I have been for a six weeks check after my chemo and scan and the oncologist said my ca125 was 15 and everything was fine. i asked him
if i would have a scan after a year and he said no, they would only scan if my symptoms reoccurred i was a bit surprised as reading other ladies blogs and questions some seemed to have a scan every year have other ladies experienced this ?xx
My oncologist insists on a scan every year- but that might have been because of the extent of my disease. I had stage 3c. Perhaps yours was found sooner?
I think each hospital has different guidelines and the treatment is changing all the time. I'm sure that, if you experience any symptoms or worries, you'll be able to get in touch with your specialist nurse and ask for an appointment, by-passing the GP wait and referral. That's what my hospital does, anyway. Are you feeling well at the moment? If so, your body often offers the best guidelines, I think. I asked for a CA125 yearly after I was discharged and it reassured me, but I now think, if I feel well, I don't need it. I know I can phone the dept if I have any worries.
I'm glad you're doing so well
Love, Wendy xx
Great news that your CA125 has fallen so much !
I had a borderline ovarian tumour and have been told that I will have an annual CA125 and abdominal ultrasound. Initially I was told that I would be seen by my consultant every year, but at Ruth's advice I queried this. My consultant has now agreed that I can be seen every six months to start with .
It seems that there are really no hard and fast rules, whilst mine was "only" borderline it was huge, my CA125 was raised , I have ongoing pain and I wasn't staged.
Whilst scan results are important what is much more accurate seems to be how you are and how you are feeling. However if you are in any way unhappy with this advice I would ask how this decision was reached in your particular case. It's your health after all.
I also don't have blood tests or scans only the 3 month check ups and I was stage 4 at diagnosis last year. My oncologist explained that trials have been run which shows there is no benefit to starting chemo as soon as any rise in CA125 is detected and the longer we can go between chemo sessions the better reaction our bodies have to it. I am now a year into remission and am trying to read my body so that I don't miss anything that may be an indication that something is amiss but it's very difficult. Every twinge sends me into a blind panic............I am sure this will get better but it is very unnerving wondering what's going on inside my body. I am currently waiting to go into hospital to have a hernia repaired (a result of my previous op!) but I'm quite scared about being opened up again, just in case they find something..................but vanity will prevail and I need to get rid of the unsightly lump which even 'Auntie Gok's' cannot disguise.
Take care and keep positive
Chris x x
i also have stage 4 and my oncologist is not very reassuring he made some comment about "a scan wont make you live longer" which knocked me for six but he is that type of person. it is nice to speak to some one else that has stage 4 and gone a year. it seems we are being treated by the hospital the same. good luck with your hernia repair i can guess you are scared but you sound a strong person best wishes and thank you nikki xx
Hi as one of the support line nurses I would say that a large majority of those who are being followed up do not have a regular scan unless there are problems or, if they are having regular blood tests - their Ca125 is going up consistently Of course every situation and person is different but I would suggest you don't need to worry about not having regular scans. If necessary it might be helpful to speak to your specialist nurse about this.There may be a risk friom the radiation you are exposed to if you are having regualr CT scans. Obviously if there are concerns about symptoms etc the risks will be outweighed by the benefits
As mentioned by Chris trials have shown that there is no difference in the benefit of starting treatment as soon as there is a rise in a blood test as opposed to waiting until someone experiences symptoms. Of course it is nerve wracking wondering if every ache and pain might be the cancer coming back but this does gradually improve with time. All the best
Ruth can I ask please :
What do we know about the HE4 Blood test as an additional monitoring tool for picking up recurrence as well as the standard CA125 test which is not a good indicator for some types of OC tumours? It would be interesting to get others feedback on this as it is used widely in USA for past 2 years as it works in a different way to CA125. My understanding is the HE4 picks up a protein that is only secreted when Ovarian Cancer cells are present whereas the CA125 just simply picks up on any inflammation present which may possibly be from other causes than Ovarian cancer tumours . That is the basic problem with an inflated CA125 figure, it can be caused by issues other than Ovarian cancer type inflammation.
Therefore it would seem to me that the HE4 is a good test to do ( its a simple blood test and we have enough of those already!) as anything that helps to pickup on an early recurrence is essential as an extra diagnostic tool. it would surely help the oncologists and ultimately us!
I absolutely understand what you say about it not necessarily being a benefit to start treatment as soon as tests show recurrence. However, the advice you are giving is at variance with the advice my oncologist and surgeon have given me. Both have been seriously taxed by me about the radiation danger from CT scans (I've now had 5 in 2.5 years), and maintain that early diagnosis far outweighs any slight risk, and that what works for them is a whole picture. They have worked in partnership for over a decade now with good results. That picture needs to be a blood test (especially where - as in my case- ca125 has been a marker of the cancer and treatment), an examination and a scan.
I have had wonderful treatment from my hospital with superb coordination between general and gynae surgery and gynae/oncology.
I think I would have gone mad with worry over the past 2 years without regular thorough testing. That concerns me greatly as a therapist. If patients with this awful disease are left to worry, that in itself is going to undermine their sleep, health and well-being and be far more dangerous to them in terms of recurrence. As patients we need to have some indication. It might not mean that treatment starts immediately, but we also (and I would dare to say, primarily) need to have a gauge of our own health.
It makes me angry that people who might get that from a ca125 check are not given it.
When I first was diagnosed there were no other symptoms than a lymph node enlargement. All other symptoms were easily explained by other things. It seems that women who are in aggressive surgery-initiated menopause are being expected to work out whether their many many symptoms are that, cancer, or chemotherapy reactions and results. That is just about impossible!
Sorry; but it is important and makes me so worried for those people.
Scans perhaps do not need to be done regularly unless blood tests are not useful, as I understand they are not in some. Blood tests are very useful for many of us, and I think we all need some way to take a vestige of control over our disease. I am, once again, so glad to being treated where I am!
It's good for me too and I have read of other ladies on this site who were at stage 4 and have defied the statistics and things are improving all the time. My oncologist was on maternity leave when I was being treated last year and I saw several different oncologists. The first one I saw was very direct and didn't give me a lot of hope however, all the subsequent ones have been far more positive which I think we need. Try to keep strong and positive. Take care.
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a tumor I know they are skilled to read the scan, so I must have something very wrong.
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