Just wondering what’s the norm for those with secondaries. My oncologist believes scans raise anxiety (scanxiety) so recommends no more than once every 6 months if things are stable. What would make you ask for a scan to be done sooner?
Hi weepixie
I have secondaries in my liver, was diagnosed 2010, bilateral mx. I have a scan every 6 months, a bone scan once a year, and I see my onc three monthly which ties in with my scan if that makes sense? My last scan and onc app was in jan so I now have an app for march when I just see my onc to discuss how I am, then I will have a scan in june.
Wepixie, yes I would ask for more regular scans. How does your Oncologist know things are stable if they only scan you every six months. Cancer progresses very silently, and can change quite a lot in six months.
For example in September 2012, I just had a few bone mets in the spine (which I’ve had since 2009), but by December 2012, I had 5 brain mets. Had I not had regular three monthly scans, these would not have been discovered, and would almost certainly have progressed to an untreatable stage. As it is they have been disovered early, and can be treated with high dose stereotactic RT.
Yes radiation is an issue with giving too many bone and CT scans, but your Onc could always do MRI’s instead (don’t let them say MRI’s are too expensive).
As I always say, as far as secondary BC is concerned, ignorance is never bliss. The more you know, the better your chances of getting the right treatment, and surviving for as long as possible.
Hi Weepixie,
I agree with Lemongrove when she says ignorance is never bliss. When I dirt first diagnosed in 1994, I chose to delegate my treatment to the medics - now I feel I have to find out as much as I can so when I am offered treatment choices, I have an idea of what to expect.
My onc wants me to have a scan at a 6 monthly interval. I guess we’re all different and yours will tie the scan in with the treatment you’re getting. In my case, I’m on Zometa and Lectrozole and I understand that the latter endocrine treatment takes time to kick in. Maybe like me, you have recently had quite aggressive radiotherapy/steroid treatments and your onc wants everything to calm down for a while. It is hard, I know, when you want certainty but that doesn’t seem to come with the territory we’re all inhabiting.
Hopefully you feel you can trust your onc’s judgement, and havhome read up about treatments here, you will be able to have a frank discussion about your concerns.
And if your onc thinks you’re stable, that’s great news.
I’m currently scanned every 12 weeks, as part of the trial I’m on. When I was on chemo, I was scanned every 3 cycles to check it was working, so we were able to switch treatments quickly when it wasn’t working. In the past, after rads to the area with my mets, the frequency of my scans dropped from every 3 months to every 6 months as the tumour continued to shrink, then to once a year when I got to NED. But when I was being scanned annually, my onc made it very clear that I was to get in touch if I felt any symptoms.
Congratulations on being a Stable Mabel!
I am on chemo and am scanned about every 3 to 4 months, to see if it is working - like Angelfalls - and the chemo is changed when it isn’t working.
Lemongrove - How did they find the brain mets? They have never scanned my brain. Did you have symptoms or is it routine at your hospital?
Ann x
Ann_04 and Lemongrove
I too have wondered about brain mets and how they are found. Like Ann I have never had a brain scan but have a CT scan roughly every 6 months (usually when I am having a ‘wobble’). I think my onc would be happy to leave it to yearly but asks me if I want a scan or not. But then I have been NED for a long time (thank goodness and may it continue!). What symptoms should we look out for so that we can requesscan brain scan?
blondie
Angelfalls, Ann 04 and Blondie, I had a routine head scan in September 2012, which didn’t show brain mets, but then in December 2012 I was taken into Charing Cross Hospital with a massive infection caused by an infected seroma (which had been going on since 2009, when I had a MX at the Princess Royal Hospital in Haywards Heath). During my stay in hospital they decided to do another scan of my head (MRI this time), and it was then they discovered brain mets.
What is vital to remember is that cancer progresses silently, and in my view it is playing with fire to wait for symptoms to arise before scanning . I have been living with secondary cancer for three and a half years now, and apart from one incident when I had to have rads for a spine met, have had no symtoms whatsover. Had I not had regular scans nobody would ever have known about progression, and things would probably be out of control by now.
Thanks to my Oncologist being very proactive, and doing regular scans, my brain mets are treatable. I am currently being treated with Lapatabib and Capecitabine (because Lapatanib is one of the few drugs that can cross the blood brain barrier), and if this doen’t work they will zap the brain mets with stereotactic rads at a high dose (which is potentially curative, spares healthy tissue and has fewer SE’s than WBRT) . My Onc will also arrange scans of the rest of my body, to see if the Lap/Cap combo has had any effect elsewhere, and if it hasn’t the plan is to put me back onto Herceptin/Cap or on a trial testing the new generation of Herceptin.
Please don’t wait for symptoms, and don’t rely on six or twelve monthly scans. Cancer can go silently through the body in 5 months.
Thanks for all the replies I see that 6 months seems to be the norm. Lemongrove what you are saying is exactly why I asked. I’ve had no symptoms from my mets and goodness knows how long they had been there, silently doing their thing. I last had a scan at the end of chemo in September. I am waiting for a scan appointment now and just hoping that 6 months hasn’t been too long. I will also ask about a brain scan as this has never been offered although when I asked ‘what’s the worst that can happen?’ my onc said spread to the brain would be the worst case scenario. That being the case why don’t they look out for it? I’m just a little bit scared now.
Weepixie, don’t be scared. It’s being in the dark that’s scary - not the light. Just take control and write a dhort letter to your Oncologist saying that you feel six months is too long an interval and that you would like to have more regular scans. This then puts your Oncologist on the spot, because if they refuse and serious progression occurs as a result they could be in a difficult position. If they try to fob you off by saying they don’t want to subject you to all that radiation,just say that you will be happy to alternate CT and bone scans with an MRI.
Best wishes,
LG
Lemongrove - I was so sorry to hear about the brain mets. Like weepixie, it frightened me, too.
I know what you mean about not knowing the symptoms until it is too late. My Mum had bc which had spread and although we didn’t have a post-mortem on her, I believe it had spread to her brain at the end. She had a fall and it was assumed she had hit her head. I do wonder, though, because she started talking about my Dad as if he were still alive and she was obviously not with us.
I think I shall ask about a brain scan, although I suspect that they will try and palm me off.
I wish you good luck with your treatment. You are always so knowledgeable and your posts are very informative. Thank you.
Ann xxx
Thank you Lemongrove for encouraging me to take control. I had a long chat with my oncologist yesterday and raised my concerns about the scans. He has reassured me that there is no reason to think things are anything but stable but he has agreed to do a full set of CTs to compare with the previous scans and to reassure me further. He’s also ordered an echo, again just to compare with the previous one and be certain that the Herceptin is not causing any problems there. I’m due to go away on holiday in a few weeks so he suggested waiting until after that, he sees no reason for urgency so it will be another month or so down the line. I guess I am still getting used to the stable label and still not quite believing how lucky I am.
I hope you are well on your current treatment x x