hi i am the ignorant one here. a lot of you seem to have secondary cancers or mets i just learnt that word as well… if lymph glands were clear can you still get secondary cancer. could someone explain to me if have time. sorry for a silly q but i wish to learn more so as not to be worried so much and can be aware… thanks happy sun eve to all.xxxx
It is not a silly question!
Cancer cells travel around in the blood system as well as the lymph system. So, it is possible to have lymph nodes that are apparently clear and still have some risk of secondaries. However clear lymph glands does give you a better chance.
I said “apparently clear” because it is possible to have false negatives. The lymph sampled might not have included cancer cells but there may have been some missed by the collection. Also, if you have chemotherapy before lymph node testing, the results are unreliable.
Sorry if this sounds pessimistic and I really hope you don’t join this club.
I had totally clear lymph glands but unfortunately the cancer had already spread to my liver via the blood stream.
Hi
I too had totally clear lymph glands but 7 years on, I have been dx with it spreading to my bones.
And, I too really hope that you dont join this club.
Please be vigilant with any aches and pains - I was really ignorant about secondaries.
Holeybones…I never knew that if you had chemo first that the test results on your lymph nodes wasn’t reliable…very interesting piece of info…I did have chemo first then clear lymph nodes…maybe they weren’t clear…Funnyface
Oh my goodness, after reading this i am totally freaked out. Although my tumour was bigger than they thought i have always taken great comfort that my sentinel node biopsy was clear. It seems from these postings lymph nodes and whether they are cancerous is not something we can be confident that the cancer has not spread.
I have had lower left back pain since July and have a MRI scan this Fri. I desperately don’t want to join the secondaries ladies lovely as they are. The only hope i hang on too is ‘it wasnt in my lymph nodes’
i read this site for re-assurance but its so ‘real’ at times to and i am scared.
Rx
I had chemotherapy before my surgery and my lymph nodes tested clear. We knew that wasn’t a true reflection of my circumstances, because at outset there was a small tumour in a lymph node in my armpit. Best estimate from the position of the armpit tumour, was that at least two lymph nodes were affected.
The chemotherapy significantly shrunk my breast lump (it nearly disappeared) and the one in my armpit disappeared completely. A good response to chemotherapy meant that lymph nodes tested clear when they weren’t to begin with.
to all
oh my god it has freaked me out i wished i hadn’t asked this question now. i do hope all you ladies are better or getting better now. really i have got to face it i prob never going to be rid of it once you get it however little. still best to know. also the ache i have in my knee may not b old age then. do i ask my GP or wait till i get my mastectomy and recon over with… i am really scared. i am not a hypochondriac but can see me turning into one and my GP will dread seeing me. have a good day if its possible
julie
I think lots of us are like allie4, bc spread through the bloodstream.
hi can you not have blood tests to check or is this a stupid q.
thanks agian
julie
Hi Julie
It may be worth contacting our specialist nurses on our helpline team for further information, advice and support on 0808 800 6000 which is open Mon-Fri 9am-5pm and Sat 9am - 2pm.
Kind Regards
Sam
Moderator
Hi
Really useful info on this thread. My conultant/oncologist don’t tell me any of this stuff. I too thought that clear nodes = no spread.
As for blood tests…I am so confused what it is they can & can’t test for. My SIL had ovarian & said that they gave her blood tests at every check up which she said showed if there was cancer in her blood. I’m not so sure because when I mentioned this to my onc he almost laughed at me & said if we could do that you might not have had to have chemotherapy.
BUT when I had my pre-op asessment the doc said the blood tests showed no spread. WHAT do these blood tests actually show then? My friend was dx with numerous secondaries incl liver but the blood tests for liver function were showing normal.
Also don’t know if anyone else saw Barbara Clark on This Morning a few weeks ago but she said 2 years after dx she was “free of cancer”. How does that work? How have they managed to deduce that if there is not definitive blood test? Also, George Bush had a “blood test for cancer” some months ago - WHAT TEST???
Confused.
Hi to all
I also saw some one on TV saying they had been given the “all clear” 5 years after having treatment for BC, and I don’t understand how this works.
If anyone knows how this is possible I would be interested to know?
Love to you all
Deborahxx
The blood test for ovarian cancer is CA125 which is a tumour marker. It is unusual in that it gives a pretty accurate idea if the cancer is present. There are other tumour markers for other cancers but it can be hit and miss whether they give an accurate result - you get false positives and false negatives. When it was being developed there was great excitement in the cancer research world because it was hoped that one day there would be reliable blood tests for all cancers, which would mean that screening would be cheap and easy and not involve horrible tests like mammograms. Unfortunately other tumour markers aren’t as reliable as CA125 so the diagnostic blood test is still in the future.
Lots of people (including me) don’t agree with the term “free of cancer”, or “cured”. One phrase that is used is “No Evidence of Disease (NED)” which means that all the tests show that you seem to have no cancer remaining, but it doesn’t mean that it might not come back in the future.
I second the moderator’s advice to phone their helpline because their staff know more about the medical stuff than I do!
Silverlady
Thanks for clearing that up - it’s great that there is such a test for ovarian cancer - lets keep hoping that one day it will be possible to screen for all cancers
xx
Hi I’ve had the bc tumour marker CA15-3 taken every 4 weeks since my diagnosis, 2003. There is a ‘normal’ range…the range for anyone who doesn’t have breast cancer but I’ve also been in the normal range although my cancer was still there (I have bone mets) but it just wasn’t active thanks to treatment. Markers don’t work for everyone (and are normally only used for women with secondaries)but if they do work, mine have always been very reliable, they can be so useful and can show whether a treatment’s working or beginning to fail long before any symptoms might appear.
It seems some oncs like to measure tumour markers in the blood regularly, and others never. I imagine it’s more useful to use it to compare an individual’s results from time to time, rather than expect it to be a simple test of normal vs abnormal. I have heard that when you are having successful treatment, your markers actually go up at first, as the cells are breaking up and releasing more of the stuff into your bloodstream, but then later, your markers will go down again. If you had new tumour growth your markers would go up compared to your last result. No wonder you can get false results and some oncs simply don’t bother!
I’ve never had a blood test for them as far as I know.
Jacquie
According to Susan Love (US expert wriiter on breast cancer) about one third of people with no lymph node involvement subsequently develop secondaries, and about two thrids of those with lymph involvment get secondaries. No one can tell for sure who will be in the ‘lucky’ or unlucky’ thirds. Other factors such as er, pr and her2 status and grade are also indicators of who may get a recurrence, but no one can ever tell for sure. It is possible to say who may be ‘high risk’ and who ‘low risk’ but there are no guarantees with cancer.
Tumour markers are not partiuclarly reliable for everyone. My tumour markers have been normal even though I have active and incurable cancer in my chest wall and supraclavicular nodes.
After primary treatment I think you just have to be sensibly aware of any unusual aches and pains and insist on having them chceked out if they continue. Secondary breast cancer is not curable and generally there’s no advantage in ‘hunting out’ secondaries until there are symptoms. (This may change in the future as new treatments are developed.)
As to Barbara Clark…well no one can say they are ‘free of cancer’. I am pleased she has no evidence of disease at the moment.
Jane
Hi Julie
I was dx with primary bc in 1993 and the lymph glands were clear. unfortunately in 2006 I discovered that I had bone mets in my sternum and pelvis. The Oncologist told me that a stray cell had probably broken away from the tumour even before the mastectomy and lain dormant for all those years. I had the tumour marker test last year and like Belinda my results were in the normal range and so he has not repeated it. The only advice I would offer is to be aware of any pain which does not go after 2/3 weeks and get it checked out.
Barbara
This is definately a scary thread. About to have my last chemo tomorrow. The centre I am being treated at does not believe in pre chemo bone scans, ct scans etc. I have said that if any lymph glands come back positive following surgery I will insist on further investigations but I know any pain or anything in the future - its going to be in my mind if it could be secondaries. So many illnesses are you get your treatment and thats it - but this little beastie is not like that - its a scary old future - but I spose we need to get on with our lives the best we can as none of us know what the future brings - we could get knocked down by a bus!!!
Fiona
xx