How do I know if it is back

[parvinc]

I have finished treatment and was given all clear in April. I am worried about the reoccurrence of the cancer as my oncologist is not doing CA125 tests anymore. I have been told just to watch my body carefully. What are the signs and symptoms of reoccurrence. As I have had full hysterectomy are the symptoms the same as last time. I panic at any pain or discomfort and feel paranoid as I am aware it can return quite quickly. Can some people who have had it return share some signs with me please. Thanks

[Hidden]

I haven't had a recurrence (I'm glad to say). However, I know how worried you feel, and how much you need to have some confidence that things are ok. Can you get your GP to do a CA125 test for you? Mine let me have a test whenever I wanted one for the first year, and I wanted one every 2 months. Now (after two and a half years) I have them 4 monthly to inform my oncology visits, but should I have a symptom that worries me and hasn't cleared in say, a week, I would go to the nurse at the GP surgery and ask for a ca125 test.

I think it is nearly irresponsible to tell you to watch your body carefully. How are you supposed to know what are simply the signs of recovery from major surgery (which go on for many months), the signs of menopause (which, if brought on by surgery, is aggressive, and goes on for an indefinite amount of time - more than two years in my experience so far). I suspect your oncologist is a man, or at least a woman who has not had either hysterectomy or menopause!

Take control and set up a regular check with your GP to set your mind at rest.

Very best wishes,

Isadora.

[parvinc in reply to Hidden]

thankyou isadora. this has made me determined to take more control. i know CA125 tests are not always accurate but at least they are an indication. i have changed my diet and am looking into jane plants eating programme which eliminates diary. iknow that if it comes back then i just will have to deal with it. thanks and look after yourself too

[Hidden in reply to parvinc]

Just to add: It makes me rather angry when medical staff dictate what we as patients need. It is stating the blindingly obvious to me to say that stress makes you more susceptible to recurrence, because it lowers your immune system's ability to fight for you. Therefore anything that helps you to feel in control and able to monitor yourself is an aid to prevent recurrence. Too often we are treated as if our illnesses are 'owned' by the medics - which would be fine by me so long as they had the symptoms, treatment and outcomes too!

Let's stop being 'obedient' recipients of what they are prepared to give, inform ourselves, and demand what we feel we need.

Also; if eliminating dairy is too drastic for you - find a source of grass fed, organic dairy products. The dangers are associated with dairy products from factory farmed, stressed cows fed on concentrate (the source of the vast majority of milk, butter, cheese and yoghurt sold today, sadly).

Sorry if I sound like Mrs Grumpy; but I'm damned if I'm going to give in to this illness, or it's 'management' by the (still v male-centred) medical profession!

Find out what you need, then demand it - that way will lead you to help others to find their way too.

Much love,

Isadora.

[parvinc in reply to Hidden]

please dont get me started on the ignorance and attitude of medical staff -ha ha !! i have had my fair share this year in fighting to actually get treated then being moved from surgeon to surgeon -the list is endless.thing is most of us are very capable woemn but when diagnosed with cancer we feel so lost trying to cope with the illness, family, treatment etc that we tend to just accept the treatment of the medical proffession because it takes too much energy to beassertive. thank god for the charities though who pick up the damage done by these people. i think they get so desensitised that they forget the effect of their words. one friend told me her oncologist said " well youre clear for now but the reoccorence rate is high in oc so dont get too excited, you will probably need more treatment in the not too distant future" how moral boasting is that eh.

thanks for your advice isadora love parvin xx

[jeanv]

HI, I was diagnosed nearly three years ago and finished 3rd line treatment in February this year. I know how you feel as any twinge etc you think its reared its ugly head again. I did get some symptoms namely the bloating and when it did not go away I contacted my gynae/oncology nurse. Like you my consultant has stopped doing routine CA125 as he says he would treat symptoms and not a rise in CA125. I would much rather be having a routine blood test as well, but when asked if I could have one I was refused. Try to stay positive and live life to the full, if you have a problem that does not go away contact your gynae/oncology nurse they are there to help and reasure you. Good luck Jean

[parvinc in reply to jeanv]

thanks jean. i am going to insist on the blood test xx

[Jane]

Hi I finished treatment in oct 2010 and had monthly CA125 tests as mine was stable at 47 for a while. The pains do settle over the months and there are days where i don't feel any pain at all. Having said that my CA125 is now 122 and I am having a scan tomorrow. I would follow the advice given and get your GP to give you a form for a CA125 test at your local hospital, then you don't have to do it straight away, you can do it when you feel it's right for you. if your oncologist is being positive the message is don't worry, enjoy your life as you get stronger each day. Good luck.

[parvinc in reply to Jane]

good luck for tommorrow let me know how you get on.

[Phix1 in reply to Jane]

Hi I was diagnosed after having a mass the size of a large grapefruit & my remaining L ovary removed. Apparently the mass burst during surgery, & they cudnt get 2 the lymph node due 2 spaghetti junction scar tissue - previous hysterectomy. They found the cancer inside the mass post op. June 2009. After chemo my CA125 checks were stable although wasn't told the numbas. Last month the level had risen & going 4 scan with contrast full torso area 2moro ;( not looking 4ward 2 it but trying 3 stay possitive. will get result nxt week, fingers & everything crossed ! Hope ur scan went ok ? Pls let me kno how u get on Just keep living each day 2 the max we can manage, Also on DLA, R Leg 7mm shorter thanks 2 hip replacement sept 2007, btw misdiagnosed as trapped sciatic nerve by 3 different drs, chiro & osteo! went private after MPHosp lost me eventual xray over a yr l8tr. within minutes I saw my hip dysplacia, still had 2 wait full 5 mnths 4 op. they didnt believe me wen I told them it was shorter, even the physio said last week they seem ok, The podiatrist said he sees so many people with the same prob ! Hav a shoe lift & walking stick, apparently the surgeons wont even consider L hip op until 1cm difference! How incredulous is that ? Being a holistic therapist am vry frustrated & dissilusioned with our NHS. Previously in the QA's, nursing has definately changed, No mrsa etc bak in the day. Tc all, cant write any more just now any comments / suggestions gratefully recievd, Jo Xx

[sueba]

Hi. I was diagnosed in March 2009 and completed treatment in July 2009. In September 2010 I was having varying bowel problems and was extremely tired and went to see my Gynae specialist nurse. She said to mention to my Oncologist and she would probably send me for a scan. I did this and she didn't think a scan was necessary as my blood test was ok and sent me away with Fibogel. My bowel symptoms changed again and by March 2011 I was struggling to keep awake at work, was visiting the loo about 15 times a day and not eating much. At my routine Gynae check up I mentioned this again to the Locum, he said everyone has bowel problems after Chemo and a Hysterectomy and didn't mention my CA125 and I forgot to ask. I rang my GP about another matter and asked for my CA125 results, they said it was 6 when I finished my Chemo, risen to 18 in September 2010 and in March 2011 had gone up to 97 and they had put on an alert to the Consultant. I contacted my Gynae Specialist nurse, she arranged for me to have a scan asap and it turned out I had a reccurance and now have an extensive tumour in my abdomen which rests on my bowel and on my kidneys. I have just had my 2nd session of chemo and am finding it much harder than last time. On hindsight I really wish I had persevered more back in September 2010, so would say to you any changes in bowel habits must be worth checking on, as are the problems in eating. Good luck and hopefully you won't get it back. Love Sue xxx

[suse]

Hi, I was diagnosed December 09, had surgery and chemo and finished my treatment in September 2010. I go for 3 monthly check ups at the moment and i also worry about any little ache or pain. My consultant didnt offer me a CA125 test either said to let him know if i had any symptoms and they would then look into it. I go next week for check up and will ask again if i can have the blood test to put my mind at rest .!! Take Care Sue x

[parvinc in reply to suse]

i think i will do the same, as i feel this agony over any ache or pain is driving me crazy. one of the reasons i ended up with stage 3 cancer was because i refused to realise that something was wrong and just thought i was tired because i had a busy lifestyle and bloated because i had been on different slimming diets, so i dontt want to ignore signs and do the same again but dont want this to lead my life thanks sue look after youeself xx

[Hidden]

I was diagnosed April 2010 and finished chemo in August 2010 after having an extensive operation because of the spread. My consultant doesn't give CA125 tests either. Just told me to report anything that didn't appear to be normal. Well I've got news for him, I don't think I will ever feel normal again!! Every twinge, every bloat scares me rigid. I have developed a hernia from my op. I have had it checked by the Oncologist, the Gynaecologist and my GP and I still feel uneasy about it. Don't think they really understand do they?

[Hidden]

I was diagnosed in May 2007, with op in juky and chemo afterwards. The onc saw me every 3 months, with the results of my blood test (including CA125). Jan 2009, just going for a regular check up on my own, I was dismayed to be told very blunty that my cancer had returned. I was completely unaware, and devasted by the male doctors comments........ since then I find I do recognise some of the signs of it recurring, and I know my problem is pressing on my lungs, so breathlessness is my main problem. I also get ascities (?) and have had both the stomach cavity and the lungs drained...... I am now on my 5th line of chemo, and have reached the end of the NICE recommended treatments, so it is whatever the onc feels might help now. Signs and symptons depend on so many things, but mainly where the growths are, and what they are pressing on.... get your CA 125 done on a regular basis by the GP if the onc won't do it. Live life to the full, just in case.... take every day as it comes and make the most of it.

Good luck

Viv

[Hidden]

I was diagnosed in May 2007, with op in juky and chemo afterwards. The onc saw me every 3 months, with the results of my blood test (including CA125). Jan 2009, just going for a regular check up on my own, I was dismayed to be told very blunty that my cancer had returned. I was completely unaware, and devasted by the male doctors comments........ since then I find I do recognise some of the signs of it recurring, and I know my problem is pressing on my lungs, so breathlessness is my main problem. I also get ascities (?) and have had both the stomach cavity and the lungs drained...... I am now on my 5th line of chemo, and have reached the end of the NICE recommended treatments, so it is whatever the onc feels might help now. Signs and symptons depend on so many things, but mainly where the growths are, and what they are pressing on.... get your CA 125 done on a regular basis by the GP if the onc won't do it. Live life to the full, just in case.... take every day as it comes and make the most of it.

Good luck

Viv

[wendydee]

really good article on kinkardineshireobserver.co.uk entitled "New Guidance for Ovarian Cancer Tests - behind the headlines", or via the Ovacome link on facebook. A lot of mentions of CA125, which seem to be put forward as a first line in screening if someone goes to GP with the symptoms! They say it's only around £20 per CA125, so read the article and if you need to enquire again, go with the facts! It says it's the NICE guidance, so should be on their website.

Let's hope we stay healthy though and don't need to go through all the worry of being sure it's come back! I've been there a couple of times and it hasn't! My local hospital, especially the CNSs are fab at reassuring and pointing out what to do next.

Stay healthy xx

[dundeegirl in reply to wendydee]

That's kincardineshireobserver.co.uk with a 'c', the above link has two k's so won't get you through,

Cat xx

[wendydee in reply to dundeegirl]

Oooops! My spelling, dreadful! Sorry if I misled anyone! Thanks, Cat xx

[gmsk]

HI there, my recurrence was picked up by a CA125 test..it had started to go up, but I had no symptoms. My Onc. won't treat the numbers, but only the symptoms and the scan obviously. I would definitely ask for regular CA125 tests. They can be wrong, they are only an indication, but it could help catch the cancer early if it did come back. It's so annoying that all oncologists are different, I'm sure if they were in our shoes they would be asking for a test!!!

[Heffmeister]

My local consultant wasn't going to bother with ca 125 yests for me either. He said it's not usually sensitive with mucinous tumors and it was never tested before my intial surgery. I only insisted on it after I had a second opinion on all my pathology and follow up and it was included in their follow up routine. My consultant used to raise his eye brows ever time I asked him to test it and made me feel a bit silly as I had a borderline tumor which he didn't think would come back.

Well what do you. know.....? my ca125 begain to creep up above normal limits in the spring and I started to get pain like a occasionally stitch in my left side (now I have almost constant pain on movement, swelling, tenderness and trouble with bowels and eating much) and scans now confirm I have a re-occurence. So insist on the test, you never know, and it can't cause you any harm.