3 monthly follow ups

Dear Jenny

I am one of the support line nurse and follow up can understandably be very confusing. Usually scans are only performed if there is a problem. In the past women very often had a blood test as part of their follow up but as a result of a trial that showed there was no advantage in starting treatment as soon as the Ca125 went up as opposed to starting treatment if you experience symptoms, sometimes this is not done on a regular basis However everyone is different and some people may feel more stressed by not having a blood test to keep an eye on things. Have a word with your specialist nurse about what you feel is best for you and if you would like to discuss this further please feel free to give us a ring at the Ovacome office 08453710554

thankyou so much feel easier after reading your reply Jenny

thankyou so much Jenny

Hi Jenny!

At our local hospital support group we had the specialists come and explain that CA125 tests were available on request but most recurrences were picked up by examination, symptoms recurring or a scan. There seems to be a growing weight of evidence that CA125 blood tests worry more women than reassure in their follow up appointments. If your team are telling you you are well and you are feeling better and getting back to some normality after your chemo, then you can probably trust in your own instincts and the experience of your medical team.

All the best,

Wendy xx

Hi Wendy,

I have to say, I really dislike the idea of not watching your CA125. It is like sticking your head in the sand (avoiding stress by refusing to acknowledge what is happening). If your CA125 is a good measure for you, and you will know after the first occurrence and treatment and scans if it is, then why deny looking at part of the picture? I do agree that treating numbers has been proved as not the way to go, but knowing it is on the rise helps you keep aware and if it is low, then you know you can relax a little. When I went for my second opinion on Barts, I had written down all my CA125's with dates and where they were in my pre, during and post treatment cycles. The professor saw it, grabbed it out of my hand and said - I like people like you - you make my life easy. If you have a cancer that secretes then why not regularly listen to what it is saying? As I say, not necessarily treat but at least it will prepare you by knowing how fast it is rising and as your disease goes on it will help you know what is coming when.

I think only people who have the disease and have not been able put it to bed for a long time know how important it is to us to know our CA125.

Love Lizzie

X

Dear Jenny

Everything you say reflects my own experience. I had the same diagnosis and treatment as you and will have my first 3-month check up in March. I was told exactly the same thing about the CO125 blood test. I asked if I could have one as it would make me feel more reassured and the hospital gave me a blood sample request form which I'll take to my GP before I go for my 3-month check up. I was made to understand a rising CO125 blood test doesn't mean you need treatment at that particular moment in time. I felt it would be more reassuring to have one than not as it's one of the symptoms you can be sure about - the others are so vague to monitor.

Well done you having 3 clear 3-month reviews. Long may it continue!

Take care. Big hugs. xxx Annie

Thankyou for your replys.I will do what Annie has sujested and request a blood test before next check up thankyou.If only for my own reasurance but I do understand the reason now why not automatically taken. Nice to know your all their to compare notes take care Jennyxxx

Hi Jenny

I had exactly the same diagnosis and treatment as you. I fifnished treatment in July and have had 1 follow up. I was completely shocked to discover that I wouldn't have scans or blood tests and so requested a blood test. The oncologist asked what i wanted him to do with it the results? as CA125 levels are not the only marker they look at. I pointed out that I agreed but assumedly if my CA125 levels was over 500 for the sake of argument, he would act? He agreed that it would mean further investigation - so I got my blood test! It is hard to feel that you continually have to battle for these things - but like you, having a blood test is more reassuring to me. I'm not going to panic if the result isn't that high but I didn't know I had OC last time and as it is notoriously hard to diagnose, a blood test seems a reasonable start to me!

good luck and best wishes

Eleni x

yes absolutely agree its some indication of recovery to have a reading like you say so hard to diagnose, I was seeing my doctor for a year before mine was. How simple to take a blood test I had them for every thing else, untill finally went to another doctor with my symtoms.Would they be the same IF it came back? only a blood test can give us some idea. best wishes and good luck to you to. x

Hi Jenny,

I have always had a CA 125 blood test, Before diagnosis my protein level was reaching the thousands, after surgery it had dropped to 56. thius is a massive drop and exellent news. It continued to drop with each cyle of chemo and now 9 months after my last chemo it is a 9.

Because this is a good marker for me and others like me a CA 125 blood test will usually be requested before each 12 weekly check up. In my case had the test been done pre-cancer my cancer would have been diagnosed long before I had symptoms and long before I went to see my GP, It would mean that my OC could have been picked up before a stage 2c or in your case 3, this would have given us a better chance of CURE. So the way I see it and the way my oncologists see it, it can be a life saver "Sometimes" even though it may not be a useful thing to track in everyone. For the sake of a £20 blood test that will give you peace of mind it has to be the only way forward.

However, I do appreciate in some people Their oc does not produce higher levels of protein in their blood, in this case the CA125 blood tesing would be of no use at all. I just wonder if you may fall into that catagory. I understand from my own oncologist this test is not offered to everyone because it simply isn`t always a good marker for everyone. As busyLizzie said usually they like people like us who do produce higher levels of protein, I too keep a record.

After OC, every twinge or pain send alarm bells of worry ringing, but knowing that my CA125 is now a 9, I really don`t worry at all, it helps me identify the difference between the aches and pains of chemo aftermath or re-ocurrance. Talk to you oncologist Jenny, find out what your CA125 was around the time of diagnosis (surely you had the test then?) I will be appalled if not! If you have no idea of knowing how it was pre-op and chemo or how it has been through the treatment I am not sure how it will help you from now forth but I do think you should talk to your health care team or call the Ovacome office.

All the best from Tina XX

It does sound mean to deny us a £20 blood test. Like Tina I have the odd niggle in my abdomen and wonder whether it's the start of the tumours returning. To be honest I'd happily buy a blood test myself from time to time for my own peace of mind but don't know where to go to get one. Anyone any ideas?

Hi Annie,

I am sure if you ask your GP they will do it for you and will not charge. Also if you have a specialist nurse, mine is not adverse to just popping blood test envelopes in the post so you can go along to your surgery/hospital whenever. It just seems to be the oncologists that don't think it out which is my experience or from what people have said here. If they think it is going to freak us out to know the numbers, but that we will be reassured by _no_ evidence either way they must think we are do-lalay.

Love Lizzie

X

Thankyou Tina definately going to get info on my readings and demand blood test done.regards Jennyx