Dr’s on fence about bone mets... help!

Saw oncologist today after 3 FEC to see if suspicious marks on spine, pelvis and rib have shown changes to confirm bone mets. No changes. My lumps in breast have gone. So await another ct and pet scan in a few months. Might be my osteopenia but radiologists still think it’s suspicious. Surely if the chemo has made the lump disappear there would be some changes to my bones? The waiting is torture. Anyone else has this? Did it turn out to be a red herring or bone mets? I’d just like to know one way or another! ?

Hi coffee

Are you being treated for primary? Either way it sounds like you have 3 more cycles of chemo left before further treatment is considered. Did you have a bone scan as well as this is the type of scan that tends to confirm bone mets - rather than a CT or MRI. Both of those can show suspicious areas on the bone but that doesn’t automatically mean it’s bone mets, it can be unrelated bone degeneration. Bone mets in themselves do not disappear, unlike soft tissue mets such as lung and liver, so your onc will be looking to see if they have hardened or sclerosed as it can be called. Maybe after the 3 chemo cycles you already have had it’s not obvious what has happened to them. After a course of 6 chemos (assuming you’re having 6) I would expect they would have a better idea. It might also be that the areas that they are concerned about are areas that bone mets usually show up in rather than areas that are damaged due to wear and tear. I’m only guessing here but as you are still having treatment I would concentrate on getting through that, which can be pretty tough. Although it would be better to know exactly what you’re dealing with your current treatment will be correct for ‘just’ primary or primary and secondary as it is systemic ie treating all areas of BC whether they are primary or mets. It is difficult to get a biopsy of the bones, although it can be done, and that’s the only real way to confirm whether it is mets or not so this could be a question to ask as you get towards the next scan. I know my bone mets, when first diagnosed, were one small area and a hotspot as they called it. I was stable with no progression whatsoever for nearly 5 years to the point that my onc was considering whether I had bone mets at all and were these two suspicious areas just degeneration. However as time went on I developed more bone mets as the treatment I was having stopped being effective so it was right to have treated them as bone mets in the first place in my case.

Hopefully this might help, although hasn’t given you a straight answer, maybe someone else will be along with their views as well.

Nicky x


Thanks for your reply Nicky,
I’m being treated as primary. 4 FEC then 4 T. Then surgery and radiotherapy. The oncologist said the treatment would be the same with bone mets or no bone mets. I had an mri and ct when first diagnosed. Ct showed spine and pelvis speckling. This is where I have osteopenia but they were still concerned. Had a bone scan that also showed something on my rib (I found out yesterday). Then had another ct after the 3 chemo. No changes. Nothing. They gave me the impression they’d have an idea after 3 but as there are no changes they can’t confirm (which I am grateful for) but also can’t rule out. It would be good to know but I understand their reservations. Just so hard waiting.

I’m 36 so radiologists don’t see osteopenia too often in people my age I’m guessing either!

Hi Coffee, I can’t add much to what Nicky has already said, other than my Onc didn’t think from my scans that I had mets, it was the Radiologist who disagreed, to the extent my Onc got a second opinion and that Radiologist agreed with the first one…so a similar situation to what you find yourself in. It is very difficult waiting for the result of all the scans, but as I’m sure you’ll have already been told, nothing will change the outcome, so try not to worry too much. I appreciate that’s much easier to say than do! I went straight onto Letrozole, which luckily I seem to tolerate well (Accord brand) and l think, all things considered, I’m doing okay. My scan 3 months later was NED and has remained that way so far…touching wood! I was told bone mets look like Swiss cheese and then on my later scan looked like they’d been cemented over, which is what you want to see apparently! Hope you get answers soon as I’m sure you’ll feel better once you know what’s going on. Thinking about you, Kxx

had suspicious lesions on my ribs but bone scan showed no mets just degeneration of bone.Untilits confirmed as bone mets live as if its not.good luck

Hi coffee

I was in a similar limbo land for a couple of months but was fortunate that my oncologist persevered with scans.

I have multiple degenerative discs and other spine problems so after first ct scan onc wanted a repeat 3 months later to confirm whether degenerative or mets. I had ct and nuclear bone scan - both inconclusive so had an MRI scan from which they agreed that I had mets in vertebrae but something else showed up in pelvis so another more intensive MRI scan was booked at a specialist cancer hospital. The waiting over Christmas was agonising. This final scan confirmed mets in 3 places.

What I’m trying to say is push for every scan available until they can confirm one way or another.

Waiting is horrible but concentrate on getting through your current treatment x