Hi
I am 46 and have have just been diagnosed with bone mets in my ribs and hip. I am trying to comprehend and accept this at the moment so could do with some help from someone who is further down the line. I am trying to convince myself I can still live a number of years.
I had BC 12 years ago and had a lumpectomy, radio, chemo and tamoxifen. I then had a mastactomy 8 years later for recurrent DCIS.I felt a couple of raised glands in my neck in Dec and stupidly (secretly hoping!!) that these were a result of a really bad cold I had at the time. Any way, turns out it wasn’t and I have recently had a number of tests resulting in the outcome above. I am now booked in for a minor op to move one of the lumps in my neck so it can properly be biopsied. My consultant is 90% sure it wil prove to relate to my original BC…then he will decide on the treatment.
I know this is early in the cancer journey again for me so I am going through the why me angry stage where i cant be bothered with everyone. I have a fab family, partner and friends who I know are totally there for me but feel guilty that I am putting them through this sh** again when all I want to do is get on and enjoy my life.
Sorry for all the self pity.
Kaz
I’m sorry to read your news Kaz and please don’t feel sorry for any ‘self pity’ ! Any anger and sorrow is a perfectly normal reaction, please don’t feel guilty. A secondary diagnosis knocks the wind out of your sails and it takes time, a long while sometimes, to get your head around the new situation. But we all do, in our own way. There’s a lot of support for you here from others who are living, with the emphasis on Living with secondary cancer. I was diagnosed with bone mets from the very beginning in 2003. I was in my early 40’s and at that time I didn’t think I would reach 2005. I’ve been on succesful treatments since then and life goes on. It really does! Breast cancer isn’t the first thought I have on waking, it used to be. I don’t post here very often nowadays, in many ways because breast cancer doesn’t have such a big part in my everyday life but I just wanted to say Hi and Good Luck with your treatments, I hope they work well. I will bump up the bone mets thread started a long while ago now by finty. I think it will be a comfort to read, lots of ladies are there who are very knowledgeable about the various treatments and they will offer both friendship and support.
Take Care Kaz, Belinda…x
Hi Kaz
I am sorry to read your post, you are very welcome here and I am sure that you will continue to receive lots of support and shared experiences from your fellow users
Our helpliners are on hand with further support, information and a listening ear on 0808 800 6000 weekdays 9-5 and Saturdays 10-2 so please feel free to call
The following link will take you to more support ideas and information from BCC which I hope you will find helpful:
Take care
Lucy
As Belinda says, the bone mets thread is great and you will get a lot of support from lovely people on there.
Take care and good luck, Liz
Hi belinda, thanks for your post…thats exactly what I need to hear. I am just annoyed that, just when i am coasting along in life (BC being always there in the back ground but not a major concern) it decides to come back and punch me in the face!!! I am a bit me me me at the mo but I know will pass and I will deal with whatever comes.
Thanks so much for replying so quickly it has given me a pick me up…I will do as you say and look at the mets thread.
I hope things are going well for you.
kaz
x
Thanks Liz, I will do that. It helps knowing people are out there facing the same thing (unfortunately).x
Hi belinda, I did reply to your post but it hasn’t yet appeared. I may be repeating myself now if it does!! Thanks for your positive message, just what I need to hear. Hope things are going well for you. I will look at the threads you suggestedx
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
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
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
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 couldnt 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 Feb12 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 dont 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
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
Oh no!!! x
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
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
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
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.
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
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
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