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
afraid l cant answer your questions but wanted to suggest you contact your breast nurse and insist on being seen by the surgeon asap so you can get information and your questions answered.Im sure others will be able to answer better.sending a big hug x
Dear claire,
I remember your posts from before. I am so sorry to hear of your dx. You poor thing. I know from my friends with bone secs that pain can be very bad when dx, but can be succesfully managed. I wouldnt be surprised if the other pain you are referring to in your head is deffered pain from oyur back.
Kick up a fuss or get someone to fuss for you, its terrible that you had to go private for your dx, your bcn should be ashamed.
Dont worry about going on, you have alot to go on about! And sod being positive at least for a bit- but hang in there and let us know how you get on
lots of love
samxxx
Thank you for your messages I am thinking of moving hospital now to the Royal Marslden as I think I will recieve better care there.
Will keep you updated love Clairemm x x
Hi Claire.
I would definitely get other opinions and ask for referal to the Royal Marsden if that’s near enough for you. Sorry you’re having to face more treatment. I’m afraid I don’t know much about spread to the spine but I do know that they can use radiotherapy to control pain, that there’s trials for various things and a lot of people are given bisphosphonates to help with bone density so yes there are things available to you I’m sure.
Hope you get seen promptly so you can get some good progress.
You might like to post on the secondaries thread as there may be some people there who can help you more.
Good luck and lots of love,
Angie
hi clairemm,
i remember speaking to you before on here and im just so sorry to read youve been having such a rough time and have had to seek private treatment - i agree, your bcn shud be ashamed of herself.
re being transfered to the marsden id go for it, im being treated at the marsden in fulham rd and theyv been very good, i cant fault them.
i wish you all the best and will keep my fingers crossed for you that treatment and surgery go well.
lots of love, cesca xx
Hi Clairemm
Just to let you know I have bone mets after an initial dx in 2003. My main area is my hip but I also have a small spot on one bit of my spine. Since dx (for mets) in April last year I have had chemo (FEC) as I wanted to flush out my system as it appears to have been spread through the blood system rather than lymph (I had no node involvement at primary dx). I am now on 4 weekly bisphosphonates (Pamidronate) to strengthen my bones as well as an Aromatase Inhibitor (Arimidex) as I am very hormone sensitive, this is after being put into an early menopause (I’m 46 by the way). If an operation is needed I think it is to pin the bone in some way if it is very weak, otherwise there is a cement type thing that can be injected (I think) to also help. As Angie says, rads can help the affected area as well to relieve pain. It’s certainly worth asking for a 2nd opinion if you are not happy with the care you have had but maybe see what you previous onc or the new one you’ve seen says first? I can’t fault the care I’ve had in the 5 years since original dx and I’m still under the same team. By the way as it has spread it is incurable but my onc says we should treat it as a chronic condition and there are many different ways to do this. I know how you must be feeling right now but this forum has been brilliant for information and support. A local recurrence will be a lump in the same place as before (which I also have). Also if you have had an MRI I’m assuming there is no evidence elsewhere which is a good thing. Please feel free to ask me any questions and also maybe put a post on the Secondary BC part - you’ll get loads of advice but maybe not until Monday when it seems to be busier!
Take care
Nicky x
ps by the way I was also on Tamoxifen after primary dx but it stopped working for me hence the spread.
Hi, again
Have just seen you have posted on Secondaries part so hopefully you will get some more replies soon.
N x
Thank you all for your messages I am going for a CT scan and bone scan and am also seeing the oncol on Wednesday I will keep you updated
Love Clairemm x x
Dear claire
Very sorry to hear that you have been diagnosed with cancer again, what a blow. I hope that you get the treatment you need as soon as you can. The Marsden is the top place so that’s where I’d want to go in your situation.
Mole
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 everyone just to keep you updated I am being admitted to hospital on Thursday and will have my operation on the Friday at this stage dont know anything so am hoping they will fill me in when I see the oncol on Wednesday.
Take care everyone Love Clairemmx x
clairemm, thanks for the update as i have been thinking about you. not sure about the op you are having though so hopefully someone can come on and give advice. you will be in my thoughts on fri and i hope all goes ok for you. you have been through so much. lots of love lainey xxxx
Good luck Claire - I will be thinking about you on Thursday and hope it goes well. A friend of mine had spinal surgery a few years ago, I think it can be painful so make sure you get painkillers sorted out.
Mole
Hi everyone thank you for your messages I will not be on here for a week or so as will be in hospital but will try and get my partner to log on and give you all an update.
Love Clairemm x x
HI Claire
just wanted to pop on and wish you the best for this week
I think its a great idea to go for the marsden
xxsam
Hi Claire just wanted to bump this up to say hope you are recovering and sending all the best
love samxxxx
Hope the Op went well x
Hi everyone sorry I have not posted sooner, the operation went well I was ment to be in for 5-7 days and was let out in 48 hours I did beg them to let me out LOL.
I feel fine a bit tired at times but much better than I had expected, the day I came out of hospital I went out shopping and did some cleaning my family and partner were not impresed.
I have started my bone treatment and Herceptin again and also Prostrap which all went ok, except on the way home I felt very faint and sick but dint want to go back to the hospital so just came home and slept. I have had miagranes since the treatement which I have everyday and it is driving me mad as i am once again always in more pain.
I also started Radiotherapy yesterday which all went fine.
Thank you for your messages
All my Love Clairemm x x x
Hi Claire, how nice to hear from you- and like the pic- is that you and your fella- sweet!
Very impressed you were able to go shopping so soon 
Love sam xx