I was diagnosed in May with a stage 3a tumour.It all happenend very suddenly as I awoke in agony with lower back pain.My husband took me to hospital where they initially thought I had a renal stone.A CT scan and ultra sound showed that it was probably ovarian cancer.I was operated on the following day.The pain had been caused by one of the ovarys twisting.I have now had 3 sessions of chemo and appear to be coping well with them physically,but as I get further through treatment I keep thinking about what may ,or may not happen after treatment.I assumed that I would have yearly CT scans but it would appear that I will have one upon completion and this will be used as a baseline should I develop any other symptoms.I have started to see a counsellor as I do not feel I am managing the uncertainty very well.How do other people manage post treatment ? What symptoms did people have when they relapsed?
Christineturnip
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Christineturnip
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You are asking a potentially very dangerous question! I say this because symptoms are very subjective things, and people experiencing anxiety about the symptoms of recurrence will start having the symptoms as soon as read about them!
The truth is, after the experience you have had surgically and chemically, things are going to change and hurt and feel differently than they did before. You will learn to assess your own baseline feelings, and whether changes are explicable, or something to worry about.
As a Counsellor myself, I would say it is a good move to see one - but it is! You can't be forever checking your physical feelings and emotions out with friends and family who will either tend to panic, or feel that they must reassure you (and themselves) that it's ok. Having regular contact with someone with whom you can share very intimate feelings, but who can maintain a professional distance means you will be given feedback about the things that are potentially signs of problems.
Having said all that don't imagine that it is a foregone conclusion that your cancer will return. Have your ca125 monitored regularly (I had mine taken 3monthly after finishing treatment and being clear). After a year of quarterly checks and yearly scans I have been seen 4 monthly with yearly scans. Now 2.5 years after the op, and 2 years after chemo, all remains well (I had a 3c diagnosis).
Very best wishes for a full and long lived recovery!
Thank you.I am a worrier by nature but what you said made good sense to me.I have been very pleased with the care I have received and my CNS has been very supportive and I am sure will continue to be post treatment.
What you are feeling is really common. You have been through such a shock - its takes a while to unpack everything that has happened and put it all into perspective.
Don't expect too much from yourself. The important thing for you to know right now is that it does get better. Eventually we remember things like... just because we had cancer, we can still get appendicitis!
Also please don't worry about not having regular CT scans. I suppose its natural for you to trust them as that's what brought about your diagnosis, but in fact that is quite rare they are used - usually its an ultrasound and a blood test - CA 125. CT scans do expose you to a heck of a lot of radiation, and they can be much less reliable that Ultrasound for picking up small areas of disease.
I hope this helps, but please do feel free to contact the helpline nurses who a great at chatting through these kinds of things.
I think it might be really helpful and reassuring to anyone who may have recently had a clear CT scan and have read your excellent post above to Christineturnip as it may cast doubt on this and they may now be wondering if they should have had a TV Ultra sound instead. It would be really good if you could just clarify the differences and benefits in your opinion of each. As there is a case for both at times I believe.?
It's good that you're having counselling and that you've come onto this site. This is a good place to express worries, get reassurance or just say HELP! There is no reason to think it will return, but if it does, I am sure you and your medical team will cope. As for how to cope, track down a thread on here called something like "What do you do to stay positive", or something like that. I'm not sure if it's in the Questions list or in a blog, but I'm sure it will illuminate some of the things we all think. And of course we all worry, but we all enjoy life a hell of a lot too, as you will It's such early days for you yet, and of course it's natural to feel unsure about the future. Give yourself time, treat yourself gently and take pleasure in little treats if you can. I had a CA125 test monthly at first after my op, then three-monthly, then six-monthly, then yearly to the five year mark. After that I asked my CNS if I could have a yearly CA125 just to reassure me, and that's been the case till now. I'll reach my 9 years clear in December this year. I have had a couple of panics and last year had some worrying symptoms, but I was given a CAT scan and an ultrasound within two weeks of contacting my GP. Apparently, it's often even quicker if you contact your CNS who can fast-track appointments, rather than waiting for the GP system. So, all the help kicks in quickly when you need it, once you're in the system, having had cancer, you do seem to get really good treatment, in my experience.
Stay strong and have a trawl through this site for the thread, it brought out lots of interesting messages and a lot of common threads from loads of women who have been feeling like you're feeling now.
So sorry to hear that you are going through all of this.
It is all at such an early stage for you , so do please give yourself time. It really does take 12 months to get over major surgery , even without a shock diagnosis and chemo.
I was diagnosed with a large borderline tumour in March 2010, two months after my TAH. I really struggled emotionally with the train of events for months afterwards and still feel very sad about what happened.I had a second major laparatomy 5 months later to investigate abdominal pain , so things were complicated.
However one and a bit years later things are , mostly, much better. I have found that trying to lift my mood using exercise, keeping busy socially and most of all surrounding myself with those I love helps enormously. I try and have at least one simple "treat" per day e.g. sitting in the garden for 5 minutes and listening to the birds or doing a five minute relaxation exercise.
I have 6 monthly checkups and do get concerned beforehand, but so does everybody. I am learning to cope, but slowly. I kept a diary and it's really good to look back and remind myself that things really have moved on.I try to note what went well and how I can repeat that , and what went badly and how I can avoid that !
Regarding your question re CT scans it is all a question of balancing risks and benefits. Don't be afraid to ask why a particular decision is made.
The very best of luck with your treatment. The management of this disease is getting better all the time, so chin up !
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It's such early days for you yet, and of course it's natural to feel unsure about the future. Give yourself time, treat yourself gently and take pleasure in little treats if you can. I had a CA125 test monthly at first after my op, then three-monthly, then six-monthly, then yearly to the five year mark. After that I asked my CNS if I could have a yearly CA125 just to reassure me, and that's been the case till now. I'll reach my 9 years clear in December this year. I have had a couple of panics and last year had some worrying symptoms, but I was given a CAT scan and an ultrasound within two weeks of contacting my GP. Apparently, it's often even quicker if you contact your CNS who can fast-track appointments, rather than waiting for the GP system. So, all the help kicks in quickly when you need it, once you're in the system, having had cancer, you do seem to get really good treatment, in my experience. 
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