HOW DO WE KNOW IF IT HAS RETURNED?

I know this might seem a ridiculous question, but having read a lot of posts on this forum from ladies at different stages of treatments I have often wondered how do we know if the cancer has come back or not, espicially if we are feeling well.

I finished my Chemo and Rads in 2008. Since then I have had my yearly Mammogram - two up to now and both have been clear - and I am now on Aromasin since March having been on Tamoxifen before then from August 2008 to March 2010.

So how do we know? I feel well, but then I felt well when I discovered my lump. I haven’t had or been offered any scans.

I know I should be grateful for small mercies and just get on with my life but I can’t help but wonder.

Thanks for reading my ramblings.

Love and good health XXXXXXXXXXXXX

I’m not the best person to answer this but I will try.If it returns as a recurrence in the breast or region then it will manifest as a lump which will either be detected in your regular mammogram or by you or a doc doing manual examination.You are having an annual check up but if you find a lump then go to your bcn or gp and get an appt at clinic.
If,however,it comes back as mets it is more complicated because scans wont detect very tiny mets.They are usually found when you have had symptoms for longer than about 3 weeks which dont get better with conventional treatments.These can be a cough,pain in liver region or in bones[usually spine,long bones,sternum]or headaches,dizziness,persistent nausea etc.All these things probably have benign causes but should be checked after 3 weeks if you are worried.
The short answer is,we dont know-we will find out soon enough.You have 2 years under your belt-Congratulations :slight_smile:
Stay well,be vigilant,try not to worry.
Love
Valx

I think about this too sometimes,I suppose if we are feeling well we have to assume that all is well.I was told that if you have a worrying symptom for more than 2 weeks then should get it checked.Also that too many scans can be harmful( not sure if that’s really down to cost though),and that it wouldn’t make any difference to the treatment or outcome if secondary’s were found when you had symptoms or through regular scans.

Best wishes Mel xx

I think the short answer is you can’t know for sure until symptoms are quite advanced - even then sometimes there is no warning. I know one of the posters here had a spontaneous hip fracture from bone mets with no warning at all. Regular scans will pick up tumours but not micro-tumours, but will also pick up lots of false positives that will need further investigation, so further scans, and further undesirable radiation exposure. For most people I think the system works pretty well, as long as you are seen quickly when you do have a concern.

I know some of the secondary ladies here have their tumour markers taken regularly to assess cancer activity levels - I haven’t been offered this, maybe it isn’t appropriate for small bone mets - and I know some oncs don’t seem to like using this tool.

I think the only thing you can do is know what symptoms to look out for and be vigilant - but try not to worry too much.

finty xx

Hi there everyone and I have just finished my chemo and two days into the Tamoxifen, and I know how you feel with the uncertainty. In fact I asked this question of the nursing team on this site and they confirmed there is no clear way of knowing - we just have to be vigilant.

I found it particularly difficult that lots of friends and family expected me to have tests which would give me “the all clear” and in fact there’s no such thing. So the answer I got was “its ok not to have all the answers, there is no regular definitive test” so just stay vigilant and try to get the risk of recurrence in perspective and dont let it run your life.

love to everyone, stay vigilant, but positive and lets hope we all do ok with our progress.

much love Carol x

I think this is a very relevant post- - I know it is something that has given me some pause for thought

I was picked up on a routine screening 2 years ago, when I was feeling as fit as a flea. I had no lump or other symptoms but was still found to be Stage 3 Grade 3.

After all the usual jolly treatment, I again feel really well again. I am not a particularly anxious type of person - I have had minimal contact with my BCN post surgery and I really resent having to contact to my GP to renew my prescription every month… but I do have several arthritic joints and have wondered how one knows what is arthritic pain and what is something more sinister?

Maybe arthritic pain comes and goes, but the sinister kind is probably constant. It’s something I’m going to have to read up on.

I think there is a bit of a pattern to arthritic pain - after you’ve over done the exercise a bit, or been sitting too long - those sorts of things, that wouldn’t apply to bone mets.

I think the reality is that knowing earlier doesn’t really help in the long run as there are limited numbers of possible treatments - eg I could find out tomorrow at a very early stage of secondaries, and then with treatment live say 10 years, or find out in 5 years at a later stage and live for a further 5 years - the total is the same. Personally I am not in a hurry to find out (a real head in the sand approach to life!) so will go with my doctors and not insist on scans unless worrying symptoms appear and persist over time.
best wished to all
Sarah

You are absolutely right Sarah and that is why I [with tnbc]refuse all MRI or CT scans though I would have a bone scan if I had symptoms.

That’s interesting, Sarah. So, is it not the case, as it is with primaries, that the sooner secondaries are caught, the better?

I have pain in my shoulder, neck and one hip. I had it to some extent before dx and have assumed that it is an age thing, although it has got worse since, probably due to low oestrogen. I did have a scan on my shoulder before this bc thing reared its ugly head and was told it was just wear and tear. I also have a slight discomfort at the bottom of my ribs, around the liver.

I now have a problem with my big toenail, just one. I have a ridge across it and it feels as if the nail is being pulled off at the tip and is quite sore, although looks ok. I am not sure if I damaged it at some point and can’t remember - very likely, as I can’t remember much these days - or whether it is a symptom of something else. I can’t find anything on the internet that matches.

MostonMauler - I started a similar thread a while ago, when I was wondering how we would know if symptoms were due to low oestrogen or not.

As Alan Bennett said, cancer is a licence for hypochondria:-)

Ann x

bone secondaries dont really get treated per se by chemo more likely with bone strengthening medication and pain killers so if its bone mets your worried about not knowing wouldnt decrease your life expectancy.

at a conference i was at recently they even went as far as saying that bone mets were not life threatening themselves and only became so if the cancer was actually in the bone marrow rather than the bone.

Lx

Most others I know of with bone mets have a much more pro-active treatment than bisphosphonates (bone strengtheners) only…if only to help reduce the cancer spreading through activity to other organs.
I was diagnosed (I’m the person mentioned earlier in this thread with the spontaneous hip fracture) seven years ago and have never been told this is not a terminal condition. I was recently told it was thought I probably didn’t, much to my surprise, have marrow involvement but this has changed nothing. Treatable yes, perhaps for a while but curable? No, although an elderly patient may die of something else or old age itself. Some lucky ones (I include myself) can live with bone mets for many years but I have lost many friends to bone mets. They had no other organ involvement. I like to keep a positive and upbeat outlook and I take, need no pain killers but I feel I have to point out bone mets are stage 4 cancer, not a stage 3 and a half. I had 5 years of hormonal treatment and I’m now on chemo, Xeloda (Capecitabine) which has been a very effective chemo and has kept me in remission for 2 years now. Hormonals also kept me in remission for most of the five years I was taking them. I would love not to have a terminal cancer but I have.

I had severe back pain which my oncologist suspected might be bone mets. He ordered blood tests and a bone scan. The bone scan came back showing ‘hot-spots’ but the blood tests didn’t show ‘cancer markers’. He then ordered x-rays and an MRI which showed spine damage but no evidence of mets. Throughout the tests the oncologist was positive and doubted it was mets because of the blood test results. I have no idea what blood tests can indicate but obviously alone they are not infallible because he ordered those further tests. If anyone knows about ‘cancer markers’ in the blood I would be interested to know.

AlexG

These are the tests, markers I’ve had taken at first every 4 and now every 3 weeks.
labtestsonline.org.uk/understanding/analytes/ca15_3/glance.html
At the end of my 3 weekly chemo cycle.
Finty, I believe these markers have helped me stay so well. Have helped my mets stay within the bones. My markers are very reliable, although not everyone’s are and I’ve been put onto another treatment when my current treatment has shown signs of failing…by a small number of consistent rising marker readings. Long before, I believe, I might have any symptoms.
I haven’t raced through treatments because of this, most of my treatments have worked for years at a time, the exception being Exemestane.
I don’t think it matters whether you have many or few mets as any activity will be picked up. And when there is no activity you have peace of mind…until the next time…I do get anxious each time and I’ve been having these readings since 2003! I would not want to stop having markers taken though, many Oncs have a wait and see if you have any further symptoms, pain approach once you are diagnosed with mets. I’m so grateful my team are so pro-active. As well as the markers I’ve always had electrolytes, bilirubin and other readings taken at the same time. I can’t say I’m not well monitored although I know this approach would not suit all with mets.

Hi Belinda - I’m learning a lot today! I had never heard any mention of whether the cancer is in the marrow before, and didn’t realise it was significant - I will now investigate. My onc seems to be in the wait and see category, but I like the idea of monitoring markers and as I have bloods done every three weeks for my IV Avastin and Zometa, it wouldn’t be any extra trouble to me - just expense obviously.

Regarding bone mets possibly not being terminal - I get mixed messages. I am fortunate (relatively!) to have only one smallish bone met. At dx my main onc was very reassuring, she didn’t seem overly concerned about the bone met (at that point is was suspected, not confirmed) and told me that people can now live for many years with bone mets, and that I could well live to a good age and long enough to die of something else - I am 51 so I was reassured by that, having assumed the game was up. The onc I see for RT seems much more pessimistic and although she hasn’t said anything specific, when I discuss treatment options with her (I was trying to persuade her it was worth giving the bone met enough rads to obliterate it, and I would then be NED with a long shot at a long remission or even cure) her attitude was that’s not really what we do with bone mets, the implication being because it’s pointless. In fact we went ahead anyway - so we shall see! She did say that some bc bone mets will always stay in the bones and not progress to the organs - but I was too afraid to ask for the stats at the time. Someone else on here said it was about 14% but I have no idea if that is correct - lower than I was hoping!

So I guess if we are in that lucky 14% and the bisphosphates and hormone therapies do their job - maybe we could outlive our cancer? Plus as everyone without cancer constantly tells us - they’re coming up with new treatments all the time!

finty xx

Thanks, Belinda. The website you posted was really useful.

AlexG

Thanks for all your comments.

Even before I was diagnosed I had the odd back ache and hip ache now anf again, but it wasn’t/isn’t constant.

The trouble is I am now on Aromasin (Exemestane) and one of the side effects is aching bones. But I suppose aching bones and painful bones are two different things.

I will try and be a bit more positive and grateful for small mercies, but sometimes it is so hard to be positive.

Love to you all and good health.

XXXXXXXXXXXXXXx

Hi MM

When you get aches and pains from the se’s it is very worrying and hard to separate out from non se’s. Maybe it would help if you kept a record of when you get the symptoms to see if there is a pattern - it might put your mind at ease.

finty xxx

Hi again Finty, it may have been one of my posts which mentioned the ‘‘14% of those bone mets…’’ as this is the figure I was told by my Onc.
If anyone is overly concerned about the possibility of bone mets it makes sense, to me, to know sooner rather than later. If only to start bisphosphonates to help reduce the risk of spinal cord compression, fracture or hypercalcemia alongside other treatments that could help contain or slow the cancer from spreading elsewhere.
That said the only pains I ever experienced happened during the time I was on Arimidex and it was all due to the side effects from the tablets. Aromatase inhibitors can cause so many aches and pains.
x