I’m terrified and tearful at the moment. I have had a breast removed together with lymph nodes due to breast cancer. My consultant kept telling me I would be fine and well by this time next year. He sent me for CT scan and bone scan but said he didn’t expect anything to show up as my bloods were clear. However when I saw my oncologist last Tuesday she said it had spread to my bones. I am in no pain whatsoever and this seems a completely different view from my consultant. I have been put on tamoxifen as apparently my cancer is very hormone receptive, will have radiation treatment and an injection once a month. Does anyone have any advice - I’m seeing my oncologist again next week - what should I be asking.
that must have come as quite a shock to you. Always dangerous I think when oncologists raise our hopes like that. My bone problems weren’t giving anything away in my bloods either! and they were very extensive at diagnosis. Has he told you which parts of your bone it has spread to? You don’t say what the monthly injection is. I wonder if you mean intravenous treatment. It is normal to be given one of the bisphosphonate drugs with bone mets, such as pamidronate or zoledronic acid(zometa). If he hasn’t mentioned this I would certainly be asking. It is good that you haven’t pain with it. Mine started that way and really over the past 8 years it is mainly the last 2 years that pain has become a problem. Near the beginning I did have some radiotherapy to my left hip and top of spine as they were giving a bit of trouble. I would also recommend that you don’t ask your onc what your life span is likely to be. I have heard awful tales of some women being told with bone mets they have about 18mths. The treatment these days is so effective for bone mets that many of us have been around for a few years now. If you need to ask questions at all do make good use of the vast experience here in this thread.
I am sorry you have had this recent news from your doctors. It must have come as quite a shock. I know it did to me as I had my mastectomy in 1989…then in 1999 I found it had spread to my bones. But treatments have come on in the passed 11 years thatI have had bone mets. So if any questions arise and you want to talk about it please just come onto this thread. Dawn has covered most things but until you hear more from your Consultant there is nothing much I can suggest. Can you take someone with you go because I find a second pair of ears is very useful and make a list of anything that concerns you so that you remember to ask him/her. We will be there to help you as best we can. This is a great thread so “save” it to make it easier to go bvack to. Hugs and stuff, Val
Hi and welcome Myfanwy
We all know exactly what you are going through right now and it is a dreadful shock to be told that your BC has spread. I had nearly 5 years between my primary and secondary (bone) dx and had felt no pain whatsoever other than what I put down to a muscle ache when I jogged. As both Dawn and Val have said there are many treatments for mets and they should know - they have been around for a long time with them Backing up what has been said you should be getting some form of bone strengthener (bisphosphonate) either by IV (through your veins) or tablet. I see you are also having Tamoxifen which is also used if your BC is hormone receptive.
In my experience I certainly felt better to cope with my dx once I had my treatment plan and I got started so I hope you also can see the light at the end of the tunnel soon - it is a very dark place when you are first told - I remember it well. Good luck with your next appointment and getting the right answers
Nicky x
Thank you all for your comments, it has helped although I still feel very depressed at the moment. I’ll find out more at my next appointment with my oncologist and get back to you all.
Hi – I am 15 days post Bone Met diagnosis and it seems like a life time. I can really empathize with you Myfanwy. I find ‘doing things’ helps this terrible wait and trying to take some control. The Doctors are all for telling you what to do – but I want to deicide what I want to do. Hence, going for a second opinion, reading and research – and asking all you lovely ladies for your take on things! I know it is not everyone’s way of coping – but I would go mad if I just sat and waited! My Oncologist would not see me or even pencil me in her diary (!!!) until she had received notification in the post from my Consultant surgeon. And you know how long that can take – so I phoned up the Marsden and they slotted me in for an NHS Second opinion on Monday – I am delighted not to have to pay for this!
Not sure if this has helped you Myfanwy as everyone copes in different ways – but , someone said to me today – ‘don’t wait for the storm to blow over, learn how to dance in the rain!’ I like this and hope you find some good music to dance to!
Hi Sadie,
Sorry you’ve joined us, but welcome. Glad you’ve got an appt for Monday, it’s awful your own onc wasn’t offering to see you. Let us know how you get on on Monday when you feel up to it.
These boards have been a great help and sourse of info and encouragement to me and I hope they will be to you too.
I got my secondary dx in March this year after nearly 11 years from primary so still quite early days for me but you do start to adapt to the new normal and there’s lots of inspiration on these forums.With best wishes to you and all the others on this thread,
Julie
Thank you for all your comments and support. Well it was with much fear I went to see my oncologist again today and my partner was wonderful, he is such a great support. My treatment is tamoxifen, a lot of radiation therapy and the drip once a months for bone strength. I will then have to have scans again in about 3 to 4 months to see how things are going and apparently it will be about a year before my oncologist knows how my cancer will behave and whether it has been contained. Somehow I now feel I have some control over my cancer if you all know what I mean. Also I shall return to work next week, they have been absolutely wonderful in their support and I think, obviously if able, working is a good tonic. Anyway keep you all posted and wish you all the best.
Hi - My trip to London was good but it was bery difficult to travel as sitting is very painfull at the monent. However he was able to give me my PET scan rsults which shows no other sign of cancer - I am very relieved! So, only the crumbling L2 to sort out! I need the op soon as the pain is increasin daily and i am struggling with mobility and not functioning well!! Seeing my surgical team on Friday and my oncologist has also decided she would like to see me now! So I should have a full plan in a week and be able to take control again!! Thanks for being interested!
Sadie that is great news that there is no other spread. Will the surgery completely remove the tumour? Do hope they move quickly for you now so you can soon be out of pain.
finty x
Hi Myfanwy18
It sounds like you are getting control again which I found really helped me. Your treatment is similar to many of us with bone mets and it shouldn’t cause you too many problems, I hope. Depending on the bone strengthener IV you have you could feel a bit rotten after the 1st one, especially if it is Pamidronate (not sure if this applies to Zometa as well?) So take it easy, and I found I didn’t have any noticeable side effects after that 1st one. It is also fairly normal to be scanned regularly during this stage so, although that is an anxious time, it does give a good guidance as to what is working. If you are able to keep working (as I was) it does help make you feel a bit of ‘normality’ in your life away from all this cancer crap! Good Luck with everything.
Sadie - that’s good news about no further spread and I hope your op comes round very soon, sounds really painful. Good Luck as well.
Nicky x
Hi Nicky - yes Zometa tends to have side effects for the first dose too. I had flu like symptoms for about 24 hours - so have some paracetamol at the ready.
Hi - Thanks for the warning about the bone strengthening injections making you feel bad - I will prepare myself. But I think surgery will be first. Removing all the L2 vertebrae including the tumour and making me our of metal! I will be flat on my back for weeks and not able to drive for months!!Oh Joy!! But I just need to get on with it now. I can only sit for a few minutes and 4 different pain killers make my head very fuzzy (so, sorrry forr any speeling mistooks!!). Working is not an option at the moment - I work with Special Needs children and so need to move fast!! Not quite there at the moment! But post surgery I will get on with things!! Day time tv does not hold much excitment for me!!
So glad to hear the results of your PET scan was good I hope when you see your surgeon on Friday you will know a bit more about when it is all going to happen. (was the ref to spelling mistooks a bit tongue in cheek rofl)
Myfanwy I found the bisphosphonate infusions, both Pamidronate and Zometa, I did not have any side effects with the first dose of either of them - just goes to show we are all different. I did find initially when they were 4 weekly the pain would return before the next one.
I’m getting a bit fed up with pain increasing again - even though I thought at the start of gabapentin it was improving - as I increased the dose so did the pain increase!!! So tomorrow the mac doc has suggested I try fentanyl patches instead of the oxycontin. I find it strange how from time to time the nature of the pain seems to change. I’m just so relieved that the CT I had a few weeks ago was o.k. as it was a few years since I had one, otherwise I might be worrying about other things going on! as we do!!
Hi Sadie, Don’t know if we have covered it before but have you applied for Disability Living Allowance to help you out financially? If you need info just ask. Also a Blue Badge which enables you to park nearer shops and although you won’t be able to drive you can still use the card in any car that has you in it. I have extensive bone mets but have not had any surgery and I wish you well.
As for the side effects of the infusion ( or similar drug). I didn’t feel unwell really just a bit tired for the rest of the day which wore off the next day. I do think the first one made feel a bit different but I think I was very anxious at the time so it could have been that. Pamidronate takes longer to infuse than Zolidronate. I have been on both but I am now taking the tablet form which is called Bondronate.
I take different kinds of painkillers and take MST (morphine slow release) every day, plus Gabapentin for Nerve pain. But I have also tried other things for bone pain including patches and a Tens machine. I am pleased to say that I don’t need the last 2 items at all now and the pain is under control completely. I know I am lucky in this respect and it has been trial and error over the years as I have had bone mets for almost 12 years. I also have liquid morphone (Oramorph) which helps with any breakthrough pain biut I haven’t needed it for a while. Also although I am on a lot of different meds I am not at all fuzzy and your body becomes used to it through time. Also I was on 120mg of MST at my worst and am now down to 40mg a day so you can go up and down with the drug and my GP is happy to let me decide waht is best for me. If you want to PM me at any time or ask on here I am happy to help if I can. Love Val
Hi Dawn I was busy composing my post so missed your one above. I am sorry the Gabapentin isn’t working so well for you now. You are a great inspiration to us all. Hugs, Val X
Hello to the new ones & earlier posters on the thread. Haven’t been posting on this thread for a while, but have been reading all your posts. Have got a question for you, especially those have got bone mets for a few years.
Back from appt with onc today. PET scan last month showed no activity in bone and I don’t have any symptoms at all. He said that he might change my IV zometa from every 4 weeks to every 2 months (8 weeks) some time in the future! Anybody heard of this before??? When asked him about switching to tablets, he wasn’t so sure about that. He’d rather me having it IV every 2 months. Everyone?
I have Zometa every three weeks, but I have read of bone mets patients in the US having larger, less frequent doses. Maybe it’s worth having a look at some US websites?
There are a couple things that might be an issue - if you have a port I think you have to have it flushed every 3 or 4 weeks anyway, so it wouldn’t seem to be any more efficient to have your IV less frequently than that. I would imagine having infusions less frequently means that you get larger fluctuations in the dose, and I would want reassurance of what the implications of that are for se’s when the dose is high, and for maintaining bone mets when the dose is low - I really don’t know how well they are able to calibrate it.
I remember you saying before that you were having some - maybe all - of your treatment privately. My insurance company would only pay for 6 months Zometa - although I am actually getting 12 months because the hospital is giving me the extra 6 months free. Then I go on to tbalets. I’ve been told this is standard practice with insurance companies for long term drug treatments, so that might be something else to check out if it applies to you.
Finally - great to hear you have no activity in the bone - long may it continue.
Thanks for quick reply. I’ve got a PICC line, but due to no more chemo required, he was thinking of having it out, esp I had developed an allergy to the statlock (the bit holding the PICC line in place), so lots of steri strips holding it in place at the mo - not a long term solution, I have to say.
It’s a bit funny with my insurance company. Last time I was told that they’re only paying it till Feb next year, but when I did further inquiries, what it means was that they do their policy reviews every 6 months and they’ll review it again in Feb and decide whether they’ll continue paying me.
I’ve heard somewhere that we can only on IV Zometa max for 2 years. But this is not true according to my onc, so I’m really confused now! Anyway, seeing him in Jan, next year (I don’t know whether it’s good or bad to have such a long gap!) and hopefully with a bit more research, I’ll be armed with a bit more knowledge to persuade him one way or the other.
I get the impression that because Zometa is so new, they’re not really sure what the long term implications are. I’m afraid I think we are guinea pigs! But, it is a great drug and I’m very grateful to be getting a year of it. And I dare say if I need to in the future, I can go back on it. Good luck - I hope you get some answers.
Backing up what has been said you should be getting some form of bone strengthener (bisphosphonate) either by IV (through your veins) or tablet. I see you are also having Tamoxifen which is also used if your BC is hormone receptive.