Bone mets - please join in

[Desi-2]

Hi Janette my history is similar to yours, primary in 2002 mastectomy and 5years tamoxifen no chemo and 98% not to return only grade 1. It was last July my mets were found it's now in ribs and spine. I had rads to sacrum 2weeks ago tmo and like you say boy does it get worse! I don't like to take the morphine either incase I start to used to it to early on either but the last couple of days the pain is definitely less so hopefully things are on the mend now. My onc won't give me bisphosphonates and I am concerned bout this everyone else seems to have them. I intend to question this again when I see him next. Can't help but wonder if the decision is money based! Hope not😟. Hope your pain starts to ease soon xx

[rosie53]

Hi Louisa,  my name is Janette im one of the newies, im being started on Denosumab in a few wks just wanted to pick tour brains about it, you say you would rather Xometa??? is the Denosumab not nice to have??

Yes im like you i under state my pain, iv been given zormorph, morphine and MSTs but have got to be in agony before i will give in to taking any of them!! scared the more i have the more my body will need.

Iv been put on tamoxifen for secondaries got mets in my hip, spine and ribs, had breast cancer 2007 grade 1 no chemo just radio was told by my onc that i had a 98% chance of it never returning!!!! i am totally devastated i still cant quite believe this is happening to me.

Had radio to my hip for pain thursday omg they told me it would get worse before it got better and it did!!

love janette xxx

[Jo_BCC]

Hi Dawn,

Lovely to see you posting here again.  Hope you are keeping well and enjoying the Bank Holiday weekend.

Best wishes,

Jo, Moderator

[2catlady]

Hi,Belinda &Dawn,thank you for posting you give us all hope reading your posts. Newbies and nearly newbies .
I hope you are both as well as can be expected .
I've missed your posts,huge hugs to you both,Helen xxxxxxxxxxxx

[livlassie]

Hi Nicky - dont get too anxious about the irradiated area getting "worse before it gets better". I've had pretty big doses to my hips. ribs and spine.  I had no after pain at all in my hips or ribs. The spinal (sacral) area was a bit tricky afterwards and i had to call out nightime docs. but if I had been warned beforehand and had an "action plan" in place, I could have coped much better. I will always make sure of this in future.  This disease is so individual that it's hard to predict how we will cope during and after treatment.

Hello to all you new ladies -I am two and a half years since dx. Primaries and secondaries ( bones and two tiny suspicious areas in the chest wall)  were diagnosed a couple of weeks apart = it fair sends you reeling, doesn't it? I feel very well but sore and much much older than i used to feel. I think i under report my pain to the docs as i don't want to be a moanie old nuisance. Does anyone else out there do this? I'm being treated with hormones ( two and a quarter years on Letrozole and now on Exemestane. I also get Denusonab injections once a month - in the arm. I did get monthly Xometa infusions until xmas and may return to them as I feel they were more effective and carried fewer side effects).

This forum has been very quiet recently. So sorry all you new folks have had to find yourselves here but it is a ver supportive place indeed,  Never feel bad about coming on and moaning or being upbeat either - all our moods and feelings are valid

Love to you all

Louisa x  

[dawnhc]

Seeing Belinda post has shamed me into posting! It is lovely to see so many newbies discovering this very select thread. I hope you will all find encouragement and support amongst us. Like Belinda I have been at this game a long time too. My initial dx was way back in 1990, with a few more primaries over the years until bone mets hit me in 2002. By then it had already gone all over the bones including all spine, hips, pelvis etc. and like a lot of you I thought my life had come to an end, or at least it would very soon. As each Christmas passed I would wonder if I would see the next one but the mets remained relatively stable with a bit of help from the rads team. I have been on different forms of bisphosphonates over the past 14 years, currently on zometa. Just before the bone mets was diagnosed I had a lot of swollen lymph nodes around my neck and was on chemo for that but they didn't prevent them coming each time the chemo ended. It was then my onc checked out my her2 status to discover I was positive her2+++ so went straight onto herceptin beginning of 2004 (just had my 159th dose of it!) costing the nhs a fortune and hope to continue to do so. I won't say it has always been easy and the last few years pain has become an increasingly difficult problem to control but I consider it a small price to pay for having 24 years of LIVING with breast cancer.

Dawn

xx

[belinda]

Just wanted to say Hello to all those just diagnosed. I was diagnosed with bone mets from the beginning, in my early 40's. This was in 2003. So eleven years ago now. I don't have any special diet or treatments just all the usual stuff. I've had tough times, switched treatments when needed but also had years of stability. Best Wishes. X

[2catlady]

Hi,Janette,yes,sometimes I have a bruised tummy sometimes okay. I buy emla cream from the chemist to numb my tummy before my injection( doc won't give me a perscription for it as he said it doesn't hurt!)
The bone juice does a good job and the rads can make pain worse before it gets better. Hang in there and keep meds topped up while it does it's job.
Sending you a huge hug,Helen xxxxx

[rosie53]

hi thanks for the welcome, nice to hear form you xxxxxxxx

[rosie53]

Hi Caroline, i am also new to this site, iv also got bone mets to my hips, spine and ribs, i am only 46 and like you i keep asking myself "why me" what have i done so wrong for this to be happening, im angry, hurt, upset and devastated but do you know what Caroline us women are made of strong stuff and are toughies.

wishing you all the luck in the world and sending you a hug love Janette xxxx

[rosie53]

Hi Helen, thank you for your reply you have all been so friendly and welcoming,

had my first zoladex injection on Monday and have had a lovely bruise since!!! i also have to have my (bone juice) Denosumab this way so hope im not going to forever stuck with a bruised tummy!!

Thanks for the hug sending you oneback  love Janette xxxxxx

[rosie53]

Hi Nicky, thank you for your reply it was so nice to see that i had got some replies as wasnt sure i had done right!! re: the bone strengther, im being started on Denosumab in the next few weeks i have this once a month as an injection (subcutaneosly). Had some radio to my hip area at the Christies (oh what lovely people they are up there) had a rough night Friday, i was told it would get worse before it gets better so was prepared for this but not feeling to bad now keeping up with morphine tabs so im sure thats helping.

So far i have found this site really helpful, when i got my diagnosis a few months ago i more or less wrote myself off but to read that some ladies have been living with this for years is a real confidence boost!!

Thank you so much for your reply

Janette xx

[2catlady]

Hi,porkie,thank you xxxxxx huge hugs xxxxxxx

[Porkie]

Helen

I'd like to add to all the hugs you have had sent - do hope that you get everything sorted when you go to your appointment in June. You sound a wonderful person and have given such support to everybody on site. With lots of hugs, Jackie xxxx

[2catlady]

Hi,Charlotte,oh,no I've never heard of rads to shrink it. I'll add that to my list to ask too.thank you for the info.
Hi,chocolate,thank you,xxxxxx yes,it's one day closer xx
Awful weather in NE too,hopefully we will get something planned for bank holiday.
I can feel all the hugging from you all.
Huge hugs to both you lovely ladies,Helen xxxxxxxxxxxxxxxxx

[Newyork]

Helen

Just wanted to send you a big hug sounds a horrible time for you just waiting around I feel your frustration! My primary has grown 3 times now treated first time with chemo, second time with radio and third time with chemo all worked to get rid of tumours. Don't know whether they are considering radio instead of a mastectomy worth a thought.

Try and keep yourself busy and you will get through this.

Charlotte

[Chocolates]

Helen you've sprung an idea. A coffee shop review!! I also spend a lot of time in them with friends. Glad to see you're a little better emotionally but please continue to look after yourself and take it easy. Today the 2nd is one day closer - a small step but you'll get there. Hope you have some plans for the bank holiday. Weather not great here but I'm looking forward to spending it with my family.

I hope you can feel us all hugging you and keeping you going.

Much love and huge hugs

Hxxx

[2catlady]

Thank you Lynn & Tink, xxxxxxxxx emotionally I'm a bit better today. Physically .....
Just wish the 2nd would hurry up and get here so I can get some answers and not have the we'll see next time in two months.(which has been going on a year) same questions same fight.
I'm going out with my friend today to do another coffee shop. Lol I could do a book on coffee shops in the North East.
Take care lovely ladies & huge hugs xxxxxx Helen xxxxxxxx
Ps I've checked PM and nothings there.xx

[Tinkerbelle]

Morning Helen,

I hope you're having a better day today and being looked after and pampered.

Sending uplifting and good thoughts your way.

I think it has already been mentioned but if you have a PALS centre in a hospital near you they might be able to give you some help to chivvy things along.  The more 'official' people that know your position, the more they can look into it and question your team's slow action.  I can't remember if your GP is any good, but he can ring them/send a letter on your behalf as well.

Obviously this is only if you feel up to tackling the (insert expletive here).  You shouldn't have to be going through all this.  (((((Helen)))))

Tink x

[Lynnq]

Hello Helen just wanted to post a hug to let you know that I am also thinking about you - I did post a PM to you but it got lost somewhere. I really do think that you ought to try for a different Onc.

When I wanted mastectomy the surgeon said that it would be "futile since the cancer has spread". However my Onc was supportive and we managed to get it done. Don't give up, keep nagging them although I know it is very wearing.

[2catlady]

Oh ladies,your replies have made me cry,not sad tears but tears as I'm so touched by your support and friendship. You are all wonderful ladies and I'm sending you all huge ,massive hugs back.Take care lovely ladies,Helen xxxxxxxxx
Oh,Tink,I wish I was having a CT or getting results,but I'm still waiting to have one. I'm going on my bones are okay as the calcium was good in bloods. But I won't know till ,if I ever get a CT scan.
Xxxxxxxxxxxxxxx
Desi,it would be great if we lived near xxxxxxx

[Desi-2]

Sorry your feeling down today Helen, really hope things get moving with your treatment soon. Be nice if we all lived a bit closer together.
Tracy xxxx

[roxy12]

Hi Helen,

Just adding my support here too. If you don't get satisfactory service on the 2nd of June you must change hospitals. If you have faith in your team you will feel so much better. You could get in touch with who Lulu suggests in the meantime so that you know what to do if necessary.

Wishing you the very best. Love Sheila xx

[Chocolates]

Hi Helen, just sending you a huge hug. This disease sucks - you always support everyone on here no matter how ill you're feeling. Today is our day to support you. Much love and please moan away. We're all here for you.
H xxxxxx

[Tinkerbelle]

Hi Helen,

I'm not surprised that you are having a down day today and saying how you feel is not moaning. Here's a hug ((((Helen)))) and hoping you get answers on the 2nd.  Are you having the CT scan then or will you be getting the results?

I understand the wanting to give up - it's just one thing after another and it wears you down.  Hopefully after you have got all of your results you can see things moving forward in a good way.

Tink x

Lulu - can you point me in the direction of some studies on removal of primary?  Mine has grown since mets diagnosis, but nobody seems to be interested.

Thanks

Tink x

[Lulu34]

Helen so sorry you have had such news even though the bones are good its so important to listen to the patient... More rubbish for you at the hands of the NHS.... We really arent doing much to inspire you.

Especially as there is now lots of evidence that suggests removal of the primary does improve outcomes and prognosis! Think everybody there needs a bit of an update.

I know its easier to attend locally but have you considered going elsewhere and getting the scans and treatments you are entitled to? Im lucky because we are a centre for excellence... Although they can still get it wrong but you shouldn't have to fight for things like surgery and CTs.

Have you thought about contacting PALS (patient liasion) they deal with complaints and are usually very helpful.

So not fair hunny.... sending massive hugs xxxxxxx

[2catlady]

Hi,Nicky ,thanks,I wish I could see him earlier. He comes from another hospital and only to mine on Mondays & next Monday is a bank holiday so I have to wait until the 2nd.
I just feel like every thing has been a fight ,to see BCN, to get CT,to get a mastectomy,to even get my blood results,to not see a psychologist. I just feel like giving up,I never get a brake with this dammed disease ,there's always a but...
Sorry for my moan just a bit down today,hugs to you,Helen xxxxxx

[nicky08]

Hi Law36

Sorry to hear that your Mum has had the bad news that she now has bone mets and we all know what a huge shock this can be (and is). I don't think it helpful that your Mum's oncologist/Dr gave a life expectancy at all, let alone saying it was only a few years,  As I have seen over the years that I have had bone mets (6 years and counting!) there are many ladies living long and pain free lives with this type of mets and, as been said already, there are newer treaments coming along all the time.  The statistics are way out of date and I remember reading this 2 years nonsense just after I had 'survived' my first year with bone mets and thinking 'I've only got a year left'!  It really doesn't help!  

Hopefully you will read the inspiring stories on here and also the posts on this, very long, thread to see that there are many treatments available and I hope the ones your Mum is now on will help her with her pain and keep the little uggers at bay for a very long time.

Nicky x

[nicky08]

Hi Helen

I just had to add a comment, along with all the other ladies who are supporting you.  I cannot believe that your 'team' (and I'm using that term loosely as they don't all seem to be on your side!) have not taken notice of your previous concerns and it has taken this long to get an ultra sound, let alone a CT. I am really shocked by this, especially as you have felt that things weren't right.  In my experience the oncologists say we should voice our concerns as we are the ones who notice what's not right and then they can act on it.

I know this puts the emphasis back on you but I would push for an immediate appointment with your oncologist, not wait until the scheduled one, to discuss these findings, as your BCN is not the person to arrange a different treatment plan.  Also are you able to request, before an appointment, a CT scan as well as a core biopsy of the new breast cancers that have shown up?  It may be that these are a different BC type to your bone mets (this can happen) and therefore they have not responded to the current hormone treatment that your bone mets have.  Just a thought as my receptor status has changed since primary and secondary dx.  All of this I know is a lot for you to have to deal with but I am so angry at the way you have been treated that I really felt I had to add something.

Sending you lots of hugs as well.

Nicky x

[Law36]

I'm glad to hear you are doing great ., that's great news!!! Yes I have been researching it the past few months and really getting some info ., just haven't gone onto a forum until now and I think it was just the shock of yesterday ! So thankyou for the support it has helped me greatly already xx

[Law36]

Thankyou so much I am already starting to feel positive about things ...hearing all your positive thoughts and actually getting some answers of what I've been thinking Thankyou agAin .

[Law36]

Thankyou for your kind reply it's deffo what I needed tonight ..... My mum had breast cancer 3 years ago they said it was er positive and she was put on arimidex after chemo ect... She has now been put on letrazole and clasteon for the bones to strenghen! When we saw the breast specialist last month he was very positive saying yes it's in the pelvis some in spine and some in lower ribs butiwe are not talking weeks or months we are talking years here so afer the shock we all started feeling quite positive !!! Then after onc this morning it's felt like our whole world has just broke with his statistics ! I thought let her have the radium tratment in two weeks and give the letrazole a chance ! It was just scary amd to be faro I wasn't even worried about going with my mum and dad today sus I thought we had heard it all a couple of weeks ago ! I think I am still in a lot of shock and although I have been reading the forum am dots helped me alot over the past three years have only joined tonight so Thankyou for the support already x

[Desi-2]

Hi Law36 sorry to read of your mums diagnosis, but as has already been said there are ladies who have had bone mets for much longer than 2years I hope to be one of them. I have mets to rib, sacrum and multiple spine areas, had radiotherapy to ribs and just last week sacrum and lumbar areas. I would advise her to be armed with stronger pain relief for after the rads as it can be very sore for a while afterwards. You should be able to get this from your GP. I was given liquid morphine by the oncologist before rads and my GP today offered something called MST a slow release morphine. I have found paracetamol okay for daytime but need more at night. Good luck with everything xx

[Desi-2]

Hi Helen I had a full mastectomy in 2002 I had reconstruction and went for the implant option, didn't have any problems with it although I opted to just have the implant didn't go the whole hog with nipple transplant and tattoos ect. But do have a friend that did. If you have any questions I'm happy to help if I can.
Tracy xxxx

[Desi-2]

Just wanted to say hi Janette. Like Helen I'm on letrozole. I took tamoxifen in 2002with no problems but for some strange reason I couldn't tolerate it this time round. It's great to be able to talk about things on here and not worry that you're upsetting or annoying anyone. Welcome xx

[roxy12]

Hi law36,

Sorry that your mum has had this news and I understand how shocked she must be. But please don't go by statistics! They are well out of date. I was diagnosed nearly 3years ago with secondaries to both lungs and still have no symptoms from these. When I found out at first about this my daughter did exactly the same as you have done and searched for advice on various websites. She found ladies who had been living with secondaries to the lung for 5 years and longer and this gave me hope. I'm still here and doing well although I have had progression since then. This is being treated and I am still positive that I will be here for a while yet.

There are ladies on here who have been living with bone Mets for 10 years so please tell your mum to try to remain positive. 

Love sheila. Xx

[Chocolates]

Law36 - so sorry to hear about your mum and what you went through today. It must be such a shock. All the ladies on here are really supportive and many have lived for well over 2 yrs - some as long as 10 or more. The inspiration stories on here are really good and when you feel able I suggest you have a read. Many of us refuse to believe the statistics as they are always out of date and don't take into account the new drugs available now. I would find out exactly which type of cancer your mother has been diagnosed with and then look for a thread on here that matches. You'll then be able to check out treatments etc and get an idea of questions you may want to ask at your next onc appt.
you're in shock at the moment and it's been a dreadful and frightening experience but once your mum's treatment plan is in place I'm sure you will all feel a lot better and more positive.
Remember we are all here for you.

Huge hugs, hxxx

[2catlady]

Thank you ladies,hugs to you all. This June appointment can't come soon enough !! They wouldn't let me have mastectony as they said there was no point in docs words "it's like shutting door when horse has bolted"I don't see that doc anymore.
Oh,Tink,that's put my mind at rest xxxxxx thank you.
CT scan hopefully next but god I'm terrified what that's going to show now! As haven't had one for nearly a year.
Huge hugs to you all and thank you for the advice and support,Helen xxxxxxxxxxx

[Tinkerbelle]

Helen, good news about the bones - pants about the new tumours and your bcn/hospital not listening.

I too hope your appointment is for the first week in June. I'm not sure who you would complain to, but you can ask to see the consultant (not their registrar) and ask for an explanation.

I had a mastectomy a few years ago now.  I went down for surgery at 4.30pm and was home by 11.00am the next morning (with a drain in).  I didn't need any painkillers and only took a couple of paracetamol to keep the nurse happy.  My drain was taken out a few days later at hosp.  I was able to put my arms (gently) above my head from the word go and made sure I did my exercises.  Wound healing went a bit pear shaped and needed packing for a while, but I did that myself at home! 

Huge hugs to you - if I was there I think I would be tempted to bop your team on the nose.

(((((((Helen)))))))

Tink x

[Law36]

Hi I am looking for advice on behalf of my mum, 3 years ago she had be
Breast cancer with nodes involved , she had chemo and radium and has been feeling positive since ....... She then had a fall in February and after specialist app and bone scans ect we were told that it has now gone to her bones , mainly her pelvis which is where she is getting alot of pain and in her spine and bottom of ribs ! After finding this out and trying to get over the shock and start with positive thinking a no chemo they said thank god ! We have had a oncologist app today which has shocked us all it is in the bones but no other organs ! And he has said 18- months -2 years on an average !!!! As you can imagine our world has collapsed today and as my best friend my mum is trying to remain brave ( for me I know ) ........ I know this is an average but was just wondering if anyone had any positive feedback that I could really do with hearing today as I have only just joined this group as I feel that no one else will understand ......ps.... She is booked in in two weeks for 5 radium and is on let's ozone and clasteon . And co coda ol for the pain ! I have read a lot of posts on here and would like to sat Thankyou in advance x

[Chocolates]

Oh Helen, I'm screaming now - why didn't they listen to you? I'm so sorry for these results. You are really going through it at the moment and an appt in June. Just not acceptable. You must be so frustrated. Haven't had mx so can't help there but am sending huge hugs your way.
On the flip side bone results are good - which is a relief. I hope mx is booked in ASAP. I agree you might want to change hospital but sometimes this is easier said than done. Hopefully though a change of onc might be on the cards. It's so difficult isn't it to think logically when our emotions are all over the place.
I know they are the experts but why don't they listen. Let's hope things move quickly now for you and appt is first week of June. Still too long but any later than that unacceptable. I'm disappointed that you asked for mx yet not done. What were their reasons I wonder?
Anyway thinking of you. Take care and look after yourself. Here if you need us.

H xxxx

[madge1]

Hi Janette and welcome to to this post. You will find a lot of support and information on here from all these lovely ladies, ask away if you have any questions as we've all been in your position. It's having extra support from women who are going through the same horrible disease!!!!!
Wishing you well.
Julie x

[madge1]

Dear Helen,
I'm sorry to hear about your further tumours, and the way that you have been treated!!! I wish you all the best for your next appt in June, which seems forever!!!! I would definitely complain about your care, even though work within the NHS and perhaps you could either change hospitals like you said previously or get a 2nd opinion. Sending you a huge hug.
Love
Julie xxx

[pumpkinsue]

Dear Helen, 

                       I am so sorry to hear your news. Have they given you a plan?  Like the mastectomy and xeloda or something.  It must be so frustrating and upsetting have this happen.  I think they need to be more aggressive do you?  Although I suppose if you have a mastectomy it may negate the need for xeloda as letrozole is working.

Thinking of you and hoping you have some good news soon. 

Sue. XXXX

[2catlady]

Well,lovely ladies, just back from ultra sound. I now have multiple new tumours in breast and primary's have grown. I had been trying to tell BCN for 8 weeks that they were growing.
So I rang hospital and have said I'm having a mastectomy.
Strange thing is bone blood results are all still good so it looks like letrozole is keeping bones in check but not breast. When I eventually get to see onc in June this will be discussed . They think treatment will be changed and I'll get my mastectomy I've been asking for for a year!!
Huge hugs to you all,Helen xxxx
Any advice on mastectomy would be greatly appreciated as never had one with my double whammy diagnosis xxxxxx

[Lucy_BCC]

Hi Janette and welcome to the BCC forums

In addition to the support you have found here, our helpliners are on hand with practical and emotional support for you on 0808 800 6000 weekdays 9-5 and Saturdays 10-2 so please feel free to call for a listening ear

You may find some of our other support services helpful too and you can read about these and further secondary information via this link:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

[nicky08]

Hi Janette and welcome to the secondaries part of the forum, somewhere that none of us want to be 😞 However as the other ladies have said you will find a lot of support, information and experiences on here. I continue to use this forum, having been diagnosed with bone mets in 2008, and have learnt so much as well as having had great support. It will take time for you to adjust to the new 'normal' but we all seem to get there at some point, especially once a treatment plan is in place. It's worth reading through some of this thread as there are lots of different experiences and treatment plans in place so it may help you to ask the relevant questions, if you feel you need to. I would say that most of us bone mets ladies are on some sort of bone strengthener so I would ask your oncologist what the plan for you is. These help strengthen the bones (obviously!) but also help relieve pain from the bone mets and this can help really quickly, as I've found.
Feel free to ask any questions you have, one of us is bound to be able to help.
Good luck with your treatment.
Nicky x

[Chocolates]

Hi Janette, it's lovely to have you but so sorry you have ended up on this site. I'm fairly new too, and it's been such a help and support to me whilst I try to find a path through this horrible journey. Like Helen has said we are all here for you and you can say anything you like - on good days or bad days.

There's another thread - 'just a thought' where ladies have introduced themselves and their experiences so far and you might when you're ready want to tell us a bit more about yourself.

I too have bone mets as well as lung mets, I'm her2+ so on a different treatment plan to yourself. However everyone is so friendly on here ask away - there's always someone willing and able to help you.

I hope your treatment plan has made you feel more in control and you're responding well.

With much love and hugs, h xxxx

[2catlady]

Hi,Janette,so sorry you have had to join us. But we are a friendly helpful bunch . We are here to support,give advise if we can and cyber hugs that we all need.
I'm coming up to my first year of being diagnosed with bone mets and primary at the same time. I was on tamoxifen but it didn't work for me. So I've been put into menopause with zolodex injections & on letrozole. I also have zometa( bone juice) for my bone mets.Please feel free to ask anything if we can help we will.
Sending you a huge hug,Helen xxxxxxxxxxx