Hi everyone I have not been on here in some time. I was diagnoised when I was 24 in September 2005 I had a mastectomy and reconstruction 4 lymph nodes were affected, I had chemo, Radio Herceptin and am still on Tamoxifen. I have been having pain in the right side of my neck for nearly 12 months now my breast care nurse finally did a xray that showed up there was thining in the bone but she said this was very common and not to worry. I then asked my bc nurse to let me have a biopsy of the lump she did not want to do it and said it is just a inflamed lymph node and and she said she has teh same and i should just live with it.
To cut this long story short I decided to have a MRI scan done and saw a surgeon privatly I had this done just befor xmas.
I was otld by him today that I had cancer in the spine at C4 and taht I would need treatment and then surgery that is all he said. He said he would speak to my old oncolagist and see what to do next.
A few questions does anyone else have it in the spine and it is contained? if so what surgery do they do and what treatment will I have???
ALso is normal to always be in so much pain I can never sleep and once my head touches the pillow I cant move it. I have started losing weight aswell and also getting pains in my head does anyone else have this?
also What do I have is it secondary breast cancer or a local reacurrence, and aloso I am guessing they can never cure it even if they operated is this true???
I am so sorry for going on and on but I am now so worried teh first time round I was so possitive but I done think I can go through it all again.
Love Clairemm x x
Hello Claire, Im so sorry to hear your news. To have a bc diagnosis at 24 is just so unfair. I’m only a patient but I think you may have bone secondaries rather than a local reacurrence…but do ask your onc to clarify this for you, this is only my opinion and I would love to be proved wrong. Yes secondaries aren’t curable BUT they are very treatable…and sometimes for many years. I know this will be of not much comfort now but it’s something I was first told at diagnosis by my onc and I have hung onto this during the years. I have bone secondaries and have been living well with them since 2003. For over 2 and a half of those years I was in remission (thanks to Arimidex) and today I have no bone pain (I did have at first and was diagnosed with both breast cancer and secondary bone mets when my hip fractured) and I have full mobility. If you are confirmed as having bone mets you will probably be given one of the bisphosphonate treatments to strengthen your bones…after a while you should find a real difference, less pain. You will find SO much support here. My head was in a whirl for months after my diagnosis, take care of yourself. Somehow we all go forward, find our own way of living with secondaries. Love Belinda…x
Hi Claire, I remember you from a while back. I am so sorry that your cancer has come back and you now have bone involvement.
Belinda is right, many people with bone involvement do very well once the right treatment is started. I have found that bisphosphonates (I take Zometa) have kept my bones pretty much stable for about eighteen months so far (although the cancer has spread to other places) and has helped me to keep on top of the bone pain.
YOu may need, however, to look at the rest of your treatment too. If you have developed secondary spread while on tamoxifen, you may need to change your hormonal drug, perhaps to Arimidex or Femara (which are part of a family of drugs called Aromatase inhibitors) plus zoladex to make you post menopausal (the aromatase inhibitors only work when oestrogen production in the ovaries is stopped).
I am wondering whether the MRI looked at just bones, or whether you might need to have more tests to be absolutely certain there is no other involvement. A CT scan would give you a good picture of what is going on.
I am not sure why your private surgeon has recommended surgery - it is very unusual to operate on bones. I am also not sure about the lymph node. Have you had a recent biopsy on an enlarged node? You have a right to this information and it is wrong for a bc nurse to refuse you this. Perhaps she thinks it is something that you might best discuss with a doctor.
What is your plan from here on in? Are you planning to continue with the private treatment? It sounds like you need to be under the care of a medical team and if you feel that your current medical team has let you down you have the right to ask to be referred to anywhere else of your choosing. Would a discussion with your GP to look at the options be useful, do you think?
Deirdre
Hi Claire,
I have it in my spine hip knees and ribs, I have had radio therapy to these areas and pamidronate since May. Last Dec I could not sit in a bath but I now can, boy, did I miss my long soaks. It has not taken long to feel a massive improvement so hope they can sort you out.
Love Debsxxx
sorry to hear of your recent diognosis ,never easy to hear is it ,myself im having results of bone scan tomorrow i have liver secs and had breast cancer in 2006, ive had pain in ribs for about 6 mnths now ,this was thought to be from arimadex ,but as the pain is localised, the surgeon recommended bone scan imedialtly ,this was so quickly arranged im really scared ,but hoping it was just there was a cancellation and i got in then ! i hope you get on ok with your results etc ,we are a strong bunch on here arnt we, whatever gets thrown at us we seem to get the strength from somewhere to fight all the best .lynn x.
Hi everyone,
thank you for your messages, I am meeting the my old oncol on Wednesday and she is sending me for a bone scan and a CT scan, to check if it has spread anywhere else.
I have also asked to change hospitals as now the marsden is only 5 mins from where I live. My oncol said if the cancer is only in one part of the spine they would give me radio and some bone treatment but if it has spread then again I would need more chemo. As for surgery they do not think they will operate yet which I am pleased about.
At the moment it is all still too much of a shock to take in I dont really know how I feel apart from scared and worried.
Once again thank you for your messages
Love Clairemmx x
Hi Claire
Just wanted to say I’m so sorry to hear your news and I kinda know how you feel as I’m around the same age as you, just turned 29 before Christmas.
I have bone mets and have done from the beginning (Oct 07), I still had chemo, mastectomy and radio though as my Onc believes it’s important to take control of the cancer which seems to have worked so far. I’m currently on Tamoxifen and have had 3 clear PET scans since June 2008 and all my blood tests have been normal (last one was 11 December 08)…touch wood 
Anyway, any time you want to chat, feel free to PM me if you want to, would be good to chat!
Take care and try and be positive no matter how hard it is hun.
Lots of love
Tish
xx
Hi Claire
I have just read thro this thread. I am 37 (so a bit older than you) but I too was devastated to find i have bone mets in my spine and pelvis - which was confirmed the week before xmas
I am currently having Rads for primary (was dx may 08 - had chemo then surg in oct). I didn’t actually have any pain but asked for CT Scan after operation as the histology results showed that i had 18/18 LN +ve. My scans pre chemo were negative so we were all expecting this scan to be negative so it was like being hit by a sledgehammer when the MRI showed mets in spine and pelvis. I have been put on zometa infusions every 4wks (due my 2nd this wk) and am on both tamoxifen and zoladex. I have started to get my head around it a little bit but i spent the 1st 2 wks crying!! Its all very scary. I am currently reading one of Lance Armstrongs books (the cyclist who won the Tour de France 7 times after tx for advanced testicular cancer) - I find it some comfort knowing that there are people who had dreadful diagnosis and are still alive and in remission several years later with no further secondries. So here is hoping that we are all set to follow in his foot steps
Hope you are Ok
Maria
Hi Clairemm
Sounds as if you have a good plan going! Good luck with your appt on Wednesday and it sounds like you are in exactly the right place to get a referral to the Marsden if you’re not happy at all with any aspect of your care. Hope all the scans go OK and you don’t have to confront any further chemo. Try to get as much info as possible before you have your appt and write any questions down that you need answers to. I found out so much from this forum so was able to ask much more than I would have done otherwise. Ask us boney mets girls if you need to or just read up on past postings. Fingers crossed that things go well.
Nicky x
ps - Maria - I know the sledgehammer feeling, it’s exactly as I felt in May 08 when secondaries were dx. Hope you are doing well getting over the awful shock and that your treatment works well. I also have mets in spine and pelvis and am on hormone tablets (Arimidex) and bone strengtheners.
Hi everyone an update on me I had a MRI scan on the whole spine today and it is only in the area C3 they feel it is best to operate before treatment so the end of next week I will have that part of my spine pinned as they are worried that with the radiotherapy it can sometimes move things around in the area being treated. I Am going back to the hospital tomorrow for a bone scan and then a CT scan on Friday to check to see if the cancer has spread to any other parts of the body.
Has anyone else had their spine pinned and can tell me what to expect.
Love Clairemmx x
Hi again
Claire I met a girl who had X 2 vertebrae involved - she had got to a lot later a stage than you when she had surgery - but is absolutely remarkable now - she has a toddler so has no choice but get around.
As with any surgery you are bound to be aprehensive - i know i was with just having the mastectomy and DIEP flap - i found it hard to hand my body over to the surgeons and anaesthetist while i would be asleep!! what an idiot i was - i woke up 8hrs later with my anaesthetist by my side insuring i got enough pain killer on board before he left me in the very capable hands of the recovery/HDU staff.
They will explain everything to you but i would imagine you will wake up with a hard collar on (neck brace thingy) but maybe not? but as its your neck i would imagine they will stabilise it - but once you know these things beforehand you can be rational about their existence when you come to. I asked about surgical option for my spinal mets but was told that they would not consider it at this stage - i would like to get rid of diseased area from a psychological point of view - just so i could feel “cancer free” -
Has anyone asked about having Avastin for secondaries? - is anyone on it? Have read some very promising stuff regarding Avastin for tx of secondary breast cancer - all comments appreciated.
Claire good luck with your scans and my fingers are crossed for you that C3 is as far as it has spread
Maria xx
Hi Claire,
I’m a reluctant newbie, live in NZ and turned 40 last year. I was dx 22/12/08 from a core biopsy and have surgery scheduled in a week on the 15th then it’s the inevitable wait for chemo and radio. Whilst I am not familiar with the road I am about to travel-I am a Registered Nurse and lifted a patient (funnily enough a tiny sparrow of a woman) in 1989…four years later after x3 ops on the back I had a spinal fusion with x2 8" screws L5/S1. I was worried a few months later when on honeymoon in Thailand. I made the bleepers go off at Bangkok airport and these wee men with very big guns started running towards me…thankfully it was the man behind me that they were after. I just about kacked myself cos I had just watched that movie Bangkok Hotel and didn’t fancy dropping my pants and showing my scars!
Anyway I digress…gone are the days where you are flat on your back for weeks, as you probably know they will get you up ‘ambulating’ in a very short time. You will have a brace which will be a pain in the proverbial but also your support. (excuse the pun) Remember to take the pain meds reg (not that you will feel they are entirely nec but all it takes is a slight difference in activity ie peeling spuds compared with sitting reading!), do your exercises and you’ll be sorted.
Just wondering…is it normal to have alcoholic tendencies whilst waiting for surgery?? I was dx’d the day I went on Xmas leave so not enough time to get in before the theatres closed and my surgeon went on holiday hence the delay of 3 weeks. I filled out the anaethetists questionaire honestly…'do you drink alcohol?" It is Christmas after all!
Good luck-will be thinking of you as I also do the deed next week
Sarah x
On the Odyssey course I met a woman who had had her spine pinned because her verterbrae had simply collapsed like a deck of cards. She was a few inches shorter than she had been before her breast cancer diagnosis. But wow, was she fit. She put me to shame with her energy and strength.
Deirdre
PS Re Avastin. If you go to the targetted therapies thread there are quite a few posts about Avastin. I was on it from Feb 08 to October 08 when my tumour markers started to rise. I had it alongside Taxotere at first, until June 08, then on its own. It didn’t give me any significant advantage, I don’t think. There are mixed reports about Avastin and it certainly hasn’t proved itself to be a wonder drug.
Deirdre
I had/have spinal secondaries. Initially they were not going to do anything about it, as they considered it stable. Only when I started to exhibit signs of spinal chord compression did they move and very quickly indeed. My compression was at T5 and I have some wear and tear which is untreated at L5. Where on earth is C5? Anyway they have taken away as much cancer as they could, although not all of it obviously. My spine has been stabilised with titanium and a spring which rather looks like a film case. They performed this operation coming in from the back - which I thought was obvious, but apparently the old school comes in from the front. Sounds bizarre to me. Anyway this is a major operation, after which I went straight onto chemotherapy, more or less at my own request. I did not want the cancer getting the slightest toehold. As it was, it was extremely painful, largely because I kept forgeting to press the morphine syringe drive - so don’t do that! I was so desperate to get home, I managed to break the record for this operation and be home in five days. I really pushed myself, but ~I really needed to be home. The experience for us all will be different as will the recovery time. But I can walk and I am not paralysed, which if it had collapsed, they told me I would have been. This was emphasised to me by several health professionals. Ultimately you gotta do what you gotta do, and if you need more infor than by all means contact me
Take care
Hi everyone thenk you for your messages I had the bone scan yesterday and am due a CT scan today. Am keeping my fingers crossed all goes well.
Surgery is due for A week today next Friday they are going to pin my neck from the front and the back as they wan to make sure they secure it everywhere. I have been told I will be in hospital for 4-5 days so not to long. The reason they feel it is best to operate before radiotherapy is radio can move the area being treated if this happens it could then be fatal.
As a bot gutted they will have to shave off some of my hair as I lost it all to chemo before and how it has growm back a nice lengh. I Am due to get married in August and not I will have a stupid shaved area.
CAn i ask others ot have had this operation done what is the scar like is it very noticeable???
By the was Celeste C3 where my cancer is, is right at teh top of the spine going into the head area C1-C4 are the main parts of the spine that is why if oyu get cancer in that part they will often operate other wise it can be very dangerous.
Thank you all for your message and i will keep you all informed. A busy week ahead with hospital today a Christianing on Sunday where i am going to be the godmother, a Funeral on Monday to my dear friend who died of boen cancer and hospital all next week. A week I am not looking forward to
All my love clairemm x x
Hi Clairemm
What an awful couple of weeks you will be having. I’m glad the op is being done pretty quickly - that must re assure you. I hope the other scans show zilch. Take care, hope next week is not too draining on you, emotionally, and keep your strength up for the operation next week. Will be thinking of you next Friday and hope recovery is quick and as painfree as possible - remember what celeste said - use the morphine pump!
Nicky x
Hi Claire!
I havent been on the boards for ages so was gutted to log on tonight and read your latest news matey… its wa awful being diagnosed at your young age anyway but to now have bone mets…its just not fair…
You are certainly going to the right place, in going to the Marsden… i was very impressed when i went there.
I really feel for you, i know how scared i was being diagnosed with my secondaries… if i know you, you will be positive and as bubbly as ever though…
I will be thinking of you next week with your op… please let us know how you get on…
Sending you lots a love and hugs
Jak
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Thank you ladies for your messages. It has been a hard week with being diagnosed then becoming a god mother yesterdaya nd today attending my dear friends funeral. We use to work together and then she was diagnosed with BC 2 years beofre me she was always a great support then she was alos diagnosed with Bone secindaries and things went doen hill from there.
I am going to miss her so much I know I ahve good support from family and friends but only someone going through it really knows what it is like.
I am so scared to have the operation and as all has happenened so fast I have been told anything all I know is they will pin my spine. They are going to operate from the front of my nech and the back not sure why?
I am due to ber admited on Thurday afternoon and will have surgery on the Friday. HAs anyone else had there spine pined if so what can I excpect? will I be able to eat ok and talk I am very scared I dont know what to expect and I cant find anyone who has had the same operation.
Daisypink, how are you I think about you all the time and wonder how you are doing what is ahppening are you on any treatment now please if you can fill me in you pm on thew other site I also think oyu have my emial address please keep in touch.
Thinking of you always Love Clairemm x x
Hi Claire
I am so sorry to read your latest post. I don’t come on this site very often but Jak told me you had posted.
Good luck with your surgery and keep us posted on how you are doing. Think of you often.
Loads of hug to you Mate
Karen