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Bone mets - please join in

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Re: Bone mets - please join in

Thank you for sharing this with me. It was brave and helpful. I was a very sociable person but I don’t feel able to see people. Now as I blame myself for all the pain I’m causing. I even blame myself for the trouble the doctors are having. Everyone told me too that it wouldn’t have spread. The schoo nurse included. Clearly they were just being nice. I have three small areas on the bone but at the first consultation the nurse kept saying that once it’s out it’s hard to contain. As you can see I’m not being brave and positive I’m just allowing myself to be overwhelmed by feelings of regret and worthlessness. My partner says I need to believe that the treatments should
work. I’m having chemo bone injections and hormone therapy. Thank you again for your brave post. The ladies here are knowledgeable and encouraging. Best wishes Anne
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Funny face

I can't believe it but gave my easter Egg to hubby yesterday ..up to a few weeks ago I would have had it under 24 hour guard ..mine all mine !! Seem to fancy savoury stuff more now.
Seems there is a bonus to E and E after all.

Snow ? Can't believe it but we have had too much rain here but promised sunshine for a few days now ! ☺☺☺☺☺
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Hello Julie

Welcome to the forum ..I hope you find lots of support and kindness here to help you through it all. It's a real kick up the rear end to get dx with secondary bc ..somehow with primary I just got on with it but this time round. .it's different .
Hugs xx
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Carolyn, It is a killer that E & E ruined chocolate for me, too. Today was income tax due date in the US. Then it got cold and started to snow. Luckily no accumulation.  Winter doesn't want to give up. Trees are blossoming, though! FF 

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Hello Anne, this is my 1st post on this forum but I wanted to share my story with you. Like yourself I jumped straight into stage 4 BC with whole spine, ribs, pelvis, hip and skull mets. I felt guilty as I hadn't gone to the gp earlier and my dense tissue was only discovered at a routine mammogram though I was told it had been there a long time. I put my back ache down to my job and rib pain down to a strain. I often wonder would it have made much difference if I'd took more notice of my body instead of 'getting on with it'. But hindsight and regrets are no good. After being told the chances of my BC spreading would be very unlikely and rare to hearing the bone scan results was a roller coaster. My diagnosis was in Nov 2017 and I have completed 6 rounds of EC chemo with luckily few side effects and subsequent bone scans have shown it chemo has been effective. I have recently started letrozole and palbociclib and continue with denosumab injections and Adcal tablets. I do ache and suffer hot flushes but am doing pretty good and am enjoying make g the most of life. I do get a bit fed up and angry occasionally but try to be bright and positive and look on the bright side - like my hair beginning to grow back!! I meet alot of friends and plan trips out, meals out, coffee catch ups and mini breaks and see as much of my family as possible and value all my friends and family and other sufferers whose support it is invaluable. I hope you are able to get through your bad days and enjoy the good ones. X
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Hi all
Yes looking forward to some sunshine🌞. We went to the lake district in our motorhome last summer it's so beautiful there - never been to the peak district one for the list though. Hoping to tour Europe in the van in june pending scan results.
Have a great time! X
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Hello tatyana

Hope the cape works for you ..lots of ladies here have been on it ages ..yes we are promised sunshine for the next 3 days here ..for some reason warmer weather does help the achy bones and gives everyone the feel good factor to do more.
Hope u enjoy your time in peak district with the camper van ..it's good to get away. ..

Hugs xx
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Hi Carolyn! So no appetite for choc is a good thing? That's what I call looking on the bright side!
Here in Oxfordshire it's dry but grey and windy and really quite cold. I hope they are right about this heatwave, we're going to the Peak District for a few days in the camper van and could really do with some sun!
I'm still waiting for the cape to show any signs of working. Not optimistic as my aches and pains seem to be getting worse, though nothing that paracetamol can't fix. Next consult with onc is 2may, then we decide whether to give the cape a few more weeks or move on to gemcarbo. Has anyone here had that?
Onc is very practical and has made it clear that if I get any worrying symptoms before 2may, I should let them know straight away. It feels quite reassuring, like a safety net under the high wire. But I'd still prefer not to fall!
Everyone, enjoy the sunshine when it comes!
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Hello ladies

See this thread has sunk down the list so thought I would pop in and say hello to bring it back up.

Hope everyone is coping with scan results and treatments ..the bain of life with secondaries but hey hoo ..we cope !!

Nothing much happening here in Devon today ..just rain and more rain....had visitors earlier so got the fondant fancies out !! When did they get so small ?

I'm on week 3 of the devil pills. .E and E. .but it's doable and the bonus ..no appetite for choc or McDonalds so hopefully I will be less of a heifer in a few weeks! !

Hugs xx☺☺☺
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Yes, not sure if this was to do with my secondary  or not but I freaked out and threw the tv remote at the wall....it broke of course!

 

one day soon after, I was going to a hospital appointment and quickly got ready, picked up the tv remote, leaving my keys on the table and rushed out...locking myself out!

 

oh wasn’t ecstatic either time

 

 

Mx

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Oh pippin we all have to stamp our feet and let it out ..my way was a bit different when I got primary dx. I was crocheting a cot blanket for my grandson but it became my focus ..I just sat and crocheted and crocheted the damn blanket night and day ..it ended up so big ..a elephant could have snuggled up on it and probably his friend as well!!
Hugs xxx
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The laughing yoga sounds great Tatyana! I love yoga and meditation and find it a life saver!
Great free app called Insight Timer with loads to choose from.
Enjoy your coffee outing Anne. Friends have kept me sane on this journey!
Hugs x
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You are so right and I love the supermarket trolley story. I can’t seem to do anything at the moment but I promise to try. I am meant to be meeting friends for coffee this morning. The yoga sound fun.
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Pippin and the supermarket trolley-- oh I do wish it was captured on video! Thanks for the laugh, Pip, it's the best medicine. And you know, the smiling thing actually works, if only for a few moments. I'm signed up for a session at the village hall next month of something called Laughing Yoga. Sounds promising, don't you think?
Anne, anything that makes you feel good, just do it. Buy yourself some flowers, go out for a coffee, go for a walk, watch Mamma Mia, whatever will give you a few moments of joy, distraction, or contentment. Every little helps.
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Love your reply Pippin!
Sat having my steroids as early as possible so they don't keep me awake !
Thanks for making me smile at 5.30 am! ! Quite an achievement!
Did you know Anne, that actually forcing a smile and breathing slowly can fool your mind into thinking all is well even when you feel like .........!
Worth a try!!
Or we can wait for Pippin'so next post!
Hugs and smiles all xxx
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Hi Anne

S _ _  mamograms! I had mine regular as clockwork and additional ones too, all normal. My primary in 2013 was an "interval one". Entirely my fault it got so big before I noticed it. Mamogram did pick up my 2nd primary (that's great isn't it) just when I thought I might have beaten the first one. Mets discovered at time of diagnosis of the second primary were actually mets from the first primary.

My coping mechanism has been distraction, work, work, work - no time to really think. At the bleak time of mets diagnosis I did have a 60 second meltdown in supermaket when I screamed my head off and beat hell out of a supermarket trolly (I can vouch that they are utterly indestructable!). I avoided the place for a whole week but then went back 'cos it is my local. I can laugh about that now.   

Pippin

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Hi Anne, hope you can see by now you’re certainly not alone!
I had a mammo at 49 and then at 51, both clear then found a lump 12 months later, with a bone met picked up belatedly on a CT scan. So have often wondered in my months of treatment whether it was missed on the last mammo. But it is what it is. I still haven’t processed my diagnosis and am waiting for counselling to help me. In the meantime I’m just going through the motions of treatment - 8 months down, 6 months to go then another scan to see what’s going on.
Hugs to you and all the other lovely ladies on here. Xx
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Hello Anne, I don't have secondary's but just wanted to add that my mammogram was clear at diagnosis too, my breast cancer was found via ultrasound and I was told it could have been 5 years before it was detectable on a mammogram which means 3 years on I could still be walking around none the wiser as I'm only 49 and not in the screening program yet. 

I see you have lots of support from our lovely ladies here and I hope once you are over the shock of your diagnosis you will find the strength with their help to move forward. Xx Jo 

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Thank you.
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Anne, it is very early days for you and it’s natural that you feel like you do. Believe me I was in a right mess when I first found out! What I was trying to say was even if you’d had your mammogram those years ago, it doesn’t mean it definitely would’ve been found, tumours have to be a certain size to be detected, same goes on CT scans. Stay strong, Kxx

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I am trying so hard. You ladies are so good at it!
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I’m another who was diagnosed straight to stage 4. I had been going to my GP practice for around 4 years saying I could feel something, not every day, but things didn’t feel right. I was already having mammograms which were clear, and they still are! Eventually after I insisted something else was done, I was sent for an ultrasound scan, that showed a small cyst, which I queried but was assured there wasn’t any blood supply and it was just a cyst...I will now never know if that was right...as I still wasn’t convinced I booked to see a different GP at the practice, she again couldn’t feel what I could but said she could see I wasn’t happy so sent me to breast clinic, and I finally got my diagnosis! 

I’m just saying that sometimes even tests are inconclusive, my mammogram was still clear on the day I was seen in breast clinic because of that I think the Radiologist only did the biopsy because I was there but again, he was sure it wasn’t anything to worry about! Thank goodness he listened to me and did it!

I’m often asked if I’m angry about it because 4 years is a long time to be told there’s nothing wrong with you, when there clearly was, but what good would that do? Yes, I have moments of what if’s but.....My Onc tells me that clear mammograms, when you have bc, are not as infrequent as you might think. My GP practice is also a very good one, it was just bad luck! 

I did all the examining and testing, so please try not to beat yourselves up and stay positive! Kxx

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There are a lot of treatments now for mets and I am trying to be hopeful. I am sure that the best thing would be to live one day at a time with a hopeful heart but it is hard to do
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I feel for you and hope very much that you find the peace which I’m finding so elusive. We have no cancer in our family either. My lovely mother in law is 86 and my parents are 80. They are so sad. Try to rest and find peace x
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Hi Anne

Like you I was straight in at the deep end never had a primary just a pain in my leg which turned out to be sbc. Anyway 1 yr in I am still angry as never had an offer of a mammogram you have to be 52 where I live and am now 52, can’t wait for my screening letter! Anyway it is an up and down journey once you get a result and treatment plan in place you feel better as there is hope. If it turns out not to work you get all the anxiety again same as waiting for results. All I can say is our overstretched nhs do a fairly good job where I live hope your will too. I work full time as much as I can and try to do as much as I can. My husband refuses to talk about the inevitable or bucket lists as he gets as anxious as me. Good job our kids are there to hold our hands. I say to my parents every day why me when they are fit and healthy and we have no history of cancer in our family but can’t change anything just carry on. You will have good and bad days but this forum helps . It may also help you to meet others in the same position if there is a meeting near you . Chin up . It will get better to cope with . Wendy x
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Thank you. It’s much appreciated x
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Anne, we all understand. We're thinking about you and sending you love.
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That is very honest. I too am so worried about my parents. They can’t cope with this but then not can I. Counselling is a good idea. I need to come to terms with where I am rather than thinking about how I got here but it’s so hard and I keep crying
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Anne, I can only echo what the other ladies have said. I totally get that you are blaming yourself. When my recurrence happened last year, after I realized something was wrong, it took me several Months before I got around to seeing my GP. Meanwhile it was getting more and more obvious, but I kept kidding myself that it was nothing really. Then I blamed myself because if I'd reacted quicker, maybe it wouldn't have spread. You know what? I'm a worse case than you, because I didn't just blame myself, I blamed my elderly parents because at that time all my energy was going into trying to sort out care for them and they were fighting me every inch of the way. I didn't blame them to their face, but inside I did.
So be assured, you are not alone in having these feelings. I promise you it will get better but you have to take it a day at a time, sometimes only an hour at a time.
Have you asked your GP about counseling? It's helped me a lot and should be available to you on the NHS, but waiting times depend on where you are. But please do think about it. I had to wait several weeks to see a counsellor, but just knowing it was on the horizon helped me to hold on.
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No one seems to be able to reassure or calm me. I can’t seem to get out of this slump. The oncologist didn’t seem very encouraging. I have three very small areas - two spine and one hip. No pain. I’m sorry O am so low
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Anne

That doesn't say you had bc at age 47 or 50 ..maybe mammo would have been clear anyway ...so don't feel guilty ..you are still young and strong to deal with all this and the treatment you are starting.
Hugs ☺☺☺☺
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I am 53. I was called at 47 as a trial but didn’t go but I don’t feel bad about that one. I was then called at 50 and didn’t go. I found the lump when I was nearly 53 and it had already spread. I feel awful. Really ashamed
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Hi Anne
Awww I have only just began to pick myself up hun, it's been about 10 months for me...diagnosed last June, had mastectomy and reconstruction for 6.5cm lobular.
Node neg, had no chemo because onco test came back low.
I've suffered so much pyschogicaly since.. but I refuse to put myself through of any more...and am intent on enjoying my life xx
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Anne

There are loads of ladies here that got dx with primary and secondary ..you are not alone. How old are you now ? How many mammo appointments did u miss ?
Hugs xx
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I have been diagnosed with primary and secondary at the same time by the way which I feel so ashamed about. It doesn’t seem to happen to anyone else
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How did you cope? I just can’t seem to cope with my feeling of guilt and worthlessness. I feel I have chosen this wilfully.
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Hi Anne

NO ONE ASOLUTELY NO ONE could have been angrier at themselves than I was at first diagnosis of primary in 2013. I hated myself for not noticing a huge lump literally right under my nose. I threw my energy into putting my affairs in order (even then!). Even that huge degree of anger does pass. I know this may be no consolation to you but I can honestly say I understand your feeling of anger completely although we all deal with it differently.

Pippin

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Anne

I have always been laid back with health ..a paracetamol girl when needed ! When I got hip pain ..popped paracetamol and thought it old age !!
Even now I don't always mention things to oncologist that I think are trivial.
My old oncologist has now retired but I always remember her saying. .not all pain is cancer related

Focus on the treatment and going ahead ..you were just unlucky with bc.
Hugs
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You are all so kind but I do blame myself. I know I need to move forward. You are all so right x
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I didn't get called for a mammogram at 50 as the system was a year behind so at 51 ..it was found and had been there for a while ..so I can't blame me but the whole system ..
But we can't go back ...have to go forward and deal with it all ...
Don't feel guilty xxxxx💗💗💗
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I hope your treatment goes well and thank you for thinking of me x
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Thank you. I think I may well be in shock. I’m frightened of the future and spoiling the present with my constant worrying. I’ve never been fat but perhaps a little chubby. Cancer has certainly sorted that out - I’ve worried a stone away! The people on this forum are all so measured and thoughtful in their responses. I suppose at some level we are all trying to understand why this happened to us. No one deserves this and it’s very hard x
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Hi Anne
It's so easy to blame yourself and early on we all search for reasons 'why"
I was fortunate enough to be picked up on a routine mammogram at 49 but still developed secondaries 4 years later. They were so advanced I suspect the mets had spread early on.
As the others.have said, it's all part of the shock and adjustment but it's best to focus on each day and look for the little blessings that come along. I have found the only way to cope is a day at a time!

Yesterday was difficult but it's gone now. Today I will hopefully be having my first eribulin in the next hour!
Thinking of you Anne
Hugs xx
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Will do.
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I agree Ann don’t blame yourself...it won’t change anything and upsetting yourself could make things worse....so leave the past as the past, draw a line and step forward into your new care plan ....l.things can only improve once that’s under way.,,,,,

 

‘’I have always been a worrier, but not once did a worry help me!

 

come and chat to us about how things go

 

M😘😘😘😘

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Thank you. Good advice x
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Aw Anne please don't blame yourself but this is something I also did - why didn't I find the lump sooner why didn't I insist for a scan sooner etc etc guilt is a normal part of accepting our situation. Try not to keep looking back as you will drive yourself nuts. Concentrate on getting through each day on taking care of yourself. There is no way anyone deserves this. Hugs x
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I just don’t seem to be able to stop blaming myself for all this and then I just cry and cry. I feel unworthy of all the kindness and sympathy because I failed to have a mammogram when I was 50 and by the time I found the lump it had spread. Now you all know you may be less sympathetic. I thought I was a responsible person. Sorry ladies I shouldn’t be burdening you with all this!
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Thanks so much Sarah xx
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Hi phoebe
So frustrating and exhausting for you - I really hope you start your treatment today and all goes well.
Take care sarah x