New to this site

[21752]

Hi everyone i have only just become aware of this site even though I was diagnosed with stage 3c ovarian cancer on July 13th 2014. I had very few signs that would have lead me to suspect anything seriously wrong even though I had been having numerous tests for the previous 18 months ct scans Mri etc. Anyway I had debunking surgery and then on to chemo usual combination taxol and carboplatin, and am just finishing course of avastin. I would love to hear what you think about the fact that some oncologists think that they shouldn't scan or do ca 125 test until you present with symptoms after all I had none first time round so my worry is will it be gone too far possibly of a recurrence does happen, sorry for the long saga I'm just so delighted to have found you all. Best wishes

[thehusband]

With my wife her CA125 results from her very first chemo session were always indicative of how the chemo was working. It is also known that when you have a 'trackable' series of CA125 results then a rise in it is seen before a scan would pick up any progression.

That said like all things OC related - there isn't a definitive one size fits all scenario. I guess knowing (or not) your CA125 results Ultimately is an individual decision, I can understand why people want to know and likewise why they don't.

I wouldn't imagine that anything would be 'gone too far' if you didn't know them, from experience my wife always seemed to know, perhaps you become more aware of anything after the first diagnosis. Good luck.

[katiewalsh]

Hi. Welcome to this site. I'm sorry you're in this situation. I was having my A1C checked for years because of the high rate of breast cancer in my family. Once you've had breast or ovarian CA docs will or should monitor you yearly. Have you considered getting counseling for genetic testing? There's a significant correlation between breast & ovarian cancers. It would also let any children (male or female) know if they need ( if they desire) to be tested. Some women decide to have prophylactic mastectomies after ovarian CA and vice versa. I wish you good luck and strength in your battle. These sites are really helpful to find info and support. Katie

[katiewalsh in reply to katiewalsh]

PS. I have a friend who is 20 years out from ovarian CA & doing well. Katie

[thesilent1]

Hi, welcome to our forum.

At the Cancer Centre in Belfast, the oncologist advised me on my first review post treatment, Jan14, that I would not be getting routine scans but my CA125 would be done at each visit.

My CA125 was an indicator for me given that it was 1608 on diagnosis. In March 14 it was down to 19. In August 14 it had risen to 41/47 (can't remember which) and this prompted as scan which confirmed it was back.

Since then I have been scanned every 3 months and blood test done too but I haven't a clue what it is, she advised me at outset of recurrence not to ask as it will only be going one way and that in itself can make you more anxious, so I haven't asked.

You can ask your GP to carry out the CA125 test every 3 months for you. The normal range is between 0-35 but they look for a trend, it can fluctuate but its doubling of last reading that I think worries them.

All the best. Ann xo

[lesleysage]

Good morning,

My OC clear cell carcinoma stage 3c gave no symptoms of feeling ill; I did my 'soft parts' check and felt a swelling above my pubic bone so went to GP to ask a question? He suspected immediately what it was exhibiting as much shock as I felt. We have worked really well together since (May 2011) through two major ops + two chemos (carboplatin + taxol standard regime followed 21months later by dose-dense carbo+taxol + fortnightly avastin for six months). That finished Aug 2013 and so far my 3-monthly CA125s give me the reassurance I'm 'good to go' for another 12 weeks... My GP 'orders' the test locally to save me driving over an hour to the clinic & we have decided if the CA125 shows a more than 10 point rise then we'll retest within a couple of weeks, if not immediately and then decide if we contact the oncologist to ask about a scan; other things can cause a CA125 to rise - it is only a 'marker' not a definitive test. In between the CA125s if I feel ill at all, we'd fit in another blood test.

As one of the others said, it's a personal choice...and what I've learned is to try to feel you 'are in charge' of what decisions are being made, be an active member of the decision making process whenever you feel you have the emotional strength to ask the questions and work at understanding the answers and consequences. I've accepted I'm 'that sort of person' who want to work with the team for my benefit and not 'be done to' silently by professionals. I've found all have been receptive and respectful of my needs and time (they advise the urgency when its a real factor) to work things out to make my choices. I feel more times of 'calmness' within the whole mix of distress and yet joy of life.

Hope this helps and today is a decent, and maybe a brilliant day!

Lesley

[Connie8 in reply to lesleysage]

Lesley what an concise and informitive reply . That's an excellent relationship with your GP and it ticks all the boxes . I feel once you are in the system an got a diagnosis and treatment plan at least you can work with the team re what suits you . My concern is for women not yet diagnosed .. Should they ask for CA125 when they go for MOT . I know it's not definitive but it's all women have got re early diagnosis of O/c . At least it that flags something can b followed with ultrasound . I wish u girls strength both mentally an physically . I think we are all amazing coping in our own way with this illness in which diagnosis is still a problem but thankfully survival is vastly improved .

[lesleysage in reply to Connie8]

Hello again, Connie,

If my understanding is correct, the results from a number of years research into the value of screening for OC will be published just before Christmas. So, depending on whether the research indicates it is cost effective (as it did do with breast and bowel cancer research into the value of 'mass' screening) there could be some new guidelines emerging in 2016. Ovacome will, I'm sure, publish the results and I think they hope to have a 'breakfast meeting' (obviously for those with access to London) on the announcement day but this is still awaiting confirmation of the announcement day itself!

[Connie8 in reply to lesleysage]

Yes Lesley that too is my understanding but it's frustrating as in the meantime so many late diagnosis . But we don't live in an ideal world !!! In Ireland we are awaiting new cancer care service protocols 2 b unveiled in 2016 ?? Or so we are told !! Look after yourself Lesley .

[Hidden]

I agree it is a worry, most docs review every three months and if you are then symptomatic they refer you for ct scan and blood test. However that doesnt stop any of us worrying when we get a pain or an ache. Even if something shows up, they may adopt a wait and see regime and then hit it when the time is right. I heard a gynae onc speak in May and he said that ct scans and bloods only make you anxious so that is why they dont do them a lot now, in addition he added that it doesnt affect the patients outcome if treatment is started later than earlier. While I am rather unhappy with that remark because you cannot generalise, this is what happened me back a few years, I had pain couldnt sit, lost weight and all I got was a back x ray which showed osteoarthritis. So gp referred me to Rheumatologist who ordered mri, I had been refused a ct scan by gynae as one symptom didnt warrant it. So mri showed OC was back with a vengeance. I was still in pain and underweight when starting treatment but my point is that I am still here and have had chemo since again. So your worry is not unfounded but if I had my time back, I would have insisted that gynae had duty of care to provide other diagnostics such as ct. I think what I am trying to say is that we all know our own bodies best

[Caroles1]

I too have only just found this site and have not actually posted anything, just replied to others posts and I was diagnosed in August 2014.

In your case and mine we should be taken more seriously and get the scan and ca125 test we need quickly because it may be a recurrence.The worry for people who haven't been diagnosed before is they are fobbed off and not taken seriously.

My problem is I worry about it coming back and now everyone thinks I'm well they don't really understand I still need to talk about it occasionally.

Do you find that? Xx

[21752 in reply to Caroles1]

Hi sorry to hear we are in the same predicament I find that you have to find a happy medium, others possibly don't want the conversation to be all about cancer but in my experience my friends and family have been a godsend they have listened when I needed them to. Of course it can run through your mind about a recurrence but I think if we Get the right monitoring I.e scans and blood tests it would be less worrisome to some .best of luck.

[IrishMollyO in reply to Caroles1]

You are not alone in how you feel Carole's. All of us who worry about recurrence are on the same cliff edge. The mantra from some of the medical profession is that CA125 only makes patients anxious and that it can show false positive or false negatives. Yes. This can happen but in the case of a high count on diagnosis as was with me and which reduced rapidly with chemo then in my opinion I am one of the people who show a true reading . Plus I am someone who gets even more anxious if it's not done. My GP does mine now which causes my liason nurse to get angry with me. This in turn makes me angry because it's my life and my body .

Also you mentioned that now that people don't understand that because you are in remission and look well that you should have no worries. I spend a lot of time trying to explain the fear of recurrence. This is why this site is so good as all the women know exactly what you are talking about.

I wish you all the best and I wish you a recurrence free life

XXX

[Caroles1 in reply to IrishMollyO]

Hi Molly's

Thanks for your support,I too had a sky high C125 which reduced to about 4 with chemo,so I do get a lot of comfort from that and I am checked on a regular basis,was having a bad day,but today didn't think about the C word at all!It is a roller coaster ride for us all and I wish u too a reacurrence free life

Speak again xxx

[IrishMollyO in reply to Caroles1]

Great Carole's. We will just start each day as a new day . Last night I worried about how to deal with a situation that had nothing to do with my illness and in the end it all worked out so my worry was completely unnecessary . I have to continue to remember not to " sweat the small stuff " ! Now if only I would remember to practice what I preach ! Keep smiling

Will keep in touch

XXX

[Caroles1 in reply to IrishMollyO]

Thanks Mollyo

I think the illness makes us worry about what may not happen,I worry most evenings and night because I don't have so much going on but yes, let's keep smiling and it would be nice to keep in touch,

Regards,

Carole xxx

[IrishMollyO in reply to Caroles1]

Carole's. My reply to you went to the post below yours but as it was a similar theme I hope I haven't confused number 21752. I hope you can read it . Time for me to go to bed before I make more mistakes. I do wish you all the best for a disease free future..

XXX

[IrishMollyO]

Hi there. Some gremlin keeps throwing me off the site so here I go again. I replied to Carole's on your second post in error so I'm sorry for the confusion. Your doctors must have suspected something was amiss or otherwise they would not have sent you for ct scans and MRI and luckily they did. Your worry is all our worries. The controversial CA125 and its role in checking for recurrence. It is my personal opinion that if you have a high count on diagnosis that reduces with chemo then you show a true reading. That is not the opinion of my oncology team who think that it only makes patients anxious ! I am not a doctor and I do respect the medical profession but this disease makes you so vigilant and worried that you want to catch the monster before it rears its ugly head again. Let us hope that in the near future there there will be a uniform approach to checking for recurrence.

All the best

XXX

[Martina18]

Hi - I have a CA125 every 3 months but for my particular type of OC (clear cell) it's not a great marker. Before my surgery they didn't even think I had OC because the CA125 was normal. What a great surprise when I woke up to that diagnosis. I had a CT scan before starting chemo and then one after. Now they have told me the same thing, they will do the CA125s and look for a change in value even more than the absolute number (like 12 to 20 would be important even though those are both normal) but no more CT scans. I am supposed to monitor symptoms which has made me a total wreck. I am constantly convinced the OC is coming back because my stomach doesn't feel right, I'm bloated, etc. I do, however, agree with the no constant CT scans. The scans don't pick up anything until it's quite large and you are getting exposed to A LOT of radiation each time you have one. So it's the CA125s, anti-anxiety meds, and being a nut about every little symptom. Good luck!