radiotherapy on my spine and pelvis

Hi i am sorry i can not help, have not had on my spine, only lungs  and brain.

Hope some one comes along that can help you answer your question.

Hi Thea, Sorry you are in the position of not knowing what to do for the best! Like Ellie, I do hope someone with experience comes along to answer your question.

What I can tell you is when I had severe back pain, it was discussed about what to do.  My cancer doesn’t respond to chemo or RT but they were talking about RT only as pain relief. I was sceptical and said I would only agree to it as a last resort. I was referred to a specialist spinal consultant who arranged for a scan of my spine. I had 3 vertebra out of place and ended up having a Spinal Decompression during which they inserted a metal plate, to hold the spine together. I still get back pain if I overdo things but nothing like it was. Have you seen a spine specialist? Good luck.

Thank you much Annette for your advice

I haven't seen a spine specialist and something in the back of my head is telling me it might not be all down to the cancer. I did have back problems before as I had fibroids pushing against my spine but they should have shrunk now I am hormones but I do wonder if they caused any other damage. 

My understanding of Rt is that it is just for pain relief just as it was for my shoulder. it would be a one off super blast. Mt consultant told me before that the effect is to change the sponginess of the bone that has cancer to something more dense. I might need that before anything else as I imagine having work done could be a problem as the area is in their wards 'a mass of mets'

I am seeing my oncologist in a few weeks so I will ask her if its maybe an idea to see someone to check for other problems before the RT

xThea

Hi Thea,  I too have metastatic breast cancer with mets in pelvis, spine, ribs skull etc.  My oncologist has recommended radiotherapy for pain relief in spine , but I have put this off and they said it could only be once (I think).  I seem to be managing the pain okay and keeping active helps me (as much as I can).  I also have a bulging disc.  I am scared of something happening to my spine as he said I would be paralysed.  I too am scared of doing too much.  I was only diagnosed in September last year.

Lee 2 x

Hi Lee

I have been on treatment for a year and a half now so remember how those early months felt. Sending hugs. Hang in there and keep asking questions.

Yes this the of radiotherapy is only offered once.I had my shoulder done just before starting chemo and it took months for it to recover but it gave me back movement. I have read that the spine is different because of permanent nerve damage so its about timing but also that depending on where it is they might have to put me in a cage like they did when I had a brain scan. it all sounds scary

Hi Lee, and Thea, different cancer, but with mets to spine, issues are double wedge compression fracture, 3 crushed discs, spinal stenosis, arthritis and chronic osteoporosis, and my treatments for bone cancer are bisphosphonates which speed up the natural way your body replaces bone there is also denosumab, an injectable alternative both alleviate pain, SBRT to target the mets,"you must have less than five," then chemo cabazitaxel/prednisolone combo. with radium 223 or lutitium177 to follow. I like studying and radiopharmaceuticals look promising, along with kyphoplasty, "a minor surgery," but need to do more homework on those two, good luck to all of us.

Eddie xx 

Hi Thea  I had twenty sessions of radiotherapy to my left breast twelve years ago.  They say it can leave damage for years after this.  I dont like the idea of a cage. I felt claustrophobic when I had the nuclear body scan so cant imagine a cage .  Have you had the radiotherapy yet Eddie?

Lee 2 x

Morning Lee, I had 20 fractions, 73gy April 2023 to whole lower pelvic area, as my cancer, Prostate, had spread to 5 organs and 8 lymph nodes, and though not targeted my spine was impacted, but as I only have 4 tumours on my spine they can be targeted with SBRT/SABR, same thing, which will hopefully shrink the little Bs, but manage the pain as well, when needed.

Eddie xx

Hi Eddie

I didn't know you had it in your spine too. You seem to know a lot about the different treatments nd I'd love to know more about this. 

I too have a monthly denosumab injection that always has 'interesting' side effects on my tummy so now I prep for this with my loperamide. The only other thing I take is calcium and vitamin D. 

IS the SBRT/SABR the type of radiotherapy? I know the laser they used on me had a fancy name but don't remember much about it as the whole time I was in shock after learning the extent of my cancer. 

There hasn't been much discussion about the mets on my spine until now as all the attention was on my shoulder so I am only now hearing that it is wide spread with clusters around the base and across my pelvis.

These mets are causing me to walk with a limp and at times I am in so much pain I can't do much. I power through but said to the oncologist I  was worried as I had heard it can cause nerve damage to do too much and I wondered if a physio would be a good idea to know when its ok pain or bad pain. Next week the nurse rang to say they had a meeting with my latest scans and want to do RT and that physio isn't recommended as its 'too dangerous'. 

My spider senses are on high alert now. So any info will help

x Thea

Hi Thea, my understanding of treatments is prostate cancer related, which may well have relevance to yours, but I don't know.

I take Calci D and Alendronic Acid to strengthen bones, I get what feels like stomach pains, but is actually damage to my pylorus and duodenum caused by them, I take Lansoprazole which helps 

SABR, they won't do it for anyone with more than 5 mets, and there must be a clear line of sight as the focused beam of radiation is very damaging, and yes it's a type of radiotherapy.

Cytotoxic agents, Cabazitaxel, in my case but there are others, I haven't started this yet, but used alongside bisphosphonates, again Alendronic Acid in my case, shows a significant reduction in tumour burden, improved pain response while maintaining bone structure.

Radiopharmaceutials, Radium 223 and Lutitium 176 are usually seen as a final treatment, with Radium offering a little more time over Lutitium.

Kypoplasty is a "minor, " surgical procedure to inject a cement like substance to damaged areas, it can help, but does have  its risks.

Always talk to the professionals my friend, I have had physio, but not to my spine, I do find swimming helps me, but we are all different, and I'm no expert Thea, but I  don't think I would want physiotherapy to my spine. 

Eddie xx