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Bone mets - please join in

lucinda
Member

Re: Bone mets - please join in

Hi Rose

I actually went to the RM Sutton because my former hospital would not remove my lymph nodes(I replied to your other thread so will not bore you with my treatments here). I pushed for surgery because there is evidence that removing the primary helps to stop progression.

 

Dawn

Good luck with your results. I am RM Sutton on Tuesday for next cycle of capectabine so may run into you.

 

Lynn

Buffy3
Member

Re: Bone mets - please join in

Rose am treated at sutton rm. I was diagnosed July 2012 with bone mets. No surgery offered then. Am now stable and at my last clinic the onc said that removing the lump can keep you stable for longer...medical evidence apparently. I am er+ pr+ her- Am 43 now. Xxx
rose38
Member

Re: Bone mets - please join in

Hi dawn ,hope you get some good news when you get results on tuesday,,will keep my fingers crossed for you .

  i am so inspired by you 12 yrs and still going strong!  though the spine bit is very scary .

  and Helen  hope you get some answers in  june ?.  Its a nightmare trying to get a straight answer , just have to keep trying. so glad have joined this thread ,your all brilliant and really appreciate all the help youve given me.

   will keep posting. thanks .      lots of hugs . rose .xxx

Chris007
Member

Re: Bone mets - please join in

Hi Dawn - how heartening to hear you are 12 years post diagnosis of multiple bone mets. I was diagnosed with multiple bone mets in July last year which then spread to liver. I am currently stable on capecitabine with no symptoms and very manageable side effects. Long may it continue! Good health and stability to all you ladies out there. Chris x

2catlady
Member

Re: Bone mets - please join in

Hi,rose,I haven't a clue. I asked and was told there was no point as it's spread by one doctor. But I'm discussing it again with onc in June.
Helen xx
rose38
Member

Re: Bone mets - please join in

Hi dawnhc, i have read alot of your posts on here thank you replying....

im also at the Sutton Marsden, im there weds for my MRI and bone scan results although ive already had a call regarding my spine from my mri i had this week. Your mets sound simalar to mine (in the spine) ive got it in several place in my spine which showed up on a CT scan i had last week, its in my T3 T5 T6 T8, L2 L3 L5/S1  

if you dont mind me asking what kind of treatement you having?

 

 

thank you so much for replying

 

xxxxrosexxxx

 

rose38
Member

Re: Bone mets - please join in

hi helen, if you dont mind me asking why have you not had a mastectomy? was it your decision or was it decided one wasnt nessasery for you!? i am ER+ & HER- 

 

i have a mastectomy booked for 4th june but im alittle confused because its already in my blood stream as to why they want to do one so quickly and some ladies as like you helen havnet had one.... im guessing my bones in my spine are my priorty at the moment 

 

xxxx rose xxxx

dawnhc
Member

Re: Bone mets - please join in

Hi Rose I thought I would join in as well :). I have 'only' bone mets - have had it in my bones for 12 years and it was all over the place from the start. All my spine is damaged and I have a couple of soft tumours which I didnt understand at first were part of the bone mets. One of them has wrapped itself around the bundle of nerves that exit at L2 I think and that causes me a lot of grief. The other one is around T6 where my onc tells me it has taken over the vertebra there. I must confess I worry a lot about spinal cord compression. One of the tumours is pushing the cord over to one side and there was a bit to and from as to whether there was risk of compression or not. I have just had an mri of spine and pelvis and will get results on tuesday. Which Marsden are you at - I go to the Sutton one. Will be watching with interest to see how you get on and hope you get some answers an action soon.


Dawn

xx

2catlady
Member

Re: Bone mets - please join in

Hi,rose,you ask away we will always try to help. I have bone mets in top & lumber region of spine ,also in pelvis & ribs. I haven't got any soft tissue involvement as yet,but as you said I know it will go there at some point. But this can be controlled too as lots of ladies on here have. Your treatment now is all about keeping you stable and keeping one step ahead of the cancer. It can't be cured which I still get upset about but hopefully it can be controlled for years. I haven't had a mastectomy. Once you have mets it is in your blood stream. I reckon your onc will get you on some treatment quickly. Depending if you are ER + or HER+.
It is a scary time waiting and we all understand how you are feeling. Having a treatment plan in place will help you feel more in control .
You have a glass or two as that's what I'm going to do tonight,huge hugs,Helen xxxxx
rose38
Member

Re: Bone mets - please join in

Thanks  ladies ,think your right as iv read about cord compression ,and that can be serious so i will just accept all advice and do as im asked,and will try and relax with a glass or 2..can i ask you both if you have had any mets in spinal area ? so many questions to ask but perhaps nows not right time till all bone results back but, i see theres alot of ladies with bone mets who thank god ,have been here a few years now iv been told havent any in lung or liver ,as yet but cancer has no pattern to where it goes ,,but if its in nodes its already in bloodstream so am i right in sayin its possible to at any time ,go into a lung or my liver ? exspecially as not had mass yet  and treatment /bone injections and hormone tablets not in place yet ,isnt this spine surgery going to prolong treatment starting,maybe ,i suppose what will be will be! sorry i know noone are doctors here ,just hoping any ladies have any more experiance at this stage than i do.  anyway .thank ladies for replying ,and hope you are all are doing okay .

       loads of hugs to all . rose x

2catlady
Member

Re: Bone mets - please join in

Hi,rose,as vercors has said they do work quickly with spinal cord compression if that's suspected. I'm sorry to say it is never ending as all the ladies will agree but you do mostly learn to live with it but at times you can have major wobbled emotionally and that's totally fine. There's no wrong or right way to deal with what we live with . And "us lot" are always here to offer advice,support and hugs.
Have a drink if you want one it sometimes does you good as you can relax.
Huge hugs coming your way,Helen xxxx
vercors
Member

Re: Bone mets - please join in

Hi Rose,

Sorry you have some worries. They might want to avoid spinal cord compression hence they are acting quickly. As you say it is never ending and the slightlest niggles get us so worried. 

I hope it all goes well.

Nothing wrong with having a drink by the way. 

xxx

 

rose38
Member

Re: Bone mets - please join in

 Hi thanks  2catlady,  

   been reading all your posts on here for a while now, and it has been a great help to me.

 i called my sbcn to  ask a question about spinal pain been having , and was told that will get a call later from onc as something seen on mri ,,was surprised as only been done yesterday at marsden.

 well turns out im been ref to st georges for poss emergency surgery on lower area of spine but said its arthrits in that area not mets thou thoractic area is mets ? so confused ,seeing them at marsden this wed ,hope get full facts then ,its neverending isnt it.  havent had a drink for nearly 1/12 years but need i say really ,really want one. sorry rabbiting on but feel  losing it a bit but holding on.   

 

thanks for all your help ladies xx rose

 

2catlady
Member

Re: Bone mets - please join in

Bumping up for rose xx
belinda
Member

Re: Bone mets - please join in

What a lovely poem and so very Val. Thanks for sharing this Theresa and Nicky. XX
belinda
Member

Re: Bone mets - please join in

Hi Chris, this is exactly the same way my pain story unfolded. CT showed nothing untoward. MRI showed 2 bone met problems and nerves being squashed, so to speak, from sacrum problem, dreadful pains travelling down leg. I hope you get some respite from all this very I soon. My rads worked well and I came off both OxyContin and Amitriptyline. It was the second set of rads to the sacrum, was ok as years between the two.
Lots of Love. X
2catlady
Member

Re: Bone mets - please join in

Thank you ,Nicky, for sharing the poem,beautiful,truly beautiful.
Xxxxxxxxxxx
pam01
Member

Re: Bone mets - please join in

Thank you so much for updating us Nicky. what a beautiful poem and so appropriate in every way for a funeral. val offered so much to so many on here...she will be very sadly missed.xx

 

nicky08
Community Champion

Re: Bone mets - please join in

Here is the poem read out at Vals' funeral (as mentioned in my post below):

 


"From - POEMS OF GITANJALI by Gitanjali Ghei
Farewell My Friends
It was beautiful as long as it lasted, the journey of my life, I have no regrets whatsoever, save the pain I'll leave behind.
Those dear hearts who love and care, and the heavy with sleep ever moist eyes, the smile in spite of a lump in the throat and the strings pulling at the heart and soul,
The strong arms that held me up when my own strength let me down, each morsel that I was fed with was full of love.
At every turning of my life I came across good friends, friends who stood by me, even when the time raced me by.
Farewell farewell my friends, I smile and bid you goodbye.
No, shed no tears, for I need them not, all I need is your smile, If you feel sad, do think of me, for that's what I'll like, when you live in the hearts of those you love, remember then...... you never die.
Gitanjali Ghei"

 

Nicky x

nicky08
Community Champion

Re: Bone mets - please join in

Hi bone mets ladies

 

I apologise for not doing this sooner but haven't had much access to a pc and trying to do this on any other device is hopeless!  However I know how she called this thread her favourite one and I am sure all of you would like to see this.

Last Friday was Val (Scottishlass)'s funeral and the following message was posted on our "Darling Buddies of May, moving on" thread in the 'Following on from Treatment" section of the forum.  Val had been one our lovely buddies for as long as she was a member on BCC so, as you can imagine, we were all so sad to hear of her death.  If you want to read the context of this, plus the poem I will post afterwards (as this site isnt allowing me to cut and paste from two posts, grrr) then please check it out, this particular post by peacock is about 10 or so down from the latest one but the poem is nearer the top:

 

"I've had a FB message from Rhapsodyangel (Theresa) who went to her funeral and the following is a message I thought I would share with you :

 

"Just thought I would update you... the service was lovely... I had hoped to get you an order of service but they hadn't done one... It was a humanist service and included lots of lovely tales of Val's life.... her love of baking, shopping for a bargain and travelling camping xxx They made special mention of her last trip to the Dordoign... (oops can't spell that...) is that when she saw you? They did mention how much all her online friends had meant to her xxx They also read out a poem about friendship... if I can track it down I will let you know it so you can share it with the buddies... xxx" "

 

Nicky x

ps I will post the poem after this so it will unfortunately appear ahead of this but will try to make it make sense!

 

 

Steris
Member

Re: Bone mets - please join in

Thank you for all your replies, I seen the oncologist last Thursday and she arranged an X-ray she dud say it was a crude way if looking at bones but may show something up. She sad the was a tiny bit if progression on my right hip but ax I was having a ct scan on Sunday she would wait for the results. Pain killers increased which has helped but pain still there. Oncologist phoned today and said Ct scan hasn't much on bones apart from hip progression and has ordered an emergency MRI scan w high will show nerves. I just want to know what's causing the horrendous pain. I'm really fed up with myself and zero energy. I'll let you know how I get on.
Thank again.
Love
Chris xxx

Desi-2
Member

Re: Bone mets - please join in

Thanks Helen I just sent a post to you on another thread oops xx
2catlady
Member

Re: Bone mets - please join in

Oh,desi,huge hug xxxxx hopefully the letrozole will keep them stable. And rads will shrink the little buggers. I did read something about PR+ ages ago but can't really recall what it said!but I think it was a male hormone for the treatment but I could be totally wrong.
My markers were up again this time,so I'm not sure if letrozole is failing after three weeks,god I hate this disease it never gives you a break.
Sending you a massive hug,Helen xxxxxx
Kandra,they may be able to do both on same day? Not sure,but give them a ring so it's one less thing you have to worry about,huge hugs &stake care,Helen xxxx
Kander
Member

Re: Bone mets - please join in

I too hope I don't have to join officially but I am very greatful for your input and advice. 

I did change consultant and the one I see now is fantastic. She herself told me that the cancer was there on the 1st scan and in her opinion it should have been spotted sooner. As for my bone scan, they booked me in for thursday next week but I'm due to start my radio on the same day, i need to find out my times and try to arrange around that.

 

Thank you for replying, It means a lot. 

 

Lots of love to you all

 

Desi-2
Member

Re: Bone mets - please join in

Just wondering what treatments you get if you are pr+ I'm weakly er 3/8 her- but my onc have never mentioned pr status ? Xx
Desi-2
Member

Re: Bone mets - please join in

Unfortunately it seems the degenerate changes on my scans in January are now in fact mets in my sacrum and multiple lumbar areas 😞 but if I'm honest I didn't believe them in January anyway and due to sudden increased pain over the last couple of weeks they are going to give me rads to the sacrum. I'm not sure if they will change my treatment now from letrozole or give it longer as these mets were there already on starting the letrozole Ahhh the dreaded chemo!!!

2catlady
Member

Re: Bone mets - please join in

Hi,kandra,omg! That's terrible about your treatment, shocking.
I have rib mets and mine are like an ache but doesn't cause much discomfort unlike the spine mets.
Yours may be from mastectomy some trauma caused by the surgeon . I would say try not to worry but we can't help it. We all think any pain is mets and that's totally natural ,we all do it.
Hopefully your scan will be soon and it can put your mind at rest. If it is a met you will gets lots of advise & support on here xx
Please never feel as if you can't ask on the secondary site for help we all are very willing to support all BC sufferers ,we only pray that you never have to "officially" join us.
Sending you a huge hug & please let us know how you get on,Helen xxxxxx
Chocolates
Member

Re: Bone mets - please join in

Kander you're so young still. The misdiagnosis is awful. Have you since changed your consultant or are you now in a place where you have a better understanding?
I think we all naturally fear the worse - your pain is real but it may not be bone mets. Every little pain is magnified once you've been diagnosed.
When are your scans - have they been arranged? Is there a bcn that you have a good relationship with that you could call to chat your concerns through initially?
I understand about family - I had to have a lot of counselling after first dx in 2010 as I felt so guilty about what I was putting them through. To tell them again at the end of last year was so difficult yet we have pulled together and I'm sure your family will do the same. They may be more cross if you've known about the pain but done nothing. Please don't leave it - go get it checked out. We'll all keep our fingers crossed. The explanation could be something very simple and straightforward. xxxxx
Kander
Member

Re: Bone mets - please join in

Thanks Chocolates,

 

It wasn't my gp that misdiagnosed, it was the breast consultant. Because i was only 27 at the time he said I'm young, it's a natural ridge and nothing to worry about so didn't order any testing. I've since learnt that my mass was visable on the ultra sound and he should have ordered a mammo and core biopsy. By the time i got my diagnosis the mass that at the time was no larger than 1cm by about 4mm had grown to a 4.5 cm by 4.5cm and had spread it's cells throughout my breast. 

 

My cancer was ER+ (3/8), PR+ (4/8) and her2+++. I have just finished my chemo and am still having herceptin so I'm wondering if it's all in my head and I'm worrying over nothing, i do have pain, that isn't in my head but maybe something simple is causing it and I'm so worried that I can't see past the fear of the cancer spreading. 
I'd hate to have to put my kids (1,2 and 6) through the treatment regime again, It's affected our young family too much already. 

Chocolates
Member

Re: Bone mets - please join in

Hi Kander - I don't have rib mets - mines in the sternum. I experienced very bad pain initially - spent the day in bed but then the next day nothing. Over period of next 2 months gradual building up of pain and difficulty leaning forward or stretching. Saw gp initially (I think I already knew the cancer was back but didn't want to face it) gp said just pulled a muscle so don't worry and gave me stronger pain killers. Alas saw oncologist following month who at first wasn't too concerned but ordered bone scan just to be sure. Bone scan showed hotspot but nothing conclusive. Pet scan the following week showed bone mets and scattering of lung mets. We were devastated. My fear was realised.

I've completed 7 rounds of docetaxol, herceptin, perjeta 3 weekly and bone injection every 4 weeks. Bone mets have healed - lungs reduced so there is hope. I've just finished the chemo - I've decided to stop as side effects too much. So now going on maintenance which will hopefully further shrink any remaing tumours.
I hope yours are not confirmed as mets but there are medicines out there to help us all. Use the forum to ask the right questions and push for the scans/treatment you feel is right. I presume you've changed your gp. You can also ask for a second opinion at any time if you're not happy. Always take someone with you to all appointments so you are clear about exactly what has been said.

I really hope you have a result which is not bone mets - if you do remember the ladies on here are ready and willing to help everyone.

Take care xxxx
Kander
Member

Re: Bone mets - please join in

Thanks for the reply Desi-2, 

The pain I have is an ache, as if I've been lay on something too long, It's there on and off, At first i thought maybe my bra was too tight so i bought new ones and it's made no difference. I sometimes get a pull in it too, if I stretch it feels like my ribs are stuck together with an elastic band, I get a sharp pain in that area and then back to the dull aches. My oncologist thinks it's probably nothing but she wants an appoinment booking so she can give me the results face to face just in case. My problem is that I've been let down by the nsh already, I went with a breast lump in May 2012 and they didn't bother to do any testing so I lived with the tumour growing for 18 months and it spread to my lymphnodes and also dcis in the entire of my remainding breast tissue. I'm so fearful.

Desi-2
Member

Re: Bone mets - please join in

Hi Kander my bone mets were originally in my rib 7th one and the pain I found and now which unfortunately a new one ein my sacrum is a kind of dull ache that will sometimes seem to wash through that area. It doesn't always last very long just kind waves in and back out. Hope that helps and good luck hopefully it will not be mets. Xx
Kander
Member

Re: Bone mets - please join in

Hi all, I haven't been diagnosed with any mets to date but i am awaiting a bone scan because of rib pains. i worry because I'm a mum of 3 very young children, have just finished FEC-T and am due to start radio next week. This pain that I get is annoying and worrying. I was hoping someone could describe the type of pain that comes with bone mets so I can either prep myself to hear the worst or settle myself knowing the pain could be due to something else. At the moment it's only in one area, On my rib about 1-2 inches below my bra. i told my onc weeks ago about it and she said she would order a scan but when I went on Monday she said she hadn't bothered to do it because she was hoping the pain would go away, it obviously hasn't so now she has ordered it for next Thursday. 

i'm sorry if anyone is offended b me asking for guidence here, i don't know where else to seach and ask advice about it it other than someone who has experienced it.

 

Thanks

Kander

xxx

Esha_Ness
Member

Re: Bone mets - please join in

I will miss Val on this forum. Throughout my time of tapping into bone mets thread I was always inspired and helped by Val's posts. More so it was her approach to how she lived her life around her cancer and the love that came through her words . Thankyou Val
Esha Ness

tob21
Member

Re: Bone mets - please join in

So sad Val was a lovely lady she helped me make my mind up about LD flap reconstruction she will be missed  by everyone RIP  Val xxx

 

 


@finty wrote:

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x



@finty wrote:

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty 



belinda
Member

Re: Bone mets - please join in

Hi Chris, I hope an MRI will show exactly what is going on. My MRI showed my exact problems where as a CT had shown very little change. Can you request this as an emergency? I ask as it sounds you are putting up with an awful amount of pain every day. Take Care. X
dawnhc
Member

Re: Bone mets - please join in

You only have to read through these posts to realise what a lovely person Val was and how much she will be missed. Val & I were so pleased to find each other a few years ago on this forum as neither of us really had contact with anyone whose cancer had a similar timescale. We were both diagnosed with primary bc at a similar time - Val in '89 and me in '90 and with secondaries in our bones in 2000 & 2002 and we were both of a similar ages - 39 & 45. We exchanged a lot of private messages over the years sharing our experiences of how things have changed so much over more than two decades since we were diagnosed. I will miss her as we all will, but that loss is as nothing compared with how her hubby and two daughters must feel. They will be in my thoughts and prayers over these coming days especially. Thank you Val for all you gave to us.

 

Dawn

xx

madge1
Member

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Very sad to hear about Val, she was an inspiration to us all, condolences to her family, RIP Val.
Julie
X
vercors
Member

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Hi Ladies,

Still trying to recover from the shocking news about Val; she is such an inspiring ladies. 

 

Chris, I had pain which worried me, CT and MRI did not reveal anything nasty; it was just sciatica. I went to a sports physio who sorted me out. So hopefully you will have similar news. I am not going to tell you not to worry as unfortunately this comes with the condition. We can ony help you with our positive stories which I hope will help. xxx

 

helen44
Member

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Very sad to hear about Val. I can only reiterate the thoughts of all the mets ladies - Val you were an inspiration to many and you will be very much missed. Rest in peace xxx

Porkie
Member

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I am so sorry to learn about Val. Whilst I had never met her she was a lovely lady with so much kindness and thought for others. She helped me enormously when I was first diagnosed - giving me hope for the future - something I will always be grateful for. Heartfelt condolences to Val's family. Rest in peace Val. xxx

 

Chris - I am sorry you are in pain - like the other ladies have said - I would press for an MRI which will hopefully show the cause and enable treatment to be sorted to help alleviate the pain and put your mind at rest.xx

2catlady
Member

Re: Bone mets - please join in

Hi,Chris,so sorry to hear about your pain. But as cherry orchard said press for a MRI ,that will show any nerve involvement . It could be shingles too as Cherry o said. Have you seen your GP,if not make an appointment and mention shingles to him/her.
Sending you a very gentle hug,Helen xxxxx
cherryorchard
Member

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Chris,

I am sorry to read that you are in pain. 

My MIL had shingles without a rash. It is rare for this to happen but apparently not unknown. She had pain and the affected area was very itchy. It may be that you are experiencing something similiar. Just a thought.

Press your oncologist for the MRI. It is really important to scan all of us affected by secondaries to have a clear understanding of what is happening in our bodies. 

I hope you find an answer and relief from your pain very soon. 

Steris
Member

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Val will be missed by us all and I have felt her passing deeply. She was such a kind considerate lady and I'll never forget. I wish I'd gotten to meet her.

I'm hoping someone will help with my chronic back pain. I know I've posted before but my oncologist at the last appointment said she could see no change in the spine mets but there's obviously something going on. It like nerve pain and the painful to touch. Also the area is very itchy and I'm waking up with the pain which I tender to automatically hold the area leading to more pain. I've had ask the girls in the chemo unit to let my oncologist know. Belinda I'm going to ask hot a MRI scan as I've never had one as I need to know what's going on and feel scared by the prospect of spinal cord damage the longer it's left.
Thanks in advance for your replies at the hard time.
Much love
Chris xxxxx

livlassie
Member

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What sad news this is.  A lovely lady with so much kindness and thought for others, especially those newly diagnosed who come on here scared and bewildered. Heartfelt condolences to Val's family. Rest in peace Val. xxx

pollym
Member

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Rest in peace Val.  In the 7 years I've been on this site I have seen what a wonderful support she has always been.  She will be tremendously missed and always remembered. Xxx

pam01
Member

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I am so sorry to hear this news about Val...My heartfelt condolences to her family........but perhaps on this site we can also celebrate the fact that Val overcame BC for many years and lived to see her family grow up. She has been a tremendous helpand support for so many and her memory will remain with those who post here for many years.RIP Val.

rozita
Member

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cherryorchard
Member

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I am so sad to read this news. She was a stalwart of this forum and had shared her experience and wisdom with many.

My heartfelt condolences to her family.

nicky08
Community Champion

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Our dear Val (Scottishlass) who helped so many of us with her support over the years and  welcomed anyone newly diagnosed with secondaries, especially bone mets.  She was one of our 'buddies of May' and will be sorely missed by all of us.

My heart goes out to her family and friends at this difficult time.

Thank you Carole (peacock) for letting this thread know as many have been asking of her recently.

Nicky xx