Hi all,
well it’s been a VERY long time since I posted on here and to be honest I had rather hoped I wouldn’t need to find myself posting again (no offence!).
Anyway, here goes. To cut a very long story short I was first dx with bc in 2007 age 34. Had the full gambit of treatment but my prognosis was fairly poor as I had 25/28 nodes involved. I did have a scare a couple of years ago when they thought I may have bone mets but it turned out to be nothing sinister. However, for the past few weeks I have had horrific pain in my right hip at night. I contacted my BCN, who immediately arranged for me to see my surgeon as my onc was on hols. As soon as I saw my surgeon and told her my symptoms she dashed off, only to return a few mins later to tell me she had booked me in for an urgent bone scan a couple of days later.
Well, I have had a couple of bone scans in the past but this one was defo different. I got asked a million questions, loads of extra images of certain areas were taken and there was lots of whispering around corners! This all resulted in me then being whisked off for additional xrays, that weren’t even on the original request!! And given that by this time it was late and the dept was all but closed it left me very concerned as to what they’d seen on the scan.
Anyway, I haven’t cut a long story short at all have I??? I’ll get to my point…I have now been told that my onc will be giving my my results first thing mon morn, following an MDT meeting that took place today. I am not feeling v.optimistic at all to be honest and I wanna be prepared for bad news. I’m just wondering, if it is bad news, what questions should I be asking him there and then?? I know v.little about bone mets so don’t know what would be useful things to ask.
If anyone has any advice they can give me I’d be truly grateful,
Cheers,
Kelly
-x-
Sorry to see you back here! I remember you very well from back in 2007!
It’s good that you are not being kept waiting, but I guess that is worrying in itself!
Really I guess you should ask what treatments he is suggesting, most of us with bone mets have had the hormones changed (if ER+) or had a chemo (often in tablet form - much easier to tolerate)if ER/PR - and most people also have some sort of bisphosphonate which strengthens the bones and may have some anti cancer properties in it, often Zometa which is IV 3 or 4 weekly or tablets e.g. ibandronate which are taken daily.
Also he will go through with you which bones are affected as some may need stabilising at a later date! either by pinning or surgery/replacements. You may be offered radiotherapy if your hip is causing you pain, this should alleviate the pain. So ask about this or what pain relief you will be offered.
I was diagnosed with secondaries in my bones in April 2010, it was my hip that first alerted me. I also have bone mets in my sacrum, neck and shoulder. I was sent for rads on the hip, but as it had spread all down my femur too and it was such an extensive area, I had a proximal femur replacement.
I can imagine that you are in a very difficult place now, but there is lots of hope! Val who will probably be in touch has had bone mets for over 10 years and there are many encouraging stories of up to 20 years! Ok this is still scary as you are still young, but as treatments improve this will be extended further. Since my op I have had no pain at all and carry on as normal. Many people live normal lives (with added emotional stress obviously!) for many years.
One thing NOT to ask is prognosis or look at survival statistic…nobody knows how long you have it depends on so many different factors, mainly how you respond to treatments…and there are so many with new ones in the pipeline. All statistics are based on old data so all not relevant with Todays treatments.
I really hope that you don’t have bone mets!!!..but if the worst happens and you find you do, you will find lots of support and inspirational stories…Good Luck on Monday and please keep in touch and let us know hoW you get on!
First of all I want to say how sorry I am that you are in this horrible position, it is scary and the waiting is horrible but you will manage.
I was dx with bone mets in March last year after nearly 11 years from primary! Big shock!! However, I’m am happy to say that things are going well, I had some rads and am on bisphosphonates (bone strengtheners) and AIs.
Try to take someone with you as a second pair of ears.If it does turn out that you have bone mets the type of thing useful to know is
Where are the mets? What treatment plan are they considering and why that rather than anything else. If you are going to have bisphosphonates will they be tablet or IV? Will you have hormone/AI treatment,which one? Will you have rads for the pain? Do you need any further tests like MRI? How often will you be having follow-up/CT scans.
Mine are mainly spine and ribs and initially the biggest one was encroaching into spinal canal so they acted quickly to zap it with rads. You might want to ask if any of your mets are close to spinal canal and what symptoms to look out for and tell them about (usually pinsneedles/numbness of limbs)
Hope this is useful info. Try not to be too scared, there are lots of us living real lives for many years with mets. If you do have secondaries have a look on the bone mets threads, we’re very supportive and you’ll see hopefull stories. Also on a Tuesday evenings there is live-chat for secondaries folk where we talk about treatments etc but also more general frivolous things!!
Let us know how you get on. Thinking of you and sending you a hug,Julie x
I can vouch how so wonderful the ladies are on here.
I had primary in 2007 and mine returned in april. The support i got on here was invaluable so keep in touch and i will be thinking of you in this tough time.
Hi Kelly. We can all empathise with how you are feeling at the moment. I got my 2nds diagnosis in June this year and went into a right old panic. The ladies on here gave me the strength to challenge my Oncologist and now I have a treatment plan which is better than no plan at all. It is scary to start with but am getting on with it now, as all the secondaries people do.You may feel alone, but you are not - come and talk to us, let us know how you get on with your appt.
Hi there, I remember your user name. Just my experience, so far. I was diagnosed with bone mets in 2003…along with my breast cancer. I was in my early 40’s and my hip spontaneously fractured. Had a great replacement hip, it feels just like a normal hip and 8 years on I am feeling very ‘uncancery’ right now. I feel really well. There are many effective treatments out there. I no longer post regularly or visit the forums as often, because I feel so well, as I used to but popped in and couldn’t ignore your post. With Love.xx
Hi Kelly - I also remember you from your previous posts (Top Tips I think is one of yours?) and very sorry to see you back on here.
If you do have bone mets, and it sounds like there is some concern from the professionals, there are many treatments available as the others have said. I originally had BC in 2003 and it was one of my followup mammograms from that which showed a local recurrence in 2008. After bone scans and CT scans (as a ‘precaution’ ha ha) bone mets showed up, one larger area on my hip bone and a few very small ones on my spine. The hip had been twingeing but nothing that would have made me think otherwise. Anyway I had chemo, mainly for recurrence but also for the mets, in 2008 plus Pamidronate (another bone strengthener delivered by IV). After that, and my hormone status hasn’t changed, I moved onto AI’s (Arimidex in my case). I have also changed to tablet bisphosphonates as my veins are shot to pieces from the chemo. I have just had a CT scan 2 years after my last one (and 3.5 yrs after my dx) and all things are stable. I live my life as I did before, luckily with no pain - and appreciate it even more. I was so scared back in 2008 but you know that this forum is brilliant for offering advice and support and it really helped me then, and still does. Ladies such as our Val (scottishlass) and others show that you can live many years with bone mets without needing intrusive surgery or medication so all is not lost. I hope your appointment next week goes as well as it can and that, if bone mets are found, your treatment is ready to go asap - it certainly helps once you know what’s going on.
Good Luck
Nicky x
thank you so much for your posts, I’m so grateful. I recognise many of you fm when I used to post on here regularly so it’s great to hear how you’re all getting on. Guilty as charged…it was me who started the ‘top tips going through chemo’ thread many moons ago! I’m thrilled you still remember!
Your advice and support has been as wonderful as I had hoped when I first started this thread last night. I have made many notes and you have given me some really useful questions to ask. I am taking a friend with me as my OH is working. She is gonna take a pen and paper and jot things down for me cause I know what I’m like!
I am still on Tamoxifen at the mo, my cancer was strongly ER+. I did start Herceptin too as I’m also HER2+ but this got stopped after 3 as I developed severe heart failure. In 2009 I actually suffered an out of hospital cardiac arrest and for once was on the good side of the statistics as I was in the 2% that survive!! So, I’m now on a barrage of heart medications and my heart failure is classified as severe. I have an ICD (implantable cardioverter defibrillator)too so scans such as MRI’s are not available to me.
I guess the docs will need to take the fragile state of my heart into acct when they’re planning my treatment? Perhaps ‘conventional’ therapies may not be available to me? I know I am jumping the gun massively here but that has been playing on my mind.
Anyhoo, thanks again for all your wonderful support. I will be sure to let you know how I get on on mon. It’s gonna be a looooooong weekend!!!
Hi Kelly
Sorry to hear your news and as I am new to this thread also, I can confirm that all the advice is wonderful, along with the inspiring stories as well. I was diagnosed with bone mets in Sept. after having a hip replacement. i have had two lots of radio which has helped with the pain and am taking Arimidex and having a monthly bone infusion. Whilst it is devastating news the treatment does seem to work. Hope all goes well on Monday
Love Rosie x x
hi ladies i met most of you in the chat room on tuesday…this post has been really helpful as i also have just been told i have it in my bones as well and didnt have a clue what i should ask or say…im a week from the news and although im very tearful( mainly when people ask if im ok)i try and put a brave face on for everyone…but since i was in chat i have bucked up…family seem to have me in a box already so i have kinda distanced myself from them as i dont need the upset…
hopefully i will read you all on tuesday again…x
tracy.x
this was a bit of nonsense waffle sorry…xx
Another one here who remembers your name from before!! Sorry to hear you are back because of bone mets.
I was diagnosed in July 07 with primary and bone mets at the same time. Had chemo, mx, anc and rads then tamoxifen as I was 100% ER & PR+. Was later changed to arimidex with zoladex to shut ovaries down and then zometa as a bone strengthener (have that monthly by IV) and that was 3 yrs ago now.
I did have a slight progression in my spine mets late last year but this was treated with a one-off rads zap which got rid of the pain immediately. The onc left me on the same drugs as she said that they were working because it was a comparatively small spread over the years. Otherwise, I’m basically fine - early retired from work and loving it!!
I’m glad the docs seem to be on to your case quickly and seeing you soon to sort you out! I think the others have mentioned the sort of questions you need to be asking and it’s great you have a friend to take along. Perhaps ask them how you can get hold of them if you have any queries before they see you again - I usually find something suddenly strikes me that night!! I just email the onc’s secretary and she’s great at passing messages on. Sorry can’t help re the heart/herceptin bit cos I am HER-
Do join us on a Tues night chat - the most wonderful bunch of ladies you could imagine and I am priviliged to know them and have them to turn to if I have a query.
I have read and re-read all your posts and have made notes of the sort of questions I want to ask at the appt on monday if it all goes pear shaped. It’s weird cause I sort of already feel like I know it’s not gonna be good news. Is that normal or am I totally getting ahead of myself??
My family and friends are great but basically they are their usual optimistic selves. I am obviously very worried but almost feel at times that I get brushed off as though no one wants to acknowledge the fact that it could quite possibly be bad news on monday. Everyone is looking on the ‘brightside’ and I feel like a right miserable cow by not sharing in their optimism. Does this ring a bell with anyone??
Another person butting in. I’m in the same position as you. I’ve been well for nearly 18 months but went to my GP recently with an unexplained pain in my hip and thigh. I had an x-ray 2 weeks ago which showed some erosion. I wasn’t too worried about that since I’m 50 years old but the consultant wants to do a bone scan. Now I’ve got it into my head it can’t be anything else. My scan is due tomorrow. I know I won’t get the results straight away but I’m really hoping I won’t see that look on the radiologist’s face. I had that experience when I had an ultrasound scan before my original diagnosis was confirmed. I drove home from the scan in tears and had to pull off a dual carriageway until I could calm down enough to drive. This time my husband won’t even discuss the possibility. I haven’t told my sisters as they’re still grieving for my mother who died of lung cancer in July. I know exactly how you’re feeling and it helps to know you can voice your fears to people who won’t judge and won’t dismiss you.
thanks so much for getting in touch. It’s always reassuring to know we’re not alone in this journey. I wish you well for your scan tomorrow and I really hope the news is good. I know exactly what you mean about radiographer’s reactions. The lovely lady I had for my bone scan last week was great but an actress she was not!! Nor were the staff when I had to go round for additional xrays. By the time I got home I was in floods of tears!!!
I have everything crossed for you. Be sure to let us know how you get on,
Princess18 you can hardly be forgotten - I think you made quite an impression around the forums back in '07. I am so sorry that it looks like it is back again I think you are being very realistic and I have always found anyway that I prefer to look at the worst it can be then anything else is a bonus!! It is strange how our nearest and dearest tell us all will be well etc. I think they actually do realise how serious things are and it is almost an automatic reaction to try and reassure us. Sometimes though it is nice to find someone who will be honest enough to admit that things may not be well don’t you? I hadn’t realised how serious your reaction to herceptin had been. That must have been so hard to come to terms with. I am sure your team will be taking extra special care of you :).
You probably know my story so I wont go into any great detail. Just to say that after my first dx in 1990 and several recurrences after that I was dx with extensive bone mets in 2002. They didn’t discover I was her2 pos until 2004 but I was put on bisphos. straight away on bone mets dx and although things got a bit worse for the first 3 mths, it stablised after that and for nearly 12 years now has stayed that way. I do have a lot of pain probs now but that is down to a sneaky tumour growing alongside my spine!
Jan wishing you all the best with that scan tomorrow. If I wished one thing with our treatments - realistically! it would be that we we could get results within 24hrs. The waitng is so hard isn’t it?
The bone mets threads we have here are so good in the way we can support each other and know we are not alone.
Hi Kelly,
I’m another one who remembers you when you used to post.Your diagnosis was the year before mine.If i remember rightly you have had a scare before and that turned out ok,praying you get the same outcome this time.Glad to see you have been given some helpful advice should you need it,take care and i hope for the best outcome for you.
Jan i had x rays earlier this year because of pain in my thigh and i was referred on for a bone scan and like you i was sure it was because they had found something.I got in such a state i ended up on diazepan.Thankfully the bone scan came back ok.The pain went for a few months but has returned again,i was then refered for physio.The physio said that my x ray had shown something up that if i didnt have a previous history of cancer wouldn’t have warrented a bone scan,but because i do protocol meant a bone scan needed to be done.Good luck
Tracey x
I fully understand just how you are feeling right now. But you sound as if you are in good hands and they are doing all the proper tests so that they can get all the information they can before they decide what is happening to you and if or if not the BC has spread.
I am “Val” mentioned in a previous post above and I have had bone mets for over 12 years now. My prognosis was not good but I am glad to say they got their statistics wrong! No need for me to give you all the details and the ladies above seem to have given you a few pointers. If you can please try to take someone with you because when getting results as I often forget something by the time I get home…now what did they say???
Just to let you know that if you do have bone mets we have a fantastic crowd of ladies on here and we all support each other through the good times as well as the difficult ones.
JAN, all the best for your scan and I hope it is good news for you too. Let us know how you get on. Hugs, Val
I found out today that my HB is low again. The cannot fit me in for a blood transfusion tomorrow when I go for my Zolidronate infusion. So that is another hospital appointment for next week to come. I am also going to have the “floater” in my eye checked out with my Optician tomorrow. I spoke to my Consultant about it on Monday and she told me “floaters” can be a side effect from some medications. But it would be useful to have my Optician check me over as the test he does can be very useful. My Consultant doesn’t think there is anything nasty going on…just wants me to have it checked with their wonderful machines. So a busy day tomorrow. Hope you all have a peaceful weekend and have something nice to do, to escape from all this hospital stuff. Take care. Love to all. Val
thanks very much for responding to my thread and sharing your experiences with me.
Dawn - I remember you have helped me a great deal in the past and I’ve gotta be honest I was hoping that you would see my thread and post!
Val - the fact that you and dawn have been living with bone secondaries for so long is really uplifting to me. I was sort of thinking that if mon’s news is bad I wouldn’t be around for much longer but you have certainly showed that is not the case at all.
Thanks again ladies,
I hope you all have a nice weekend, mine will involve a lot of alcohol I expect!!!
Thanks all for your support. Scan went smoothly with no whispered conversations or worried expressions so I’m hoping to sleep better for a few nights at least.
Val, I have a lovely friend who is an optician. She has those amazing machines and has been examining my eyes regularly. I asked her about new floaters that I had noticed and she says the steriods we take can cause floaters and cataracts. I have a slight cataract in my right eye. It’s not affecting my sight. She says often they cause no problems but should be monitored so you’re doing the right thing.
Tracey, thanks for the reassurance. I’m sure it is just protocol, especially since I got through it without the dreaded tell tale expressions.
Dawn, you’ve been living with this for so long. You’re such an inspiration and you must have been through the waiting yourself many times. Sorry to hear about your spine tumour. I hope it isn’t affecting your mobility. I’m sure the constant pain must be hard to bear at times.
Hope you all have a good weekend. I’ll definitely be having a small amount of alcohol tonight too Kelly.
Hi ladies, can any one help. I went to docs today for results of blood test for cholesterol,all ok, but when I got home I noticed tha t my alkaline phosphatase was raided normal range = 30 to 150 mine was 159…so phoned doc who said nothin to worry about but will send me for another test. Just googled and this can be a sign of bone mets, can anyone help with this, im nearly 3 years along from loblular stage 2 grade 2 mx with reconn, an touch wood feeling fine,until today .back to worry mode for me
I think you are being very realistic and I have always found anyway that I prefer to look at the worst it can be then anything else is a bonus!! It is strange how our nearest and dearest tell us all will be well etc. I think they actually do realise how serious things are and it is almost an automatic reaction to try and reassure us. Sometimes though it is nice to find someone who will be honest enough to admit that things may not be well don’t you? I hadn’t realised how serious your reaction to herceptin had been. That must have been so hard to come to terms with. I am sure your team will be taking extra special care of you :).