Bone mets - please join in

[Lucy21]

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

[PMOL]

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

[Moijan]

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

how lovely to hear from you xxx

Moijanxx

[funnyface]

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

[stresshead]

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

[Moijan]

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

Xx

[rosie53]

Oops sorry that post went twice! 

X

[rosie53]

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

[rosie53]

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

[bonariensis]

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

[Moijan]

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

[Doodles123]

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

[Carolyn52]

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

[nicky08]

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

[Carolyn52]

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

[Doodles123]

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

[bonariensis]

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

[Barton]

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

[funnyface]

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

[nicky08]

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

[rosie53]

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

[funnyface]

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!

[Carolyn52]

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

[Moijan]

[Stillhere]

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

[Barton]

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

[Moijan]

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

[Carolyn52]

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

[rosie53]

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

[funnyface]

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

[funnyface]

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

[bonariensis]

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

[Barton]

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

[bonariensis]

What a terrible thing! Take care Funnyface
B xx

[rosie53]

Omg FF, that is terrible! You take care hun!
Hugs Janette xxxx

[Carolyn52]

FF
I agree jail is too good for these people ..they get fed, watered and pampered in prison ...more than lots of good people get these days.
Just u keep safe ..keep house locked etc etc and don't be afraid to shoot !!!
Hugs xxxx

[funnyface]

There also was a lesson in this as my husband pointed out! Her car wasn't there since it was stolen, so the daughter in law could have just left and said, "I guess she went somewhere!" Thank God, she continued inside to look! That poor lady couldn't have lived much longer without food and water! Four days is a long time for a young healthy person, let alone an elderly person. It teaches us to persue what you went there for. Call the cops if you don't have a key or have any fears! Listen to your instincts! Better to be safe than sorry! I just hope they get this person! They are trying to figure out if these home invasions are related to each other. All of them have been with people home!  People have been hit over the head with a gun and knocked out in most of them. If they have a gun the intention is to use it! We do have one law here in most of our states, if you commit 3 violent crimes you can be sent to jail for life with no parole! Hope if they get this person that this might be possible! Jail is too good for this person!! FF

[Carolyn52]

Omg FF
That is terrible and what a worry for you especially as u live so isolated ....yep u need to get armed and dangerous as protection but how horrible that u can't just live in peace and quiet with this illness. The world is a horrid place especially when u get older and more vulnerable .
Sending hugs across the pond ..
Xxxxxx

[funnyface]

OK friends I have a new FEAR!! There has been a few home invasions in our area. As in coming in and robbing people in broad daylight while they are home. The one that was in the news today was on the road I live on!  Just three minutes down the road. Last Wednesday a 72 year old lady had just arrived home. She was grabbed by a masked man dressed in black and hit over the head. He then tied her up, put a plastic bag on her head (luckily it was loose)  stuffed her in a closet and left her to die. He then stole her car and left! Her daughter in law had stopped by this past Sunday to do her normal check on her bc she lived alone. She found the poor lady in time! She was in that closet for 4 days before being found. I had drive into town  on Sunday and was on my way home and an ambulance and police car passed me. When I got closer to home I saw 3 police cars at the house, but had no idea this is what happened until I heard it on the news today! This girl us applying for her permit to carry! I already know how to shoot. Hubby and I like to target shoot! I'm a good shot! My house sits way back in the woods! I can't see the road or another house, but this means no one can see anything going down, either. I feel like a sitting target. FF

[funnyface]

Carolyn, Sorry my kindle changes letrozole to that every time I type it!  I missed fixing that one!

[Carolyn52]

Hello pippin
As far as rads are concerned ...they say two weeks and that's about right ..I had a big one off blast and it was two weeks ...15 months later I'm pain free in that area ...I don't take any pain killers ...the denosumab might give u some bone aches for a few days mid month though ...but I'm sure u will be back to marathon running or bungee jumping soon!
Ha ha ....xxxx

[Barton]

Hello Doodles, welcome, but sorry you have had to return to the website! I hope you get settled with a treatment plan soon - everyone else is right - it does help a bit knowing something is being done.

Janette - I thought it must be a real thread, too! Doh!

Pippin - sorry, but I can't help with that - luckily I have never had to have pain control rads (yet, at any rate!), but I'm sure someone will be along soon as I know quite a few ladies have had them.

Carolyn - so sorry your teeth are still painful (probably not caused by your cold, then). It's miserable having painful teeth, and all the time you are dreading the visit to the dentist! Well done with the new tablet (but naughty grandson to break it - not deliberate, I am sure though). It is fun setting up a new tablet or phone, isn't it! And the thrill of it arriving in the post!

Hugs to all. Barton.x

[rosie53]

Hahaha! Omg I'm a numpty! Thought it was a real thread 😂😂
Janette xx

[Pippin]

Hi Stresshead, in reply to you post of 19th Feb I think you were referring to something else. I had been going on about calcium and vit D, just mundane stuff!

Hi Doodles123, I feel for your situation re your kids. My three are a bit younger. I am actively trying to prepare them for when I am not arround. I am very focussed in trying to do this in a positive way and I guess my personality is such that I find the albeit uncertain deadline (excuse the pun but I have a horrid sense of humour which I just cannot get rid of) very energising (not quite the right word but I think you will get my meaning). Appart from the practical things though the emotional side is tougher particularly for the kids.

I am at my PC 'cos I am finding walking painful and difficult. I had RADs to hip and pelvis 11 days ago and the first Denosumab 8 days ago.  For a good few weeks before this I was asymptomatic. I want it to get better again. Does anyone have any experience of how long the RAD-related exacerbation of pain lasts? 

Pippin

[Carolyn52]

Jeanette
The swear thingy is a joke ...as we get bleeped for naughty words ...I'm too much of a lady !!! Ha ha.
Glad to see you posting again ..hope u ok and like me hoping for spring soon ...liking the lighter evenings already ...
Done a little bit of retail therapy lately ..not a big spend but grandson dropped my tablet and so I have just bought a new kindle fire for playing my bubble games on ...my lovely postman brought it today so I'm like a little kid setting up today !! I use my phone for e mail's and laptop for shopping so tablet a small part of my life really !!!
Carolyn xxxx

[rosie53]

Hey Carolyn, what's this "swear Wednesday" thread all about? I'm a bit useless on here I only tend to hang out on the boney thread!
Oh and don't worry I'm doing a good job of eating your share of chocolate! 😆😆aww but seriously I hope you get sorted soon!
Hugs Janette xxxx

[rosie53]

Hi Doodles, yes we all get what you mean about being angry with the world, we've all been there and still feel like that some days! Like you the only thing I thought of when I got my mets dx was my children (25 and 27) it broke my heart. But you do toughen up and "learn to live with it" and like you said this forum is an amazing support.
I hope you get your treatment plan in place soon.
Hugs Janette xxx

[Carolyn52]

What is metronome ..I've googled and its says its a musical instrument ..doh .
Well at least nothing sinister going on the knees but sounds really painful for you ...surgery on knees is a big upheaval that u probably won't want to go through ....
I do have bone Mets in my right knee but apart from creaky ..manage ok without any pain relief .
I am to see dentist but waiting for a bit longer since denosumab finished 7 weeks ago to see if the teeth get any better ..it seems a different tooth every day ..sounds stupid really but its liveable and yes I've got a nice mouthwash I swig all the time and a very soft toothbrush !

[funnyface]

Carolyn, Yes my knees were scanned last summer . I had a bone scan. All clear. Plus they both had MRI's. It started 2 weeks after I took the letrozole. At first I thought I had twisted them too much while camping about 2 weeks b4 they started to hurt. Then I realized they should have hurt straight away. I went on line and found all the comments on letrozole and realized this was the culprit. They are also worn out! The combo effect if worn out/letrozole isn't good!!! It us working so well on the cancer I won't give it up! 

I hope you get to the dentist soon! Some pains I can make it through, others I can't! I'm at my worse with tooth pain. Would magic mouth wash help any? I wish you could have seen me one night. I searched the internet for ways to relieve tooth pain. Ibuprofen wasn't working and I had no good drugs!, I was like a mad scientist mixing up solutions and trying  them. I'm sure I looked like one too with my reading glasses and robe on, plus my wild bedhead hair! 

Have a great day! FF

[Carolyn52]

Hello doodles ..love your name
Unless I back read your last posting ..i cant remember if you know yet what treatment you are having or are you still waiting to see oncologist ...once I had the dx ..I was put on letrozole, adcal had rads and a hip op within a week .so nhs did me proud . ( and hospital dentist took out two teeth ready for denosumab the same week!!)
Anyway ..why not join in Wednesday's swear day !!
Carolyn xxx