Markers and How do They Know Treatment is Working

Hi Rachart,

I am not sure that is right re markers, the CA125 marker is an indicator. Mine dropped from 19 post sugery (it was 167 pre surgery) to 8 after my first chemo. My oncologist immediately said it appeard chemo was working. Admittedly, it doesn't show them what the nodes are like. I had a mid treatment scan which showed my nodes had gone from 1.6cm to 8mm and was then told I had had a very good response to treatment. I can't answer whether chemo is right for you, when are you seeing your consultant again? I hope you get some proper answers x

Thanks for that.  I’ve been though all my blood test results and it doesn’t appear to have been done.  Would there be another name for it?

You are joking?! I don't believe there is but maybe open a chat and ask a nurse. She may tell you that I am talking absolute rubbish but I am only going by what I have been told by my CNS and my consultant. Good luck x

I spent this morning explaining the differences between staging and grading to the nurse - so don’t hold out much hope there!  I think I need to find a second opinion elsewhere - any suggestions welcome.

I was looking at the menu for this site and came across, ask an expert. I’m not sure how you use it but it could be a start. I really hope you find the information you need to make a confident decision you are comfortable with. 

Hi Rachart

It can be confusing and it is a good question to ask.

During chemo they will regularly do blood tests and these will show how you are doing generally. They can pick up for instance how well your kidneys are functioning. They should also monitor your CA125 levels. CA125 does not give the whole picture but it is a good indicator. They should do the level before chemo and I had mine checked with each cycle. If it goes up and down a bit but remains at 35 or under this means there is no active cancer. If the levels rise dramatically(or fall dramatically) then this is a sign that something is potentially going on and more investigation is needed. Possibly scans. Levels however can change for reasons other than cancer- infection can cause it. 

Your chemo sounds as if it is adjuvant so its purpose is to mop up and cancer cells that have been left behind- and as you say they can be too small to be seen on scans. So the cancer was taken out with the surgery and this is now to deal with anything left behind and to reduce the risks of recurrence. With a grade 3 cancer and evidence of the nodes being reached and LVSI would suggest that the cancer was trying to spread and the chemo you are due to have is trying to stop that. 

At my hospital they do not do follow up scans unless there are concerning symptoms. 

If any tiny cells have been left behind and you do not go for the chemo, then in time, they could potentially set up elsewhere. With a grade 3 cancer- this can be more likely as the cells are already behaving aggressively. 

If the cancer did come back then there would likely be different ways it could be picked up. 

- blood tests showing raised tumour marker.

-blood tests showing something is generally not right- eg; bleeding could cause haemoglobin levels to drop

-After treatment they are likely to do regular checks (mine are every 12 weeks for 2 years) - during these checks they check your abdomen to feel for any lumps and bumps, and feel for swollen lymph nodes. The also use a speculum to do a visual check inside your vagina and then an internal exam to feel for any lumps etc. This is because it can come back in the area where your womb was and where the vaginal cuff is. 

Symptoms to look out for include-

Pain, bleeding, change in bowel/bladder habits, discharge, loss of weight without trying, general fatigue and feeling out of sorts, cough/breathlessness, lumps, bloating etc They will give you a full list but these are the main ones. Basically if something doesn't feel right - you get checked. 

I do understand what you mean about knowing when the chemo is working and my CNS said similar but in the same way that you had symptoms before diagnosis that made you feel something wasn't right , you would likely to have symptoms post treatment, that would make you feel something wasn't right. The physical exams every 12 weeks are meant to check you over and physically see if there are any changes to be concerned about. So for instance if there was an early recurrence at the top of your vagina- they may visually be able to see it before it started causing a symptom such as bleeding.  The idea is to catch these quickly to be able to offer treatment before they get a chance to cause more problems. 

Hope this helps. With the chemo, you are doing everything possible to avoid a recurrence- that is what my consultant said to me.  

Jane

Jane, you've yet again explained it brilliantly and said things I was unaware of - I thought everyone got mid and end of treatment scans. Also I thought CA125 was the definitive way of knowing if chemo is working. All very informative x

Hi Rachart,

Jane has explained it perfectly as you can see.  Let me know how you get on, it's really good you're thinking of a second opinion but I have no idea how you go about it. I might have a Google. I'll let you know if I find anything x

Some people do get mid treatment and end of treatment scans but it can vary between hospitals and also depending on the reason that the chemo is being given. So it seems with adjuvant then it is not so common. If the chemo is to reduce the size of a tumour or where there has been further spread then they may do a scan to see what effect the chemo has had and to look into further treatment. 

CA125 going down and being under 35 is a sign of no active cancer but on its own can not rule it out in endometrial cancer. From what my consultant told me, it is more for ovarian cancer but in endometrial cancer It is a useful marker and they are looking for big changes up or down. 

Rachart 

Getting a second opinion | Macmillan Cancer Support This might help