Just received devastating diagnosis of bone mets in L4 spine and pelvis after 15 years cancer free. (Stage 1B, Grade 2, lumpectomy, 5/52 radiotherapy, 10 years Tamoxifen).
Suffered from “weak” back for over 25 years, and found to have bulging discs and stenosis 12 years ago. After a 8 week period of worsening back pain was referred for MRI on Xmas Eve. Had urgent radio session on Thursday for “potentially critical cord compression” and sent away with steroids (which I’m taking) and morphine (which I havent needed) pending follow up. My back pain literally improved overnight!
Naturally I’m in bits and wondering what I may be facing next?? Xx
Hi cj1 I was diagnosed with mets in my spine in June this year had no idea I had any cancer diagnosis until this and then found out it was secondary to breast cancer, I think they call it de novo
I too had radiotherapy urgently because they thought I could have compression same as you and my pain really eased after that, I didn’t need to take steroids or morphine, I am now on Abemaciclib,Letrozole and I take 1 codeine in the morning and night along with paracetamol
I have found that if I overdo things I can get a niggle in my back but nothing at all like it was in the beginning. I am getting on with life as fairly normal as possible, back to work, visiting friends and family as usual and travelling by train to do so
Once I was given my treatment plan I felt much better about my diagnosis, this site helps so much with so many positive stories, we are living with this and I will not give up the fight
I hope this helps you, have you seen an oncologist yet xx
I had a meeting with the on call oncologist on Friday. He was lovely and enforced the point that this is equivalent to a Chronic disease and the improvement in treatments has been enormous over the last 10 years. I think they are pretty sure its arisen from my breast cancer which has probably laid dormant whilst I was taking my Tamoxifen
I think the next step will be biopsy then MDT meeting to decide on a plan of attack. Its the waiting thats causing me so much anxiety.
I agree the waiting is the worst, it’s the unknown I think, hopefully your meeting will be soon and you will then have your treatment plan, good luck and please let us know how you get on xx
Thank you. I worked at the hospital for many years where I’ll be treated, and the Breast MDT meeting was always on a Tuesday morning so hopefully biopsy before the following Tuesday’s meeting xx
I’ve had my up and downs, still having pain in the chest wall and found out I have cording on both sides 15 months after my surgery. I had an MRI on my neck and it was bulging discs.
Being chosen as a community champion is such a privilege and I try to help as many people as I can, especially those who have just posted. I still remember what it felt like being diagnosed.
Hi. I was diagnosed 27/12/23 with bone mets in spine and pelvis and tiny spots on liver (not sure if these are cancer or benign cysts). Primary was lobular in 2014 and had been on tamoxifen for all of the time in between. The bone biopsy confirmed same cancer as before. I had no symptoms and the mets were found while trying to find out why I had ongoing Covid symptoms for 4 months after infection! I had no pain then and still none now.
The regime for me is ribociclib, letrozole and 3 monthly denosumab. My scans are now stable and my tumour markers have dropped from 370 to 107… I feel fine and life continues albeit with occasional nausea and fatigue.
I agree the waiting for scan and bloods results is the worst part - my oncologist knows I would rather know the result (good or bad) asap so I can get my head round it while they discuss the plans with the MDT. I can’t go with the no news is good news plan - no news for me is dark thoughts, insomnia and anxiety!
Once treatment started I found it all a lot easier to cope with. I have found it very manageable and so far that it hasn’t stopped me getting on with normal life! I hope you are soon able to find the same. Xx
Sorry to read your post. I hope you’re ok? I’ve just gone through treatment for primary cancer same stage and grade. I’ve kept questioning the professionals and they all seem positive it won’t come back and i just can’t help think i’m not getting real answers. Have your team given any opinions as to why it’s come back? I take it you never had evidence of lymph node spread? It’s all seems so poorly understood. Sending love xx
Hi @rascal, thank you for your rely to @cj_1’s post. It’s great that you’re feeling better with a treatment plan.
We’d like to signpost to this forum from our social channels. May we use your quote ‘this site helps so much with so many positive stories, we are living with this and I will not give up the fight’ in a social media post to encourage people to sign up to the forum?
Update: restaging scan earlier in January has revealed bony mets in L4 spine and iliac (hip) areas, and ?something/not 100% sure what in my right pleura (lung lining), a couple of unidentified tiny tiny specks in my liver. My meeting at the breast clinic was very positive, the surgeon prescribed Letrozole and said he was 95% certain it was ER+ but a biopsy was necessary to make 100% sure. There turned out to be no spinal compression after all but the one dose of radiotherapy has made a massive difference, I have no pain at all! Been taking Letrozole for about 10 days now, felt a bit hot on a couple of occasions but other than that no side effects to speak of.
Met with Onc, BC Nurse and had biopsy on Friday, again all very encouraging and reiterated what I had been told previously about the length of time between primary and secondary diagnosis (15 years) being a good indicator of a less aggressive form and how Tamoxifen had clearly done it’s job for the 10 years I took it, which bodes well for the efficacy of Letrozole. Even better was the CT guided biopsy showed that the L4 spine area had shrunk so much from the one dose of radiotherapy it wasn’t big enough to take a sample from so they scratched around for a spot on my iliac crest (hip area) and took 4 punch biopsies - “hopefully enough to get a diagnosis” said the Radiologist, or else I’ll be called back for them to have a go on the pleura (lung), which is a slightly more risky area apparently
Next step is to get the results of biopsy back (3 weeks), arrange to start Ribociclib and a monthly infusion of Denosumab. Turns out I also have osteoporosis (runs in the maternal side of the family) and low Vit D so starting a super duper strength 7 week course of once weekly Calciferol.
Since the middle of January I’ve been swimming a mile a week, and averaging 5-6K steps a day which would have been unheard of a month before that. Physically I feel amazing , definitely becoming an endorphin junkie!!!
Hi CJ, thank you so much for your post. I’m home now after a few days in hospital where I went into hospital with compressed spine. Had mmr and recieved news of mets to multiple parts of spine and ribs. Still coming dow from lots of steroids, morphine, and a dosage of radiotherapy… But am on my feet again and mobile. It’s been such a fright. I’m 7 years post original diagnosis, and had almost got to the stage of forgetting about bc! Your posted sounded so up beep… I’ve 3 weeks or so before a palliative care plan, have recommenced letrazole, and wondered how you are getting on what meds you are on now? I feel something more that just letrazole will be in line but can’t find out what.
so they scratched around for a spot on my iliac crest (hip area) and took 4 punch biopsies - “hopefully enough to get a diagnosis” said the Radiologist, or else I’ll be called back for them to have a go on the pleura (lung), which is a slightly more risky area apparently
, definitely becoming an endorphin junkie!!!