monitoring secondary breast cancer

I was diagnosed with breast cancer in September 2008. In November 2008 I was told that I had a liver met and bone mets. The bone mets are throughout my spine. I have had a mastectomy and chemo. I am now on herceptin, tamoxifen and pamidronate. My initial tumor markers were 219, a few weeks ago it was 14.

I have had two MRI scans on my liver, the second was about 12 months after the initial diagnosis. There was no trace on the second scan however it had been there so could easily re-emerge.

I have not had a bone scan for two years and my oncologist said there is no point as this will not change the treatment. I have liver functioning tests, full blood count and kidney function tests.

I am a little concerned about noth having bone scans as other people seem to have them in order to monitor the effectiveness of the treatment. I have been told that at present there is no point as I do not have any symptoms. I am just wondering if other people are having similal experiences.

I have had my calcium levels checked once in the last two years.

Hi Alex, just wanted to say your markers are fabulous…wow 14, the lowest I’ve been is 19. I only ever have a bone scan if I have a new pain or I have a jump in markers. I’ve had bone mets since 2003 and I’ve had 3 bone scans in total. x

Hi Alex,

Interesting topic, thanks for starting the thread.

It’s good to know that your onc thinks there’s no need for scans and you have no symptoms. I have liver and bone mets, too and the liver has just been brought under control. My tumor marker was 50, a few weeks ago was 10 (sorry, beat you!).

When dx’ed last June, I had CT and bone scan to start off with. Then switched to private, since then, have always had CT + MRI scan. Until the every last time, from CT, they couldn’t tell whether it was cancer or scars in my liver, so sent me for PET scan, which confirmed that it was indeed scars.

It has been a long time since you had your last scans, but I’d agree with belinda, since your tumor marker is great, well in the normal range, I wouldn’t worry about scans at this stage.

I was told initially, I’ll being have scans at a 3-months interval, then maybe every 6 months. But inbetween, I’ll be trusting my tumor marker, too. Not all oncs believes in tumor marker (my onc is not totally reliant on it), but mine has been a pretty good indicator.

xx

Just my thoughts/comments

recently my onc commented to me that my tumour markers have been a fairly good indicator of what’s being going on in my body, but he would never decide on any course of action based on them alone. I was told I possibly had bone mets at initial diagnosis march 2009, but this was only confirmed by a later ct scan when repair was detected following chemo. I have not had a bone scan since the initial one, but have had recently got increased pain in my bones, particularly my knees and feet. I have been on regular paracetamol for bone pain for 9 months as this is a side effect of the treatment I am on. However, given the increase in pain I will mention it to my oncologist at my appointment next week and ask if it would be appropriate to have a bone scan now.

regards to all,

snoogle
x

Hi Snoogle

I remember a few years ago ringing my BCN saying I had pain in my knees and was worried it was bone mets, she re-asssured me saying that you don’t get bone mets in the knee joints and that it was probably caused by the Tamoxifen I was on at the time. Hope that helps.

Linda

Hi
I initially had a bone scan which determined that I did in fact have bone mets. Since then I had CT scans at 3 monthly intervals during and after chemo, switching to 6 monthly once the post chemo one was done. I was expecting to have another CT scan in May but my onc said he didn’t see the need as I had no change in symptoms and everything had been stable or ‘healing’ with the bone mets. I am now due one in a month or two but I suppose it is possible, with no change, that it won’t happen? It is a bit daunting being without any ‘pictures’ but I guess I would know if my bone mets were getting worse. For some reason my hospital don’t use tumour markers but I may raise the question again as my current onc is new to the area so it may be something he is used to doing. BTW he did say that bone scans are normally used for diagnosis not checkup and I haven’t had one since my diagnosis.
Nicky x

Thanks Linda,

That’s reassuring.

Snoogle
x

Hi Nicky

My onc doesn’t use markers either - not for me anyhow, although I am beginning to feel a bit left out finding that so many others do. Also, I hadn’t realised that CT scans were useful for bone mets, I thought it was just bone scans or MRI’s. Do you get detailed information on the mets?

finty x

Hi everyone.

Thanks for sharing your experiences regarding monitoring with me. I do feel a bit more reassured. One point regarding tumour maker tests, I am the one who initiates these. I ask for this test every 3 to 4 months, so far they have been willing to do them.

I have an appt on 21 October with ‘the boss’, consultant surgeon as I am due for a follow up appt and mammogram. I need to ask him a few questions about what options I have in my plan B, when the disease progresses. I also want to ask him about brain mets as I think I may be more susceptible to these as herceptin is not able to penetrate the lining that protects the brain.

Hi Finty
I was also surprised the 1st time I was offered a CT scan to check on my bone mets but yes, they do show healing and/or any progress. I also have the horrible contrast injected so this would show any organ involvement but, touch wood, this has all been clear up to now. I have never asked to see my scan results - way too scary - but I am reassured when I have been told they can see the bone getting stronger in the main area of my mets on my hip.
Nicky x

Hi Ladies,
Just wanted to say that my onc says the same as snoogles, that the markers are a good indication and only one of the things he looks at when I see him, his first question is always ‘have you any pain’, and then proceeds with his examination{with his eyes shut}, I was dx in jan 2006 with primary and bone mets at the same time when my hip fractured, it was a very scarey time, but 41/2 years on I am still here and in relative good health, I have a bone scan every year, a mammogram and ultrasound on the primary as it is still in there.

snoogle, I also get a lot of pain in joints, ankle, knee, elbow and wrists my onc says it is down to the Arimidex, but given the choice I would rather that than the alternative. So hope your pain is also that. Good luck with your appointment.
Love to all Roz xxxx

Hi Roz, just to say I was also diagnosed with bc and bone mets when my hip fractured. I’m now 8 years down the line, doing ok.
Also still got the primary…Good Luck…x

Hi Belinda, I am so pleased that you are doing so well its nice to hear from someone who has exactly the same as you, what meds are you on. I hope things carry on in the same way. Love Roz xx

Hi again Roz…I was diagnosed, was in my early 40’s, with both breast cancer and bone mets in 2003 when my hip spontaneously fractured. I had a very successful hip replacement, hope your hip replacement has been pain and problem free.
I had just over 5 years of hormonal treatments. Tamoxifen and Arimidex worked well but Exemestane didn’t work at all. Since April 2008 I’ve been on my first chemo, Xeloda (Capecitabine.)
I’ve also had bisphosphonates from the very beginning. At first I had Pamidronate infusions but I now take the daily Ibandronate tablets.
x

Hi Belinda,
I didnt have a hip replacement but had a pin and plate,but yes it has been problem free, the orthopedic surgeon sees me every six months and keeps an eye on the other hip as well, in fact I am due to see him a week tmm. I had 10 infusions of zometa at the start and now also take Bandronat, it is a pain taking it every day, reading some other posts I have noticed that some people take one tablet a month, that sounds a lot better, but when something is working I am loath to ask for a change. Keep well.
Roz xxx

just seen my doc and mentioned my increased bone pain ,she has put me onto femara after being on arimadex for 4 yrs ,i hope its not bone mets but she cant be sure and is very vague when i ask her anything .i have been in tremendous pain for a week now and really am not sure just what to do with myself ! im allergic to most oppiates so stronger pain killers dont work for me .must say my hospital are usually well on the ball with treatments etc ,but as im supposed to also have liver mets have not had bloods taken in over a year and certainly no ct scan in that time also .ive had a dexa scan for osteoporosis and am now on a bone strenghtener for it ,should i go back or wait another 6 months till my next appointment > im having a mammogram today for a suspect area on my right breast .dont like to make too much fuss as others are worse off than me and her clinic is usually full.

aroma - I’m sorry you are having such a rough time, and if I were you I would be demanding an update on my status - scans and bloods. I’m only a year into a secondary dx, so am not so experienced, but I would have thought it very unusual to go a year without monitoring. Please do make a fuss and don’t wait another 6 months. You sound like a lovely considerate person, but you must put yourself first here - it doesn’t matter how busy the clinic is, if your cancer is on the move - and I really hope it isn’t - you need to start treating it now.

Why not take someone with you who can be forceful if it isn’t something you feel you can do yourself? Good luck.

finty x

Hi aroma, please do make a fuss. I hope things improve for you very soon…x

saw my gp yeaterday and he has put me forward for an urgent xray on my hip to check for mets .also got new painrelief, got to wait for mammogram results ,hopefully things will be ok ,got to think posetive ! x

That’s good news aroma, so glad you’re getting better pain relief. If the x-rays are inconclusive, as they often can be when looking for bone mets, ask for a scan to put your mind at ease.