I had my 6th chemo yesterday. My oncology consultant has told me that due to my surgery being optimal and ca125 now in normal range I will not have blood tests or scans at the 3 monthly check ups but rely on symptoms to indicate recurrence.
This has scared me stiff and totally taken the edge off great news. I had a full scan and internal camera in march 2015 for shadow on womb, I was told then I had 'youthful' ovaries and all was good, 1 year later I'' 3c high grade serous ovarian cancer, well established and wide spread. I only started to get symptoms in February 2016. I explained this too him but it didn't change his position.
Has anyone else experienced this? Any suggestions?
My drive for positivity every day is seriously at risk of being overtaken by watching for symptoms.
I was NED and had my first three-month check up in October and everything was fine. At the end of the appointment I was sent for a CA-125 test which showed it had risen from 35 to 1209. As a result I had a scan and the disease is back in my para-aortic nodes and am about to start treatment, probably a trial, if I pass all the hoops.
Best to see what other ladies say but since I as yet don't have any symptoms I wouldn't know if it weren't for the blood test. Perhaps if he won't test, your GP may be willing. From my understanding its either a large increase or a steady upward increase over a number of tests which is indicative.
Thank you for that January 2016, I will speak to my doctor and see what she says, she is very sympathetic as has had breast cancer so gets it on a personal level. All the very best to you two.
Lisa xx
Hi Lisa I didnt get any symptoms either then diagnosed 2 years ago stage 3, now my oncologist always tests my ca125 as it is a good indicator for me (I know it isn't for everyone) and if it is raised he will then send me for a CT scan to see what's going on. If you aren't happy with the decision made by your oncologist I would have a chat with your CNS to see what she/he says about it. I have heard some ladies on this sight in the same position as you so hopefully they might have some useful suggestions for you.
Take care
Xxx
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Thank you KMAllan, I'm sure I have seen people mention this too. Is CSN clinical specialist nurse?
Yes that's right Lisa clinical specialist nurse... I don't think I would be comfortable not having a blood test I know it's not always a good indicator but it is so useful ... I think your wise to speak to your gp and get the ca125. I think your consultant is being a bit short sighted.
I am just about to start chemo but my Ca125 has always been normal, 12 at last test, even though my cyst was cancerous and I have spread in the abdominal fluid. Due to see Oncologist Monday so definitely asking what use the Ca125 is in my case!
Hi Lynme, my CLA125 was only 30 at diagnosis, it dropped to 13 after a few chemo s ss ions and was 14 at my first post chemo check up. Whilst it wasn't aa good indication of my cancer I am now going to have regular tests to monitor the trend of my levels.
Hi Lisa, I can understand fully you need to be reassured. I am not too sure why your consultant can't see your anxiety. Can you get another opinion? or like you said ask your own GP. Even if it's only to have a regular CA 125.
As soon as I finish the chemo it feels as if they are taking the safety net a way. The results can been good but with out some kind of regular check up how do you know if its back or not.
As for symptoms I have them all the time even with a low CA 125 count. So for me I need to be reassured. I am very a anxious & I feel very stress even with good news.
Hope you can get this sorted out. Take care Cindyxx
Yes it does feel very much like a safety net has gone, I feel a little like I'm now in free fall. I too still have some of the symptoms which really let me know there was something wrong in the first place, I also had two huge cysts removed which caused a lot of symptoms right at the end so wouldn't even know what I'd be looking for now. I've had some great advice on here and will be speaking to my doctor and specialist nurse this week. This is such a great support network! Do you think we all just get jittery with any news now!
Hi Lisa, yes, I am sure we all get jitters even with good news.
On Tuesday my cancer doctor told me I can have a brake from treatment my oc is dormant for now. I could not stop crying the shock of the last 19 months of treatment has really worn me out. I wounded if doctors understand how this effects us mentally as well as physically.
Good luck on your visit to the doctors & specialist. Try & make a list of what still concerns you & hopefully they will be able to answer your questions. Take care Cindyxx
I had to be politely assertive with my Oncologist to get a post final chemo scan and CLA blood test and said that I wanted my bloods monitored for the trend every three months.
I did get both and have a blood test ticket for two weeks time before my next appointment. If you really feel you need these then sit in the room, smile and say you need both for your peace of mind. You should have both after your final chemo then at least you should have the blood test before each check up.
Scans should be limited to if and when you have symptoms though as they have a risk too.
If your doctor says he or she doesn't like to give blood tests then smile and say when and if they have ovarian cancer then they can make that decision for themselves. Harsh but they are not us!
Thanks Clare for your strong, positive and empowering message, unfortunately I was feeling a little tearful yesterday which is not really like me but my last chemo feels like such a milestone! I will make sure I approach things with slightly more determined and positive approach next time. I will make sure I get a scan/test from where ever I can and have been bolstered by the replies.
So sorry that you have this additional stress, but the end of treatment is a vulnerable time.
I had an unstated borderline tumour removed in January 2010 , after much muddle and confusion. I was told that I needed to be followed up for 7 years. I found these checkups incredibly stressful , getting appointments and results was a nightmare. For this and other reasons i asked for patient led follow up at the half way stage, so I could ring and get an appointment if I needed it.
The guidelines may say ....no routine scans or blood tests...because the people in a trial did the same regardless of whether they had scans etc or just a check up. But guidelines are only guidelines and unless they say never do this , there are always exceptions. You can bet your bottom dollar that the guidelines also say that patients should be asked about their wants and needs and preferences.
I hope you get out and about and have a bit of R and R today.
Thanks for that, I'm going to enjoy my day today and give myself a week to get into a calmer state of mind and then tackle rationally using the great advice l've had on here. Definitely onwards and upwards... xxxx
I was diagnosed in July stage 1c2, now on 6 cycles of carboplatin. I have been told the same as you no scans or blood test as my CA125 was 13 in the beginning. I feel not happy about it esp when he said my first sign would be a feeling of generally just being unwell, never felt fitter this Summer! So have spoken to my gp and she will organise both! Good luck. xx
I have my CA125 checked at every appointment with oncologist, it's the protein marker that indicates when things are either stable or are changing. I thought it was standard practice and a safeguarding way of keeping track of cancer. Your GP could do this for you for peace of mind if nothing else. I would push to get it done, it can't hurt and is just another safety check we need for peace of mind. Good luck xxx
A doctor said to me to take full responsibility for my own health and to not settle for something I am unhappy with. At the time I walked away from her feeling quite angry. It felt like passing the buck back to me. It turned out to be valuable advice and I now hassle for bloods and anything I feel I need for my own emotional wellbeing.
If you feel it is important for you then it's dig your heels in time. Speak to your GP they can refer you for a CA125 which is a cheap test.
I am on watch and wait with 3 monthly bloods and scans. I'm happy with this. Any problems I'm to let them know.
At the end of the day I only get one shot at this life lark and if I have to have a hissy fit in a crowded waiting room then so be it.
Follow your needs not someone else's interpretation of them. Good luck
I had my family doctor do a 125 blood test and an HE4 blood test because I was worried. These don't have to come just from your Oncologist. You have to be sure your insurance is going to pay though or it will be out of pocket. Be aware that different labs will have slightly different readings though. Stress is not good for us and this disease, with so many unknowns, is stressful. We do need to take control of our lives enough to give us some peace of mind, although thats hard to come by. I would like MRI's instead of so many scans but haven't been able to get that far yet. I hate the feeling of having no control over my own life. I do believe in my doctors but I also know mentally I need to feel comfortable also.
I'm in the UK and on a trial and I have the impression that blood tests will continue, although at a lengthening interval until ten years after first diagnosis. I'm currently on three weekly avastin with blood and urine check before each treatment. If I get to ten years without recurrence I'm planning on asking my GP for a blood check each year even if I have to pay privately for it, just for my own peace of mind.
I had a high CA125 on diagnosis and ascites,which had to be drained,bloating,sickness,loss of appetite and fatigue.
So,as you can see I had a lot of symptoms,but I know how you feel just relying on how you feel,personally,I would want to be tested,but maybe it is because they don't think anything will show?
If that is the case and they don't budge, I would try and live as healthy as you can and either pay privately for checks,or,keep a close check on yourself and get to the doctor if you are not happy with yourself.
Difficult I know, but you have to get on with life and make the most of the good days.we all do that no matter what position we are in, keep in touch,
Love
Carole xxx
Thanks Carole, I had very few symptom right until the end when I was stage 3c, when they all seemed to land at once. The advice on here has been fab and I'll most definitely get tested as it feels like the right thing for me under the circumstances whether that be through my doctor, surgeon or privately. You are so right when you say you have to make the most of the good days, Now that I'm feeling a little better and chemo has finished I'm looking forward to getting a little normality back!
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