are there any stats on the chances of recurrence after 12 years

my notes were unclear but it is thought I had an early stage OC 12 years ago which was successfully treated with full hysterectomy, bilateral oophrectomy, etc.

I was told a few years ago ( when I wanted to stop attending) by a specialist nurse not to stop going for CA125 tests as it is the only way to reveal early stage recurrence ( 6 months before it shows on a scan)

she moved on and my hospital out patient appointments are now always with the consultant,we no longer have a nurse led clinic. I am and always have been well.

each time he asks if I want to continue attending and the answer of course is no , but i do not know what the stats are for recurrence, when should i stop having blood tests I am currently tested twice a year and my CA125 level continues to drop its now 13

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  • Hi

    Well done for staying healthy for 12 years. I know that the fear of recurrence is always there. I was must talking about it with a friend on here earlier today! I was told, when I had been clear for 5 years, that I didn't need to attend the Gynae oncology clinic any longer. I was a bit worried about recurrence so asked if I could pay for a CA125. My CNS told me I was welcome to have one own request, whenever I wanted one, she suggested yearly. I had two, or maybe three and then didn't have any more. There is research that shows the symptoms will appear before the CAa125 starts to rise.

    I am at the ten year stage now. If I have any worries, I have the email address and phone number of the CNS. I also go to the local support group, which is run by her, where anyone who has been treated for Gynae cancers can speak confidentially to a CNS. The meetings are monthly. I go as a volunteer and help with awareness raising and fundraising, as it's such a good resource.

    Sorry this is a rambling answer, but I think that, if there were some sort of recurrence, you would know and be able to get it checked out. Has your CA125 level been low ever since your op? I hope you stay well for a long, long time yet

    Love Wendy xx

  • Where did you see this research, Wendy? I would be interested to read it. All the studies I have read suggest that CA125 begins to rise months before there are signs on scans or symptoms. Cx

  • I knew you would ask! I can't remember, I know my oncologist, Khalil Rhazvi, who has published papers on the treatment of OV, spoke about it at a support group meeting. I googled it and could only find this extract. A closer search may bring forth more evidence, but I have to go out soon. This may help?

    FROM ovariancancer.jhmi.edu/trea...

    Small tumors generally respond better to treatment, therefore early detection of recurrence may be useful. However it is important to consider that the benefits of early introduction of salvage chemotherapy are limited and may intrude upon the patient's symptom and treatment-free survival. Use of frequent clinical follow-up can detect treatment earlier. Follow-up includes bimanual pelvic examination, serial measurement of CA125 or another tumor marker, reassessment or second-look laparotomy and occasionally one or more imaging studies. However, recurrent cancer has a large spectrum of behavior making it relatively difficult to diagnose a relapse and determine the aggressiveness of the tumor.

    Second-Look Surgery

    The use of second-look surgery can help diagnose and manage ovarian cancer. In recent years there has been increasing skepticism about the benefits of this procedure. While this is the most reliable method to predict persistent cancer and prognosis, and the tumor may be resected, evidence of enhanced survival after this procedure is lacking. Patients who undergo second-look surgery usually have normal CA 125 levels. The findings of second-look surgery are: negative (defined as both grossly and microscopically negative), microscopically positive (grossly negative, but microscopically positive) and macroscopically positive (grossly and pathologically positive). Patients treated for low grade tumors, or earlier stage disease are more likely to be negative at second-look surgery than those treated for high grade or higher stage disease. Computed tomography (CT scan) of the abdomen and pelvis has been evaluated as a substitute for second look surgery, but the ability to image tumors smaller than 2cm is currently questionable. Therefore CT does not replace second look surgery, but a positive scan renders the second-look redundant. Second look surgery is only negative in 40-50% of patients with a normal CA125 level. Assessment of the size of the largest tumor during second-look surgery can help determine volume of cancer before chemotherapy (for measurement of the subsequent response), and future treatment methods e.g. a patient with a tumor size of 0.5 cm or larger usually would not benefit from further platinum-based chemotherapy, and should consider another treatment. Alternatively, patients with tumor size of 0.5 cm or smaller can benefit from intraperitoneal chemotherapy and radiotherapy.

    Treatment of Recurrent Cancer

    Patients who develop recurrent cancer despite surgery and primary chemotherapy, and will be given salvage chemotherapy, may be placed into one of three groups (A-C):

    Group A: are patients resistant to primary therapy and have shown tumor growth during treatment. This persisting tumor is considered to be refractory i.e. have absolute platinum-resistance. Secondary non-cross resistant chemotherapies or biological therapies should be considered.

    Group B: are patients who respond well to initial chemotherapy, but develop recurrent cancer within months after the end of primary care. This group with relatively platinum resistant tumor has an intermediate prognosis.

    Group C: are patients who showed a good response to primary chemotherapy, and did not develop recurrent cancer for more than 6 months after the end of primary treatment. This group with platinum-sensitive tumor shows the best responses to re-treatment with a platinum-containing regimen.

    The probability of response to salvage chemotherapy is also markedly dependent upon on the number of preceding chemotherapy regimens, such that third and fourth line chemotherapies are of limited benefit. However, unique patients responding to multiple retreatments with even the same regimen of chemotherapy are sometimes observed. Tumor burden, as assessed by the size of the largest lesion and the number of disease sites and histology (serous having the best outcome) are also independent predictors of response to salvage chemotherapy.

    Love W xx

  • This is the Ruskin study: thelancet.com/journals/lanc...

    Conflicting opinions and advice. On we go... Cx

  • Thanks! I knew somebody from our friends on here would know ;-)

    Love W xx

  • I don't know the answer to your question. Your GP if you have symptoms would be a good bet ... Plus, here too if you feel different about your abdomen. You can follow the BEAT symptom tracker from the main Ovacome site or Google.. X

  • thanks it's interesting what you say Wendy because i was clearly told that CA125 would show signs long before a scan and also that because of my surgery I would not show any symptoms until any recurrence was advanced. If anyone knows of any research or stats I would be grateful for a link. i don't want to attend groups etc I prefer to put it away and only think about it when the tests are done, atm I am still having them twice a year. I was rather hoping there would be some reassuring figures published.

    I understand that normal CA125 levels are anything between 0 and 20 but can be higher in individuals. My levels took a long time to come below 20 and it has only really been the last couple of years that they have been so low. This level taken a year ago was the lowest yet so it's very good news indeed

  • Sorry to jump in and quibble, but in case useful: Ca125 is an indicator, not an absolute measure, and I am pretty sure that this vagueness will extend to whether and when it precedes scannable tumours etc. Not only do some people never have this indicator show up for OC, it can also go up for other reasons for any of us - which is why oncologists are so keen that we do not see it as the be-all and end- all of testing for OC... The normal level us anything up to and including 34 by the way.

    Like you though it is a good indicator for me, and I was delighted to get a reading of 8 last week.... They must never forget the power of our mind and our emotions in this, we need this positive bit of indication so badly...!

  • I was told anything below 35 is OK, but they prefer it to be under 30.

    The trouble is, I believe, is it can be affected by so many other things, endometriosis, infections, etc, so it can't give any definitive results. My Onc prefers to use us scans,, patient feedback on their symptoms and a CA125 as a backup in cases of recurrences. However, they do investigate quickly and efficiently when anyone I have talked to shows concern. There is also a monthly support group with the CNS when anyone can go and discuss concerns, without needing an appointment. As Chrytynh said, there are arguments both ways.....

    Love W

  • I'm not sure they publish stats in that format. Cancer research UK has figures for 5 year, 10 year survival rates, probably 15+ too.... but I doubt there is a way to reverse engineer those figures to reveal any percentage likelihood. I think it is healthier to leave that kind of mindset behind though, as tempting as it is. You aren't a statistic. You had only suspected early stage, which has far better figures than stage 2 onward. You have already proved yourself to be on the upside of the probability curve by surviving this long. You know ca125 is an indicator for you so have that option for a test at any time in future if you get rumblings. Understanding of the telltales now, 12 years on, is better than it was, in any case, so you will be more likely to be believed and listened to than in the past (though the fight goes on...). In other words, I say: relax. Easier said than done, we know. But: you don't have anything to worry about NOW - time for that if you find you have reason, in future. But it may never, ever, happen.

    Love

    Sue xxx

  • anachronism

    There are statistics for recurrence per stage, but unfortunately I can't find them! You may be a better googler than me, so have a try, I have found them in the past. In the meantime here is an article about conditional survival (ie the longer you go the longer you will go on going) that you may find interesting:

    cancerguide.org/scurve_cond...

    As to the CA125 - I have to say it has been a mixed blessing for me. It appeared to be a good indicator during frontline treatment. However, I recurred with a CA125 of 13.2, and now we just don't know.

    I can fully understand wanting to put the whole thing behind you. I had early breast cancer and felt th same. However, a couple of tests per year for your peace of mind and extra safety is surely worth it.

    Monique x

  • Here are US data: seer.cancer.gov/publication...

    You can see that statistically there is a very very slight chance of recurrence after five years.

    I don't know the answer to this. I think it helps to be aware, as it helps to be aware of the early signs of any cancer. I hope this helps. Cx

  • Hi there,

    personally I would attend and have all the blood tests that are made available to you...just for your own peace of mind.

    Luanna x

  • Thanks everyone, your replies are reassuring I was beginning to feel like a hypochondriac for wanting to carry on with 2 tests a year. I think I will continue until they tell me not to come anymore ::)

  • Just to say that it is possible to get a recurrence without any change in CA125. I think it is good to have the CA125 tests, have any scans recommended by medical practitioners and most of all to listen to our bodies and try to be happy and enjoy life.

  • I recurred after 19 years and it was in my spleen.

  • wow sorry to hear that Dahlia may I ask what level you had first time around? and how did you realise it had come back

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