I just wanted to add a message of support as I know what I was like when I was waiting to find out my treatment plan for secondaries, I kept checking the forum to see if there was any information I could use or would help. Well that was 11 years ago (yesterday in fact - a lousy April Fools joke!).
I had my diagnosis of bone mets in 2008 and a further liver mets diagnosis in 2013. I have been on various treatments since then, some more invasive than others. I am also hormone positive so was on Tamoxifen after my primary and my secondaries showed up whilst I was still taking it. Other hormonal treatments work in different ways to Tamoxifen so it is still possible to have those even though Tamoxifen is no longer effective. Depending on what your scan show your oncologist will recommend the right treatment for you. We are all different and some of us have different treatments at different times, there doesn’t always seem to be a set path to take. I hope after tomorrow’s appointment you have some clear answers nd know what treatment you will be on. Do come back nd ask any questions, someone is bound to be able to help. All the terminology is difficult to understand at first so, again, ask us any questions if some things aren’t clear.
Hi ladies. Wishing you both well as you wait for results or treatment plans to kick on. I have been dealing with bone lung and liver mets for a few years now and I just want you to know that it's very doable.
Best of luck Pxx
Sorry I don't know much about bone and liver mets. I have lung mets. I don't know how long it will take treatment to kick in and help. If you need to address the pain before your appointment give them a call.Normal treatment is either hormonal treatment or chemo. Then they usually give you a bone strengthener. Sometimes some radiation. Welcome and good luck. FF
Hi Ellie, my heart goes out to you, I have a bone scan tomorrow and am terrified I get the same results. I have no idea how to help you feel better but just wanted to let you know your not alone. Big hugs xxx
i was originally diagnosed in 2015, had mastectomy and full node clearance. I've just been told I have secondary in bones and liver and I'm gutted, don't know how to deal with it. I have app this week with oncologist to find out what treatment they are going to offer me. I take tamoxifen already and have done since I was first diagnosed.
can't believe how painful my bones are but it's the feeling of pressure under my ribs that's worst which I assume is my liver.
i was a member of the forums when first diagnosed and it was good to have people in the same boat and give support.
We Hi all and thanks for the welcome. My first line treatment is letrozole, abemaciclib (which at some point I will learn to spell without having to look it up!) and Denosumab. Started Friday, now playing the waiting game. It’s so hard knowing you have no control on whether you respond well or not.
but still feeling ok so far. I am back at work and still doing all my usual hobbies. Tired, but 2 weeks of terrible sleep don’t help there! Hoping that will improve a bit now I have started treatment.
i hope you are all doing as well as can be expected, and those with children are able to have a special Mother’s Day.
Thanks Bon! I'm OK. Just tired of health things! Every time I think I'm through issues and might also have finances headed in the right direction another thing pops up plus more appointments. Yesterday was my day off work and I told myself I wasn't handling anything medical or this weekend either! FF
Hi Kess, welcome to the forum, You will find lots of advice/support and also a bit of a giggle sometimes too!!
You will feel a lot more in control once you have a treatment plan in place, good luck, keep us posted.
hugs Janette xx
Kess, Welcome! I hope you find some support and comfort here. It is wonderful to have a place to vent where you are truly understood and celebrate when you have good results. Once you get your Plan of Action "POA" you will start to feel more in control and able to start to move forward. I've had mets to the lungs for 13 years. I live in the states, Pennsylvania. About an hour west of Philadelphia. Let us know what they have decided for you. Good luck. FF
Welcome to the thread, kess. You will certainly find support and info here. I am sure things will improve for you once you have your treatment plan tomorrow. And I hope your onc will take time to discuss it all. Take your questions, whatever they are! Use any BC nurses or Macmillan nurses you have at your unit. The onc will have talked about you at a group meeting to arrive at the best way forward. Do come to these threads if you have questions about the chemo, etc. There should be threads specific to your treatment, but this thread has visitors with lots of experience. Don’t be afraid to ask anything, and do express how you feel too. It takes time to adjust. You will.
good luck for tomorrow. Do you have someone to go with you? Give them a pad of paper and a pencil! I always take one of my wonderful friends. They often ask questions, or ask for spellings! We usually go over it all afterwards.
Thanks for your hello, ff, and again for reviving the bones thread. I always thought the ‘bones’ title didn’t eventually apply as it used to be a general place for anyone to join in, for any reason! Of course bones are the most popular destination for BC, but there have always been visitors who are bones free. All welcome! For a moan, a laugh, or a chat, or advice or support. Sharing so important. Lots are regular readers.
i started with bone mets, ff, but a liver spot grew and spotted in July 17. I went to herceptin because of one HER2 biopsy, which didn’t work, so was referred for ablation. Long story, which I finally described on the separate ablation thread.........dear Nicky a visitor there and always so informative and supportive. Anyway an ultrasound in a&e where I went for liver pain post ablation, showed hydronephrosis...........L kidney enlarged. Obvious on a ct but never mentioned before, although subsequently onc said he could see it on earlier cts. Hm. I was given the stent while in a& e. I thought they were short tubes like an artery stent. No. They are long tubes with a curl at each end. One curl in kidney, one in bladder. To drain. Enlarged kidney means urine backing up. I didn’t know I had it for 2 months, but it has since become increasingly uncomfortable, and painful, at the ureter/exit end. It must have moved. I am having it replaced or removed.........done under x Ray.........next Tuesday by a lovely consultant urologist. He doesn’t like leaving them more than 3 months, although some leave them for 6! Hoping he will see improvement...........apparently kidney function/bloods have improved a lot.............and remove it. I have been drinking loads so that might have helped. Never before thought about my fluid intake! Hope that kidney function improvement will persuade him to remove it, at least for a while. I’ll be waving my flag!
Sorry to ramble, but just sharing info. If I hadn’t had the US in a&e I wouldn’t know about the hydronephrosis. Zero symptoms. Which surprised them. Kidney function ok but getting low. R kidney seemed fine & doing all the work. A later pet scan lit up the lymph nodes by L kidney, squeezing the urethra. What a strange journey, and what a learning curve! I can’t comment on your situation ff, but I am learning that ct scans don’t show everything, and they need careful interpretation. On the other hand they are one of several tools.
All the the best with your root canal, ff. if there is no actual tooth removal it will be ok. Crowns are fine too. And fingers crossed with your other ‘symptom’. We continue to be ordinary human beings and not everything is related to our dx. I hope it passes. I have had a sore mouth.......top palate.....for a few days and assumed it was cape, but with bonjela for a few days it is gone this morning! Might have happened anyway!
take care. No sun here in buckinghamshire this morning. Where has spring gone? Love to all. A message from dear Carolyn on the cape thread today! Am off to say hi to her. She’s in the garden!
Hi all. I have been reading this thread after finding out a week ago my cancer has returned (primary dx 2014) with spread to pelvis and clavicle. Still waiting for a couple of scan results, but so far organs are clear. However, there is a large cancerous lump deep in my pectoral muscle which is concerning them.
I will find out tomorrow what treatment is planned, but they have suggested that due to its aggressiveness, it’s likely to be chemo to start even though it’s strongly hormone positive.
struggling to take it all in, particularly because I feel well right now. Coping ok in the day mostly, but the nights are pretty much a write-off...
You are welcome Mo! I really thought it needed to happen. Sorry you are uncomfortable with the stent. I knew of them but not much about them. May I ask why you needed it? My blood work shows some problems with my kidneye unless I was dehydrated. Are retesting the end of April. We shall see.
I was supposed to have a root canal today and it got moved to next Monday. Two weeks ago I thought I broke my wisdom tooth but I had lost the filling. Then after that I have another issue to take care of. I don't want to say what it is. I'm giving it another week to go away, if not then I need to see a Dr. Never ending!
Putting you on my hand holding list!! Hugs! FF
Hi ff! Just to say thanks for getting the bone thread going again! It certainly used to be a great chat shop as well as a place to share experiences. Hopefully it will be a drop in centre again. It was always a great place for newbies, whether bones or not, to find confidence and a cheerful response!
For me I’ve just started cape......I think the word is ‘coping’........but my worst se so far is my kidney stent. Didn’t know I had it for 2 months, but now very uncomfortable. Removed or changed next week. Praying for removal. The things we have to adjust to! I didn’t even know about kidney stents before! Love to everyone..........sunshine here in bucks! Spring?
Janette, The MRI doesn't bother me. I've actually fell asleep in it before. Only time I ever dreaded it was when my back was broke and that was bc it hurt.
Hope they don't take long giving you your results so you can move past it!
Remember, when you are listening to the crashing and banging, an MRI shows up more detail and doesn't give you a high dose of radiation.
I wish there was someone who took responsibility for veins. They seem to be nobody's problem.
Morning ladies, thank you all for your replies, hopefully I’m still “Stable Mabel” but it’s helpful to have a little info/knowledge on new treatments beforehand. Well I had my full body MRI on Thursday evening, flipping eck not the nicest of scans, I was in there for an hour and fifteen minutes, the noise is horrific!! Then I had to go straight to the next department for a CT where as per usual they couldn’t get my vein, that was a long evening at the Christie but these things have got to be done haven’t they.
Hope you all have a lovely weekend.
hugs Janette x
If you have to change meds it could be Exemestane which is a steroid hormonal. A tablet per day and it kept me stable for just over 3 years.
good luck with the scans
Nicky, It was awesome they could resection your liver. I hope it lasts forever! I am glad I got the thread started again! FF
Yes, well done FF, it was the most popular thread wasn’t it and we all used it to update or ask questions whether we had bone mets or not.
As an update from me I had a liver resection last April and so far no liver lesions have appeared since, however I’ve just had a CT so maybe the little critters are going to make a grand entrance again. Bone mets are still stable. Still on Fulvestrant and Denosumab, which is by far the easiest treatment I’ve had in years. Just fairly quick injections every 4 weeks (Denosumab every 8 weeks) so I’ve enjoyed the freedom (knowing it will change at some point)
Janette, My path with drugs has never been the same as anyone else. Sometimes doctors decide to just give you another hormonal, sometimes they decide it's time for chemo. Who knows what they will decide. I'm on E & E. Have you had that? Hoping you can stay on your treatment longer. Fingers grossed! FF
Hi Kate, I’ve already had tamoxifen when first dx with mets, was only on it for about 15 months then switched to letrozole.
Hoping the back pain is something and nothing 🤞🏻 We always get a little twitchy around scan time don’t we!
will keep you posted.
Hi Janette, I believe it could be Tamoxifen if you haven’t had that before. Good luck with your scans and fingers crossed that your pain is not progression,do you think it could be side effects of Femara?? Please let us know how you get on, Kate x
Hi ladies, thank you FF for getting this thread going again, I haven’t posted for a good while now but do keep checking in.
since bone mets dx in 2014 this thread has helped me enormously!
Anyway an update from me, been on femara (letrozole) for 3 and a half years now and fortunately it has been my best friend so far but over the last 6 months my tumour markers have been slowly creeping up again, they initially went down to 17 but in January they were 37 but onc said she wasn’t concerned because they were still in range, however I am getting more pain again now in my back (mets in hips, ribs and spine) so slightly worried that letrozole is coming to it’s end of life for me and maybe it’s getting to be new treatment time!! Anyone know what the next line of treatment is?
I’m off for 3 monthly CT today and also a full body MRI, radiologist recommended MRI now in place of bone scans.
Hope everyone is keeping well,
hugs Janette x
Couldn’t agree more Kirky but just to add..and for a few months afterwards.
As I’ve posted previously I had problems following dental work even though I stopped Denusomab for three months prior and it was almost 4 months after by the time I re started injections.That said, luckily everything healed but the Maxillo Facial consultant was really adamant that, while agreed about having the break in treatment, that Denusomab stays in the system for much longer and also questioned the frequency of the injections. In her opinion said 3 monthly was ample because of the long time it remains active in our bodies. Also, my hospital recently changed their protocol to 3 monthly due to research findings. I don’t know but would guess that having less in our systems would help to reduce the risks, and seems like it still provides the benefits.
Good to see this thread active again...thank you FF! Kate x
Many moons ago when I first was diagnosrd with bone mets, I was very active on this thread which I hear fron BCC is the longest running thread on tbe forum.
One thing after another I posted more on a Facebook group but I have been reafing all the posts (well, most) through my email alerts for years.
I have bone mets was on Herceptin for 6 years, kadcyla for one an now on Capecitabine which is doing the tricks. My tumour markers are back in the normal range.
Any way, all this ramble to say, I will make an effort to post here as well.😀♥️
Hi. I had a loose tooth which eventually came out of its own accord. A very rare but nasty se of Denusomab is osteonecrosis of the jaw. Basically if you have any invasive dental work that is below the gum line you should stop the Denusomab a few months before. That's why they recommend you see your dentist before you start treatment.
what exactly are the tooth issues please?
my oncologist rushed through the Secondary BC consultation, I was in shock in retrospect, but I do remember him mentioning something about seeing a dentist or telling the dentist about denusomab bit he didn't explain why.
Kirky, Last year I broke 2 vertebrae hiccuping. I had to have them pinned and cemented! Amazing how easy we broke! FF
I felt like I killed this thread :-)
Well, i stopped taking my Denosumab last April because I was having tooth issues. They resolved in October and I was going to go back on the injections in December when guess what? I sneezed and fractured a verebra!!
So if you were wondering if the Denosumab works, I think it does!
The fracture healed after about 6 weeks (luckily no cord issues) and I had a fraction of radiation 1st Feb just to make sure and since then I've been fine, thank goodness.
So that's me. What's been going on with everyone else?
Yes this thread has been helpful to me in the past. It would be good to see it back. I’m still feeling fine and working full time a year on from de nova diagnosis. I always loved the sea but am relishing it more and more. The last year certainly hasn’t all been bad. I took the advice to enjoy things: the sea, the sunshine, family x
Trying to see if we can get this thread started up again. We used to all just hang out here for a chat. Miss those times. FF
Re ESA - when/if you finish work you can claim based on NI contributions as long as you've paid enough stamp in the preceeding 2 years. It's not means tested so hubby salary/savings don't matter. Depending on circumstances can be up to £110 per week plus you will continue to get your stamp paid towards old age pension.
Would buy a couple of text books :-)
I don't tend to post much now on bone mets just thought I would and I give some encouragement for the newbies.
I was diagnosed with breast cancer and bone mets at same time August 2009 had mastectomy chemo and rads. Finished treatment April 2010. For me I went back to work June that year. It was a gradual return to work. I reduced my hours to 31 hours per week which I carried on until I was 63. By going back to work took my mind off my situation . I have had various treatments over the years . Letrozole for 4 years. Everolimus and extermestane for 3 year 8 months . Cape then pacitaxil now on tamoxifen . Can't believe it will be 10 years .
Hope it helps.
Anne, no I didn’t feel bad, please don’t think you said the wrong thing. I accept quite happily that people are different, I just meant I couldn’t imagine, myself, being able to work.
Now I feel bad about what I said.... we could go round in circles with this. Please accept a big hug from me xxx
And thank you Nicky for your reply too. I will maybe look at esa at some point but we may have too much savings, we’ve tried to put some by for various things, but I guess this is one rainy day we could use it for. I am sure there are people for whom finances are more of a problem. I have a husband with a good job, I shouldn’t complain.
Talking of husbands mine stayed up with me last night through a bad pain session till 3am. We played that game of who can remember the names of actors and characters on old tv programmes. We went from Pride and Predjudice to Banana Splits through Bagpuss and Thunderbirds.
Believe me, I know how lucky I am in this area at least
Hi becket, I don’t think there is a ‘classic’ set of symptoms that warn you of mets (secondary BC) so it’s difficult to say what your ache is. It is worth having it checked out if you’re really worried so it’s good that your BCN has organised that for you - even though you probably don’t want it! We all know what that feels like, we call it scanxiety on here!
rustyharas, again, a full body scan is a good idea but comes with its own scanxiety. And, again, yes we all have those wishes of getting some good news for a change, who wouldn’t? As something that may help I am currently on much better shape physically and mentally than I was 6 years ago when I was told my bone mets had spread to my liver. I actually have less BC in my liver than I did then and my bone mets have remained stable. I was also suffering from heart failure, caused by FEC chemo, but have had amazing treatments through the NHS which have sorted out my heart so it’s back to normal and removed my liver mets (I had an operation last year to remove them) so it is possible that it doesn’t always get worse, sometimes it gets better. As to whether you work or not that is obviously down to the individual. Anne30 is doing great after the huge shock of her diagnosis last year. I also worked through chemo for my mets some 11 years ago but my job allowed it and I coped well with the chemo side effects but we’re not all able to. I did give up work when my liver mets were diagnosed as I couldn’t continue with the type of job I was doing. It is worth considering looking at benefits such as ESAif you have to stop work or cut back on hours. These can help with financial gaps caused by not working any more and you can usually get advice from MacMillan about if you’re entitled to claim.
I didn’t mean to make anyone feel they should work or feel bad because they can’t! I’m on Ibrance which is oral chemo and so far the side effects have been okay but that could change any day. I was trying to be encouraging - suggesting that you can carry on with things. Sorry if it came out the wrong way! My work have also been very accommodating and have minimised the stress I’m under. I should stick to saying that I sympathise with you and wish you well (which I do)
I’m in awe of people who work through treatment Anne - chemo wiped me out for the full 12 weeks and for months afterwards. And a year after that before I went back to work.
I’m considering my options re work. I never went back full time and may cut it down some more. We are about to transfer to a new system which I have to implement but I could do without the stress (I wasn’t looking forward to it even before this). I’m going to have to negotiate that one I think. We could manage on one salary especially when the mortgage finishes next year, but with two kids at uni it would be a stretch and make a difference to how much we could support them.
But I'm probably thinking too far ahead...
I recognise that feeling. I was diagnosed with primary and bone mets nearly a year ago. I couldn’t read eat sleep etc. I had two weeks off work and started treatment. I’ve been back at work every since. I’m coping with the treatment and am in no pain. Obviously scans make me anxious but I’m enjoying life as best I can x
Hi Nicky thank you so much for your long post. You are right I just want to start treatment. I’m going to have a full body mri, which sounds like it’s a good scan from what you said. When my gp told me it was mets I cried because I might have only 10 years, now I’m scared because the scan might show it’s worse than that. Is horrible waiting but I don’t want bad news - I only want good news (is that so unreasonable? Come on docs, tell me something good)
Original CT shows mets in sternum and a couple of ribs, one vertebra in the spine and the lymph nodes in the chest.
Every twinge is a worry and the stress has given me a headache which is causing me even more what ifs...
Got me some Epsom salts this morning, gonna go home and have a bath.
Can’t concentrate, can’t read, can’t eat... so grateful for this space to sound off
Hi becket I am sure everyone is different but my bone pain came and went, one night I had a pain in my chest like I’d been kicked by a horse, that was when I went to the gp, but I’d also had smaller pains I had ignored as just aches and pains, which may or may not have been early signs. I am where I am, I try not to think about it. X rusty
I finish 5 months chemo at the end of Nov 18 and had right mastectomy on New Years Eve. It was a grade 3 triple negative tumour.
All was good but I'm sufferring with heavy aching in my right shoulder. BN is arranging a bone scan but really worried.
What does it feel like if it has returned? Am I worrying over nothing?
Sorry you have to find yoiurself in the place that none of us want to be in. Unfortunartely breast cancer is a crafty little bugger and can come back even when you've been given an excellent prognosis after treatment for primary BC. The same thing happened to me. Great prognosis with primary, low grade, found early, no lymph node involvement. Hey presto nearly 5 years on from that I found I had bone mets. I just wanted to add some support as it is a horrible time that you are going through, waiting to find out what happens next.
You will find on this part of the forum that many of us are living well with bone mets, I'm currently coming up to 11 years with them (as well as now having liver mets although they are a different story). I think this thread has gone so quiet due to the change in the forum - no one can find it! And when they do our posts get lost, grrrrr. There are many of us out there with bone mets and another reason this can go quiet is that unkess things have progressed or changed we often are not posting, and tend to do so more when a change int reatment is needed.
One thing you will find out is we do not seem to all have the same treatment on initial diagnosis of mets. This will be down to our receptor status and also sometimes down to our oncologists view. It can be chemo or 'just' hormone treatment (if we are hormone positive) or a Herceptin based treatment if we are HER2 +. Sometimes targetted radiotherapy is also used but this tends to be when there is significant pain. Most of us have had a bone scan which does give a clearer 'picture' of our bone mets but quite often this isnt repeated and can be used for diagnostic ourposes only. You're right about CT scans not picking up very small mets, MRI's are more accurate and I'm not sure about PET scans as my hospital doesn't use them. Most often, along with your chemo/hormone/herceptin you will also be given a bone strengthening treatment. Most of us are on the newest drug, Denosumab, but others are on infusions or even tablets, agsin, this will depend on your oncologists choice to some extent. Also, as this is your first diagnosis of mets (and therefore first line treatment for mets) you may be given additional, newer drugs alongside whatever treatment you go onto.
Almost all of us found that once we had a treatment plan in place we were more able to adjust and cope with our secondary diagnosis. Take your time it is a huge shock for you and your family. Please come back on here with any questions you may have and to get support from fellow SBC ladies. Hopefully some of the other longer term members will come along to offer their advice as well.
Yes I have thorax and abdomen CT scan every three months with contrast. Along with full blood count for, bone profile, liver and rental. Wishing you all the best.