Hi everyone, Im so glad I've come across this forum. There are so many inspirational and positive stories.
I'm in the UK and very new to all this and started on Leterozole and Ibrance 2 weeks ago. Spread is to spine liver lungs and lymph nodes in chest and neck.
I have a few questions, but the first one is what are the tumer markers everyone talks about, is it info they get from bloods and what should I be asking? Is this something used more in America?
Also Ive had a lot of pain in my breastbone/neck/left shoulder - could this be a side effect. Im so worried its mets but previously (recently) had an MRI so wouldnt that have shown up?
Doing ok on Ibrance - no tummy troubles so far - but the nodes in my neck seem to have gotten bigger. Did anyone else find this?
Sorry for all the questions, its all so new and scary. Reading on here about people being treated for 11 years makes my heart burst with joy.
Thanks for reading.
Take care everyone.
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Mindysooty
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Hello and welcome to group! I’m not an expert so I will just share my limited knowledge. Tumor markers are used to check if the medications prescribed are working or not. They can also be used to see if there is progression. A lot of oncologists do not rely on tumor markers but they give more importance to scan results. For breast cancer, the tumor markers commonly used are CA15-3, CA27-29 and CEA. Hope this bit of information helps.
Hello Mindysooty ! I am in the U.K., and also on ibrance /Letrozole , for over 18 months, and my onc requests the CA 15-3 tumour marker ( it is done at the same time as my monthly blood test , but the good news is that nothing extra is required ! ) But for me , the marker is not a reliable source of information , as it never really changes (18 to 22 , which is regarded as “normal “ levels , even when I had bone mets 18 months ago !). For some people , if markers rise significantly , it indicates that a change of treatment may be required, but once again , there are other factors that can cause markers to go up . So , many oncs don’t rely on them , relying heavily on ct and other scans and also on how the patient feels eg ., increased pain etc . I hope this helps , but you will find this site is a great source of extra information , as we often come out of our meetings with the onc , wishing we had asked something else ( in the limited time ) . Wishing you luck with your treatment x
I am same boat as you. Didnt know much of that.... I was diagnosed w recurrences on January and my makers were 39 on January of this year and after radiation and letrozole my markers went down to 31.
I have my markers checked every month but apparently not all oncologists use them
As far as I understand they are an indicator that shows if treatment is working but not in every case
My own experience is that when mine slowly crept up nothing amiss was found for about six months then a lesion increased in size which explained it...so for me the rise in markers was a signal that something was wrong
Thanks so much for your help. Any info I can gather is so helpful. I darent google as some really scary stuff pops up even when you're looking for positive stuff. Do they get it from bloods?
Ah thankyou so much. Im back at hospital tomoz for first tests since starting treatment so this will help me a lot. Really appreciate your advice. I used to google everything but saw something that really freaked me out so never again. Ahh love the pets names. Yeah theyre part of the family arent they. Unconditional love from them 💗.
I always ask for a copy of my bloods each month. Means I can see what my markers are doing. I find the oncologist just tells me they are good. They naturally rise and fall and other factors can affect them.
Same , Julie ... I have my bloods done monthly in the chemo ward at my local hospital , and within 10 mins of having my bloods taken , the lovely chemo nurses there give me a print -out (looks a bit like a shopping receipt!) of my bloods, and if my white blood cells and neutrophyls etc are ok , I am then given my next month’s supply of Ibrance/Letrozole , there and then from the hospital’s pharmacy .
However , my tumour marker is not available immediately from there , so I have to ring up in a few days if I want to know what the tumour marker is ( though, so far , mine has not changed and is not a reliable indicator for me ) . I too like to know the details ! x
Every 4th Tuesday I drive an hour East to the first hospital to have my bloods done and then I drive for an hour north to go to work. On the following Thursday I drive an hour and a half if I've had to work at the office to the 2nd hospital to get the results and my injections/medication. Different hospitals but in the same group.
I can't have my bloods done locally because my surgery isn't in the group of the hospital's I'm treated at and they have no mechanism for getting the results between the groups! They will only do bloods on the same day in an emergency and then there is a 4 hour wait, but I do get all the results including tumour markers 🙂
My tumour markers have been at the bottom of the normal range since diagnosis, they rose in the first months of treatment but stayed within normal ranges. I like to see my blood results too 🙂
Oh that sounds a faff for you. But then what choice is there.
Im a bit worried about my throat lymph nodes as they seem to be getting bigger by the day. At the minute its a really uncomfortable feeling like theyre pressing on my throat and making me wheeze more. Been to London to take my daughter to autism friendly viewing of Lion King. Its been amazing but Ive definitely been struggling more with breathlessness especially in tube stations/steps. Will have to ask about it tomorrow. X
That does sound uncomfortable. You also sound as though you've been pushing yourself. You are doing the right thing talking to your oncologist or nurse about your concerns, but try not to worry, easier said than done, I know.
I've had to learn to pace myself and I've had a really hard time accepting that I can't do what I used to, despite feeling well. When I do too much or don't listen to my body I struggle and every ache and pain is magnified 10 fold which can be frightening.
I totally agree. Ive had a fantastic response for which Im really grateful. Its early days and I do still have times when I cry and wonder why me. I have a severely autistic daughter which is an added worry but I found this site via Facebook and the minute I started reading I knew it was for me. So much positivity and focus on living years on treatment is just what I needed.
Xxx and I love the warrior reference, so true. Absolute strength and true grit. Xx
Thanks for all the help everyone. I have tried to slow down , my daughter summed it up saying - thing with you mum is, you dont know how to look after yourself. I think its true of a lot of us ladies, we spend so much time looking after everyone else dont we. I am trying now though, I let people look after me a bit more.
I asked the same thing. My onc. said that tumor markers are one of many things they look at relating to the disease and treatment. I do know that markers can vary based on other things that have nothing to do with the cancer and it's normal that they vary. Mine (15-3) are not real high - slightly over the standard range - and do vary from blood test to blood test. My onc. doesn't pay much attention to them, and so neither do I. She relies on bone scan and CT results to see actual tumor size, progression (there hasn't been any in the 16 months I've been on Ibrance/letrozole). You'll find a lot of information and support here. I, too, love hearing stories of women doing well on treatment for years and years. We have to remember that treatment is so much better and more advanced than it was years ago.
Welcome to this site and sorry that you are having to deal with this with the rest of us. Tumor markers are used as one way that may indicate progression but is not used alone. However it may be helpful in some cases. Did you say you have an appointment today ? I hope saw as it is concerning that you are having some shortness of breath and pain in your chest and neck with lymph nodes involved in that area. They may be pressing on other things causing pain but there is something called superior vena cava syndrome when there is pressure on the vena cava which is a main vain causing difficulties with breathing. This needs to be addressed to prevent problems. If you don’t have an appointment today , you should be seen I try not to give medical advice here as it us not that kind of venue but your symptoms are concerning. Wishing you good news today and always. I have been on ibrance and letrazole for 5 months with excellent results so far.hoping the same for you. This is a great place for support.
Oh thankyou so much. Yes I have an appointment today so Ill certainly be asking about that. Its a horrid pressure type feeling I have in my chest and throat which feels worse than ever today. I feel generally ok apart from that so if I could get that sorted I might be ok. Ill let you know what they say. Thanks again x
Just had my appointment. I mentioned the superior vena cava syndrome and having done all obs they said theres nothing to suggest this but will send me for a scan to make sure. To be honest, I beg to differ - there is something to suggest it - all the symptoms Ive described without ever having heard of the condition. I sometimes feel the medics are too quick to dismiss what we're saying. But I dont want to be a negative Nora, theyre doing a scan to check so Im glad about that. Bloods are good too wbc is fine, no concerns. I mentioned tumer markers and she said they dont use them. I had a list a mile long to ask so didnt press it but will keep it in mind moving forward as I dont feel I fully understand everything yet.
Its great having this site to turn to, it feels like we can all give each other strength courage and support.
Take care and I wish you all continued good luck with your treatments.
Good luck with your scan. I hope it finds something that explains your symptoms. If it doesn’t and they don’t do something, either more tests or a solution, ask for a second opinion. One of the things we have all found is that we definitely have to be our own advocate!
Welcome to the group from Oregon! I’m sorry you are here, but like everyone says, it’s a wonderful group of women warriors who are very willing to lend an ear in support! Elaine
Thanks Elaine. Good idea to ask for second opinion. The breathlessness is the only thing holding me back. I love walking and at the minute I cant get far at all. I do hope there's a solution. Already tried steroids which made no difference so we'll see. My body might settle into the meds and nodes may go down on their own again, you never know. You take care now over in Oregon. X
Hi There i am in Canada and not sure what they call markers.. Was also wondering .. I was told my has stablized ..esp my lungs which is good ...and bones are about the same as it was back 9 months when i was diagoinsed with mets.. on Ibrance 100mg daily for 21 days and lertroizle every day..and Zometa injection monthly. So far i am still going ..but some pain in hips and back and other parts ..but its tolerable so far..taking pain meds as needed and cannabis oil. No fevers or nausea. ..when i am tired i just get lots off rest..
Hi, so glads the mets have stabilized. Long may it continue for you.
Most of my pain comes from back/hip but most of the time its maybe 2 or 3 on 1-10 scale. Sometimes spikes to 8 but same here just take pain meds when needed. I do sometimes get a horrible pain radiating around neck chest and into my shoulder. When that comes it starts at 3 or 4 and goes to about 9. Pain killers barely touch it. Usually lasts about 3-4 hours then goes. No one can explain it so far - maybe the scan Im about to have will reveal something. Im just into my 3rd week of Ibrance - doing ok so far. Up n down days but nothing too bad. Teeny slight bit of nausea, a few headaches n tiredness . Main issue is the breathing as I said before but fingers crossed scan will help.
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