How do you know if the cancer has returned?

I visit this site often and love reading the uplifting replies to questions. From thinking my life would be over shortly I see many women who are still around years after being diagnosed with advanced OC. I was treated last year for stage 4. I had wonderful surgeons who managed to get out all the masses that could be seen with the eye and followed this with a course of chemo which finished last August and my scan showed that I was in remission. My Oncologist has explained that in trials of the CA125 blood test it was found to have no beneficial outcome of treating a recurrance of the cancer. In fact it resulted in chemo being started earlier than necessary. So I have not been offered these at my follow up appointments. I am feeling good at the moment however, every little twinge scares the hell out of me. Silly question I know, but how do you know if the cancer has returned? I am so scared that if it does recur I will leave it too late to be treated again. Chris x

[Hidden]

Hi Chris,

Seems to me that there are two different things going on here. Firstly; your need to have some indication of your health status. Secondly; your Oncologist's decisions about treatment.

I am NOT a medic; but my oncologist says that in women who have an elevated CA125 level at diagnosis that responds to treatment by going back to normal (and that is not everyone), the blood test is a useful part of the picture for recognising a recurrence. He says he needs a CA125 test, a physical exam and a scan to diagnose cancer.

It seems to me that there is nothing to be lost in finding out if you are indeed one of the women (like me) whose CA125 levels responded to treatment, as then you can monitor this regularly through your GP to keep yourself informed. If the levels rise, it doesn't mean you have a recurrence, but surely it makes sense then to go to the oncologist and find out what he/she wants to do about it. For myself, it is a crutch I use when (as you have said) "every little twinge scares the hell out of me".

Discuss it with your GP!

Best of luck!

Isadora.

[wendydee]

Hi Chris!

Like you, I have a recurrent fear of cancer returning (although I have been told this is now statistically less likely as each year passes -- 8 years now) I seem to have a psychological need to know! My specialist nurse is wonderful at putting my mind at rest if I have any fears or twinges. I just phone her, leave a message and she gets back to me within a couple of days at the longest. After my 5 year check was all clear and they were discharging me, I requested a yearly CA125 (I would pay if necessary) just to check nothing was showing up there, as my CA125 responded to treatment, like Isadora's.

Our specialist nurse team run a fantastic monthly gynae/oncology support group at the hospital. At a recent support group meeting the specialist and gynae oncology specialist came along to have a chat with us and said that the CA125 was unnecessary after 5 years, but some women requested it to reassure themselves. The gynae/oncology dept at my local hospital seem happy to do this, although what will happen when financial cuts are being evaluated, I don't like to think! The specialists also told us that going to hospital via the GP slows the whole process down if there are any queries, and that the specialist nurse team are better placed to respond quickly.

Hope this is helpful. I am so pleased that things are going well for you at the moment. Long may it continue!

Love Wendy x

[PatsyH]

Hi Chris.

I have had OC for seven years and after the initial diagnosis and treatment my CA125 levels have always been monitored. I have follow-up appointments with my oncologist every three months, and every two if my levels are considerably raised, when he also asks for a CT scan. However, he does not rush in with drastic treatment particularly if I am feeling well and symptom free. I am currently on my third session of chemo but my doctor delayed my having it until I began to actually have some pain - the first time my cancer has made it's presence apparent in any unpleasant way. And once again my CA125 levels are plummeting, which I do find very encouraging and indicates to me that the chemo is working as it should.

But dont be afraid to make a pest of yourself when you have questions or concerns. I often used to say 'oh, I musn't keep bothering my oncologist/GP/Macmillan nurse' but I occasionally see a wonderful counseller attached to the cancer unit at my local hospital and she says I - and everyone else in our situation - have every good reason to make nuisances of ourselves!

So you must voice your worries, even if you think they are silly ones - and worrying about the cancer returning is definitely NOT silly.

Best of luck

Patsy

[RuthPOvacome]

Dear Chris

I am one of the support line nurses at Ovacome and your concerns are completely understandable. Most people who have had cancer will echo your concerns about it coming back and every ache and pain is likely to be thought of aa a possibility of the cancer coming back. It does very slowly get better and gradually you will find that you don't imagine that every twinge is cancer related.

The question of the blood test raises a big issue. If you have had cancer how are you going to know if the cancer has returned particularly if you had very few symptoms in the first place? What recent research - as your oncologist has mentioned - has shown is that there appears to be no advantage in starting treatment for ovarian cancer when the Ca125 starts to rise rather than waiting for symtpoms to appear. For some this is difficult as they did not have any or few symtpoms before they were diagnosed which means that they are even more 'jumpy' at the first sign of a problem.

Obviously if a new problem continues for more than a few days it is as well to get it checked out but you might want to ask your oncologist if it is possible to have a blood test from time to time just so that you feel less worried that you might be missing something. We are all individuals and this might not be right for everyone but might be helpful for others. If you would like to discuss things further do feel free to give us a ring on 08453710554 Mon - Fri 10-5 ( but not the 2nd June )

Best wishes

Ruth

[ScardyCat40]

This does concern me as well. I've not stated treatment yet it has been delayed due to further investigations but I worry about the cancer spreading and that every little twinge is evidence of that but I've recently been reassured that it hasn't.

I haven't really experienced much pain. My main symptoms were ascities and constipation, which at first i thought was caused by IBS. Since they drained the fluid off my abdomen I have felt much better and I have managed to get my constipation under control.

[Hidden]

Thank you everyone for your advice. My symptoms before diagnosis were extremely vague until the cancer was advanced. I never really felt ill! I will be asking my Oncologist for a blood test on my next appointment. I don't need one every time, just once in a while. I know it can cause anxiety waiting for results but I would rather know whatever the outcome.

Best of luck to everyone.

Chris x x

[Hidden]

Hi Chris,

I posted this in response to another question by mistake!

Many of us are coping with an aggressive menopause caused by surgery. This heightens the difficulties we have with dealing with the anxiety, and confidence has become a real problem for me anyway.

ANY test that helps to allay fears of recurrence - or tells us we need to be getting advice as early as possible must be a good thing. I don't get the impression that the CA125 test is expensive. My GP leaves it to me to have one on demand. That's 4 monthly now, 23 months after finishing chemo, as are my onc/gynae checks.

We do need to have some mechanism to monitor our own health, and we have the right to do that. In the end, it's we who need to know!!

I had absolutely no symptoms except a small lymph node in my groin which enlarged, and the GP told me twice it was 'nothing like big enough to cause concern' That took 3 months; then she sent me to see a general surgeon 'only because I was worried'. Another month later - after he had removed the lymph node- it was discovered!

Sorry, but I'm not prepared to 'wait until I feel symptoms' again - as you will understand.

Keep well and be lucky, everyone!

I.

[Hidden]

Well there are always exceptions to any rule, and particularly ovarian cancer can be so easily misdiagnosed in the case of women statistics are about meaningful/meaningless as an ouija board (or what ever that supposedly accurate tool used during seances) is.

I'm lucky to have private health insurance - I'm based in on the east coast approx 3 hours from London - but because I also work (at home) I have an additional personal policy. After a brief experience with NHS treatment of OC compared to the several ops I've had privately I almost literally screaming, fled asap to Harley Street. My consultant has personally witnessed the survival of many patients who were referred to him as hopeless cases some 30 plus years ago who are still alive to this day!

He only practices now privately but he has plenty of colleagues who are always available to everywhere living or staying in the UK.

So if you feel well - I'd suggest a second opinion, I suggest to a surgeon to specialises in OC and also an interventional radiologist, before you make your decision. There is a I've heard a trial of a procedure called HIPEC going on somewhere in the UK. Forgive me if I am wrong - it may be elsewhere

There are literally dozens of of chemo protocols for recurrent OC, many great of who are great, some are OK, and there are quite a few who are essentially clowns. If you meet some who dismisses you are offers only palliative care (NICE guidelines) because my aunt mary who like me is Scottish, worked for most of her life at Toronto in Canada - and at several USA hospital whilst the process of breast sceening was being developed is actually still alive and well, still have the occassional fag - and aged 96 - gave me a bollocking last week because 'Why the hell did I have to go and bang on your door whilst I collected my papers - and discovered that you and Jim are now longer there - why the ****** **** didn't you send me your contact details??? (I forgot to include them with her birthday card) Are you OK now? since my current CA126 wobbles around between 2 and 7 and seems to have settled at around 6. I am in remission now and have been since December 2009.

So if you're well now, BE OPIMISTIC. If you feel unwell during opening hours, run to your gp. If you feel unwell at anytime, because of anything at all, call for an ambulance tell them you are at OC patient, and demand to be taken to hospital STAT.

[Hidden]

I know my cancer is a fast growing one, and from feeling it was not behaving, despite being on chemo (session 4) during the middle of April I finished the 6 courses about 4 weeks ago and last week was in hospital as I couldn't get my breath . I had one lung drained, which eased it a bit, but couldn't get anything else out. My count is now 1019, with an emergency appointment with my oncologist on Monday morning - and he has always said treatment when the symptons are bad enough - when it is pressing on the diagraphram that makes it urgent quickly. We all know our bodies, and if you think things are changing get the CA125 done quickly to back up your feelings.