With regards to the blood test that I mentioned (CA15-3), this is a tumour marker (CA - Cancer Antigen - an antigen is a substance that stimulates your body's defense system) which can be taken at regular intervals to monitor one’s cancer or the lack thereof once treatment has finished. Some hospitals seem to run the CA15-3 as standard for every breast cancer patient but it seems that we are only made aware of these tests via the private sector, suggesting NHS costing issues. I have gone from wanting to know very little about my cancer to wanting to know as much as possible! I feel the need to keep myself informed as, quite frankly, I think that it is shocking that tests like this exist and are not offered as standard practice. I will be asking my GP about this in the future.
my friend is taking part in clinical trials at Christies Hospital where they take her blood each month to see if there is an advance warning of cancer developing. She had op, chemo, rads, herceptin and is on tamoxifen ...... it would be good if this worked for everyone...and maybe this will be rolled out once they have conclusive evidence.
Hi ladies I think we are all different in what we want or need to know. For example the tumour markers. If you had the test done and they said its 32 for example, you would need a lot of extra info to understand what 32 means and if that's 'good, normal or bad news'. If next time they said it was up to 34 but don't worry its still fine, would you be able to ignore a rise or would it scare you more? People who have never had cancer still have tumour markers. I was told this when I was moaning that I wanted mine to be zero. What I'm trying to explain is that knowing the number on that one day isn't going to necesarily help you feel reassured. It might actually make you wonder even more. They are not like ct scans or x rays that actually spot bc areas, they are figures that drs interpret but all seem to agree that they become more reliable for secondaries and higher numbers. I am still being tracked because I went on a research trial that was trying to improve future survival rates by comparing treatments, a computer picked my treatment rather than the onc. So they will follow me until I kick the bucket, whatever causes that. You still have to be careful crossing roads! I have seen local friends be signed off and know how hard it is for many people to stop having appointments but in another way it stopped them thinking about when their next check was too and that might have helped them move on. I am not really the best person to say stay calm as I really didn't like being told I couldn't have annual mammos after year 5. When they tried to stop my hormone tablets after 5 years I nagged and I am going beyond that. Personally I think they will be routinely extending the number of years when the research comes out. Its a long wait to hear what difference it makes if you take them for 10 years rather than 5. MM I was a year older than you when I was dx and a big family. I understand. Lily x
Thanks Lily200 your message makes sense. I guess I am just scared and feel like I am now 'flying alone.' My last chemo was Jan and then I had 15 rads and am now on Tamoxifen. Prior to that had mastecomy with full node clearance. Just scared and it is unsettling when you read about others in different areas who are having stringent bloods tests and I'm not and I do worry whether it is down to costs. I get signed off after next visit to Oncologist and then it will just be a mammogram once a year and that's it. But when I go in June I will ask about the blood tests. Glad you explained about the mammogram as I was wondering how they did that if there is no boob.
I just want to be able to forget about it but I think it will be a long time before that happens, if ever but at the moment there is a shadow. I'm only 47 so have to learn to live again. I think it is still early days and I am in the adjustment phase. You get used to the comfort blanket of hospital and then when it all stops it's scary.
Thanks for taking the time to post and to everyone else too.
Hi ladies. Ann I think a consultant could swing the argument either way on this, so they made need careful questionning. As I understand it, it is unreliable in the low numbers but over 100 can be quite significant for some but not all people. My onc used it as an overall testing. In our unit everyone gets a ct, full body bone scan and full profile blood tests (about 16 in total from memory)to get an overall good a picture as possible. I heard this was to spot ladies who are secondary on dx better. He was aiming for 90% survival rate and was annoyed we were only high 80s still. A gem of a doc who went beyond the brief and thought of all of us as individuals, sadly retired now. On my 2 year check despite no signs he sent me for another full set of ct, bone scan, dexa, everything as a routine check. I've had my tumour markers checked before every single appointment and still do. My friends on here do not have them in their area. Postcode lottery I fear. I would be interested to hear your onc's response. Ask him when he uses the Ca 15-3 test for bc. Good luck.
Mysterymouse most people on here will not be offered them so it isn't necessarily anything to worry about. Others have tests I probably haven't had. I was worried when they stopped me from having yearly mammos as I am now only allowed them every 2 years. That happens everywhere I believe. I had a lumpectomy but friends who have had masectomiss tell me they just scan the unaffected side. I have both sides checked each time. If you have an oncologist, then you must have had chemo and that mops up any stray cells. Rads are actually more effective then chemo but only work in the area the beam hits so the boob gets rads and chemo, or is removed, depending on your treatment. I had a lumpectomy, chemo and then 15 rads, followed by hormone tablets. All of this depends on your dx. In the case of new lumps/areas, I was told that in most cases the patient will ask to see the onc because they have a found a change in an area rather then the doc telling the patient. So you need to make yourself very aware of what feels normal to you and start checking regularly. IF you were unlucky and had a recurrence, then I have read that it is not as critical that you find it and get treated very quickly , secondaries are different and timing//treatments/ideas change. It goes without saying it would be as scary as we all experienced with primary bc, possibly more so I imagine. I hope I don't find out that one. It is always a shadow but as time goes by I found it didn't become my waking thought each morning. You have to work your way of thinking round, in your own time. You can look at all the lovely and ordinary things that happen each day and what you have, or you can look backwards. Losing friends to bc rattled my cage to think about how cross they would be if I wasting precious time instead of living it. Time will help, Promise. Lily xxx
Am very concerned that I haven't been offered any tumour blood markers at all. Bascially I will have a yearly check and mammogram and that is it. However, from what I understand other ladies in different areas are having regular blood tests. I had spread to my lymph nodes as well so had full clearance. While I am happy to have a yearly mammogram (not even sure how that is possible when you have had a mastectomy) but if any nasty cells had floated off and had started growing elsewhere a mammogram obviously wouldn't detect those. Not seeing my oncologist until June.
I understand that the blood tests may not be reliable, as Lilly200 says, under a score of 100 but they would be a indicator. As if anything did start and no indicator, and it didn't start in the breast again, how would I be alerted? Very concerned that this lack of testing may just be down to financial reasons.
Trying very hard to put this whole cancer thing behind me and live my live but it's like a shadow that's always there! 😞 Just woud like a safety net for the future.
Not really sure what to do!
the bc tumour marker test is Ca 15-3 if you want to look it up. I have been having this test as an NHS patient for 7 years now. There have been many discussions on here as to why some consultants, like in my area give full tests to all patients every time including Ca 15-3. Whereas in some areas they don't offer it and also try to put people off by saying it can give false results, is unreliable, etc. Both are true as its unreliable under about a score of 100. However some ladies on here will tell you it has saved their bacon by very accurately charting when treatment was failing and needed to change. Personally I think its about how much money they spend on patients in that area. Its not as quick a test as some others. I am just being monitored and get the tumour marker test every time (primary bc no nodes) as do all my local friends. I also have full liver profile, bone profile, etc tests every time. I found it really encouraging when told mine went as low as someone who had never had cancer could score. Its all up to the consultant but maybe they will let you have it if you ask and sound like its important to you. One they forgot to write it on mine so I just added it myself and he just laughed when I told him.
Wishing you all much luck with your treatment Lily xxx
Just wondering if anyone has had tumour marker blood tests after treatment finished? My only reason for asking is that when my husband had cancer years back he had regular blood tests after treatment ended to check the tumour levels. I haven't had this offered and just wondered if this is something that is not normally offered for breast cancer? My last chemo was Jan followed by rads and not seeing oncologist again until June.
Thanks in advance!