62824members
330356posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Member

Re: Bone mets - please join in

Sorry to read about your extra pain, Janette - Nurse Barton's second opinion is the same as Nurse Carolyn's! Chocolate and lots of rest!

 

Hugs. Barton.x

Member

Re: Bone mets - please join in

Oh well done, Kirky! Excellent news - it cheers us all up, not just you! At least you can relax a bit now for a while! It's the most worrying thing, isn't it, waiting for the results! Anyway, long may it continue.

 

Hugs. Barton.x

 

Ps - even shrinkage! Brilliant!

Member

Re: Bone mets - please join in

Well, all good on my scan thank goodness, mainly stable Mabel with a few bits of shrinkage. PJs back on and a long snooze after a few wakeful nights worrying. Then round 14 of Cape! Going to book my hols as well now I've got my results.

Hope everyone is OK and lots of hugs to anyone waiting test results (and everyone else too of course).

Member

Re: Bone mets - please join in

Jeanette
Nurse Carolyn recommends a comfy place on sofa in joggers ( tight jeans hurt more) a large bar of choc and a large mug of tea and a chic flick DVD or stupid daytime tv and don't feel guilty about the dust, pile of ironing or dishes in the sink !!!
Sending hugs xx🍫👍☕🍨
Member

Re: Bone mets - please join in

Well the painful hip and leg has got the better of me today, just had to come home from work, really didn't have the patience to be in there today!.....hate this flaming disease!
Hugs Janette xxx
Member

Re: Bone mets - please join in

Hello kirky
You have a good excuse for being tired ..you are a " cape crusader" and its a big side effect of it ! Just let your body tell you when to rest ..it knows best !!
Jeanette and I are only letrozole girls and have no excuse !! But Jeanette you might be right as I haven't had denosumab for eight weeks because of my teeth problems but I'm not sure whether I want it until I'm sure the jaw thing isn't my problem ..I want to see Maxx fax dentist first before I go back on it
Xxxxxx.
Member

Re: Bone mets - please join in

Hi Pippin,

Yes it's lonely in the middle of the night and things keep going round and round and getting worse. Advice seems to be not to lie there fretting but to do something like reading. But I usually feel too tired to do this. I find listening to music can be comforting and you don't need to turn the light on. I usually crash out at bedtime but it doesn't last long. Tonight think of all the people who will be sharing your wakefulness. We will be there with you. Hugs B xx

Member

Re: Bone mets - please join in

Hi all so glad it's not just me. I have been having long afternoon naps but feeling no better for them. ONC just keeps saying excercise which is easy for her to say. Piling on the pounds as the only time I seem to go out is to meet up for lunch or coffee and cake!!

Get my latest scan results this morning and am absolutely bricking it - convinced myself the cape has stopped working which has certainly added to my sleepless or nightmare filled nights and lazy days.

Ah well, best get out of these pjs and make a shape.

Paula

Member

Re: Bone mets - please join in

Morning Carolyn, it's horrible isn't it!
I've also been getting a lot more pain /achey in my hip and femur, I'm wondering if it's to do with the fact my onc has changed me to 8 weekly denosumab instead of 4 weekly?? If this continues I'm going to ask to be put back to 4 weekly when I next see her in May! This pain is getting me down now and also that's contributing to my sleepless nights as I cannot get comfortable.
Hugs Janette xxx
Member

Re: Bone mets - please join in

Hello Jeanette
Snap ..Im the same with tiredness too ..this last few weeks on average I go to bed at ten ish and don't get up until ten ish the next day ..that's twelve hours !!
Sometimes I think I have been abducted by aliens during the night and been partying ..hence the tiredness !!
Hugs xxx
Member

Re: Bone mets - please join in

Hi Pippin, I hope you managed to doze off at point.
I'm also really struggling with tiredness at the moment, constantly sooo tired, how can you be so tired then not be able to sleep???? Last night I went to bed at around 8.30 because I felt so rubbish and I actually did sleep all night but this i feel awful, still just as tired with a really heavy head.....think I've had too much sleep feel about 90.....You can't win!
Hugs Janette xxx
Member

Re: Bone mets - please join in

Hi everyone

Can't seem to get through most days without a long nap, then not tired at bedtime hence the middle of the night post. Can't blame steroids or painkillers as not taking any. It's lonely here!

Pippin

Community Champion

Re: Bone mets - please join in

Hi ladies, I found my tumor while in Disney World on vacation. My breast started to leak blood and I was in the shower and found the lump. I was there with my two youngest at the time. Hubby was in the keys with oldest son and boy scouts sailing. They had dropped me off and were coming back for me. I got home went through all my treatment and surgery. No nodes involved! Oncologist said I didn't need radiation or tamoxifen. I didn't know much about BC and so I figured oncologist knew what he was doing. Fast forward 10 years and I'm coughing up phlegm like crazy, so bad I'm vomiting from it. Cancr set up camp in lungs. I asked oncologist what my original breast cancer was? His reply was he didn't know it wasn't in my notes he would have to research it. Next visit he tells me I was ER +! I said shouldn't I have been in tamoxifen? His reply was that protocol at the time of my cancer and my age said  you could give it or not give it, but  at the time my mets were discovered if I had presented with primary he would have given it to me. I then went to surgeon for port placement and told her the story. She was furious! She said BS! She hit her fist on the table! She said I should have been given it and at the very least I should have been given the choice. Then she said, but no use in crying over spilt milk we can't change it now! FF

Member

Re: Bone mets - please join in

Hello lyndyloo
Thanks for posting ..we all have the same sort of stories to tell at being overlooked.
I have always been a person that if I get pain ..take paracetamol ...if I bleed ..stick a plaster on it !! I put my hip pain down to old age for a long time !! Then doc dx sciatica and arthritus !! It was ages before I got a scan and the rest is history ...looking back its important to take things more seriously but then we would be at doc's everyday I suppose.
Hugs xxxxx
Member

Re: Bone mets - please join in

Hi Moijhan and everyone. I still get annoyed with myself even though it is now nearly 8 years ago since diagnosis. For all the newbies this is what happened to me. Had the normal 3 yearly mammogram in Jan 2008 came back as normal. Like you I have still got that letter. Went to GP 3 weeks later with intention in side of breast.. GP would not examine me. I left it at that thinking I must be OK. Went back again July 2009 to GP by that time it was a lady doctor I saw who referred me to see a consultant. Had a mastectomy in the September then found out mine was lobular which as you say does not show up on mammograms in the early stages. Sent for bone and CT scan came back had bone mets. Had treament chemo etc. Sorry reply has been so long. Just thought I would give hope to everyone that I am still here. Linda
Community Champion

Re: Bone mets - please join in

Yes, everyone, like Lucy, I ended up changing hospitals after my bc was missed, the year before I found a huge lump! 

 

I had gone to them with a crease in my boob which I knew wasnt normal. However, I. Learned later that my bc was invisible on mammos...lobular is quite hard to find. The reason I changed was because when I decided to ask my cons. Why my  bc had been missed the previous year....he lost his temper with me!......

 

this was about 17 years ago........by the time I found the large lump....most of my armpit lymph nodes were cancerous and it had spread outside them into the armpit.

 

like you ladies,I was angry with myself for not going back, or checking more...I was just glad to be sent the letter that I still have ' dear ms x you will be pleased. To hear that no cancer was found, etc etc'

 

we have to go forward, no choice, otherwise we waste the time we do have. Not one second of agonising or self punishment will change the past.  I have been where you are...its tough,xxx

 

but make the very best of today

 

today  is really all that any one of us have. Xxx

 

hugs, Moijanxxx💚💚💚

Member

Re: Bone mets - please join in

Hello Doodles
I don't post very often but reading yours i felt i should .
I went through a very angry time after I had been diagnosed.
I was referred to my local hospital after finding a lump . I had the usual mammogram ultra sound etc . 4 days later diagnosed with "early stage breast cancer " or as they said . I was told by my Consultant that I was young fit and Healthy and he didn't see any reason why I wouldn't get through this ! He said it was curable and he's was there to help me ! I also was told it hasn't gone to my lymph nodes .
Everything seemed really positive . Secondary breast cancer never crossed my mind . I had my operation then after finding it in the lymph nodes I had a body scan and ct scan only to find I now had it i my liver and femur !
I too went through a very difficult time with the professionals involved ! Whilst I appreciated iim
Sure it wasn't intentional and he probably didn't know . I felt very let down and very angry with everything.This took a long time to get over . So much so that I had a second opinion somewhere else and decided to transfer my care there .
So I empathise with how you are feeling x
I
Member

Re: Bone mets - please join in

Hi girls,

 

Doodles, Nicky is right.  Somehow we have to stop going through that blaming myself road.  I had BC in 2012, nothing on the nodes, only 4 chemos. Kept going to my checks, nothing strange, thought about asking for bone scans etc but they told me to be careful because you may end up having cancer through the radiation instead... in november i went to see my GP with back pain (but then i've always had back pain!) and told her about doing streches or exercise and she was happy with that- thought it would be posture as I sit at a desk all day.  After my mammogram in december and subsequent biopsy went to the gp again who said htat if it hadn't gotten better in a week she'd refer me for a bone scan.  That following monday I found out that the BC had come back and I was to have CT and bone scan and a masectomy in 2 wks.  Ended up not having the masectomy as they found mets in my spine and pelvis... I'm now doing hormone treatment and waiting for the next scan in 2/3 months time...

all of these nights, I've wondered whether I should have become a vegeterian, done more exercise, done less excercise, should I have cut dairy, should I should I should I...

I've come to realise that no matter what I've done or haven't done, this was going to happen anyway. Now all I do is pray that this treatment works and that I can live the next 20 yrs to see my girls become grown women and see their dreams come true. 

I'm not going to lie, it's hard. It's super hard. There are days that I just want to stay in bed and cry and feel extremely sorry for myself (which I have done by the way); or days when listening to my girls laughter brings joy and sadness at the same time; when feeling the warmth of the sun like it's the first time or when I just laugh at extremely inappropriate moments.  Days when just a simple hug reduces me to tears. Days when you receive messages that shoudl reduce you to tears but wonder how people can be so inconsiderate (someone telling me I didn't look too well in a picture whilst on holiday!).

the truth is that this new journey that we are on, it's not a simple walk in the park but a flippin rollercoaster that when you think you are coming to a point of acceptance, something else is thrown your way.

much love & hugs xxxxxxxxxxxxxxx

Community Champion

Re: Bone mets - please join in

Stresshead, was wondering how you are as havent seen any posts for a while.

 

how lovely to hear from you xxx

Moijanxx

Community Champion

Re: Bone mets - please join in

Carolyn the tea sounds soothing...hope it keeps helping! FF

Member

Re: Bone mets - please join in

nicky, sorry to hear you jave been so poorly but glad that you are out of hospital and hopefully 'on the mend'.

FF...nice to have you back, even if it was with such horrific stories. Hope the lady is doing ok and that your mind is finding some piece now the scumbag is off the streets.

Doodles...please dont beat yourself up..its not your fault.

I was the opposite to you...i reported a lump 2 years on from my primary in the January and no one did anything bout it until July when it turned out the sebaceous cyst they though i had was SBC in the skin (and now bones nd pleura). I was so angry but came to realise that it wouldnt change anything. I used to beat myself up with 'if only i had been more forceful and insisted on a biopsy' but as you say, thats their job. I believed my GP, onc and breast surgeon. If only i hadnt!!! I have come to realise though. as you will, that none of it is your fault. Try and channel your energies into resisting this ***** disease. We are all here to help and support. xx

Community Champion

Re: Bone mets - please join in

Hi Nicky
Hope you feel better.... an a bit nakerred today, so snatching some extra sleep now

Xx
Member

Re: Bone mets - please join in

Oops sorry that post went twice! 

X

Member

Re: Bone mets - please join in

Hi Nicky, sorry to hear you have been in hospital but glad your now feeling better, flu is rotten (even more so when you are dealing with other health issues!) Doodles, hope you've managed to get some sleep! Us ladies on here all totally get where your coming from, we have all been there! Like you my primary (2007) was low grade (1) no chemo and was told chances of returning were very slim, then in Feb 2014 after months of complaining of hip pain and being treated for sciatica it was discovered I had mets in hips ribs and spine! I didn't even know you could get breast cancer in your bones! Anyway here I am living with cancer but getting on with life, not saying it has been easy, there's been tears, anger "why me" days but my new "best friend" letrozole is keeping me stable.....and long may it last!! Take care hugs Janette xxxx

Member

Re: Bone mets - please join in

Hi Nicky, sorry to hear you have been in hospital but glad your now feeling better, flu is rotten (even more so when you are dealing with other health issues!) Doodles, hope you've managed to get some sleep! Us ladies on here all totally get where your coming from, we have all been there! Like you my primary (2007) was low grade (1) no chemo and was told chances of returning were very slim, then in Feb 2014 after months of complaining of hip pain and being treated for sciatica it was discovered I had mets in hips ribs and spine! I didn't even know you could get breast cancer in your bones! Anyway here I am living with cancer but getting on with life, not saying it has been easy, there's been tears, anger "why me" days but my new "best friend" letrozole is keeping me stable.....and long may it last!! Take care hugs Janette xxxx
Member

Re: Bone mets - please join in

Hi Nicky
Your last post is the best thing i have read about SBC, I shall keep it somewhere where I can read it from time to time. Even after 18 months I am occasionally tempted to stray into 'what if ' territory. But it does makes me angry to hear of the experiences of women whose symptoms and concerns have been dismissed by doctors for months or years. Got to go, grandchildren are squabbling in my bed!

love to all B xx

Community Champion

Re: Bone mets - please join in

Hi Doodles,

 

yes I agree with what Carolyn and Nicky have said....its not useful to blame ourselves...I went thru something similar and have pm'd you.

 

hugs,Moijanx

Member

Re: Bone mets - please join in

Thank you so much Carolyn & Nicky for your comments.
Angela
Member

Re: Bone mets - please join in

Hello ladies
Hope everyone is sort of ok .
Yesterday I bought some peppermint tea bags in the hope of giving up Rennie type indigestion tablets ...well I did nothing but wee for two hours and the good bit ..when I went to bed later I slept for eight hours with no twice nightly tinkle trips to the little girls room ..a real unusual thing for me ..so thought I would pass on the tip ...they are caffeine free too.
Hope it helps ..might not but worth a try and no Rennie tablets have passed my lips for a whole day !!!
Hugs Carolyn xxx
Community Champion

Re: Bone mets - please join in

Hi doodles

As Carolyn has said please do not imagine for one minute this is anything you could have stopped. Breast cancer in particular is a very clever disease and will always be in remission, whatever your oncologist might say when you have completed your treatment for primary BC. As of yet there is no test to predict whose BC will return and whose will stay in remission. The majority of BC does stay in remission and that is what we all hope for when we have completed our initial treatment. However, like you mine was low grade (2 but nearer to 1) no lymph involvement and something like a 95% chance I would be here in 5 years (which is all the oncologists can tell you at present). Well, they were right about that, however by then I had bone mets! I used to think the whole 'what ifs' ie should I have had chemo, should I have had a mastectomy - both of which I didn't have due to the original pathology and also how small my lump was. However once I had to join the secondaries part of this forum in 2008 I realised it didn't matter what I had done or not had done as BC returns to whoever it is going to return to, whatever their initial treatment was, I just needed to read their stories on here to realise that was the case. I am glad that I didn't spend the 5 years between primary and secondary diagnoses beating my self up and worrying all the time that it was going to come back - that would definitely have been a waste of time for me. But as it had unfortunately come back I had to deal with it and this forum gave me the boost I needed to realise that ladies live for many, many years with mets, particularly with bone mets and, if yours behave in a similar way to mine (being low grade) they tend to respond well to treatment and don't suddenly become more aggressive. It is a very difficult time for you, as we all know too well as we have been there as well, so take time to accept what has happened, don't blame anyone for the diagnosis but accept that your bone mets will now get treated and stopped in their tracks. It takes time to adjust as it is such a shock especially if you have no inkling, as I did, of any particular aches and pains. However once a treatment plan is in place we all seem to be able to cope better, it's not easy but over time as you begin to live with SBC you realise you can continue (in most cases) doing exactly what you were doing before.  If you find you are not sleeping well or coping well at this time is is also worth speaking to your GP or a trained counsellor, something that some of the ladies on here have done.

Nicky x

Member

Re: Bone mets - please join in

Hello doodles
I'm so sorry u are giving yourself a hard time but you must stop blaming yourself ..bone Mets are very clever and don't always jump up and say " hi here we are" ..most of us here have been overlooked with pains before being dx ...we put a lot of aches and pains down to old age or over doing some gardening etc ..most times they are but a few of us are unlucky ...
All you can do is look forward and focus on the treatment plan that will be put in place for you ....try to keep busy with nice things in the meantime .
Hugs Carolyn xxx
Member

Re: Bone mets - please join in

Another sleepless night. I can't stop going over everything. My original primary cancer in 2012 was grade 1, no lymph nodes involved. I was diagnosed 26 March and had an immediate reconstruction 29 May. How can this have happened to me? I'm now torturing myself thinking it spread because I waited 2 months for surgery. Also I have been going to my gp for about 2 years with fatigue. I thought it was my thyroid, I never thought about cancer at all, but that was her job! The back pain I ignored longer than I should've because I have had a bad back over the years but I have mentioned it too. But I have on numerous occasions asked about cancer and was told I had nothing to worry about because I was grade 1,no lymphs involved. Last May at my yearly check I told my consultant I was getting hip pain too. I'm so angry at the whole situation. Also the day I was given my results , my consultant went to my GPs that afternoon. Does anyone find this strange? Am I overthinking it? My GP called me the next day and told me my consultant was at the surgery for 'a meeting' She said neither of them expected these results. I feel like they have messed up with me. Is it normal to be thinking like this? I know nothing can change it now but I'm going over everything and it's driving me crazy! I was even hospitalised last July with an infection and asked them could it be anything to do with cancer and was told no. Arrrghhhhhh!!!!! Sorry for going on Smiley Sad
Member

Re: Bone mets - please join in

Hi Nicky, Glad you are back home with windows! Not very nice outside right now anyway, better tomorrow maybe, Hugs B xx

Member

Re: Bone mets - please join in

So sorry you have had to be in hospital, Nicky - and in a room without windows (that is what I would find hard, although I don't have claustrophobia)! Glad you are well enough to go home now, though, although sorry you have to pander to builders! Endless rounds of tea, I expect!

 

Hugs. Barton.x

Community Champion

Re: Bone mets - please join in

Janette and Nicky, I hope she can get over it too. The one thing that I think is good is she didn't own the home. She rented it. So she can move somewhere else without having to sell first. I wouldn't want to go back there.

 

Nicky, Sorry you were in the hospital. I would think that a hospital room without a window would not be allowed by building codes. It is one thing if it's an exam room, but it should not be allowed as a patient room. Take care and keep well!! FF

Community Champion

Re: Bone mets - please join in

FF - so glad that they caught the cowardly intruder. How awful for the lady in question and it must be a huge relief for you, and any of your neighbours however far away they might be, that he will be locked up now.  Just hope the lady who was tied up and left can recover OK - mentally as well as physically.

Hi to all other mets ladies.  I have been reading but not posting much. A bout of flu put me in hospital with a very high temperature and, being on chemo, there were concerns that my wbc and neuts would be low.  However, luckily they were sky high but I was kept in overnight - in a side room as I needed to be kept away from the other patients.  This would normally have been OK but it seemed to be a room that had been made from the main ward and had no windows!  Very claustrophobic and very warm.  Glad to have escaped (this was last week) and finished my course of anti biotics and Tamiflu. Just what I didn't need on what should be a hospital free week, grrrrr.  What with that and having to be in most of this week to let some builders in I've not had much freedom recently and kept busy sorting some bits out at home that I had been putting off.

Hope everyone is as well as they can be on the various treatments and stages of the SBC rollercoaster.

Nicky x

Member

Re: Bone mets - please join in

Oh FF, how awful for that poor lady, I just pray she can get over it! Something so shocking like that could put her in an early grave!
Hugs Janette xxx
Community Champion

Re: Bone mets - please join in

Girls I'm definitely relieved that he is caught and can harm no one. They left more info out! He had gagged her , taped her knees and ankles together with duct tape, used those plastic zip ties and tied her hands behind her back, put a reusable grocery bag over her head and taped it around her neck, beat her, strangled her, and told her she was going to be meeting Jesus! Then stuffed her in the closet! I'm crying as I write this.I work with seniors and can't imagine any of them going through that. She was one strong woman to survive all that plus no food, water or light for 4 days. Praying for Karma!!!

 

 

Stillhere, Thanks for having my back! Bring it on him!

Member

Re: Bone mets - please join in

Nice wellies moijan
Do they do them in pink in a size 5 ?
Carolyn xxxx
Community Champion

Re: Bone mets - please join in

image.jpeg

Member

Re: Bone mets - please join in

Wow, so glad it wasn't you, FF and he has been arrested! Mind you, anyone messing with our Yankee buddy would have got a severe kicking and run off yelping 😆 😆 😉 xx

Member

Re: Bone mets - please join in

What a relief that must be for you, ff! Thank goodness he is off the streets! He didn't have to leave her there for 4 days - he could have rung the police and let them know where she was once he had escaped.

 

Anyway, so glad you are safe!

 

Hugs. Barton.x

Community Champion

Re: Bone mets - please join in

Hi ff
I was the old lady locked in a closet lolxx
Member

Re: Bone mets - please join in

FF
What a relief that he's been caught and will get his punishment ...at 17 he must be so disturbed ..at that age all I wanted to do was buy shoes and handbags !!!
Hugs xxxc
Member

Re: Bone mets - please join in

Oh that's a relief FF, they should through away the key.....scum bag!
Hugs Janette xxxxx
Community Champion

Re: Bone mets - please join in

OK girls! (For those of you reading my posts) They caught the scrum bag that stuck the old lady in the closet. We have a school for juvenile delinquents in our neighborhood. We have never had a problem in 21 years. This 17 year old ran away last Wed. We think he just happened to be going down the road when she pulled in and needed a car to get away. They are seeking to try him as an adult for attempted murderr + other charges. It is hard to explain but if you walk down the road about 1/4 mile straight ahead is my drive. He had to turn left onto the main road. He really should have went straight up my drive where he woukd have been out of site! This school is one if many that are part of a place called Deverux Foundation. Actor Sylvester Salone attended it. Thank God they caught this thug!! FF

Community Champion

Re: Bone mets - please join in

Bonariensis, I will keep that in mind if and when I have to make a switch! Thanks, FF

Member

Re: Bone mets - please join in

Hi Funnyface
Back to the subject of painful knees - I'm so sorry they are so bad. I haven't taken Letrozole but Exemestane has a similar if maybe not so serious effect and i've found that it seeks out and aggravates any joints or other bits that were suspect before I started taking it B x

Member

Re: Bone mets - please join in

Oh, ff, you must be terrified! Please be extra careful, and aware if anything looks strange when you get home - drive fast in the opposite direction and call the police! You probably know that anyway!

 

Hugs. Barton.x

Member

Re: Bone mets - please join in

What a terrible thing! Take care Funnyface
B xx