Bone mets
Bone mets I have moved this post on behalf of Bevers to begin a new thread.
Kind regards
Forum Host
Breast Cancer Care
I was diagnosed in Jan 06 with advanced breast cancer with secondaries in my bones (spine) and liver. I’ve had a year of treatment and have just started my 3rd lot of chemo, as before I finish one lot of chemo the liver tumours start to progress. I have regular CT scans and the oncologist always tells me how the liver is doing. However, he completely ignores the bones, saying change is so slow there’s no point repeating a bone scan (first and only one was March 06).
I had a CT scan in November and asked to see a copy of the report. This said there was widespread boney disease in the spine, ribs and sternum! I asked the onc how long it had been there and why I hadn’t been told about it. He said it did show on the original scans but because the scan was not that reliable at showing rib/sternum disease he (and his learned colleagues) ignore it.
My onc seems happy to keep giving me biphosphonates but otherwise to not check on progress or otherwise of the bone disease.
Can this be right?? I’d love to hear from others with bone disease and how you’re being monitored and kept informed.
Bevers
Bevers monitored is a euphemism! My first 2 bonescans were requested by excellent surgeon. The first showed none , 2 years later they were there in force.
On discovering I had bone mets oncs sat on their hands and left me on GP’s prescription of Fosomax/Alendronic Acid- given because of Arimidex bone loss. Duly asked both oncs if I should have stronger or IV Bs. Got no help at all and zilch info. Idiot that I was I believed them.
8 months after 2nd bonescan noticed hip pain had spread to R pelvis all 3 bones, and took myself back to onc, having checked up about B’s myself, and twisted onc’s arm to get Pamidronate/Aredia IV. It was allowed that P IV MIGHT help [it has far better absorption rate] and was given pressing reasons why I wouldn’t want it! Was actually sent for an MRI, but this was for neuropathy. MRI showed pelvic bone pain was good indicator- mets had spread from hip to all over R pelvis.
So would advise anyone to pay attention to bone aches. Joint aches can be due to hormonals but bone aches don’t lie!
Feel bitter that casual oncs have let me in for a whole load of miz and suffering which was unnecessary. Stronger B’s straight away and an eye, or even an ear given to my symptoms, would have made my life a whole lot better.
Oddly chemo worked wonders on aching rib and sternum mets- but hip had presumably gone too far.
So check Bs online and if you get new aches ask for stronger. Also ask to see your bonescans/MRIs and don’t swallow that most of the black bits on bonescans are old damage because most probably they aren’t.
B’s are about all the treatment available for bone mets. If rightly prescribed improvement is possible or mets should be arrested. If the worst comes to the worst B’s slow bone mets down.
Oncs are a variable commodity. It may be that yours are good and do their best for you. You’ll find out whether they are to be trusted by experience. Just be watchful until you know what sort you’ve got. best wishes, dilly
hi Bevers
Sorry to hear of your problems.
I have been trying to think how to reply without it sounding frightening or blunt so hope it reads OK!!
I’ve bony mets in pelvis and spine plus lung, liver, lymph glands and probably skin ones as well so so understand your concerns and I’ve had 3 types of chemo in 18 months.
My 2nd bone scan when my hip was so painful I couldn’t walk or lift my leg didn’t show any met so even bone scans are not 100% reliable.
However, an xray 3 months later showed it in my hip as did the next CT scan and bone scan which showed the rest of the spread as well. Since my 3rd chemo, the CT scan showed that my bones were improving and healing. They and I didnot see the point of having another bone scan with more exposure to radiation when it could be seen on the CT…
I’m a bit unclear whether you are upset as you feel they have not told you the truth or whether you are worried about the bony spread.
I can undestand your feelings towards them about not telling you the extent of your bony spread and I would be as equally livid. They should have told you but if they are slow growing and not causing you to many problems I can see why they appear so unconcerned.
My understanding is that with bony mets, they give biphosphonates to build up the bone destroyed by the spread and some of the biphosphonates actually stop the tumour spreading and then offer rads if pain or instability is a prob. There is a lot of debate whether bony mets respond to chemo. In my case, my bony mets have responded to chemo but they were surprised by that. Since then I’ve had zometa and rads and now my bony mets are showing signs of healing so I feel very lucky. This was seen on CT. I’d had 3 bone scans in 18 months so was happy with the monitoring of my bony ones via CT at present.
I think why your oncs are not so concerned about the bony ones is that the bottom line is they do not kill you but make life very difficult and painful whereas your liver ones are going to be more of a worry to the oncs. Sorry -that sounds so blunt.
Are you hormone or hercpetin responsive? Often the change of hormones can slow bone spread down - I’m er neg but her2+++ so not that good on hormone drugs.
Which biphosponate are you on?
Does it appear to the oncs that your bony spread is improving or worsening? I would try to get them to firmly answer you about that as sometimes you need a change of biphos to get a result…
I would ask the oncs what they think is going to happen to your bony spread and what sort of probs they think you might have with them.
I hope that is of help and that I have not upset you in anyway.
I really hope this chemo does the trick for you and wish you all the best
Kate
Hi there
just wanted to add that I’ve had similar dissinterest in my bones. I had a bone scan last oct. which didn’t explain my sore hip. Eventually got sent for MRI which found a large tumour. Panic ensued, immediate bed rest and overnight in hospital. I was let out the next day for my wedding! I was going to have an op but decided to go for radio only which has helped the pain and since all this it hasn’t been meantioned.
Due to my insistence I just went for another MRI as I wanted to know if my bones had improved since then. I have been told to be so careful of my hip that it’s seriously affected my mobility. I’ve been on oral bondranat (can’t spell all the drugs) so not sure if there’s anything better. I’ll see what the scan says and if no better will push them for other options.
I think they ignore the bones because they can’t do much unless they’re painful and they they can zap them with radio. But it’s strange having a whole side of the cancer unacknowledged largely,
franky
I am really worried as I am getting severe pains in my back and leg…so bad it makes me cry…the consultant has told me it’s due to a trapped sciatica nerve aggravated by the Tomoxifen drug…should I believe them or not?
Hi Bevers
I had pain in my right hip and leg and was finally given a bone scan in jan 06 which confirmed the spread to my bones, i had rad which did get rid of the pain.
I was put on 4 weekly infusions of Bisphosphanate (pamidronate) from feb 06, but there wasn’t any monitoring of its effect. I had complained of constant back aches and pain in my left hip from oct 06 which seemed to be ignored by my onc, but my GP put me on dicloflex (anti imflammatorys) which eased the pain but didn’t get rid of the back aches,then in dec I was finally sent for another bone scan which showed the spread to my spine and right hip.
My onc stopped by bisphosphanates in feb 07 saying it clearly wasn’t doing any good but has not suggested anything else for this, which is worrying as he had told me your calcium levels rise due to the cancer in the bones and the B’s help to reduce the levels.
i’m currently on chemo for my primary that has returned, but do not know if this is also helping my bones as I was told previously by my onc that chemo doesn’t have much effect on the bones. So like you they seem to be ignoring the bones.
has anyone been given anything else once they were taken off bisphosphanates?
philipa
PET scan detected my bone tumours Hi, Val and everyone.
If a bone scan or CT scan doesn’t show up tumours when you have bone pain etc. try and get a PET scan done. This shows the metabolic rate of the cells (how fast they are using glucose) and a high rate over a critical value (measure in SUV, standard uptake value) indicates malignancy. It picks up HOT SPOTS and indicates tumours before they show up on other scans. I had severe bone pain when I was on Tamoxifen years ago but it was due to a trapped nerve in my shoulder from lifting a deadweight months before, which resolved itself eventually, but not before I’d been given some horrendous painkilling/cancer suprressing drug which made me feel I was dying! I stopped taking it before the bone scan, which was clear. When I did have a recurrence it was in my msatectomy scar andnothing to do with the bones that time.
Last October I had a clear CT scan of my pelvis but on Jan. 25th a PET scan detected a hot spot of 5cms. and the subsequent CT scan 2 weeks later defned the tumour in my hip, for which I’m now having rads.
So if you’re worried, Val - I’d ask for a PET scan. That will give you a whole body view of what’s going on. It detects anything brewing which is 1 cm. or more in size. A CT scan is generally thought to pick up from 2cms. I think and solid tumours only, if I remember correctly.
Let us know how you get on. PET scans are costly so you may meet resistance.
Wishing you well,
Jenny
Monitoring of any kind varies. Bone scans are notoriously difficult to read, I’ve seen mine and honestly it looks like a big fuzz. The problem is healing bones can take a while to show any change on the scan and when they do they can look the same as damaged ones, hence the problem.
I don’t have regular bone scans, as I feel I have little to gain from the information they give, the best indicator is how I feel. When I did have exacerbation of pain I did have both a CT and bone scan but really the bone scan only told me what I already knew.
It’s important to have regular CT scans to check for soft tissue spread and perhaps ask for yearly/twice yearly bone scan and try to be guided by how you feel in between and react to that - that’s what the Onc’s are doing - they are waiting for anything new to be reported.
My Onc always likes to remind me we treat people NOT scans and has seen too often medics (over)reacting to scans and changing treatment too quickly or needlessly.
Love Twinkle xoxo
philipa you need to watch out for how your bones feel since stopping Bs.
It seems to me likely that they were doing good although not enough - ceasing Bs may leave you worse off.
So if you find your bone aches worse you need to go straight back to onc to go back on to Bs.
Zometa is stronger than Pami. Depending on your age you would need to think about possibilities of ONJ- check this online. But then you might prefer Z to help with bone pain and to take the risk- not an easy decision.
Best wishes, dilly
Hi Kate
I’m hormone receptive and her2 positive and have Zometa & Herceptin every 3 weeks, plus just started Xeloda. I had excrutiating pain in my spine last year and had radio to thoracic 10. I now have dull back ache in the thoracic area and more recently, discomfort in my ribcage. The onc says because my spine is weaker, I’m probably leaning forward slightly and my ribs are scrunched up.
Your advice to ask the onc what he thinks will happen with the bony spread is good and I will ask when I next see him. I agree there’s no point having unnecessary scans, and the onc certainly thinks there’s no need. I will push him harder to explain why (he’s a man of few words!)_.
And please don’t worry - your reply didn’t upset me. Thanks for your good wishes about the 3rd lot of chemo - I’ve got my fingers crossed.
Bev
Hi dilly
I’m sorry to hear what a rough ride you’ve had. As you say, oncs are variable (like everything else). Mine only seems to answer questions, and I don’t always ask the right ones! At the moment I’m not experiencing pain, just a bit of discomfort and have stopped taking painkillers (was taking Morhpine and Diclofenac). From reading your and everyone elses replies, I guess my onc thinks nothing much is happening with the bones because I’m not reporting anything new. But I will push him harder for answers and ask to see the scans. Thanks for your advice and good luck.
Bev
Thank you so much for the info.
I am getting paranoid about any little ache or pain which previously I would have not given a second thought to.
I really should not moan, last session of Radiotherapy next week and not feeling too bad at all.
I have been attending the hospital virtually every week since being diagnosed three weeks before Christmas. I now feel I will get withdrawal symptoms of not having to go until next July…I feel so cared for and safe there…how sad is that . 
bone mets hi Bev
have just been reading all the posts on the bone mets. I too have bone mets and theses were eventually dx in Sept 06 after 6 months of regular visits to the Dr’s who kept sending me away with pain killers for muscle strain!!!
Whilst I have great confidence in my Onc, I also feel at times as though he is not doing very much. I had a bone scan which showed mets in pelvis and sternum and he prescribed Arimidex ( i am thru the menopause) and Bonefos to strengthen the bones. I see him every three months and he is monitoring me with blood tests only. On my last visit he agreed to another x-ray on my hip/pelvis and he seemed to think that there were signs of repair to the bone which was great. However, as the original x ray only showed a “suspicion” of mets and it needed a bone scan to show the true damage, I am not confident with the x ray results this time. Bone mets are difficult to monitor and as others have said, Oncs tend to pay less attention to them as they are slower growing and are not the killers. but this doesn’t offer much comfort to the patient.
I also asked about changing to IV bisphs but was told to continue with the oral tablets. couldn’t be because of the cost could it ???
the positive thing about these forums is that it enables us to see what treatments others are having and we can then mention it to our Onc when we next visit.
best wishes Barbara
Bone Mets Hi
Just reading all the postings for the first time. I have mets in the bone liver and lung. Diagnosed 6 years ago (been attending hospital for a year when I was told to go away and not worry about the wee lum - thats another story) 3 years ago (1 year of difficulty breathing told it was asthma!) secondarys as above. Reading this what an idiot I was not to push further. However I have a super onc and she looks after me well. Last week I went because of pain in my back - but seems more like muscle pain because it is only when I stand up from a low seat. Also because of 3 years of lack of exercise because it makes breathing difficult I think that may be a problem. Although when you look at the bone scan there seems to be more black on the spine than anything else. Going for another bone scan. I have been on bondronat for 3 years (pill form which I had to have permission to get because of the cost at that time). This is being changed to IV to make sure it is being absorbed. Difficulty with this is because of my veins which are really poor. Should really read up about all this - reading this site makes me feel very unaware. Any advice
Ziggy
Ziggy the much higher absorption rate with IV will be better for your BMs.
Don’t worry too much about the veins -delivering via a drip doesn’t stress them like chemo injections.
Good luck with it and best wishes, dilly
Bondronat Hi Ziggy
I was reading with interest your post about Bondronat. I’m currently on Pamidronate infusion and have been told that at the end of my current chemo cycle I will have to change over to an oral Biphos because there is evidence that IV Biphos can cause jaw necrosis if you stay on the it for too long. I’ve been on pamidronate for 2 years. How do you get on with the Bondronat? I’ve read that you have to take it an hour before food and at least 6 hours after your last meal! I don’t really want to change over but my Onc is insistant, I have asked if it is for monetary reasons and she has said it is purely for my health! The Onc did however then drop the bombshell that my GP surgery would have to pay for the Bondonrate and if they refused then I would have to have Clodronate. So somewhere along the way money is always an issue!
I have bone mets in the spine and hip which have responded fairly well to chemo. They shrink when on chemo but unfortunately increase when I stop the chemo. I too have PET scans and bone scans. The PET scans are very superior and do show a lot of detail.
Any information on Bondronate would be greatly appreciated.
Bondonrate Hi
I have extensive bone mets. I was on IV Zometa from September 2006 until December 2006, it was stopped because one of my back teeth broke off. As Jaw damage can be caused by Zometa there was a possibility that this is what had caused the damage to my tooth. (I had a full dental check before starting Zometa and everything was OK). In February I started on oral form, Bondonrate, my Onc advised me that it is as effective as IV Zometa. I take it first thing in the morning with 1/2 pint of water then have to wait for 30mins before I eat breakfast. Once you get into a routine there is no problem. There is a belief that the reason oral form doesn’t work for some people is that the instructions are not followed correctly. How true this is I do not know.
My experience is that when on Zometa my back pains improved and an MRI scan showed that there was some healing to the bone, when it was stopped for 2 months the pains returned. I was also having chemo at the same time unfortunately this did not work. Now I am taking the oral form the pains have again improved. I am due to have another MRI scan in June this should give me some lnsight into how it is working.
Hope this helps, best wishes
Marell
I’m also a Bondronate user…I was diagnosed with bone mets in 2003. I had nearly 3 years of pamidronate but my veins were getting more troublesome and after the last infusion took 9 attempts as my veins kept collapsing I changed to Bondronate. Like Marell I follow the instructions for taking the treatment very carefully and I’ve had no side effects, no bone pain and now no long visits up the hospital.
Good Luck…I hope it works so very well for you.
Bondronate Hi
I just wanted to say thanks for the info on Bondronate, it’s encouraging to get other people’s experiences and know that they have not had any trouble.
Best wishes.