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Bone mets - please join in

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Re: Bone mets - please join in

Hi Rusty

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 :-)

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Re: Bone mets - please join in

Hi all

 

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. 

 

Linda

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Re: Bone mets - please join in

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 Smiley Happy

x

Rusty

 

Community Champion

Re: Bone mets - please join in

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.

Nicky x

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Re: Bone mets - please join in

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)

Member

Re: Bone mets - please join in

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... 

 

rusty

 

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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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...

 

breathe!  

 

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

x

rusty

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Re: Bone mets - please join in

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 

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Re: Bone mets - please join in

Hi ladies

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?

Becks x

Community Champion

Re: Bone mets - please join in

Hi rustyharas

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.

Good luck

Nicky x

 

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Re: Bone mets - please join in

Thank you gaybar,  on way to see oncologist now.  Feel sick.  Husband is worrying about parking... 

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Re: Bone mets - please join in

Just to add. I can eat normally but have to drink plenty of water.

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Re: Bone mets - please join in

Hello,

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.

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Re: Bone mets - please join in

Thank you people.  So you both had CT scans, all good information, thanks

and no i don’t think I did anything wrong, lovemama, in fact pre the original diagnosis my friends would say I was the healthiest person they knew.  Vegetarian for years, bit of a health food nut in fact, exercised, didn’t smoke..  even more so after diagnosis.  

 

(I did forget that I wasn’t supposed to eat , on the morning of the CT I went and made myself a piece of toast on autopilot... and then had an hour’s agonising about whether they were going to tell me I couldn’t have the scan.  But it was ok.)

 

I havent told my husband yet but it’s going to be no sugar, no alcohol, and even less processed food in this house... at least that is something I can control.  He already has to get his meat fix in on business trips, now it’s going to be chocolates and crisps too, haha.

 

Just realisised that sounds terrible.  No I don’t forbid meat in the house, just how we’ve always managed it.

 

Rusty

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Re: Bone mets - please join in

This is my second time trying to post. The last one was lost. 8-(

Hi Rustyhares.  I was dxed bone met in Aug last year. A dot shown on chest x-ray. A leison shown on bone scan. A leison with ~1.5cm (forgot the exact figure) desruptive on both vertex shown on chest CT scan. Having 8 cycles chemo. CT scan after 4th cycle, 2 leisons on adominal linings disappeared and sternum is healing. Requested radiation and was rejected. My current oncologist told me my previous oncologist (left the hospital after my 5th cycle) believe the chemo is able to clear my last leison on sternum. No sharp pain but  dull shoulder pain and come-and-go chest pain. By the way, did you do something wrong (like me, took high dose bee propolis+soy milk for 1 month) before the CT scan 

My first diagnosis was in 2011. At that time, my oncologist told me  tumor marker test was showing ZERO.  

PS. in Hong kong , one oncologist consider cure if no recurrence in two years for triple negative, 5 years for ER+ HER-, 10 years for ER+ HER2+.

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Re: Bone mets - please join in

Hello,

I come on here from time to time for a look or when something is bothering me. I was first DX in 2009 age 40 stage and grade one. It came back in 2016. Ultra sound, biopsy, CT scan, MRI and bone scan found out it had come back. A huge mass at the back of the sternum, one in my neck and in-between the 5th and 6th rib. Inoperable but treatable. Six months of chemo and the huge one at the back of the sternum and neck NED and the one inbetween my 5th and 6th rib has shrunk and stable. CT scans and blood every 3 months show all is stable and letrozole is doing it's job. I'm nearly 3 years on from secondary DX. Hope some of this is useful. Wishing you all the best.

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Re: Bone mets - please join in

 Doesn’t seem like much activity recently,  anybody still on here?  Just been told today results of chest CT that I have bone mets in my sternum (went to my gp with sharp  pain in chest, had it a few times, in various places, came and went.  Didn’t believe it could be cancer) 

appointment with oncologist tomorrow, I’d like to know what scans people have had to start off with  and why - I read that CT scans don’t show tumours smaller than 2cm, is that right?  Does  a PET  scan show up more?  

 

I want to make the most of my appointment and I’m the sort of person who feels better the more information she has.  

 

Oh and I’m 54, diagnosed with BC originally 2010, chemo, rads, tamoxifen.  Told me I was lucky, I’d found it early.  My breast surgeon said I’d still be here when I was 80.  (This is maybe one question I don’t want answered at the moment.)

 

And I haven’t even begun to think about how I can tell my children, my eighty year old mother and my two siblings.... my best friend who was a fabulous support last time is dealing with her sister having terminal (secondary bone) cancer at the moment.  I do feel a bit alone...

 

 

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Member

Re: Bone mets - please join in

Please, i have one more question. Do you know, why meta was not seen on normal lung RTG, but PET/CT show something on lungs?
Member

Re: Bone mets - please join in

Thank you soooo much bonareinsis!!!!! I tried look internet, but i didnt manage to find so great picture.