Oncologist on thursday informed me my lovely little tumour in my spine (L5) has started to grow again and is pressing on nerves, hence my limp and the pains shooting up and down leg.
Im to have an op to remove most of my L5 with the tumour:
Questions:
Anyone had a similar op? If so how did you find it, How long were you off your feet how you feeling now?
Im bit worried not about op about the fact im wizzing through hormone drugs! Anyone else gone through most of them then the bone mets calmed down??
Good Luck Lynn, not had a spine op but I’ve had a hip replacement 'cos of fracture 'cos of bone mets and would go ahead with any op to keep me mobile. Have you had any chemo yet? I haven’t, I think I might be moving onto my 3rd hormonal soon, Arimidex is starting to fail, tumour markers are slightly up. Which hormonals have you had?
Belinda…xx
I had an operation to remove my L2 vertebrae on 20th September. I had a secondary there and my onc thought it best to remove it as all my other scans, PET, MRI CT were showing up all clear everywhere else.
It was a big decision, as I knew it would affect my mobility up to some point, but decided to get rid of whatever was there to give me a better chance in the future.
The operation was a success and I came home after ten days in hospital. I had to stay on my back for a few days after the op, to keep my spine still, then got a corset type thing to wear to keep my spine straight when I got up and moved about. Still wearing that as have to wear it for three months, so it will come off for Christmas Day, yippee!
I am pottering about at home and doing ok. The corset is a bit heavy but I am used to it now. My walking has slowed down, but I can feel a small improvement every week. My back specialist has said it will take three months for me to recover and I am going with that. I do get impatient and down sometimes, but then think that I am realy lucky that they decided to remove it and give me a better chance for the future, not everybody gets that option.
I have only been on Arimidex and no other hormone drugs, so I am no help there!
Good luck with the op, be kind to yourself and chill when you have had it done!
Well lungs and liver still clear, but got an enlarged lymph node near heart or the aorta or something like that they said its not enough to put me on chemo and they cant biopsy it…nurses could it be down to the horrible cold I had or is it more than likely my little b of a friend tottering somewhere else??
Back-still no date for op im having the whole disc removed and a mental cage plus bone graph from my pelvis and screws to hold altogether! Fun! Ive asked to have it done at stanmore cause theyre leading hospital on this, got to have another ct scan on back and seeing back man next tues again.
BC nurse was really good she sat down and had a natter to me about everything which i think i needed, ive been reading the secondaries board abit lately and im getting scared with the whole convo about being er+ but not responding the meds is worse than being triple neg convos been really getting me down and upsetting me that im wizzing through meds at the moment plus i dont want my back sliced open and bits taken out and stuff…but ill stop moaning.
I had one of my ribs removed to put in the cage. Have a chat with the back man to see which one he thinks best
(and the least painful recovery after surgery!)
I was cut down my left hand side to access my spine.
Apparently my back man does it this way and not actually down the spine.
I have stopped reading too much, as it is getting me down and making me feel as if I am a no hoper with this thing!
I am sleeping a lot better because of this.
The night time is worse for me as I lie there thinking too much.
I live on my own too, so no one to wake up and ask to go and get me a cuppa and cheer me up.
Don’t worry about moaning, I think it does us good sometimes. I had a really good cry this morning and felt a whole lot better for it.
Lynn - I’ve got damaged and abnormal tissue near my aorta and central chest. This hasn’t changed in the last 18 months and they think it is rads damage as it hasn’t changed. Are they sure it is an enlarged lymph node and not damaged tissue? I would be doubtful to say it is due to a cold - I think it is a little b****g or could be damaged tissue like I’ve got so don’t go into panic mode yet although I know I would in your place cos I do that all the time!!!
Sorry to hear of the enormity of your op. Think you’re making right decision to go to Stanmore. My friend worked there and also at Oswestry and said both excellent places (She had previously done orthopaedics in Brum so had something else to compare it with! - not that I want to condemn hospitals in Brum as this was 20 yrs ago - god - how old am I then!!!)
Glad you spoke to BC nurse - I think you need to do that
By the way, you might want to re-edit what you’ve written above as at present it reads ‘mental cage’ and not ‘metal cage’ - sorry but it made me laugh - went into moira mode!!!
Good news that lungs and liver clear though!!!
Speak soon.
Kate
Made me laugh too Lynn. I thought it quite suits you having a mental cage put in your back (in the nicest possible way).
I know what you mean about the meds. Hormonals don’t work for me either (ER+ Her-2 -) so may as well be triple neg. Sounds good that you had a talk with your bc nurse (or should that be ‘key worker’?). I hope you get your op. sorted out ASAP and, good to hear from you anyway. Take good care of yourself.
Just wanted to say, keep your chin up, hope everything goes ok which I’m sure it will. Don’t worry about moaning, you deserve to have a moan by all accounts!
Thinking of you, take care and keep us up to date how you get on.
I think im going mental dont know about having one put in my back! Think i may go to my gps and get me some proper happy pills to cope with this round of crap my pain killers arent doing it for me anymore any recommendations on what not to take?
Kate I will speak to them about the possiblity of it being tissue damage i did have 15 lots of rad there. Im bricking it again slightly cause dont like lumps bumps or swollen things was looking on internet and getting myself into a right pickle so stopped that again…im trying not to stress over stuff i have abso no control over…my body and they diseases it creates seems to be as stubborn and independant as me!
Sorry belinda hormone wise ive had (spelling will not be great) tamoxifen, Armimdex and now im on Aromasin, BC nurse said that i am responding to hormone treatment and there are plenty more to go throught so not to panic just yet…plus think im happy enough buring my head in sand and will avoid posts on this matter…its like a car crash though you just gotta look!
Oooowww cages and corsets for my back sexy! Do you reckon Dolce and Gabbana do one?? Not too worried about op i can do ops just cant do scary spreading of stuff. But i hate being catheterised…think thats how you spell it i had a really bad time when i had my mastectomy with being catheterised so that will depress me bit…good thing im just having my bathroom ripped out and a accessible shower fitted which is handy didnt think i need one of those at 30 but hey ho all to help me.
Im actually feeling quite upbeat today i have no idea why I had alovely night out with a mate last night where we listening to really loud music at Brixton acad got chatted up…or attempted chatted up by a 19 year old (Im sure he was)…i think i tend to sit and ponder life death and stuff and i feel like im resigned to the whole thing (completely diff story when im having a bad, angry day) of the disease and dying young…maybe and i know there are ladies in much worse situations with children and stuff with less support than i get…that gets to me alot and breaks my heart when i read some posts on here…here think someones been slipping happy pills into my brew already today!
Anyway less waffle off me and more work whilst im still here!
been really getting me down and upsetting me that im wizzing through meds at the moment plus i dont want my back sliced open and bits taken out and stuff…but ill stop moaning.
Think i may go to my gps and get me some proper happy pills to cope with this round of crap my pain killers arent doing it for me anymore any recommendations on what not to take?