Bone mets? - what is likely treatment

Hi Ladies

Thanks for all of your earlier comments earlier in the week. I am afraid to say that I am still no wiser as to whether I have bone mets (the scan has shown that I probably do have them and my GP has phoned me to tell me that, but my ‘urgent’ referral to the hospital hasn’t yet arrived! ) With my primary diagnosis I had a pretty good idea of likely treatments - chemo, surgery, radiotherapy - it was a typical menu! However I really have no idea what to expect this time.

I realise that everybody is different and all oncology is individualised, but can anybody throw any light on what is likely treatment? The scan has shown ‘bone abnormalities’ in my hip and shoulder. Hip, I expected, as it is quite painful (and rapidly getting worse - I’m sure these shooting pains down my legs are new!) My ‘suspect’ shoulder feels a little stiff, but no stiffer than the other one. These are the only 2 areas that my GP mentioned in her brief conversation with me on the phone, but until I hear full analysis of what has actually been detected I am unsure of any further smaller areas that might be infected. (although I am beginning to self diagnose it in my sternum (fresh shooting pains!)

Has anybody else had it in the hip?
and what were the treatments?
As for the shoulder, how is that treated?
Is chemo likely? What else might be tried?
Is it usual for it to present itself in more than one place at once, and is this more serious if it does? (particularly as the 2 places are so far apart!)
Will I ever be NED or will I have treatments for the rest of my life?

Sorry for the bombardmentt of questions, but this is all that I can think about (especially at 4am!)

Have a lovely weekend

Nicky

Some answers Nicky…
My diagnosis was slightly dramatic as I was diagnosed with both breast cancer and bone mets when hip spontaneously fractured. I have a hip replacement…it’s great, no sticks needed, fully mobile.
As I was er+ I then had approx 5 years of hormonal treatments…and had many years of no detectable cancer activity.
I’m now on my first chemo, Capecitabine (Xeloda) it’s working well, I’ve been on these chemo tablets for 2 years now…no hair loss with this chemo and again, so far, I have no detectable cancer activity.
Lots of us with bone mets have bone strengtheners, bisphosphonates, either an infusion or a daily tablet. I fell heavily on an icy pavement last winter, I was fine, no broken bones, thanks I believe to bisphosphonates.
Bone mets are (usually) in more than one place…the hips, long bones, spine and ribs are most common places…but succesful treatment and bisphosphonates will help all areas.
I still have bone mets but I also have areas of complete healing and have had seven years of stable, no active cancer, I was diagnosed in 2003. I have a great quality of life and take, need no pain killers.
Radiotherapy is often used for any painful areas.
Hope my answers have helped a little and if you do have bone mets you will find lots of support here…Take Care…waiting is horrible I hope you get all your results soon…x

Yes - I have secondaries in the hip (and elsewhere) and have just today had “palliative” radiotherapy to it for pain relief as it was getting tricky…It will apparently get worse before it gets better but they are very positive that it will improve my quality of life.

I also have stuff in pelvis, ribs, spine & skull and have been on bisphosphonates plus Tamoxifen following completed treatment for primaries 5 months ago.

I now have no back pain, hardly any rib pain, have never felt any pain in my skull anyway and they’re dealing with what’s left with RT! So pretty positive really!.

Can’t answer about chemo as my chemo (FEC & Tax) was already under way for primaries when secondaries were discovered so it was treated as a package! But after chemo, bone scans showed that there had been areas of healing to the secondaries - so it obviously helped.

Hi Nicky

I am sorry to read you have this worry and can appreciate that you want information about potential treatments, BCC have published a factsheet about bone secondaries and if you want to read it and think it may help here’s the link:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/7/

If you feel that you want some further support please do call our helpline where you can speak to someone in confidence, the number to call is 0808 800 6000, weekdays 9-5 and 9-2.

Hope this helps Nicky
Take care
Lucy

Hi Nicky,

I have probably said all this before in previous posts to yours, but my bone mets is in a number of places and right from the time of dx of 2ndaries in 2002 that was the case. You do occasionally hear of people with only one or two ‘hot spots’, but it is not uncommon for it to be in many areas. The most common treatment is bisphosphonates, and can be either intravenous (usually pamidronate or zoledronic acid (zometa)). I am also on herceptin because my bc is her2 positive. I think when you are on AI’s or herceptin they don’t always add chemo into the mix. Sometimes they will change the AI, but I think you were on tamoxifen until your oopherectomy so changed over to Arimidex? not that long ago. It could be that your bone mets had already started before you changed so the Arimidex could well be stabilising them already. The treatment I have been on since 2002 certainly stabilised mine and subsequent scans a year later onwards showed considerable improvement. I would say that apart from the odd occasion I have been relatively pain free - when I had problems I had radiotherapy to help. It is only the last couple of years I have had a lot of problem with pain but have recently found out that was not due to the bone mets, but a soft tumour alongside my spine causing the problems.

Dawn
xx

Hi Nicky,
I was dx with bone mets in March and have it in spine and ribs, I’ve had some radiotherapy already and having a short blast to my ribs in a couple of weeks for pain. I’m on Femara and should be starting on zometa in next couple of weeks. My onc isn’t considering chemo at moment. Hopefully you’ll get answers soon - I know it’s really horrible not knowing what to expect but this forum is really very helpful. Take care, JulieD x

Hello Nicky,

I can answer some but not all of your questions!

Hip - yes, I was diagnosed with bone mets in my hip, in fact it was pain in my hip when I walked that alerted my oncologist and led to the discovery of my mets.

Treatments - I have been having 4 weekly zometa injections (bisphosphonate), and my hormone treatment was switched from tamoxifen to letrazole (Femara). I also had 3 sessions of radiotherapy for pain relief. I was warned that this could make the pain worse initially, and the full effects could take up to 6 weeks. It’s now 8 weeks since the rads, and I am completely pain free - excellent! (Haxted - hopefully your treatment will be equally effective).

More than one place - yes, I have 4 areas, and from what my oncologist says, this is quite common. As to the seriousness, I believe that statistically a person’s prognosis with several areas will be poorer than a person with just one, but this will be affected by many other factors, included the size of the areas.

Good luck,
Jx

Nicky thanks for starting this thread - these are questions that concern me too. I have one small spine met - have just finished chemo and will have MRI soon to see if it has had any affect on the bone met before starting rads. I am having Zometa and Avastin every three weeks for a year - and tamoxifen to start soon.

Nicky if you are being treated privately, Avastin my be something for you to investigate - but sadly it is not yet available on the NHS. It is used in advanced bc to cut off the blood supply to tumours to prevent them growing. It is horrendously expensive, and my insurance company will only pay for a year’s supply.

Many of you ladies have said how well the biophosphates work to strengthen bones and releive pain, but my concern is the cancer spreading beyond the bones. Is this how it works, or do bone secondaries stay in the bones?

As my secondary is (as far as I know) just one very small (couple mms) tumour - has anyone had any experience of destroying the met and no recurrence? I don’t know if I am being hopelessly optimistic that this may be possible? The reason I ask is that I have to decide whether to really go for it with rads in the hope of knocking it out - but I then won’t be able to have any further rads to it if it doesn’t work. I am seeing my onc again next week to discuss, but would really value anyone else’s opinion.

Thanks - finty x

Hi ladies
I too have bone mets - having had them found on a CT and a bone scan 2 years ago. A routine mammo discovered a local recurrence which lead to these scans just before a mastectomy was planned. I am strongly ER and PR+ and the initial suggestion was to treat me with hormone treatments only (not Tamoxifen as I was already on that at the time so it wasn’t doing it’s job). However after considering all the options between my onc and us (OH and me) we went for chemo 1st and then follow up with hormones, all the time having bisphosphonates. Her opinion was that this would give me the longest time before any other chemo etc might be needed and hopefully give a good clean out (my words not hers!) in case other areas of mets were there but not able to be seen on scans. Since then I have been fine, I have an area on the top part of my right hip and a small area on my spine, scans have shown healing and my recurrence is barely or not detectable as it is in the scar tissue from my previous WLE.
As to whether mets stay in the bones that’s a tricky one. Some ladies it stays ‘just’ in the bones for years and some it moves to other organs fairly quickly. Unfortunately secondary bc is not curable however it is treatable, therefore areas can shrink (as in organ tumours) or show healing (as in the bone) but it will never go away. You will be closely monitored by your oncology team (I hope) and have regular checkups and scans to see any changes and then different treatments can be discussed. Because we are all different it is very difficult to say what the ‘standard’ treatment is as there doesn’t seem to be one - other than bisphosphonates which, apart from strengthening the areas of affected bone I understand they strengthen the other bones to stop further attack from bc cells (sounds a bit odd but I’m sure I read or heard that somewhere).
Good luck with your treatments, Nicky and Finty and any newbies :wink: Ask as many questions as you like, we are a resourceful bunch, as they all help when you have to discuss things with your onc about your specific treatment plan - these forums certainly helped me in this way when I had to choose what to do 2 years ago.
Nicky x

Hi Finty…I do have areas of complete healing of bone so I guess there is no cancer in that area? or perhaps it’s been dealt with and is inactive permanently? I’m not sure…I think at the time I was so relieved I had areas that had healed I just didn’t ask.
You can usually have radiotherapy in the same place after a period of time inbetween…one forum member who had been diagnosed, like me, with bone mets and primary together has (fairly recently) had rads to the primary and I understand it’s vanished completely. (Hello that forum member!)
A while ago, probably a couple of years ago now, I did some searching on the web and I found some info that Zometa is more effective at containing bone mets. Unfortunatly the protocol at my hospital then was Zometa was only given when your mets worsened. I’ve had bone mets only for seven years…I think in part due to my having regular checks on how effective my treatment is. As soon as my markers leave the normal range…ie the range anyone without cancer would have my treatment is changed. My markers (CA15-3) are never beyond the very late 20’s early 30’s without a change in treatment being imminent. Over the years my markers have been anywhere between 19-26 before a treatment starts to wane. I believe, have been told by my Onc, 14% of women with bone mets never have any spread to other organs…but I’m not complacent now I’m 7 years down the line as I do know some ladies who develop other organ involvement 9-10 years plus from the original bone mets diagnosis.
Sadly like Nicky08, I’ve been told my bone mets are incurable but very treatable for a good while. When you are newly or recently diagnosed that seems such rotten news but for me, over time, the very treatable bit has kept me hopeful and I do tend to bang on here on how well I still feel to hopefully let others know their is a life to be led, enjoyed for many of us after a secondaries diagnosis.x Hope all here have such beautiful weather as I’ve woken up to this morning!..x

Thanks Belinda that is really helpful. Could you tell me more about markers? My onc has never mentioned markers - I must ask at the next appointment. As she has also said there is a small possibiity my bone met is something else - I gather scans are difficult to read and are not conclusive. I doubt that the diagnosis is wrong, but would markers provide more evidence?
Thanks

finty x

Hi Finty, this link may help, labtestsonline.org.uk/understanding/analytes/ca15_3/glance.html there’s further info if you click on the test sample, the test and common questions buttons on the page.
The tumour markers picks up on a protein produced by active cancer cells which is then expelled in the blood…someone with no or no active cancer can have a reading of up to 30…some hospitals say 35…so I would think, hope the test would be able to rule out bone mets. Markers don’t work for everyone and I know some here have had all normal readings even whilst having progression but mine are reliable and they can be very reassuring if they are…I have my markers taken every 3 weeks, just before my next cycle of treatment…I also have bilirubin levels, kidney funtion checked along with various other tests using the same blood samples. So I’m very well monitored. x

Thanks so much Belinda - I will get on with some research.

Thanks for all of your replies, they really have been what I want to/need to hear…Belinda brag all you like about how well you’ve been…that’s the sort of information that I really need to hear now! Unfortunately my friend who had bone secondaries only lived for 2 years so I need that information to be balanced out with stories from the other end of the scale!

Finty - from your post you appear to be at the same stage as me? I too still haven’t had anything confirmed, I still haven’t had an appointment with the oncologist, so nothing is definate. (although with having lots of lymph nodes infected 3 years ago and hip pain - which has to explained by something I’m afraid that the suspicions are likely to be confirmed in my case. -yet I want to believe that it could be explained by something else.)

I used to use this site 3 years ago when going through the horrors of chemo etc, then I came back last year when I had my oophorectomy. I have logged on from time to time in the past. I have appreciated lots of valuable answers/comments, yet I really feel overwhelmed by the lovely responses, factual information, sharing of experiences and encouragement that I have received in the past week. So thank you for everyone who has replied to me.

I do however have one further question (for now anyway!- more possible later) I am already taking bisphosphonates (Alendronic acid) in an attempt to prevent osteoporosis, should this have prevented bone mets? or is it a different type? It is a one tablet dose once weekly. Is it likely that I will now be given a much stronger one? as some of you mention daily tablets or IV infusions.
I have been taking this since September 09, when I changed to Aromasin from Tamoxifen, after having my ovaries out. Nicky - I too am strongly ER and PR+ (100%) , which is why I had my ovaries out. You mentioned chemo, which one were you given?

Thank you once again I REALLY appreciate your support,

Nicky xx

Hi Nicky, I take a tablet every day, Ibandronic Acid (Bondronat) I have no side effects. Some find their first bisphosphonate infusion makes them feel flu like the next day. I experenced this with my first bisphosphonate, I had Pamidronate (Aredia) infusions, but only after the initial infusion the following infusions were trouble free. I don’t think Alendronic acid would have been able to prevent bone mets…(I still hope you may not have bone mets)…I think there was a trial, I will try and find it…using Zometa (zoledronic acid) in primary patients to try to prevent bone mets. Found it here, cancerhelp.org.uk/trials/a-trial-looking-at-zoledronic-acid-to-try-to-stop-breast-cancer-coming-back?SearchQuery=and%28crtype%3astring%28%22157%2320%23Breast%20cancer%22%29%29and%28content%3astring%28%22Zometa%22%2cmode%3d%22simpleall%22%29%29and%28crdtype%3astring%28%22ClinicalTrial%22%29%29and%28or%28crtrialstatus%3astring%28%22Closed%22%29%2ccrtrialstatus%3astring%28%22Results%22%29%29%29&AdvancedSearchFormType=research_and_trials_adv_search_form&OffsetValue=1
And this trial, cancerhelp.org.uk/trials/a-trial-looking-at-zoledronate-or-ibandronate-for-breast-cancer-that-has-spread-to-the-bones?SearchQuery=and%28crtype%3astring%28%22157%2320%23Breast%20cancer%22%29%29and%28content%3astring%28%22Zometa%22%2cmode%3d%22simpleall%22%29%29and%28crdtype%3astring%28%22ClinicalTrial%22%29%29and%28crtrialstatus%3astring%28%22Open%22%29%29&AdvancedSearchFormType=research_and_trials_adv_search_form&OffsetValue=1 may be of interest to anyone starting bisphosphonates…x
Meant to add I switched to tablets after having vein/cannula problems.

I was on a trial called Azure which was to check if zometa would help prevent mets. I started it 6 years ago and received zometa every 3 then 6 months, for 5 years total. Don’t think the results are out yet.

Sarah

Nicky there could be other explanations for your hip pain - there are cases when chemo causes hip problems. Do you remember the Radio 4 Woman’s Hour presenter (name escapes me at the moment) who had bc - finished up having hip replacements after her chemo caused damage to the hip joints.

i also have hip pain when i walk but its not mets its caused by chemo/menopause.

my onc was great and took my concerns seriously as obv we were both thinking bone mets especially as already had 2 primarys one being TNBC and also carry the brca 2 gene… also had a few more areas of pain like base of my spine and ribs but all came back normal… the pains started a couple of months before i finished chemo in nov.

so my onc arranged for bone scan, MRI and xrays… all came back normal… so the pain has just been put down to menopausal symptoms due to the chemo.

sometimes when you discover things are benign the psain disappears but unfortunately not in my case… but its manageable.

will be keeping my fingers crossed for you.

Lxx

Hi Nicky
In reply to your question I had FEC, 6 sessions, 1 every 3 weeks. However, as Lulu has pointed out - let’s hope your hip pain isn’t mets :slight_smile:
Nicky x