Hi there
Just found out last week i have bone mets in my spine and hip, luckily nothing in my chest or liver. I go to see oncologist on friday was just wondering what other folks experiences of this are and what i should expect. I originally had a wide excision of breast lump and lymph clearance followed by chemo and radiotherapy in 2005.
Cheers.
Hi trish,
there are quite a lot of us here with bone mets so you will get lots of replies. Mine was dx in 2002 and was quite extensive - all areas of spine, skull, ribs, collarbone, both sides of pelvis, hip. I had quite a lot of pain initially, but after 3 lots of bisphosphonates at 3 weekly intervals things improved a lot. There are several types of bisphosphonates widely in use such as pamidronate & zometa which are infusions, and ibandronate which is a tablet form. If the pain is really bad from the bone mets then you may be offered radiotherapy to the area. This varies from 1 to 5 sessions and pain relief can take up to 3 weeks before you notice the benefit. You will need to be careful what you do because before treatment the bones that are damaged can be very fragile and there is the risk of fracture.
Good to hear that your other organs are clear, as bone mets today are considered very treatable - good luck for Friday. If you need to ask more questions you know we are all here for you.
dawnhc
Hi Trish
Welcome to the Dont Want To Be Here Club!!!
I was originally dx with BC at the age of 34 - WLE and lymph node clearance - CMF chemo and rads - 5 years of Tamoxifen.
At the age of 41, having just had my first baby last August, I was dx with bony mets - hip and spine and spot on rib.
I had 5 blasts of rads to hip and spine and was then started on Zoledronic Acid/Zometa Bisphosphonates - they also put me back on Tamoxifen (although they had said that it had failed me!) - along with Zoladex injections. I am ER+, PR+ and HER2-
The emotional rollercoaster just after dx was truly awful - still have bad days now.
I had repeat scans in January 2008, which had showed progression to other hip and other places in spine.
In April 2008, I had my ovaries out and have now been swapped to Arimidex.
Touching wood, I am doing ok - have recently had CT scan but havent had results yet.
This site is wonderful and its ladies are too. I really dont know what I’d have done without it/them. Lots of information to be had - DLA, Blue Badge etc etc
Ask any questions that you would like, someone always has good advice and past experiences iykwim
Take care
Anne xx
Dear All
I hope you don’t mind me intruding on your posts, I am so sorry to hear about your bone mets, you may be able to help me, I have had pain in my lower back and hip for a while now, it huirts if you put pressure on the bone, I am worried but I am seeing my oncologist tomorrow, what do you think she will do? I had BC in June 2006, lymph glands clear, chemotherapy and radiotherapy and now on tamoxifien.
Well wishes to you all.
Claire xx
Hi Trishg
Sounds a very similar story to me. 2ndary dx in April this year - hip 1 spot and a ‘possible’ small spot on spine, oh and a new lump in breast which is how it was discovered. I had 1st dx in Dec 03, WLE, lymph sampling (clear) 30 x rads, no chemo, Zoladex and Tamoxifen. Grade 2, Er+, PR+, HER2-.
I was absolutely devastated, as I’m sure you were/are as were all my family and friends. However this site has provided so much support, advice, questions to ask and hope that I feel so much more positive than I did.
It was suggested by my onc to have hormone therapy only but after some discussions I decided to have chemo 1st as, although this is not necessarily the standard treatment for bone mets, I felt I wanted a good flush out of the blood system as this is how it had spread. I am half way through 6 x FEC and have pamidronate at each session. I will start Femara after this (provided I’m pushed into the menopause, if not we will ‘deal’ with my ovaries) and then have 4 weekly pamidronate.
I have just had a ‘half way through chemo’ CT scan today and an ultrasound to the breast. The good news so far is the radiologist told me the breast lump had shrunk by over 50% already and to assume the area on my hip will have responded as well but I don’t find that out until my next onc appt next week.
Have a look through past threads about bone mets, including the archive files, there’s loads of info (and inspiration) which may help with your onc appt. Also please ask any questions you want - we really are a knowledgeable and supportive bunch 
Take care and hope appt goes well.
Nicky x
I think you are all very supportive and amazing people.
take care
Claire
Thanks for your replies, i’ve had a look back and found all the comments really reassuring, i had myself dead and buried but looks like i might be around for a while yet!
Claire good luck tomorrow. I just mentioned to the oncologist at a routine check up that i was having a bit pain in my hip which wasn’t really being controlled with brufen, paracetamol etc. She sent me for a bone scan, i was then sent for chest, pelvis and spine x-rays. I then had an MRI of pelvis and spine, i must be glowing in the dark by now i think, and finally a liver ultrasound which thankfully was fine. Think i’ve to have some radiotherapy, bisphosphonates and some injections to stop my ovaries from working. I was on tamoxifen as well which hasn’t done the trick so am being started on something else, i will find out on friday. Good luck tomorrow, let me know how you get on
Trish
Hi
I had DCIS and mastectomy/reconstruction 3 1/2 yrs ago then a lump was found in my lymph nodes & a small ‘deposit’ on my spine Dec 07. Since then I have had chemo - 6x FEC and surgery - ANC. In Aug will have radiotherapy 15 doses to gland area and 5 to spine. I am due a bone scan beg Aug so will see then what has changed.
I am on Tamoxifen & Bonefos (bisphosphonate in tablet form for 2 years)
Thanks for the info and I will read up on the archive bits.
am trying to keep my weight down and even looses some tht I gained while on chemo!
thanks - hope the appts go well
Jan
Hi
Well, I saw the oncologist and she has referred me for a bone scan and MRI (Are they the same thing?), I had bloods taken and X-rays of pelvis, hip and spine, i just have to wait now for other appointment coming through, hopefully it will be in the next week or so.
you are all amazing and so strong, keep it up and lots of love to you.
claire xx
Hi Claire
Good that you are getting some tests done, at least you’ll know if there’s a problem or not - hopefully not. I’ve not had an MRI scan but understand it covers all parts of the body including soft tissue whereas bone scan takes images of the bone structure. It may be worth posting another thread about MRI if you need more info, there’s lots of ladies on here who’ve had them. The bone scan involves having an injection a couple of hours before the scan, you’re then free to leave the hospital and return at the time they give you. Can’t remember if you undress for the scan but you lie on a bed and the scanner goes over you from head to toe. I had one (gamma ray?) that is like a large rectangular plate going over about 1cm from body and travels slowly over you. You have to be still but once it’s passed over that part of the body you can move it. Takes about 20 - 30 mins I think. Again for more info maybe post a thread or do a search on the scans and you can read previous comments.
Hope all goes well but I know it’s the waiting for results that is the difficult bit.
Take care
Nicky x
For bone tracer scan (and MRI, usually), no need to undress except must not be wearing anything metal.
Bone scan is q u i e t … MRI is NOISY!
As Nicky says, the MRI will pick up anything on soft tissue.
Let’s hope the scans are clear… remember, there are good treatments for bone secondaries (speaking from personal experience here) but I’ve heard of people with similar pain symptoms to yours, which were probably caused by radiotherapy. Hope this helps!
Dear All
Thanks very much for all of your feedback, I go for my scan on Wednesday and I get the results the following week. We foundout yesterday that my auntie has bone cancer now, she had breast cancer dx April 2005, had no glands involved and received chemo, rads and tamoxifen, they changed her on to Armidex but that has not agreed with her. This is all so frustrating, we are devasted by her news but I have told her that this forum shows positive results and that she will get through this once again.
I’ll keep you up to date.
Thanks and take care
Claire x
hello everyone
wondering if anyone can help. I have secondaries in my spine and hip. Have no back pain but my hip is absolutely killing me. Was supposed to meet friends for lunch today and have just attempted to walk to the bus stop and have had to come back home. So i have had a good cry to myself and am now drowning my sorrows with a G & T! I have started on bandronat and am starting zoladex injections next week. I’m waiting to have some radiotherapy which i believe should help the pain but the hospital said that might be a few weeks away yet. I’m taking diclofenac and cocodamol for pain just now but doesn’t seem to be doing much good. I think i have a high pain threshold as had my 2 kids with just gas and air. Has anyone else gone through the same thing and will the radiotherapy help, cant stand the thought of being stuck in the house till then.
Trish
Hi Trish,
It sounds as if we are in the same boat. I have had extensive bone mets for 6 years now in skull, ribs, collarbone, spine, pelvis/hip. Once treatment started with bisphosphonates (pamidronate) things started to improve and have been stable for a long time now. Recently I have been getting low back ache and pain in hip & thigh. Had xrays/bonescan/mri back in April and all still shows the mets are stable. The pain cleared up after few weeks on meds - just cocodamol and ibuprofen. But it came back a couple of weeks ago much worse - not quite like sciatica but very painful and am getting pins and needles and numbness in thigh. Have had another MRI and still the disease appears stable but as the onc says - with so much disease in my spine the slightest change will cause pain and may not show on scans. They seem fairly certain now there is pressure on a nerve in the lower spine and the pain is following the path of the nerve. I am off to the hospital later today to see the rads time and will probably now have radiotherapy to the lower spine.
I think you need to contact your oncology team now to tell them that the pain is a lot worse and see if you can get them to explore the radiotherapy option sooner rather than later. Otherwise you will need to step up your meds. I am now on MST tablets (morphine) with oromorph in between to top up if pain breaks through. Like you I would say I have a high pain threshhold and very rarely need pain meds. But I am quite prepared to admit defeat :). I was referred to a macmillan nurse back in April to help with pain control. That may well be worth asking about as well. They are so helpful. Hope you get sorted soon.
dawnhc
xxx
thanks dawn…didnt think about the macmillan nurse, my oncologist is very approachable so might get in touch with her first and see what she says. hope you get on ok today, isnt this sh— …trish
Hi Trish
I don’t know if this will help but my mum was diagnosed with bone mets in April. She was in so much pain she couldn’t walk but the radiotherapy has really helped and she’s getting around fine now. She’s also on Fentanyl patches for the pain which have worked well for her - no side effects at all. It was about six weeks after the radiotherapy that she started to feel the benefit.
I really hope you get sorted out soon.
Lynn x
Hi Lynn
Thanks for that, it is reassuring to know that the radiotherapy will help. I’m going back to my GP today to ask for stronger painkillers. I’m going on holiday in September so want it sorted by then, have contacted the breast nurse today to see if she can help get my radiotherapy brought forward.
Glad to hear your mum is fairly pain free now.
Trish x