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Just been diagnosed with bone mets.........I am scared and angry

56 REPLIES 56
Tylerrose
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

HiHIV luv I've must also been diagnosed with breast cancer which has spread to the bone also her2 positive, I've had all the test and scans plus MRI scan on Monday going to see the oncologist for the first time on Tuesday, I've been really worried but reading all the comments on here it's given me some home , as everyone seems so positive.
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Re: Just been diagnosed with bone mets.........I am scared and angry

Travel insurance - try Eurotunnel - no medical questionaire - all thats required is a note in your hospital notes to say fit to travel a week before you do - I was quoted 12K for 2 weeks in mexico at Xmas then founds IO could get an annual worldwide inc US policy for 2 for £112!
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Re: Just been diagnosed with bone mets.........I am scared and angry

Hi all
I was diagnosed with bone mets in May 2012. What a shock to be told you have secondary cancer and they didn't know where the primary was. Thought I needed a new hip as the pain was there. However 12 months down the line, I had radiotherapy last June followed by chemo, followed by more radiotherapy in February on my spine. I have been stable since beginning of September and have now started to lead a "normal" life. Go for my next scan at beginning of June with results at the end of June. Has anyone had problems getting travel insurance to Europe, cheapest I can get at the moment is £1717!!!!!!!!
beanbob
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Baggie dog and other ladies. yes, I also went through grief and sadness and now have days of real happiness. I appreciate good moments with OH and with friends and in my garden, And they feel more intense and more appreciated than before. We didn't allow the dx to stop the plan of getting a puppy and a kitten and they make me smile every day. I now write a quick note in an online diary every day just capturing what made me happy or a poem or a saying that made me think and also with a photo, whether it's blossom or kids or a cake. have a lovely weekend - I am off on a day's photography course at a wildlife centre. Should be fun! Bean bob Xx
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Re: Just been diagnosed with bone mets.........I am scared and angry

Thanks Nicky for your kind words and words of hope. For me the children are the one thing that are getting me up and going each day , but on the other hand it's them that make me feel so desperately sad having the bc. I cannot imagine not seeing them grow up and yet I think about it constantly at the moment.
I keep looking at statistics and prognosis for secondaries which sometimes give me hope and other times make everything even worse. I am having good days though and am now allowed to drive which is better as this gives me back some sense of normality. Ponsmuir I'm with you as well about night time. Time to think and feel so overwhelmed.
its the weekend now and I am determined to enjoy it. I wish you all a great one too whatever you are up to and good luck with results next week. Lots of love to all
clare x
nicky08
Community Champion

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi
at both of my secondary diagnoses, the first one 5 years ago and the second one 2 months ago I have felt an overwhelming sadness about my situation, my family, what I'll miss etc. However once I saw that my treatment was working and therefore I was actually beating the BC and turning the clock back on the condition of my mets (if this makes sense!) I did feel stronger. I am currently still in this sad phase with my current dx of spread to my liver but hope that my scans due next week will show improvement. I think that will give me confidence and start 'living' more again, at the moment I'm in a state of limbo not knowing if I have to change treatment etc. I agree bedtime is the time for worrying 😞 I would like to add though that I did feel so much better 5 years ago once I could see the results of scans etc and really did get back to 'normal' with added appreciation of how precious life is so I got on and enjoyed it to the full 🙂
Nicky x
ps, just edited this to say my youngest daughter was starting A levels 5 years ago and has now gone on to complete her degree. We went to her graduation earlier this year, something I didn't think I'd ever see all those years ago!

vercors
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

I agree with ponsmuir, the kids are certainly helping. Good days and bad days. Sometimes I forget others I can't.
I have to admit that my darkest thoughts are when I am in bed, before getting to sleep.
At the moment I worry that my health could detoriate during the next two months And it would affect the future of my kids. The oldest one is finishing uni and is well on her way to get a first. I don't want to ruin that. The second is finishing school and wants to go to a top uni, so I don't want to ruin this either. She told me that if she is going to get £50000 in debt from uni, she wants it to be from a very good uni. I get her point, but gosh, she is putting pressure on herself.
So I am glad I don't have any scans planned.
Seizing the moment, enjoying every laugh with them, planning to go to the BBC proms. Carpe Diem my friends.

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Re: Just been diagnosed with bone mets.........I am scared and angry

Great words Susan ! Yes our children are our hope ! It's just all the uncertainty as well. You saying its like a bereavement is so right. I hadn't really thought of it like that but so so true. Off to bed shortly. Been a long day. Sleep well all
ponsmuir
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Evening Clare! I can definitely relate to what you're feeling and saying. For me, there is more of a sense of bereavement than anger: 7 months ago I didn't have a care in the world, felt well, ran our family business, looked after the family, cooked, shopped, went out alone in the car...All that went overnight with the diagnosis 4 months ago. I have to come to terms with it and some days are better than others.
What is so positive is that we're on treatment now, monitored and cared for. Among friends on this forum who understand. Better days will come, of that I am sure. Keep popping those pils and posting on the Forum. And let's learn how to seize the moment, especially with our children.
Susan xxx
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Re: Just been diagnosed with bone mets.........I am scared and angry

Evening ladies. Thought I would come on the sight as feeling a little down tonight and having felt more positive , struggling again. it is so good to hear all your comments and I really appreciate the positivity. Just keep thinking I am dying here !? Anyone else think this on occasions?! I am also experiencing anger and this is so not like me. Kaz. I know you said this and I suppose its to be expected but I feel that I don't want to do anything !
Can anyone else relate to this please ? I am on day 3 of the tablets now so at least my treatment started. Sorry to burden you on here with my 'down' day. I really do try to keep positive But fail ! The children are definately a good distraction which I know is good.
thank you everyone. Clare x
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Re: Just been diagnosed with bone mets.........I am scared and angry

Not sure why the post appeared twice. Sorry
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Re: Just been diagnosed with bone mets.........I am scared and angry

Thank you ladies for yet more encouraging comments. bone scan done so just waiting on results. Should be 10 days. Councelling may be a good way forward. My doctor has suggested it and it means I can vent my fears and anger at others as sometimes feel I can't burden family and friends. They are so supportive but it's hard on them too. My mum has also been diagnosed with breast cancer in the last fortnight ( I know. You really couldn't have any more bad news)!!!! And so trying to be strong for her too .
Missed the live chat last night so will aim for next week. Good luck to everyone this week with whatever you doing
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Re: Just been diagnosed with bone mets.........I am scared and angry

Thank you ladies for yet more encouraging comments. bone scan done so just waiting on results. Should be 10 days. Councelling may be a good way forward. My doctor has suggested it and it means I can vent my fears and anger at others as sometimes feel I can't burden family and friends. They are so supportive but it's hard on them too. My mum has also been diagnosed with breast cancer in the last fortnight ( I know. You really couldn't have any more bad news)!!!! And so trying to be strong for her too .
Missed the live chat last night so will aim for next week. Good luck to everyone this week with whatever you doing
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Re: Just been diagnosed with bone mets.........I am scared and angry

Salsa Babe - you cannot swear on this forum - D I E T indeed!! What's that?!

Just to add my two pennorth - I was dx with bone mets in Aug 11 - my original dx was Mar 09 and there was a concern over my sarcrum area then but it was put down as age related degeneration - given that is the 'bottom' not to put too fine apoin ton it of my string of multiple spine mets I think it was probably there then. Hormones didn't do me - I went thru them quite quickly - and started Cap chemo in Sep 12. Been on it since with no progression.

Yes its scary. After my sec dx I was scared to even think about Xmas 11 - I wouldn't be there. As times progressed I can think and do plan ahead. Have holiday booked for Xmas 13 already, and look forward to OH 60th in 2 years time - I'm going to be here!
Live each day as it comes, enjoy the little things and ignore the negatives - like Nicky I've found out who my real friends are!!

Nina
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Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Ladies

I would like to say I agree in that it takes a while to get use to, I am one year on and still getting use to it, maybe as the pain in my leg back in 2011 whch I and GP thought was a trapped nerve has almost gone. WoW that was a shock, funny I don't know why I didn't realise until this website that you can get SECONDARIES anywhere in the body.
So yes, a shock that it was BC. Dx Jan 2012 and put on Letrozole and then six months of Zometa. All was fine pain gradually going THEN went to Spain to have a rest with my Spanish friends for a month and felt so positive and on returning was planning on going back to work, THEN in Oct 2012 check up showed that a spot on the liver looked like it had increased in size, not 100% sure so best "put you on Paclitaxel chemo". How disappointed was I. That said, it is now April and chemo finished in Feb 2013 and now recently started Arimidex as they said Letrozole did not work for me hence spot size increase so recently started Arimidex and (Zometa in tablet form)= Ibandronic Acid daily. I can't believe how far I have come. I have arthritis which was fab whilst on chemo but now the RA people are sorting me out so hopefully by July when back in Spain I can enjoy that intense heat, though as a WOMAN OF COLOUR, will not be visiting the beach with my friends or we will have to get a BIG UMBRELLA as told to keep out of the sun for a while. I now understand the full meaning of ROLLERCOASTER.... I am so glad that for the 8 years after primary I did not sit at home and moped about.... ladies, I hope you all have plans for summer and get to do the "stuff" you want to do.
Now where is that DIET PLAN?

Lynnq
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

I am pretty positive most of the time. I would say this my biggest problem is sleeping. I was a shift worker (now retired) so sleeping has never been straightforward for me. Had a bilateral Mx last week so am taking tablets to help but have promised myself that I will stop using them when the dressings are removed. I am only having hormones and it did worry me initially, but I am much happier new since my first blood tumour test result was so encouraging.
nicky08
Community Champion

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Clare
i was given the choice between chemo or hormonals, both work in the same way but chemo is more aggressive! I also had a local recurrence and I wanted that to shrink/disappear as soon as possible so I chose the chemo route. Having said that the chemo I was on, FEC, has left me with long term heart problems which I wasn't aware could happen so may have gone the other route given that info. After chemo I was on hormonals, Arimidex, for 4 years and stable for all of those until a CT scan showed progression back in Feb of this year. many ladies are on hormonals right from the start of a secondary dx and they are very effective and, like Mel, I'm sure you will be assessed along the way so treatment may change if its not effective.
Nicky x

Buffy3
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Claire, just to fill you in on my situation. I was dx with bc and sx in bone after an intense pain in my hip. I had radiotherapy for my hip, was put on zoladex and given tamoxifen plus zometa. I was told they prefer to start you on the hormone therapy as it is a less aggressive treatment. After 3 months I was scanned which unfortunately showed further bone mets. I was then given ec chemo which I finished about two months ago which has reduced my lump from 4cmx4cm to 8mm which apparently is a good response. I am due to start letrozole soon and have been told this is an effective treatment.
A friend of mine has only ever had the hormonal treatment ( for 4 years now) and this has kept her stable. My onc has said that the treatment plans are tailored very much to our needs so we will have a slightly different approach from our oncs.
Like you I am a positive happy go lucky person but felt I'd lost control of things. However, my life is slowly returning to normality now...I have been off work since July last year...am a teacher...and am planning my return to work part time initially.
I had counselling to talk things through, its hard to get your head round things. My breast nurse has said to me that this illness is beibg regarded as a chronic illness that can be treated for many many years. Thats what I am holding onto and can cope with thst idea. There are many ladies on here that have been treated for many years.
Like Nicky I also see the joy of the little things in life....I was so excited by the snow last month I had to walk in it. I like the rain, seeing my friends and family and laughing. I have noticed I am much slower but I have got used to the fact this is my new normal.

I still have a ups and downs but feel stronger everyday. I went to a yoga class, run by my hospital last week which was great, I can have 5 more so I shall book in for some more. Be kind to yourself. All the best Mel xxx

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Re: Just been diagnosed with bone mets.........I am scared and angry

Thanks nicky. What a positive reply. Really appreciated. Hope you don't mind me asking but after your secondary diagnosis did you have chemo first. I am only having hormone treatment. No chemo which I find surprising !! Thanks nicky. Lots of love Clare x
nicky08
Community Champion

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Clare
It does take a while to adjust believe me! Once I had my treatment plan in place I felt more able to cope but, as it was IV chemo, I had to get through that first and did feel like a sick person. However once I was on hormone treatment I really did feel great and got on with everything I used to to, albeit with a few more aches from the hormone tablets. Be easy on yourself and look after yourself - you are the most important person right now. I found I couldn't be bothered with petty things any more and often used the 'cancer card' to get me out of events etc that I really didn't want to go to or be involved with - including some from so called friends who hadn't supported me in any way - you soon learn who they are! One good thing though that did come out of my secondary dx was I appreciated all the small things like a sunny day, a pub lunch, a fun day with family, a little treat. You are very early days in this whole process (my dx was 5 years ago) so take each day as it comes and if you find you really are not feeling any brighter maybe you can talk about counselling? I know some ladies on here have had that and it has helped a lot to unburden your thoughts to a professional rather than to family and friends. Also do keep posting on here we do all understand and can help even if in a small way.
Nicky x

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Re: Just been diagnosed with bone mets.........I am scared and angry

Hi. Just reading this post and like you diagnosed at same time with breast and secondary bone mets. with good treatments is it really possible to live a 'normal' life ! You sound such a positive person and your post has given me more hope like many of the people on here. But Since my diagnosis I have gone from being a full time teacher, mother of 3 school age children charging about socialising etc and now feel and am behaving like a 'sick' person. I know it's a psychological thing at the moment but can anyone else relate to this. Sorry to be so down todaY. I have bone scans and cannot still believe the change of circumstances in just 6 weeks. I don't want to be negative. I have always been such a positive happy go lucky person ! Thank you
love and best wishes clare
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Re: Just been diagnosed with bone mets.........I am scared and angry

Thank you ladies for these wonderful comments ! Good luck to you all and speak soon. I love this forum. I am so glad I have found you all.
Tired tonight after an emotional day. Thank you again
ponsmuir
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

What a lovely positive contribution, Lynn! Every bit of encouragement is so welcome. I am on the same medication as you and 3 months in, I'd like to think things are befinning to stabilise. Time will tell but in the meantime this forum is such an inspiring and helpful place.
thank you for your post.
susan x
Lynnq
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

I was diagnosed in Ocrober and after RMx in Nov discovered canc in other breast and mets in scull and upper spine. I was put on LETROZOLE and after 4 months I had a blood test and was told that there had been a HUGE drop in the tumour markers........which is good news. I am also having Zometa infusions and a calcium supplement so it does work. No chemo......maybe sometime down the line if it becomes necessary is what they have said.
side effects are aching joints buy nothing bad enough to make me want to change things......especially as it seems to be working.

like many others, even though I do not post very often I take a lot of comfort from these forums.....
ponsmuir
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Clare,
I'm 4 months on from my secondary diagnosis and still finding it hard to take it all in. Unfortunately my bone mets are now 'very extensive' as they were undiagnosed for the past 12 years. So I brought up my family in blissful ignorance which was possibly a good thing. But now I 'know', I have to seek the best treatment.
I'm not sure which side effects are caused by the Letrozole and which by the Zometa! They overlap if you read the product info in the packet. I feel very stiff in the areas of interest, and my bones are sensitive. I can't say they hurt and I only need a couple of Paracetemols a day. I feel nausea on occasion and my GP has prescribed Domperidome to twhen if needed. I find my appetite has diminished but that small meals help.
Te hardest is the emotional part, living with uncertainty, waiting for scan results and knowing from other postings how unpredictable this disease can be. But you need to be well informed. Last time round, I put total trust in my Onc and believed him when he said my original 5 years treatment was 'belt and braces' and thatnitnwas very unlikely my cancer would reappear in the same place. But then, I have lived symptom free for many years and had all the routine mammograms. So I'm not blaming anyone, not even myself. This time, I want to know about the various treatments and options. And the fact that the receptors can change in time and what to do about that.
You will find a wealth of support and advice here. Keep me posted about how you're getting on.
Susan x
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Re: Just been diagnosed with bone mets.........I am scared and angry

Thanks Susan for your reply. I am still taking all the information in as only diagnosed 5 weeks ago ! im like you. I just want to see the boys grow up. yes it's the injection I'm having for the bones. I just hope and pray that the letrozole start Working. Wherr are you in your treatment. And would you share your experiences about side effects. I have been warned about joint ache but that's it really !
So grateful to have the messages from you lovely people on here. I am finding talking to friends and family so hard. I thought I would try and log on to live chat later.
Lots Of love. Clare x
ponsmuir
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Clare,
Snap! I'm on Letrozole too and like you, can't believe such a tiny pill can do powerful work. I don't like some of the side effects, but hope they will disappear or lessen over time. I think it takes a while for it to work and yes, chemo may well come later. Much later, we all hope For ourselves.
What bone strengthener are you having? If it's Zometa, that is done by a drip and takes about 20 mins. There are others I understand which are given by injection eg Denosumab.
PI was first diagnosed in 1994 when my children were 3 and 6. My fervent wish was to bring them up, which I did. I am now greedy for more time of course, and am glad there is a treatment plan in place and lots of weapons in the arsenal.
Susan x
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Re: Just been diagnosed with bone mets.........I am scared and angry

Hi everyone. Thanks for the messages. Just back from the hospital and been put on letrozole ! And having bone strengthening treatment too. Anyone got any experience of this. Think it's by injection.
I cannot believe that this tiny tablet can possibly do anything. I have high oestrogen receptors so this is why this treatment been suggested. No chem yet. ! Think that for further down the line.
Its such a lot to take in. I look forward to hearing from others sometime. In the meantime. Lots of love and speak soon.
Clare x
nicky08
Community Champion

Re: Just been diagnosed with bone mets.........I am scared and angry

Good luck Claire/Baggie Dog hope all goes well today and you get a treatment plan in place which means you are attacking the *uggers.
Nicky x

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Re: Just been diagnosed with bone mets.........I am scared and angry

Thank you sue. I will do. I have 10 year old twin boys and an 11 year old who will turn 12 soon. I am 49 so 'young' ish lol ! I have to be around for a good few years yet to see these boys through some very important years. This site has given me much more hope as so many of the women have been living with secondaries for years.
Your encouraging message really helped this morning. Will let you know what happens this morning.
Lots of love Clare.
Would be very interested to hear about your journey so far too .
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Re: Just been diagnosed with bone mets.........I am scared and angry

Clare, like you, I have just joined this section of the website. As you have young children, I assume you are also a "younger woman", like me. I had a primary 5 years ago and cannot imagine how you are reeling at the news of secondaries whilst you are still coming to terms with the idea of a primary. However, I must tell you my experience of this website and the wonderful women who use it has been invaluable to me through my primary and I immediately turned to it when I heard I had secondaries. You will get a LOT of help, advice and support from the fantastic women on here - and you can come here to rant and rave when you feel you can't let your family know your true feelings.
Do let us know how you get on later today,
Thinking of you
Sue x
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Re: Just been diagnosed with bone mets.........I am scared and angry

Hi. I have recently been diagnosed to and am feeling the same as you. I am struggling to share my feelings with those closest to me and am so sad when I look at my 3 young children. And yet this forum is so so positive with posts from people living with secondary mets for years.
Its so frightening not knowing the treatment plan. I see the doctor tomorrow so should know more then. Good luck to you
clare x
Jo_BCC
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Baggie dog,

As you can see the ladies here are wonderful at offering support. You might like to take a look at one of BCC's services - Secondary Live Chat - which runs for an hour each Tuesday evening between 8.30pm and 9.30pm. I have put for you below the link for you to have a look at.

http://www.breastcancercare.org.uk/community/chat

Take care,

Jo, Facilitator

nicky08
Community Champion

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Baggie Dog
Sorry you have to join us in the secondaries section - a place where none of us want to be! There are several ladies on here who have been diagnosed with secondary BC at the same time (or close to) their primary diagnosis so one of them may be along to assure you that all is not lost. One lady has been doing very well for 10 years now so I hope that gives you some light at the end of the tunnel. I had nearly 5 years between primary and secondary (bone) dx and responded very well to treatment for the mets until further spread earlier this year. I had been stable for most of the time in between (well, until a CT scan showed the progression) and lived life as 'normal'. I am now on another lot of treatment, oral chemo, and hope that this is working well for me as it has done for so many other ladies. Do check out the Bone Mets thread as vercors has said, it's where most of us boney ladies regularly post and has a lot of information, support and experiences from a whole host of different secondary ladies.
Nicky x

Buffy3
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Baggie Dog...welcome, although its a tough place to be. I was diagnosed with bc n bone mets at same time last July. As Vecors said the bone mets thread is good for support and any questions you may have. Take care of yourself.
Love Mel xxx
vercors
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Baggie dog, sorry about your diagnosis. I remember how scared I was. you came to a good place where you will get a lot of support.
We have a thread called the bonemet thread ( I hope the link will work http://www.breastcancercare.org.uk/comment/2093676#comment-2093676) where a few of us post.
I was diagnosed 16 months ago and was put on letrozole, herceptin, zoladex and ibandronic acid. I have responding well to treatment and have been fortunate to continue to live a normal life. The mets have been contained and had no further spread, even signs of healing.
take care.

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Re: Just been diagnosed with bone mets.........I am scared and angry

First post for me today. Have just been told I have bone mets too. Feel utterly in shock as primary cancer only discovered 2 weeks ago. I am very interested in getting involves in the chats and have felt encouraged by the posts here. How can tidiness the mets thread please
Coolgirl
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi everyone, thanks for all the posts. It is so good to hear all the positive comments and advice , and also just to know that there are others (unfortunately) going through the same thing. I have been at work the last couple of days so my mind ihas been occupied with other stuff and I can push this to the back of it. I am going to the hospital today just for a blood test so I am now going over it all in my head. I am already dreading my next scan even though its not for a couple of months yet... .....Think they will have to sedate this time!!!!!!!!!!I am doing my best to take a day at a time and reign my thoughts in when they go too far ahead.
i am waiting to hear the results of the HER2 test. Will let you know if I am as will have further questions!!!!
i too haven't told all my friends....just my very close ones. I feel like I just want to get on with this in secret. and also because I don't like loads of fuss or seeing people's reactions as it makes it more serious.
Better go now as off to hospital then work.
love to you all. will speak to you again and thanks so much for replying to my post. Xxxx
beanbob
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Kaz, Alize
Another one with the same story. First treated in 2003 ER+ with chemo rads and tamoxifen. 10 years later - at 46 - secondaries diagnosed in May 2013 after an xray recommended by an osteopath showed a collapsed vertebra. I had one blast of rads and I am now on Zometa and Tamoxifen. It came as a huge shock to have it all back after that time. I have settled down but i still flip flop on how to deal with life/work/time. Telling family was tough but i have deliberately not told friends yet because i prefer that than having C define who i am now. I hardly ever post but when i come on here I look in on the bone mets thread. I don't know HER status and that is on my list of Qs for onc at the 1 year scan in May.
Here on this journey with you. x
alize
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Kaz, another one in the same club as you. I first had bc in 2003, lumpectomy, chemo, rads etc. i didnt do tamoxifenfor longer than a year as pr + and limited benefit but loads of hot flushes. My recurrence also came back in a lymph node in the neck Nov 11 and i remeber being stunned that my gp wanted to send me to the breast clinic. I too thought it was an enlarged gland post a cold and remember feeling like the rug had been pulled from under my feet. It had been nearly 10 years!!!!
I had radiotherapy to the area and was started on femara then switched to arimidex. Also this time Her2 testing showed i am her2 positive.
I too felt a difference in the treatment approach and felt that no one seemed that bothered. i have moved towns and wondered if it was a different nhs trust approach....i have since had spread to spine ribs and pelvis with more rads to the spine - just one 'mega' dose andonly now am i starting on more active treatment, although i did start oral bone strengtheners pretty much straight away after the bone scan confirming mets. However i am really lucky (?!) in that as i am her2+ and not had chemo or herceptin previously i am eliginle for the new drug perjeta.
Do you know if you are her2+, they didnt test for this back in our day and also my er/pr status changed.
I try and take comfort from the many women here who have had bone mets for many years without further progression and i am aware of the new drugs available, thank you to all the women who went on trials, and the profession does seem to see this type of spread as akin to a chronic illness. The scariest aspect is wondering if and when further progression may occur. For me its been less than 6 mths since the bonemets occurred and im still adjusting and have times when im not sure how positive i can be. Acceptance aint easy but im getting there and appreciate not feeling ill as such.
All the best kaz
Claire

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Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Kaz,

I am in a similar situation to you. I am 41 had breast cancer a few years ago (2010) and found out today that it is back in my bones (femur). I have been looking on the web, knowing that I am torturing myself and worried about survival rates and my children (they are very young) so it is good to see some brave ladies out there still going strong. It's very scary at the moment and I am waiting to hear what the treatment will be (will find out tomorrow). Wishing you all the best in your treatment and please let us know how you are getting on.
nicky08
Community Champion

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Kaz and Belinda (Hanfamily)
Sorry you've had to join us with a secondary diagnosis but I see you have already had good replies from a couple of ladies living with secondary BC for many years. I was diagnosed with bone mets 5 years ago (nearly to the day) and remember the shock of it and how you feel your world has ended. However I remainded stable with bone mets for neary 5 years but have recently had progression and am dealing with that, like you both are. It is a horrible disease that messes with your head as much as your body but I think once we had all started on a treatment plan it was easier to deal with. The Bone Mets thread is a great, informative thread so do post on there as it's the most likely one to be picked up by any of us 'old hands' to offer advice and support as it is a very active thread.
Good luck with appointments and treatment plans.
Nicky x

belinda
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi again Kaz, Tamoxifen was my first drug and it worked really well for me. I had bone strengtheners too, not sure if it's used so much nowadays but I had Pamidronate infusions and after a few years I was switched to tablets, Bondronat...because my veins were getting troublesome. If you are having a bone strengthening infusion the first infusion can make you feel achy and flu like the next day but for most of us the following infusions are usually trouble free. Tamoxifen worked for around 18-19 months before I was switched to Arimidex which worked for somewhere between 3-3 and a half years. The tablets are tiny but they can be really effective! Good Luck. 🙂 x
Coolgirl
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi, got the results of my biopsy last week. The cancer was strongly er positive so I was put straight on tamoxifen. I am also going to be given a bone strengthening Drug. My reaction was this doesn't seem much compared to the treatment I had when I was originally diagnosed 12 years ago. My breast care nurse has assured me that tamoxifen is an effect effective drug but I am not convinced that such a little table can work wonders.......time will tell I suppose.
I woould love to hear from anyone who has had tamoxifen and it has worked for them and also any side effects they had. I was given tamoxifen at my original diagnosis but the cancer was not as srongley er positive as it is this time

kaz x
Coolgirl
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Oh no!!! x
Coolgirl
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Belinda, sorry I haven't replied yet. My head is in a bit of a whirl like yours I am sure. One minute I want to talk and about it the next I am in denial. My only thing now is I had no pain before i was diagnosed (other than a little niggle in my hip) and now my back keeps aching!! One minute I am strong and just want to face this head on and the next I just want to completely ignore it and carry on as normal. I haven't posted since the other day as I have been feeling in the latter mood. I keep trying not to think about it too much as its gets too scary. I am sure these feelings will get better over time.
I am due to see my oncologist later in the week once the results of my biopsy are available and then he will tell my what treatment I am to have and then reality will definitely kick in!!!
i think the key is, as everyone says, not to think too far ahead or read to much on the internet! Thats the advice I would give to someone but dont tend to listen to it myself
I hope you are having an ok day and will catch up again with you soon .x
24838
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Kaz and Belinda (Hanfamily),
Sorry you find yourselves here but please go to the bone mets thread which Lizcat and Belinda (1!) have already encouraged you to do. I was diagnosed age 42 with primary and 3 months later (age 43!) with widespread bone mets. It was a horrible time and I really thought I would never feel `normal ` again. That was Sep `11 and I couldn`t look at my 2 lovely boys without having a meltdown! A fellow patient told me about these forums and I started reading the bone mets thread from time to time. Thanks to some very positive stories from the wonderful ladies on there I realised that there IS a life to be lived and plenty of hope and effective treatments. I returned to work part-time in Feb`12 and am very lucky to be relatively free from pain for the moment - although do have `niggles` but all in all I am determined to enjoy life and just keep reminding myself that other ladies have lived with this for many years. I don`t know what I would have done without this forum and plan to post as often as I read in the future !!
Take care and good luck with your future treatment
Janice x

belinda
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi again Kaz and Hi another Belinda. And Hi Liz! Glad to be of any help at such a horrible time for you both. My own diagnosis was a little bit crazy as my hip spontaneously fractured while I was out shopping so it was a strange way of finding out I had breast cancer and bone mets. I had a fantastic, pain free hip replacement which, for years now, has felt no different to my other hip. And since 2003 I've had many years of just pootling along well with very long spells, often many months, years at a time, with some especially effective treatments. These are just well known treatments which many here have had success with. I try and eat well but will treat myself too! I had another little blip last December but have changed treatment again and at the moment all is going really well again. 🙂 Good Luck to you both..xx
lizcat
Member

Re: Just been diagnosed with bone mets.........I am scared and angry

Hanfamily/ Belinda2 - I would say the same. Come and join us on the bone mets thread. I'll bump it up again.

I'm 48 now and have had bone mets since primary diagnosis at same time in July 2007 so have been around quite a long time too!

Liz

Guest user
Not applicable

Re: Just been diagnosed with bone mets.........I am scared and angry

Hi Kazza and Belinda
Im another Belinda who has just been diagnosed with bone mets this week after original diagnosis Sept 2011, and I feel just the same, cant believe I have to put everyone through this again, and very upset and worried whether I will see my kids through their GCSEs and A levels next summer!!! Having further ct scan on Monday to determine exactly where mets are in spine, but back and neck very sore so not expecting great news. Would love to hear from you as seems like going through same thing as me, Im 47 and still seem to young and still want a lot out of life and feeling very frustrated. I have never posted before but thought your posting related exactly to how im feeling.
xx