forgot to ask!!! How dumb is that?! So that’s what I will be asking tomorrow…if I remember! Maybe it’s the tablets…?!
Isobel
Hi all
All my treatment has finished, on tamoxi having mammogram 4th apr, then will be seen yearly. my BC was on left side, over the last few months have been getting pain in pelvis, but its only there when i want to cross my left leg over my right, must say its very painful, never thought to say anything to any of the medical team, but reading this subject may be i should, Does it start off this slowly.
thanks all xxxxx
Hi truddles and gardenparty
don’t want to scare you unnecessarily but the pain you describe is very similar to pain i experienced which did turn out to be bone mets. truddles, what you say about limping, your leg feeling heavy and you sometimes dragging it behind, that was exactly how it was for me, as if i couldn’t get my leg to do what my brain wanted it to do. the pain came and went over several months, which meant that i was concerned when i had the pain but then managed to forget about it when i didn’t (too busy with a barely one year old to deal with). but it was bad enough for me at times to have to go up and down stairs on my bottom rather than put any weight on my leg! in the end the pain came and didn’t ever go away, just got progressively worse. for reasons i won’t go into it took about seven months for my mets to be diagnosed, by which time the hip was very fragile (it did subsequently fracture and i’ve had a hip replacement).
don’t take a recent clear scan as evidence that all is ok. i had an xray (i know not quite the same) in the jan which was declared to be clear - which put me off the scent - but when the same xray was looked at again only five months later they decided that there was something suspicious there after all and a full bone scan confirmed mets in several spots.
my advice would be to let your medical team know what you’re experiencing asap, remind them of your bc diagnosis, and ask for a full body bone scan, again asap. only then will it be confirmed either yes or no. if no, brilliant, but if yes, better to know sooner rather than later so less damage is done to your bones and treatment can begin.
good luck, both of you.
Alison x
Hi Alison
thanks for your feedback.
I have not be diagnosed with any secondaries,thank god, but I was going through the forums and this subject ( pelvic) sounded like something I am experiencing.
I have no idea what ‘bone mets’ means and why would I need to mention my BC?
Is this completely un-related to BC?
Sorry for sounding thick but I need this in laymans terms, I thought I was doing ok ( well , as ok as I can) but the pain in my pelvis/hip sounds like something you experienced and I feel I need to know more.
My first yearly review is in a couple of weeks , it would be good to get some kind of understanding so I can speak to the surgeon about this.or do I need to wait until I see the Onc Doctor?
any advice would be appreciated
thanks
garden party
x
Hi garden party
It may help to talk through your queries with one of our helpliners, you are welcome to call on 0808 800 6000 and our specialist nurses can offer you further information and support, the lines are open 9-5 weekdays and 9-2 Saturdays
Take care
Lucy
Alison, Thankyou! so much for your comprehensive post, I am scared of facing this but you’ve answered the question in black and white for me, and I know I’ve got to stop burying my head in the sand.
Garden party, mets is short for ‘metastases’ which basically means spread of the (breast) cancer to other parts of the body, such as bones/lymph nodes/brain/liver etc, also called ‘secondaries’
Love to you all for your support,
Truddles
Hi everyone. It’s so good to share our stories. I had my primary bc diagnosed in 2006 and had surgery chemo and rads. Everything was peachy until August 2011 when I slipped in the campsite showwers! Before then I was running three times a week. I had a bit of backache( but I’m a nurse so expected a little bit, and in my 40’s), and I sometimes had a bit of a limp, which was off and on. After the injury on holiday I was diagnosed with sciatica! It took until dec 23rd to and bone scan MRI and ct to get my diagnoses. My mets are hip, femur, sternum and spine. This was after demanding MRI from my gp, which she did because of my bc history. All my mammograms etc have been fine. I was in excruciating pain by then and could hardly get up stairs or turn over in bed. I had crutches too. Ive had rads, zometa monthly, zoladex and Letrozole. I’m on all sorts of pain relief. Now I can walk with one crutch and my pain is so much less. The treatment has really helped so far. I urge anyone with bc history to get any strange twinge checked out and never feel silly doing so! Crap happens to nice people, and it’s not fair. We don’t like to make a fuss, but we have to to get good care, to get checked out.
I’ve now seen my physio again and she has said that because I can’t walk far, swimming would be good. She says I should start with 15 mins of just straight kicking with a float up and down the pool, mixed in with a bit of walking in the water to build up the muscles around the bone which helps to support them and prevent injuries. I am going to start like this. I might try breast stroke after a while too, but she says to be guided by how it feels too. I hope this is useful for others.
I’ve been struggling a bit with fatigue, so any advice would be great!
Truddies, good luck. And alison, thinking of you too. Horrid times, but when you get the right treatment things do look brighter. I’m seeing a top man tomorrow. If he tells me anything mind blowing I will share it with you all!
Xxxx to all. Katy xx