Thanks so much for sharing your information, that was really helpful actually. I think I need to clarify with my Onc if they are wanting to treat the mets or the fractures, as I realised after I read your post that I wasn't sure it had been communicated to me what the radio was actually for. I'm also really glad to hear you had some compression fractures which healed on their own, that is great news and I am hoping mine do too. I've got a CT scan in a couple of weeks so hopefully things will be clearer as to whether or not the fractures have healed and if there are any mets still lingering anywhere in my spine xxx
Hi, I am sorry you are faced with this pressure to undergo a treatment you don't want. It sounds like the medics have not communicated very clearly. What is the purpose of the radiotherapy? I had stereotactic radiotherapy to my spine at L2 following surgery to fix fracture causing spinal cord compression. The object of the radiotherapy was to reduce any cancer mets still in the bone and improve my longer term survival chances. I had three sessions and was sick after two of the sessions and felt very tired but no other side effects. I have had a couple of compression fractures since then both of which healed on their own without any treatment. Surgeon said cause was a mixture of factors including age related osteoporosis, domino effect from having rods and screws in my spine from the surgery and also having taken steroids which can weaken bones. They were quite painful but got better on their own within a few weeks. I just used normal pain killers. Obviously I am no expert but maybe the extreme nausea and pain you had was because the treatment was to the neck area which was why your swallowing was affected. I have never heard of radiotherapy as a treatment for osteoporosis. I had my treatment a year ago and my scans have been stable since then with tiny mets just at the one site where I had the surgery. If the radiotherapy is to reduce the mets then I really recommend it. As you say, radiotherapy carries an increased risk of compression fractures but according to the literature I have looked at it is judged to be an acceptable risk balanced against the benefits of the radiotherapy. I hope you get more info to help you with deciding about this. All the best, Jane xx
Hoping someone can share any similar experience as I'm really strugging to make up my mind about what to do about this.
I had surgery to remove a vertebra in my spine (neck area) in January and I had radiotherapy to the vertebra directly above and below the one that was removed. The radiotherapy was awful and I felt sicker than I'd ever felt (not even chemo had made me feel that sick) about 4hrs after the radiotherapy. I suffered with intense, nausea inducing pain and throat/swallowing side effects for 2 - 3 weeks after radio and it is not something I want to repeat.
I started treatment not long after surgery. A couple of months after surgery, I suffered two partial compression fractures in my T10 and L5 verterbra, which neurology have said is due to osteoporosis (a complication of the cancer meds), however there are also mets in these two vertebra. I don't really have any pain from the mets or the fractures. I only have the odd twinge / tender muscle on one side of my lower back throughout the day that lets me know anything is wrong.
My Oncologist keeps having a discussion with me about whether or not I want radiotherapy to these two fractured vertebra. I keep telling her that I don't feel its necessary at this stage as I am on other treatment. We are now four months down the line since the fractures and I feel pretty good most of the time.
However, I keep getting phone calls and letters from the Oncologist about this damn radiotherapy and they keep making plans to get me booked in, and I keep telling them not to! I had a phone call with the Oncologist that specialises in radiotherapy to discuss it properly. I told him my views, he agreed with me and said there isn't any evidence to suggest that its beneficial for healing the fractures one way or the other. He suggested we see what shows on my next CT scan and then have another discussion as perhaps it would be good for me to just have it anyway (WTF?!).
I have since read that osteoporosis would not normally be treated with radiotherapy and that in actual fact, radiotherapy can weaken the bones even further.
I've received another phone call and letter this week again trying to get me booked in to discuss radiotherapy and then start a course of treatment.
I can't fathom why they are pushing this so hard, when I keep telling them I have no pain, lets leave it alone and see how my treatment is doing at the next CT scan. I don't see the point in zapping more of my spine at this point as I would much rather save it for when I really do need it. Also, shouldn't I be getting advice / consultation with someone that specialises in osteoporosis at the same time?
As an indication of how well I am, I managed a 4 - 6 mile walk for the first time last month. It was up and down a huge hillside. My back felt great. When I spend 4hrs sat down in front of a computer, I get the "the twinge", which comes and goes but isn't enough to require painkillers or anything. I know what the warning signs are to look out for in relation to spinal cord compression.
Does anyone have any info, or has had a similar experience, as to whether or not radiotherapy to the spine with osteoporosis was helpful or not? I really don't know what to do and because it keeps being pushed at me, I keep feeling more and more like I should just have it done, even when I don't want it.