On Friday I was diagnosed with a tumour on L2 vertebrae. So, boxing gloves on for round two of my cancer journey. Round one finished in July 2009 following mastectomy and chemo (TAC, Triple negative). My consultant is talking about surgery to remove the whole vertebrae and make me out of metal (should be fun at airports!!). I have been looking through the forums and can not find anyone else who has been offered surgery. I would love to hear from someone if they have. Radio / Chemo are the other options (possibly as well as surgery anyway!) so - any comments / thoughts / help! Half the time I feel fine (except for the pain) and then I fall apart! This second diagnosis takes a bit of getting your head around!
Hello Sadie, I did wonder if your Onc was talking about vertebrolasty? I pulled this thread up the other day for another forum user. breastcancercare.org.uk/forum/viewtopic.php?f=94&t=24306&p=376133&hilit=vertebroplasty#p376133
It certainly does take time but you will get your head around it all, we all do, eventually. My story if it helps, I was diagnosed with both breast cancer and bone mets 8 years ago when my hip spontaneously fractured. Had a very successful hip replacement and still here.
You will find friendship, support and others with a great wealth of knowledge and experience in the Secondaries forum…xx
I have a small spinal tumour (T or L 4 can never remember which - but lower spine anyway) and wasn’t offered surgery. But my story may be of some interest to you. We finished up going for an obliterative dose of rads (20) to the spine, after discussion with my medical onc and some research that showed if you have a single distant met, your prognosis is much better if you go after the met aggressively. This presumes that the primary is also treated aggressively with chemo and rads.
My rads onc wasn’t as convinced as my medical onc, and recommended a light dose of rads, because having further rads to the same spot would not have been possible if the tumour returned. She was much more into a palliative approach than a curative approach. Having established that if it did return I could have cyber knife treatment to the same spot, I took the gamble and went for the high dose. I haven’t had a scan since, but my onc is fairly certain the tumour couldn’t have survived the rads - but we shall see. So I may well be cancer free - although I have a bit of a suspicion there is something going on in my arm that I need to get checked out soon.
I am assuming this spinal tumour is your only secondary. I only found out recently (thanks to a poster here, Lemongrove, who is in the same position) that there is a term for this - oligometastases - and there is some encouraging literature on the net about it. Lemongrove herself, I hope she doesn’t mind me mentioning, is being given a similar course of treatment by a Professor at a major cancer centre, and the words possible cure are even being used.
I’m sorry this is so long winded, but I’m wondering whether high dose rads and/or cyber knife could be an option for you to avoid the surgery? It may be that your tumour is too big, and that is why surgery is being offered. Chemo doesn’t seem to be quite as successful with bones - I think I remember reading that only about 1/3 of tumours shrink with chemo - although I did get a response to chemo (I had FEC and TAX, my secondary was found at initial dx), but not sure how much as with bone scans it is hard to quantify.
Anyway I hope this is helpful, and as there are quite a few others here with spinal mets, I’m sure someone else will be along shortly with some relevant experience.
Belinda I missed your post as very busy typing! That is an option I hadn’t seen before - very interesting. Do you know if they treat the tumours first?
Hi - This is of great help! It is the removal of the L2 vertebra they are thinking of. A massive op - but if it is for the best, FINE. However, I am goign for a second opinion at the Marsden (Prof Johnston.) This is a steep learning curve and I am playing against time as new symptoms deveroping daily - loss of sensation in my right leg, pins and needles etc!! Oh JOY!! So, please keep any info you think will be of help to me coming - I really appreciate it!
Finty - when did you have your rads? Yes. CT scan clear, just waiting for PET to confirm nothing anywhere else!! Primary treated very aggressivley in 2009.
Hi Sadie - I had mine all at the same time (breast and spine), 7 weeks altogether, finished in July. I had them at the Harley Street Clinic where they do the cyber knife treatment.
Good luck - let us know how your second opinion goes.
finty x
Vicky had a vertebrae replaced through surgery in 2006 and although her back is still tender it certainly prevented any further spinal compression. I think it was T12 in her case.
She’s never had a problem with airport scanners as I believe they use titanium or an alloy which is non-magnetic. So having an MRI isn’t an issue either.
Hi, I’m really sorry to hear about your diagnosis. My mum had surgery on her spine her T2 vertebra had actually collapsed so they had to operate on her urgently they told us at the time there are two ways of getting around it . One way would be to fix the actual vertebra but this was risky as they would need to go through the front etc or alternatively they would go from the back and place a metal support plate and decompress the spine. She had the operation in June and it lasted around 11 hours but that was because it was a very delicate operation especially being the T2 vertebrae. Once her wound had heeled she was given ten sessions of radio She was discharged around three weeks later and was given a support for her spine. We were all so scared but now that mum is home and the docs have done further xrays she has made an excellent recovery. She’s now starting physio try walking without any aid and is on oral chemo. Basically what I’m trying to say is don’t worry be positive my mum went through a lot but she’s making a recovery and so will you :). If you have any questions don’t hesitate to pm me I went through this with my mum and did a lot of research into it. Good luck with it and let us know how u get on.
Hi all.
Had a brain screamingly noisy brain mri yesterday on my birthday!!)
Afterwards the oncologist showed us the digital image on the computer and to cut a long story short wasn’t really sure what was going on so he is referring me to a neuro surgeon at the Queen Elizaberth hospital. I pointed out gthat I’m more frightened of brain surgery than the cancer. But as he pointed out there may not need to perform any surgery but he wants it sorted first to be on the safe side.
I then asked if the bone mets could be treated and he said after we’ve sorted your head out!
As far as I’m concerned my head feels perfectly fine but there you go!
Hi bm – It sounds very similar to what your Mum had done to what they are suggesting for me. So ANY more details would be really appreciated! Are you in the Midlands? Just wondering if it is the same consultant at the Royal Orthopedic Hospital. My L2 is collapsing and I am slowly loosing sensation in my legs. I have a fracture and it is deteriorating fast. They are talking about removing L2 and replacing it with metal. About 14 hour op! I am delighted your mum is improving. You mentioned research – can you point me in the right direction? I hear a lot of the data comes from Japan where they approach things in a different way.
Hi Sadie, your condition sounds similar to mine in that my main tumour is in S1/S2 with fractures. I too was loosing feelings in both my legs, feet, buttocks and vagina. It was afte presenting to my gp for over 8 months with bone pain that this was enough to get me referred for a bone scan and an mri.
I saw a neurosurgeon who referred me to an oncologist as he thought she could deal with it better than him. My mobility by this time was almost nil. The oncologist referred me to the Christie for one big boost of radiotherapy and following the post rt pain of about 3 weeks the difference was like a miracle. I am now walking again, my pain is controlled by morphine and I am on Zometa, Herceptine, Vinorlbine and Xeloda.
I feel great in a just a few months but in saying all this if I was given a choice for surgery to have the darn thing cut away I think I would probably say yes straight away.
Im sure they will get your head sorted and get the back done soon after but you must keep on at them if you are loosing any more feelings in your legs just to keep them informed then they will know how and if the back becomes more urgent than your head.
All the best hope treatments progress quickly and you can get back to feeling ok
Hi Sadie - I too, have a similar story. Really bad back ache for several months. Lots of trips to the GP for pain killers. Then, sensation in my thighs and feet started to feel odd - i.e numb thighs, and tingly sensations in my feet. My gait was also odd and my balance was off. Finally admitted and referred for emergency MRI (Nov 2009) and diagnosed with fractured vertebara at T11, which was causing spinal cord compression. I was put onto strict bed rest at no more than 30 degrees, given high dose steroids, to reduce the internal swelling and then operated on after 5 days. I had rods and screws inserted, in order to stabilise my spine. The vertebra was not removed, but i had a blast of 10 doses of radiothereapy after about 6 weeks. I was up and mobilizing 2 days after the op., which only lasted about 1 - 2 hours. I’m now on Letrozole and having Herceptin every 3 weeks. I am doing really well. Still take a few pain killers, but am feeling fine. Go to the gym and swim about 2 - 3 times a week…when I can’t think of any excuses not to go!
Hi Celestine - How do I pm you? Sorry new to all this and not sure which button to click!!
Hi Isobel - Wow bed rest!! I am walking round with a fractured spine on megga doses of pain killers. Maybe I should be in bed!! Good to hear you have had a good outcome to your surgery - thank you for sharing it with me.