Hi All
Haven’t posted here for a while.I have been having problems with my upper arm and shoulder. Went for an xray which showed something, my doctor said bone islands? Just been for a bone scan today. They said 7 days for results, wanted to ask if anyone who has been dx with secondaries got a phone call earlier or did you get the results in the normal time frame. This is being done through my GP.
As always thanks to all of you on here, my lifeline in times of paranoia!!!
Cathy
Just like you I have had really bad pain in left knee. I have been referred to hosp on 27 April. The pain is quite severe and its burning and my knee is very painful to bend. I was given pain killers and anti inflammatory tablets neither has worked. I always worry it might be bone secondaries after my breast cancer diagnosis in 2006.Can anyone tell me how they were diagnosed with bone secondaries.
Thanks
Carolyn x
I’ve recently been diagnosed with bone mets and whilst waiting to find out posted my questions and had a few very helpful responses. The main thing for me was that everyone’s experience of pain and journey differed though there were some similarities between some.
You might find it helpful:
breastcancercare.org.uk/forum/bone-mets–t25136.html
Hope your results are good news. Really do.
(Its so horrid when you get new symptoms and don’t know what they are or if they are cancer related. As soon as my problems started I had my suspicions it was back… if it helps, my symptoms were mets but I’m so far, finding my treatment kind and after a while of woe am back to normalish. My oncologist was very comforting, positive and encouraging. She told my husband that my bone mets wouldn’t make any difference to my prognosis.)
Love L x
Hi Cathy
This post is so relevant to me, I literally switched on my computer after this evening’s bad news!
I went for a pelvic x-ray 2 weeks ago, because I had been having pain in my hip. I was then referred for a full body bone scan in the nuclear medicine department last Friday. I was planning on waiting 10 days for the results, then when I got home this evening there was an urgent message to phone my GP as soon as possible. I knew straightaway that it was serious. She informed me that the bone scan had shown, ‘bone abnormalities’ in my hip and shoulder. I asked if by that she meant ‘bone mets’ and she said that is what it is looking like, but until it’s investigated further she can’t be sure. She has made an urgent referral at Clatterbridge, my local oncology unit.
So I guess I am replying to say that my GP did ring as soon as she had the results! So hopefully yours will do the same!
My hands are still shaking as I am typing because it was literally half an hour ago that I got this news! _ I will post on here to try to find out some more!
Take care and lets hope that it’s not bad news for either of us!
Nicky
Hi Nicky
That’s what I love about this forum, you can always find someone who completely understands what you are going through. That sounds strange but I think it helps to know you are not alone.
I am glad you are getting an urgent appointment so that you can find out whats going on. I know I am going to be watching my phone like a hawk the next few days.
Will be thinking of you and hope it all turns out ok…
Cathyxx
Nicky - sorry to hear that you’ve had bad news and i do hope the further investigations are good… I am also due to go for a nuclear bone scan on April 27th… i’ve been having pains in my rib cage on the “good” side and left knee…
Theresa x
Hi Nicky - so sorry that you have had bad news, even though you’ve not been given a conclusive result yet. All of us secondaries ladies know how awful it must be for you, and the other ladies on here waiting for scans etc, so please ask any question that you may need answering, we are a helpful bunch I know how I felt 2 years ago when I was dx with bone mets out of the blue, no pain other than when I ran so I assumed it was a slight muscle strain. Anyway, 2 years on after chemo and now on hormone treatments I have adjusted to the new ‘normal’ and a lot of this was down to the advice and support from ladies on here. You can find out all sorts of information about treatments and real effects of those treatments etc which would be so difficult to find elsewhere from a first hand point of view. You are not alone, as is unfortunately apparent from this thread, and I’m sure we will all help as much as possible to anyone having to post on the secondaries forum.
Take care
Nicky xx
Hi guys
I have not been on this sight often. I am 2years to the day since my BC shell burst into my life and now I am back on that waiting train. I have had a pain in my hip since November and mentioned it at recent check up at clinic. GP sent me to ex-ray and its come back with something showing up. A waiting game with appointments for scan and into clinic on the 7th May odly enough I feel calm ( most of the time). I keep busy and have not told many people as I can not bear that look people give you and think your going to die right there and then. Maybe I am just in shock! Anyway thanks ladies for all your posts as it has given me support and food for thought…so hoping that a miracle can happen for all of us.
love
Elginquine
Hi Elginquine
Sorry to hear you are on this rollercoaster ride. I know what you mean about not telling people. I get fed up with putting a brave face on sometimes.
I had the results of my bone scan which didn’t show anything up on my arm but has found a ‘hot spot’ on my breast bone so now I am waiting for a CT scan. On the positive side its good because its thorough but on the negative its more waiting again for tests and results.
Anyway I will keep smiling and telling everyone that its nothing to worry about (which it probably isnt).
Its good that there is at least this forum where I can come and let off steam.
Cyberhugs to everyone waiting for tests and results today.
Cathy xxx
Hi
How long do you have to wait for CT scan? The waiting seems to have got worse as I have now reverted to being a child by counting how many sleeps it is till the clinic on the 7th. I have started wondering what i will feel if I go into clinic and they tell me ha ha only joking…will i do time for murder or will I keep hold of my emotions and say thanks that is such a relief and I really did enjoy the stress I went through I the last 4 weeks…not. Good luck and keep smiling.
Maggie
Hi Maggie
I know how you are feeling, it all seems a waiting game. I bizarrely am also waiting for a scan on 7th May, mine is a MRI scan though. I am also waiting for a CT scan on 14th May.
I had the results of my bone density scan 2 weeks ago. I saw the oncologists last week who diagnosed bone mets in my hip and hot spots in my neck and shoulder. They said that they wanted me to have MRI and CT scans asap, then see them again this week to discuss treatments, I had an appointment for Wednesday. Then the scan appointments arrived and I am having to push back the oncology appointment 2 weeks.
I am now in a panic, how far can they spread in 2 more weeks? it will now have been 6 weeks since I originally saw my GP and a couple of months since the pain started. I am just desperate for my piece of mind (and my husband nagging that I shouldn’t be waiting so long!) to begin some sort of treatment.
I will count down the days until Friday with you…keep strong! and let us know how you get on,
Nicky
Nicky. I cried when I saw post, its far too long to wait, I thought waiting 4 weeks was long enough. What do they actually mean by hot spots?
I have gone into calm mode and hope it carries me through to Friday. I have not told many people and find myself drifting off into lala land, having sureal conversations in my head. Do I mental health problems…no just NHS waiting list problems. That will hopefully soon be over on Friday when something else may begins. Its hard to keep going and staying positive but lets keep strong together and get through this bit. Fingers crossed.
Maggie
Hi Everyone, I haven’t been on this thread before, but I have liver and bone mets. The liver was diagnosed in January and after the endless wait for scans etc, the ONC casually told me that I have three ‘hot spots’ on my spine. He showed me the CT scan there were three red circles. One on the top, one middle and one bottom. Basically, the hot spots are cancerous tumours according to him. I really thought my number was up, but he didn’t seem worried at all about them and immediately put me onto the daily Bondronat and impressed upon that this is for the rest of my life (however long that is!!) I’ve come to terms with it (as much as you can) and so far I seem to be doing ok with the weekly taxotere) I have a CT scan next week, the first one since I’ve been having the treatment, then I have to see The ONC on Friday. Whether he will have the results by then remains to be seen, I shall be very surprised if he does. I totally agree that the waiting is the worst part, it’s the build up to it and the ‘what ifs’. So I shall be thinking of you all and sending you all lots of love and hugs. Everything is crossed for all of you. Dianne x x x
Hello all
I’ve been looking at this post with some interest as since all my treatment 2 years ago I seem to get a new ache each week.
However, its beginning to concern me somewhat that I have pains in my shoulder and arm (mx side), my GP sent me to physio where I had 12 sessions but these pains seem to be increasing and now I am going back to physio for a further 20 sessions. We don’t seem to be getting anywhere with it.
So far I’ve been putting it down to having the op and lymph node clearance but it does make me wonder.
Take care all and whatever treatments you’re having I hope it gives you relief and good luck to those waiting for results.
Hi Diane, I have bone mets in 5 hot spots (both ribs, spine & hip) and I am on Bondronat too - I felt devastated at the diagnosis (during my 2nd chemo) but have since discovered many of us live with secondaries for many years - 25yrs so far is the record I have heard about! Good luck with your scans etc and let us know how you get on xx
Hi Dianne and Debonair
25 Years !!! That’s the best news I’ve heard all day! What type of secondaries did she have?
With regard to hotspots I didn’t really question the ‘hot spots’ as the main emphasis of discussion was the bone mets in the hip. I just got the impression that these were less serious as they said that they would treat the hip with radiotherapy and keep an eye on the shoulder and neck. Should I be more worried about these? or should they respond to any treatment that is offered to the hip. I still don’t know what treatments I will be given, I don’t know how the hormone treatments and bisphosphorates ‘treat’ the cancer. I have been taking Aromasin and alendeonic acid to prevent osteoporosis (but I think that somebody said that these should prevent against Bone Mets as well - which they quite obviously haven’t!)
You both mention Bondronant, how is that administered and what is it actually supposed to do? I just feel that surely there should be technology/medications that can just target and ‘blast away’ any detectable areas of cancer before they spread…or is that a naive view?
Regards to all on this thread, Nicky
Hi Nicky - it is bone mets that the lady has had for 25 yrs. I take one bondronat a day - first thing, just plain water and you mustn;t lay down for half hour or take any other food or liquid - not sure why - perhaps I need to ask ??? lol. That is all the treatment/meds that I have (apart from Tamoxifen) - my onc said if there was any progress I could possibly have more chemo or radiotherapy - worse case scenario would be fractures or possibly hip replacement further down the line so surgery may occur - he couldnt really say at this stage and mine were contained last time they looked! I am having another CT scan in June which is about a year from them being diagnosed. Hope everything goes well for everyone xx Debbie xx
Hi Debbie
After all my questions to others this week, here’s something that I can answer. I take one bisphosphorate tablet once a week, so I guess if yours are daily that is what I’m looking towards when I finally get my treatment sorted.
I was told that the tablets are an acid and can damage the gullet etc if they aren’t ‘swallowed’ straight down, hence lots of water. The lying down apparently causes slower progress through the digestive tract, which is why it is recommended we stay as upright as possible. Having food in the stomach lessens their effect so the stomach needs to be empty as it is absorbed…or so I was led to believe…but that makes sense. At first I resented not having an early morning cup of tea, but now I take it before a shower, make up, preparing my lunch etc, then relax and have a cup of tea before leaving for work. I’m sure being new to secondaries I will be having to make many more ‘adaptations’ to my lifestyle in the near future…but if it buys me another 25 years it’s well worth it, well I can dream! Great news that your mets are contained…long may it continue!
Thanks for making my day!
Nicky
Hi lovely ladies
You guys have just made me feel a lot more positive about going into clinic tomorrow. Useful info you have provided and living for another 20years will do for me. Is anyone working through this treatment and my main worry is money, been a bit unlucky on the insurance front first time round and still have 3 years of a morgage to pay and no savings & little sick pay as I had a year off first time round.
Now I will get up and get on with my days.
Thanks girls you have filled me with hope.
Maggie
Hi Debbie, Nicky and Maggie,
Lovely to see all your messages and thanks for the info on the 25 years, that must be some kind of miracle, but I’ll settle for one of those anyday. I’m the same as Debbie, I take one Bondronat every morning and then mess about doing other things unti the half hour has passed. It does say on the label that you can drink water at any time, so I usually have a few sips while I’m waiting as I find they make my mouth dry. I had my latest chemo on Tuesday and was fine until yesterday afternoon when I was crippled with indigestion type pain. I get this usually every week after the chemo and because I’m on Lazoparzole for this type of pain, I’m not allowed to mix them with any other antacid prep. Anybody got any ideas??
Thanks for your good wishes with my scans next week Debbie, I’ll let you know how I get on. Peacock, if I were you and these pains are getting worse, I would insist on a scan to put your mind at ease. Better to know for sure sooner rather than later. Nobody seems to be too worried with regard to bone and spine mets, but the sooner you start with treatment the better. I don’t think Bondronat reduces the mets, I think it just contains them.
Maggie, have you applied for DLA? I didn’t know anything about it until recently, but I’ve been advised that ladies suffering from secondaries are entitled to this payment whether you work or not. It’s not means tested and it can be as much as £120 per week. I have an advisor coming out next Tuesday from the Hospital and she is bringing the forms to fill in with me. I know that some people have been turned down (don’t know how that works when they you you’re entitled to it!!!) I’ve also applied for a Blue Badge, so will let you know how that goes. I expect it will all take months to sort. Well, I’ve rambled on long enough for the moment, so will say bye for now and hope you all have a good and happy day. Lotsa love, Dianne x x x