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Bone mets - please join in

Loulou1007
Member

Re: Bone mets - please join in

Thank you Phoebe for taking the time to reply. Firstly I would like to wish you a happy 50th birthday next week 🙂

I take on board what you say about PMT it does feel like that. I have only been on the Palbo for 5 days and they warned me about I could become neutropenic so I am having blood tests to what bloods. I always ask for a print out of my blood results after having a test. I have only just joined this group but reading many posts does inspire and give me hope. It is all very raw and a shocking discovery when you are more or less told they didn't think I had secondaries, thanks goodness I pushed for that blood test. Louise xx

Loulou1007
Member

Re: Bone mets - please join in

I am sorry to hear about your mum's bone mets and I wish her well. Thank you so much and you are so right!!! What do they know I have read a couple of stories on here with lovely ladies 10+ years and still living with their secondaries, surely its a chronic condition rather than incurable? I asked for my prognosis which I was told 4-5 years and I also have this in a letter now. If a patient asks, why not stay something positive, my Oncologist actual words words was 4 - 5 year but its a crystal ball.....it was like he was just doing his job, however we are humans with feelings. My BC is ER positive.

I really appreciate your reply. Thank you, love and hugs xxxx

pea
Member

Re: Bone mets - please join in

Hi Louise,

I was DX de novo secondary in May 2018 with mets in my sternum. It’s my 50th birthday next week.  I’m on palbo too but in combo with anastrozole, zoladex and denosumab. The palbo is keeping it under control and my scans show no evidence of active disease. I’m often neutropenic so mainly have two weeks off before embarking on 3 week courses with of palbo. I don’t feel any different when I’m neutropenic. My main side effects are menopause ones caused by the anastrozole and zoladex.
I am replying regarding your post saying you are currently feeling really down. I have noticed I have these feelings for a couple of days in cycles at the end of each three week session of palbo. It feels like PMT used to for me, emotional symptoms wise. I also found lockdown made me feel even more emotional. My family and friends are great support too and it’s so important to have that. I find being honest, to myself and family, about how I’m feeling really helps me acknowledge and move on. I also talk to our local Macmillan Clinical Psychologist, after asking my oncologist for a referral, and I find these monthly sessions really help. Can you get referred to a psychologist?
 I cope better during these “down” times knowing they will abate in a day or two and that it’s probably linked to my meds. It’s also normal to have these thoughts in our situation and, for me, it would be more damaging to bury them. Most of the time I’m living my best life — active and happy! 
I don’t have a prognosis as my oncologist said they don’t have data beyond 5 years or so because trials haven’t been running long enough as we are on newer meds. I’m inspired to hear others in this forum, and also those I know at our local Secondary Breast Cancer group, have been living with secondary bc for longer than 5 years. 
Take care and sending virtual hugs 🤗 

Phoebe x

4748
Member

Re: Bone mets - please join in

I totally agree.  I have one mets in my T-9.  I have responded well t9 treatment and plan to live a long life.  
I have read of women outliving the 10 year mark.  I encourage you to live in hope.  Live a fulfilled life.

Secondarysister2
Member

Re: Bone mets - please join in

Hi Loulou,

 

First off I am so sorry about you're diagnosis, I found this forum to be invaluable when my mum got diagnosed with bone mets Sept last year.... it's a welcoming place and everyone is here to support each other and give advice!

However, after hearing your story, I am angry for you....  I don't see how they can tell you 4-5 years?! They don't know how you will react to treatment! There are ladies on this forum who have been living with the disease for over 10 years!! The statistics are so outdated! Obviously there are no guarantees to live over 10 years, but they sound very pessimistic!

... and literally... what do they know??!!! It seems like your secondary diagnosis was only picked up, because you pushed for blood tests!! The oncologist told you he was surprised ? You will probably surprise them again and outlive their silly statistics! 

 

What type of breast cancer do you have ? Do your research and be your own advocate!!! If you have any questions about anything, then post on here! 

Sending you lots of virtual hugs and love at this time! X X

Loulou1007
Member

Re: Bone mets - please join in

Hi All. I was diagnosed with secondary BC in my spine on 17th June 21 (3 lesions). To be honest I didn't have any symptoms I was attending an Oncologist appt first one F2F in a long while and mentioned that I had not had any blood tests, scans since my original BC in 2016. My Oncologist replied that I didn't need any as was fine, I pushed for a blood test to measure CA15-3 markers which came back elevated at 48, was sent for bone scan which discovered a hot spot at top on spin but Radiologist said it wasn't high activity it was medium and probably not cancer, then had an MRI followed by an appt with Oncologist who gave me the bad news and who said he was very surprised with the results! Currently it is only in my spine. I seemed ok to start with but this weekend I have been tearful with no positive thoughts.......I do have a supportive family but I have been so very down this weekend I feel for them. I am 51. I started my treatment plan on FUlvestrant and denosumab injections last Thursday with a Palbociclib tablet once a day for 3 weeks then a week off. Are there any other ladies on the same treatment? My prognosis is 4 - 5 years. Any help or advice would be much appreciated. Louise x 

4748
Member

Re: Bone mets - please join in

I also want to thank you for your reassuring word.

artygirl2061
Member

Re: Bone mets - please join in

Hi Julie 

Thank you so much for getting in touch. Your words and the fact you are in your 11th year has really lifted me! 

This forum is wonderful; already it is helping get through these first awful days. 

Love Sharon x

artygirl2061
Member

Re: Bone mets - please join in

Dear 4748

That is so kind of you. Thank you.

Love Sharon x

JulieD
Community Champion

Re: Bone mets - please join in

Oh Alison,

I am not surprised you are feeling low and scared. Your Oncs should be ashamed of themselves and need to learn better patient interaction skills.

I have just replied to artygirl and I  will say the same to you. Hold on to hope. I know that must be particularly hard at the moment, especially the way your Oncs have behaved BUT no one can really predict how any individual will respond to treatment or how long we have to live. I had my primary in 1999, had everything thrown at it, in 2010  after many months of pain I  was finally listened to and was found to have bone mets. 

I have had radiotherapy and have been on Femara and 4 weekly infusions of Zometa plus the calcium/vitamin D. I am more easily tired than I  used to be, my pain levels fluctuate but are generally well-controlled, I find standing for any length of time uncomfortable/painful and my mobility is not what it was (I often need to stop for a little rest). However, I  am still here, still living my life, still enjoying myself and mostly doing well. You do get used to a new normal, it takes a little while but you get there

I'm afraid you are not alone with the reaction of others. I  know quite a lot of us have lost contact with people we thought were friends. However, this site is a good place to make new friends, ones who understand.

Best wishes fr the following few appts, I  hope they improve and I  hope you get paid n relief and a good treatment plan,

xx

4748
Member

Re: Bone mets - please join in

Of course, please do get in touch via email.  Would you like for me to keep you in my prayers?  Also we have a prayer group in our church and I can ask they pray for you too.

JulieD
Community Champion

Re: Bone mets - please join in

Hi artygirl,

I am sorry you find yourself joining us. It is hard to take it all on board at the start but I  hope you'll see from the forum that there are lots of us living for a good while with secondaries. You will see on this particular thread that I  was posting years ago 😀

I do not have liver involvement but I  do have bone mets. I was dx with bone mets in March 2010 so am in my 11th year!! 😄😁 of secondaries. My mantra has always been hold on to hope and I  hope that by seeing there are people like me on the forums who are years living with mets, that those like you, more newly diagnosed, will get some hope for your own future.

Good luck with treatment when it starts, I  found it a little easier to deal with once I  had a treatment plan and knew there was something being done to help control further spread.

Do keep using the forum it's a great source of information and support. With best wishes JulieD X

artygirl2061
Member

Re: Bone mets - please join in

BTW amazing news about your remission!! Long may it continue! 
x

artygirl2061
Member

Re: Bone mets - please join in

Hi 4748

Thank you so much for getting in touch. It has really reassured me. 

You sound like you have really been through it but clearly are very resilient and I am grateful

for your wise words about accepting a secondary diagnosis.

 Thanks, too, for the words about your faith and the great comfort it brings you. Whilst I am not a church going Christian I do believe in a god and my daily prayers which I have always said are, I believe, giving me strength. 

It would be great to keep in touch with you; thanks once again for making contact. 

Sharon x

 

artygirl2061
Member

Re: Bone mets - please join in

Hi Daisy

Thank you so much for getting in touch. It has really reassured me.

I am so sorry that you find yourself here and what a terrible shock for you to get a de novo secondary diagnosis; you have done so well to get to this point.

Such good news about your first scan and also that treatments are not giving you too many side effects. No treatment plan for me yet as only diagnosed on Friday.

Very up and down at the moment and told my four daughters yesterday which is possibly the worse thing I have ever had to do. Fortunately I have a very supportive husband and family who are getting me through these first days. 

I will let you know what my treatment plan is; it would be so nice to keep in touch as we have a similar diagnosis.

Thanks, once again, for making contact. 

Sharon x

 

I

 

4748
Member

Re: Bone mets - please join in

I was diagnosed with stage 1 in March 2015 - no lymph’s involved at the age of 45.  In Dec 2019, 3 months before the 5 year, I was diagnosed with stage 4 - mets to vertebrae T-9.  I am now 51 years old.

First of all I am so sorry you are going through this. It was devastating for me, my husband and my children.  The world fell apart.  It took me a good 9 months to accept my diagnosis in the midst of COVID. THERE IS HOPE.

Physical and emotional symptoms:I experienced depression, insomnia as a result of the news.  On top of this I have been left with permanent tinnitus due to treatment.  My thick long hair also suffered.  I had a lot of loss/thinning last summer, this stopped aprox 8 months into treatment with normal loss now and volume coming through again. I also experience dryness especially affecting my intimate area causing cystitis.  Treatment has taken me to a permanent state of neutropenia .I thought I would not be able to live/cope with a secondary cancer, however, I did and I am still doing it.  Do not get me wrong, it is not easy.  Some days are harder than others, yesterday was not a good day with regards to thinking. 
How far have I come: 

Jan 2020 I was given palliative radiotherapy to release spinal stenosis and started on Ibrance, Letrozole in February 2020 with the addition of Denusomab injections every 6 months.  At my 6 month pet scan I was already in complete remission. My last scan March 2021 also showed complete remission.  My next PET will be Sep 2021.  I still work full-time and only a few of my close friends have recently found out I am a stage 4.  
What has helped me moving on: God is good all the time.  He has gone before me and stands behind me in case I fall back.  He has provided me with a husband who loves me and is understanding, with a daughter and a son who also support me.  With friends and Church who love me and support me in prayer and care. With a good medical Oncology team who keep a close watch on me every month. I am learning to live a day at the time.  When I fall I lift up my hands and ask almighty God to pick me up.  When I am weak in spirit I raise up my voice and call out to God to help me.  My prayer is that this treatment will continue keeping me in remission ‘forever’ and that I will seen the goodness of God in the land of the living, that I will grow old with my husband, enjoy my children and grandchild and to continue living a purpose filled life.

You will need time to digest the news. I remember being told by my breast nurse that I was mourning, I ‘mourned’ the loss of my primary cancer.  I lost my primary, I wanted to keep hold of it - I did not want the ‘secondary’ I hated it! It took me a good 9 months to accept, it might take less for you, but you will get there.  If you know the God I am talking about, the great comforter, hold on to Him.  If you do not and want to know about Him please message me privately.  My hope is in Him and I do not know how I would be giving the next step without Him.

 

 

 

Daisy1257
Member

Re: Bone mets - please join in

Hi Artygirl

I'm sorry to hear of your secondary diagnosis especially as you have been through this before.

Like you I have secondaries in the bones, mainly spine, ribs and pelvis also in the liver. But I was diagnosed straight to secondary. It was a massive shock and completely out of the blue. 

I have been put on ribociclib, letrozole, Denosaumaub and zoladex.  So far tolerating meds really well and little side effects apart from mild flushes. First scan in May showed shrinkage in liver and healing of bone.

Have they told you when you will start treatment? I felt so much better once treatment started. Try and stay positive as lots of treatments available.

Big hug.

X

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Don’t know if I am on right chat but just wanted to make contact.

I was diagnosed with breast cancer in 2016 (er+ 3/19 nodes. Pre-adjuvant chemo, lumpectomy, radiotherapy) and found out this afternoon that my cancer has returned in my bones and liver. 

Would be great to hear from  others in my situation  and how you are doing. 

Thank you

Sharon 

 

 

Liz0418
Member

Re: Bone mets - please join in

What a horrible experience for you I know what you mean about the cold way that oncologists can be but you have been treated in a terrible and unprofessional way  I am 3 years in on palbo letrozole and zometa bone strengthener . Initial I was told my secondary lump was scar tissue but after 5 months of asking to be referred again was found to have secondaries In both lungs base of spine and pelvis. Scans 3 to 4 monthly show things stable but do get periods of really bad hip pain affecting mobility. Initially I felt as if I was in a no hope situation and the way it was approached made me feel untreatable unimportant and just another number. No-one should feel like this you will get strength and hope pain relief and once treatment kicks in you will feel more in control Yeah we are not curable but are treatable and are important.xx sending you love and hugs Liz xx

Jools-50
Member

Re: Bone mets - please join in

Hi there Alison

I'm actually shocked reading how you've been treated, some of those oncologists should not be in the job! They have no idea how well you will respond to treatment, there are ladies on this forum who have been living with secondaries for years. I was diagnosed with spine and hip mets (and possibly lung, still being monitored) slap bang in the middle of treatment for primary BC, mine had actually spread during chemo, however when I started on palbociclib letrozole and denosumab, my first 3 month scan showed healing in the bone and no further spread. Please stay positive, the answers they gave you tells me they haven't a clue! 

Take care

Jools xx

DiJoy
Member

Re: Bone mets - please join in

Oh my Lord, how awful. I too have extensive mets in my spine, although currently nowhere else. I'm being treated with palbo + letrozole + denosumab. I have also just signed up to the COC protocol (by all means message me privately if you would like more info. on this).

Your oncologists have no right to speak to you in such a way, I'm sorry but they just don't as they have no way of identifying which patients will benefit most from which treatments. To be honest, I haven't asked for a prognosis, as I know that this is primarily dependent on what happens in my spine (Palbo is currently keeping things stable), and I don't think my oncologist would give me one if I did! All she has said is that "We are hoping to keep this cancer at bay for a long time yet." I'll take that for now.

I truly wish you well, and hope that the pain management you are offered gives you some relief. xx

Jennie60
Member

Re: Bone mets - please join in

OMG Alison Mac, I have just read your post and can't  believe how cold your oncologist is being. I was diagnosed in 2019 with secondary in my liver, lung and lower vertebrae in my back. My oncologist said at the beginning we can treat this for years. I've been on hormone treatment which sorted the lung and back, then iv chemo for 19 weeks  but liver grew again. Now capecitabine which had reduced liver mets. I ask each time a change is made and oncologist always says there are lots of options. He never gives me a time limit on life but encourages me to enjoy it.

I think if I were you I would change oncologist. Positive thinking keeps me going, you need a positive attitude from those who are treating you. 

I really hope things improve for you, so many people on this forum live for years, even when they are told they don't have long. 

Sending you love and good positive vibes. Jen x

AlisonMac
Member

Re: Bone mets - please join in

Hi I'm 53, been diagnosed bc mets to bones & liver. All found over last 3 weeks. 4 years on from original bc. HER+ Stage 3, right breast mast.+recon. Have had debilitating back pain for last 6 months - Doc eventually referred me for scans. Been non stop hosp appointments and phonecalls (due to Covid lot of info been given to me over the phone) so I only saw my scans yesterday with orthopedic specialist - they want to operate on left femur). Next week 5 sessions of radio to 2 spots (shoulder & hip) started on Let. Pal.+bone strengthening drug to follow week after. Pain has been level 10+ for weeks, they are finally getting a pain specialist from the local hospice to work with me. They've had 3 different oncologists speak to me - I've found them all cold & patronising. Today I was at radio planning & onc kept saying "you are going to die from this" & to majority of my questions "good question but I don't think it's helpful to discuss now". The mets are extensive in my spine, plus skull plus sternum. Told prognosis by oncs "1-2" "3-4" & today "3 months to 10 years". I feel I can't take it anymore. I'm completely shattered. I'm freelance so will prob lose my work. I feel a "number" with these consultants. I'm not an idiot & I don't know why oncs are so cold. Already I've had friends say "I don't know what to say" & then rush off the phone. It's all been so fast. I live alone - keep thinking about a painful death because the pain has been so bad.

Best wishes, Alison

 

Timmycat
Member

Re: Bone mets - please join in

Hi Siany66,

Also so very sorry to hear that your sister's markers have gone up. There's new drugs being trailed and since January 2020, I've been on one of them, it's Ribociclib, (Kisqali) I'm taking it along with Letrozole and zometa bone infusions. But I have mets in my spine, ribs, and pelvis, not the organs, so possibly a different drug would be used for bone and organs.

I've been hearing about Capesitabine too, this seems to have positive feedback, so there must be oral chemo out there that your sister would be happier with.

Wishing you all the best and hope all gets sorted out for your sister, sending you both virtual hugs 🤗 xxxx

Ruby2016
Member

Re: Bone mets - please join in

Dear Siany66,

I am genuinely sorry to hear that your sister’s markers have gone up. I am still on my first line treatment, Palbociclib, so don’t have personal experience of second line treatment. However, I do know from other men and women’s experiences and also what my own oncologist has already mentioned to me, that there are other oral chemo tablets to take. 

For example, there is one called Capecitabine which might be my next line of treatment. I have been reading of several others on this site but can’t recall the names of them so won’t misquote.

Very best wishes to your sister. Also, I am sure it helps her having such a supportive and caring sister.

xxxxxxxxxxxxx

Siany66
Member

Re: Bone mets - please join in

Hi I have come back to this forum after 7 years of my own diagnosis.

My sister has been diagnosed with stage 4 secondaries in her spine and liver and lungs after her initial primary 10 years ago . She has been stable for two and a half years on oral chemo but now her markers have gone up and she is worried this means hurt bone mets are getting worse !
She is adamant that she doesn’t want to go onto intravenous chemo as she will most certainly loose her hair and it won’t grow back this is so important to her .

I suppose what I’m trying to ask is anyone in same position ? Are there any other options apart from intravenous chemo ?

DiJoy
Member

Re: Bone mets - please join in

Hi Windflower,

My story is very similar. I'd been to the GP with leg-pain a week or two before my incidence of breathlessness, as I really thought I had a DVT. She did all of the tests (except the one that would have shown this!), and I was sent away and told to take Ibruprofen 😞 Anyhow, I started to get breathless to the point that I relly thought I was having a heart attack and called 111. The rest is history... multiple PEs, caused by spine mets.

I was followed for 10 years post my original diagnosis - Mainly because I was 'young' (40) when first dxd., but the follow-up included local breast exam only. I asked loads of times how that examination would show whether my cancer had progressed, but never really got an answer!

I'm on a few fora like this one now, and a lady on an American-based one I've been chatting to has bone mets, picked up during an appendectomy of all things. The cancer was in her appendix too. Like us, this wouldn't have been picked up without the appendectomy... It does make you wonder doesn't it? However at least we are being treated now I guess...

Stay well xx

Helen_12
Member

Re: Bone mets - please join in

Hi Ladies , sorry to drop in as I’ve not posted for quite some times ! Just wanted to know if any of you have had any problems claiming pip I’ve had my bone secondaries for a few years and had pip at higher level , now it’s due for renewal and my breast care nurse says my oncologist won’t sanction the ds1500 and it’s stopping ! I really rely on the money as I’m not working ! Nurse says I have to reapply but don’t think I will be eligible for anything ! What are your experiences? Sorry to ask but I’m really stressing and I didn’t know who to turn to Helen x

windflower
Member

Re: Bone mets - please join in

Hi DiJoy,

When my secondaries were diagnosed it was because an out-of-hours doctor noticed I was very breathless and sent me to A&E.  (I had been going to my GP with sickness and pains for about two weeks).  I was also found to have "a large saddle pulmonary embolism" as well as the peritoneal mets.  I wonder what would have happened if I hadn't phoned 999 as I felt so unwell.  I had to have injections for about 8 months (during chemotherapy) and then was put on Warfarin "for life" as cancer patients are susceptible to blood clots.  This was changed to another blood thinner at the beginning of lockdown because the anti-coagulant clinics were suspended and these don't need continual checks.  I had just assumed that the breathlessness was because I was unwell.  It does make you wonder how people get diagnosed with mets once they have been discharged from follow-up.  I am just eternally grateful to that GP for being concerned and sending me to A&E.

Best wishes to you and everyone else,

Windflower

paris
Member

Re: Bone mets - please join in

Hi Lesley. I too have bone mets in spine and on palbociclib, denosumab and letrozole. I do get a bit achy now and then but the main thing with me was my neutrophils. They kept going too low so I'm now on 75mg and have a 10 day break between treatments. Its a bit trial and error to start, as everyone tolerates the meds differently. I've been on the treatment for 15 months now and all is stable so far. Long may that continue! Good luck with your treatment xx

 

DiJoy
Member

Re: Bone mets - please join in

Hi Lesley,

I was similarly diagnosed with mets. to spine in February last year. I'm on Letrozole, Palbociclib (oral chemo)., and Denosumab, which I'm tolerating fairly well, with minimal side effects at the minute. If yu are on the same oral chemo, they can reduce the dose if you find the side effects difficult, or if your white blood cell count drops too much. I think the worst of these is Letrozole, which is notorious for causing joint stiffness/pain, so I walk several miles a day with my dog, which really helps to combat this. I wish you all the best xx

DiJoy
Member

Re: Bone mets - please join in

Same here Jools, hoping for many years of 'stability' and 'toleration' xx

DiJoy
Member

Re: Bone mets - please join in

Same here... Hoping for many hyears of stabiility for us!! xx

DiJoy
Member

Re: Bone mets - please join in

Thanks Windflower,

Mine was picked up during a scan for shortness of breath for which I was hospitalised last February. I had multiple PEs on my lungs, which frankly I think I was lucky to survive. I was told that these "were likely caused by the cancer in my spine" - Talk about shock! Like you, I had almost forgotten I'd had it in 1995.

However, I've read up since, and it turns out that ER PR+ cancers have a nasty habit of recurring many years post-original diagnosis.

At the minute, I'm stable too, although have just had scans, so now follows an anxious wait. I do get some pain in my back, but this is being managed fairlhy well so far.

Hoping for many more years of 'stability' and I truly wish you the same xx

Jools-50
Member

Re: Bone mets - please join in

Hi Lesley123 not sure if you are on the same regime as myself I'm on palbociclib , letrozole and denosumab and am tolerating the meds well. My first CT scan last week showed spine and hip cancer stable. Hope this helps

Jools xx

Lesley123
Member

Re: Bone mets - please join in

Hi I was diagnosed with bone mets in my spine in Dec 2020, thought I had arthritis and it turned out to be Cancer absolutely devastating. My treatment starts this week, Oral Chemo, Densonub and some other drugs, can anyone tell if they have been put on Oral chemo and did they have many side effects. Thanks

Secondarysister2
Member

Re: Bone mets - please join in

Thank you for replying Windflower and do keep us updated with how you are getting on! 😊 

That is bad that the doctors told you it was immaterial as it is stage 4. If anything, I would think it is more important to know as you have to live with the disease. They should equip you with all the knowledge they have!! I took some hope in that my mums is lobular as it is slower growing (grade2) than other types. Maybe I’m giving myself false hope or false sense of security there, but anything ‘positive’ then I will cling on to it with everything I have!

Take care Windflower! Wishing you all the very best Xxx

windflower
Member

Re: Bone mets - please join in

Hi Secondarysister2,

I know it might sound dumb, but no-one has ever told me what kind of breast cancer I have.  Originally I was just told it was 2cm and it must have been oestrogen positive because I had Tamoxifen for five years.  I had a lumpectomy (this was to establish whether or not it was cancer).  It was supposed to be "early breast cancer".  I didn't have any CT scans.  I don't know whether they existed then.  I didn't have any further surgery, but had radiotherapy and what they called "mild" chemotherapy, which was F5, E-something and Methotrexate in tablet form.  After the radiotherapy I had Tamoxifen.  I had a bone scan at the time which was fine.  I didn't have any lymph-nodes removed, but those in my neck, under my arm and the scar site were treated with the radiotherapy.  When the cancer "came back" nobody told me what kind it was, just that it was Stage 4.  From what I have gleaned since, I assume it must have been lobular, as it seems to be extremely rare to get mets in the peritoneum.  When I queried the type, I was just told it was immaterial, as it is now Stage 4.  I have Anastrozole so am obviously oestrogen positive.  I also have been on Denosumab for over five years.  I actually was given FEC chemotherapy after my secondary diagnosis although from what I have read, it isn't usual to be given stronger treatments.  I'm very glad I was given it, rather than just hormonals from the outset.

I'm sorry I can't give you any more information.  It's a bit of a puzzle to me too!

You are a wonderful daughter, doing so much research for your mum and supporting her so much.  Hopefully she will continue to do well.

Best wishes

 

Secondarysister2
Member

Re: Bone mets - please join in

Hi Windflower,

What type of breast cancer up is yours? I couldn’t help notice you said it was in your peritoneum which I know is a common place for lobular which my mum has.

You offer so much help and inspiration in sharing your story. So thank you!! My mum has her first scans since bone mets diagnosis on Monday and I am extremely anxious. The only thing which calms my spirits is reading other people’s experiences. How resilient you are, how you’ve overcome so much and continue to do so. I honestly think I would have lost my sanity without this thread!! 

Xxx

windflower
Member

Re: Bone mets - please join in

Hi DiJoy,

I too was originally diagnosed with BC in 1995.  I was discharged after five years and had almost forgotten I ever had it!  But in 2015 I was very poorly and it turned out that I had a blocked bowel caused by secondary breast cancer in my peritoneum.  Shortly afterwards I was diagnosed with multiple bony metastasis in ribs, spine, pelvis, etc, etc.  These must have been there for some time and I hadn't had pain from them.  Anyway, the cancer in my peritoneum seems to have faded into the background and my bone mets have been stable for almost six years now.  I am actually due to have a reversal of the ileostomy I had to have because of the blockage, but this was put on hold for the first lockdown and now I don't suppose I'll get it for some time although I was supposed to have it "in the New Year".  It seems to me from reading the posts in this forum that lots of people are diagnosed with secondaries many, many years after their primaries, so it seems that it can lurk unknown for a long, long time.  I take hope from the fact that as it lay hidden for so long, it may continue to grow very slowly, although that is just an observation I have made as time has gone on.  Survival rates seem to have improved so much since we were first diagnosed with more knowledge and many new treatments.  I wish you all the best and hope that you remain stable.

Windflower

Timmycat
Member

Re: Bone mets - please join in

Hi Dijoy,

So you were dx in 1995, assuming that was for bc, then 25 years later, it spread to your spine, again such awful news for you, and the scan was for something different, my goodness, indeed the shock. Thank you for your kind words, and support I really do appreciate yours and everyone's advice and help.

Extremely good to hear that you're stable at the moment, excellent 😀

Timmycat
Member

Re: Bone mets - please join in

Hi Stoney, many thanks for your reply, and so sorry to hear about all you've gone through, can't imagine how terrible it must have been.  It's so weird you had no symptoms, the main symptom I had was excruciating pains in my hips, ribs and upper back, and still the breast cancer was missed on my mammogram. 

So you've had primary bc since 2003, then bone last year, and gone though hell and back, indeed, can't imagine the shock., so sorry that you're still in pain.

I'm on Kisqali (ribociclib) a newish trial drug, Letrozole and zometa for bone weakness, pain control is 25mg continuous morphine twice a day coupled with paracetamol 4 times a day (supposed to work well with the morphine.  This has worked quite well for me, I'm able to be active again.

Wishing you very good luck with your ct scan, and incredibly pleased to hear you're stable at the moment. I had a scan last Saturday,  so like you am awaiting results. Crossing everything for both of us 💕 x

 

DiJoy
Member

Re: Bone mets - please join in

Hi Timmycat,

I too have bone mets, to spine only. I'm taking Palbo, lezostrole and Denosumab for bone strengthening. My first dx. was in 1995, and this was picked up in February last year, when I had a scan for something entirely different, so I can fully appreciate your shock! Thus far everything is 'stable.'

Stoney
Member

Re: Bone mets - please join in

Hi timmycat, welcome...sorry to see you here...2003primary bc, 2019 found out I had stage 4in bones , had a hip replacement, and a plate put in my leg, I'm still in some pain from my leg. I had no symptoms at all, so it was a great shock to get this news.. I'm on palicibo (sp) xgeva bone strengthener and faslodex... everything seems to be stable at the moment, had ct scan this morning, hopefully I'll get results within next 2weeks..  

Timmycat
Member

Re: Bone mets - please join in

Hi finty, I'm new to this forum so have only just seen your post. I was dx with bone mets last January,  so a year in now. I haven't asked for a prognosis as I'm too scared. I'd like to chat to others about this and gain knowledge and find out which meds they're on etc., and how they cope. I realise yours is an old post, I'm still trying work out how all this works and also how to communicate with other people. I'll be very grateful if you can help me. Many thanks. 

BobbieLew
Member

Re: Bone mets - please join in

Yes I also feel like such a pain, my onc secretary knows it’s me on the phone before I even say my name, but I figured if we don’t nag them no-one else is going to do it for us unfortunately! 
Seeing someone new may be a good thing, give a different perspective on things from what you’ve had previously 🤞🏻 
I totally get what you mean regarding things changing, although fortunately I’d had a baby 4 months before diagnosis (although at the time I felt far from fortunate, just guilty that I’d leave him without a mum) but plans for anymore won’t be possible. Personally I’m in a much better place the last few months and I do think the books helped me to be a bit more in control of things and do my own research like you, rather than just waiting on being told what do to next by the onc. However I often yearn for the days when I could eat & drink what I want without guilt! xx

Jo7
Member

Re: Bone mets - please join in

Hi @BobbieLew 

Thank you for your post. Yes it was such a shock to the system straight off- like a double whammy.  I’m still struggling with it to be honest- feel like that’s never going to go away and I'm not sure how to really deal with it. It has changed my life completely in regards to fertility, my career, my friends and covid is the rotten cherry on top! And also putting my family through this after other things we’ve recently had to deal with! It’s all very overwhelming! Thank you- I’d heard of one of those books but not the other. Yes I think I will order them thank you as I try to read as much as I can. I changed my diet last year so again another change. I get most of my answers to things by researching and reading for myself as professionals have told me very little. I’ve been thrown leaflets to read on everything. I do try to be positive but find it hard sometimes but reading positive stories on here does really help a great deal! Feels like I can breathe again for a bit when I read a positive post! Thank you for your good wishes. I received a call today and my oncologist is off for a few weeks so I’ll be seeing someone different. I always come with a notebook full of questions.. I think they hate to see me coming lol!

Thanks again and take care!

Jo xx

BobbieLew
Member

Re: Bone mets - please join in

Hi Jo,

I just saw your last message and just wanted to send good wishes for your appointments this week, I hope they listen to you and you get what you need. 
I am 38 & was also diagnosed straight to secondary in July. Was struggling in the beginning but I have read a couple of books that have really helped me have hope based on other people’s positive progress. You may have read them already or it may not interest you, but if you are interested I would recommend How to Starve Cancer & Radical Remissions. There are various others, but these are the only ones I have got to so far!
Good luck for Thursday ☺️ Xx

Jo7
Member

Re: Bone mets - please join in

Hi @Gillyflower ,

Thank you again for your reply- I phoned again today but they want me to up pain relief so I’ve done that. I’ve bloods tomorrow/today (tues) and see oncologist Thursday so will see how I fair tomorrow. But I will keep pushing to be checked- I find it unfair that I didn’t get my bone injection and Palbo because of Christmas and I’ve had to wait an extra week for them for no health reason- it just makes me more anxious. I could cope with the pain a lot better if it was bone healing! That would be nice but unfortunately my brain always goes to worst case scenarios and then the only way is up from there. I’m 38 and was very active before this and I’ve never had any problem with my bones- first time diagnosis straight to secondaries. I’m over a year on treatment and still have really bad days emotion wise- think I’m struggling to accept the diagnosis when my family have been through so much recently- I hate putting them through more! I get waves of absolute panic and despair and then other days I’m ‘fine’. Just seems to be one thing after another and grieving for so many things all at once is very hard! I don’t understand why we still have to fight to be listened to when we are going through so much already- they don’t make it easy for us!

Fingers crossed for some good news and for a more compassionate oncologist who doesn’t make you feel like you don’t matter because you’ve got secondaries!🙄

Thanks again

Jo xx

Gillyflower
Community Champion

Re: Bone mets - please join in

Hi Jo,

Just saw your post on this thread.  Definitely don't wait for the scans as it sounds like the pain has reached unacceptable levels and needs checking out asap.  At the very least, the x-ray is quick, you can have that done at a local health hub rather than a hospital.  You don't want to end up waiting until you're in a situation where if it is mets, they have damaged bone to the point of it fracturing or breaking.  That would mean surgery and having to stop your meds until you've recovered enough.  Please do ring them tomorrow and tell them you're worried and see if they can get you in somewhere that isn't an A&E.

On the flip side of this coin, sometimes pain can also indicate the bones are healing, or it could be general ageing, or side effects from meds causing aggravation somewhere.  I had a swollen, painful knee for no reason back in May, I could hardly walk on it.  I went for an x-ray straight away, expecting to be told the mets had spread and my leg was probably going to get chopped off (I always make things more melodramatic than they need to be in moments of panic), and it came back totally clear so GP said it was probably just the muscle/cartilage being inflamed.

However, you are spot on about one thing - absolutely trust your body, listen to it and don't let any medical person fob you off until you get the help / treatment you need.  You know your body best and if something doesn't feel right, push every button you have to so that it gets sorted.  My breast care nurse and consultant always tell me "Don't wait for us or rely on the hospital...if you feel something is wrong, you need to be pressing all the emergency buttons and make us listen to you."  

Hope you manage to get something sorted! xx