Hi everyone
Wonder if you can help again. I’m seeing the onc soon and need to discuss monitoring. How are most peoples bone mets monitored?
I know that tamoxifen obviously failed for me pretty quick given my secondary dx 10 months after finishing treatment, now on femera and waiting to get ovaries out. Should i be asking for tumour markers and regular scans? Does this make any difference?
Thanks again
F
X
Hi FF42
Tamoxifen also failed for me and my bone mets were found last year. I had a local recurrence which was found on a routine mammo and I then had a bonescan and CT scan which found my mets. I had chemo last year so had another CT scan after 3 treatments and then another at the end. I have just had a 6 monthly CT scan, ie 6 mths since the end of chemo. The CT scans do show up bone mets. I will have another in 6 months and then, fingers crossed, if all are still stable I will go to annual ones - way too scary and infrequent for my liking but will discuss this as and when! If I feel any different or changes (aches etc) I can let my onc know and I will have a CT scan to check things out. My onc doesn’t ‘do’ tumour markers, which seem a much easier and less intrusive way to monitor things, hence the fact that I have CT scans regularly.
Hope this helps
Nicky
Hi
I was dx with liver & bone mets in Oct 2003, more than six years after my primary dx and following a year of bone pain. Just as we’re all different in the way BC mets affect us and our response to treatments, our oncs also seem to vary in the way they monitor us. My onc doesn’t do tumour markers or regular bone scans with me, but I do have nine-weekly blood & liver function tests, as well as six-monthly liver ultra-sound scans. When I have had bone scans since my mets dx, it has been when I have reported “new” bone pain. On the most recent occasion, the bone pain had subsided by the time I had the scan (which did show some progression), so no change in treatment was required.
My onc’s first and key question when we meet is “how are you?” – I like the idea that he and his team are guided by my assessment/ concerns/needs, rather than by a rigid scan regime that might not be necessary at the moment, while I’m doing relatively well. I also appreciate the reduced amount of “scanxiety” and the sleepless nights I’d have if I had more regular scans. But that’s just me, and I can understand if others feel happier being more closely monitored. Think I might be part-ostrich!
Just a thought, F & Nicky – are you having bisphosphonate treatment for your bone mets? I’m a bit surprised when I hear that people with bone mets aren’t having either a tablet or an IV bisphosphonate, as the tablet form has worked really well for me over the years, and I would have thought it was standard practice for a bisphosphonate to be prescribed in your situation.
Marilyn x
Hi…I’ve only had 2 scans in nearly 6 years…one when I was first diagnosed and the 2nd when I developed some nerve pain and needed one dose of rads…I would have another scan if there was a problem…either a pain or a sudden rise in my tumour markers. I have tumour markers taken every 3 weeks and I meet up with the oncology doctor each time to discuss the latest results and how I’m feeling. My markers are very reliable so I’m very happy not to have scans.
x
My bone mets are currently monitored via the CT scans that I get because I am on chemo for spread to lymph and liver. But I think I read somewhere that CT scans don’t pick up small hotspots so are not as detailed as a bone scan.
At the beginning of the year I took part in a trial at the Marsden to monitor bone mets using MRI. I had to have three MRIs spaced about six weeks apart. The theory is that MRIs can look much more closely at bone mets to see exactly what is happening. But I think their routine use is still some time away.
I tend to know when I have some bone progression because I get new pain. Then my doctor has done a new bone scan which has looked at how extensive the new spread is and whether there is any need for surgical intervention (for ecample if a bone was in danger of collapsing) or radiotherapy. However, if there was progression just in the bones and no spread or progression anywhere else I think the doctors would continue with the current bisphosphonate treatment. It would be unusual for them to prescribe chemo for bone mets and, unless the skeletal system is compromised in some way or there is severe pain, seems to be the best management for slowing down and sometimes halting bony spread.
I like the “how are you feeling” approach much better than waiting for scans which always cause me a huge amount of anxiety.
Deirdre
My treatment isn’t that dissimilar to deirdre’s and that is not surprising as we are both at the same hospital. But I do not have CT scans. I have come to an agreement that they won’t unless i speak of problems which suggest it is necessary. If I mention bone aches and pains then they go for a bone scan, xray & MRI but what I like is an attitude amongst the team of asking me if that is the way I want to go. I once got a registrar who expressed surprise at lack of scans and that protocol demanded I had this and that. I am afraid I laughed at him and suggested who he could go and talk to. The only one I am not allowed to wriggle out of are the 6 monthly MUGA scans as I am on herceptin as well as pamidronate. This mix has kept me well for some years now since my bone mets were discovered in 2002, that is apart from the flare up of pain in this past year. I haven’t needed pain control before this.
Dawn
Hi Marif
Yes, I’m on bisphosphonates and have been since dx last year. These have been shown to be effective as my last scans have all shown signs of healing. I think my CT scans are mainly due to the local recurrence as well and they are obviously checking for a spread to organs. If they remain clear in that respect I think that’s why I’ll go on to annual checks and, as the other ladies have said, a case of if I notice any changes/aches etc then I can get a scan done.
Nicky x