Clear cell ovarian cancer

[Rexrescue]

Hi, I was discharged from my oncologist in February and told I was to have gyny/onc appointments every three months for the first year at my own hospital. My referral seems to have been lost but I have managed to get an appointment in mid July. As my cancer was clear cell ovarian cancer I am worried that it will recur but my oncology nurse told me I did not need a test for tumor markers as any infection would increase the numbers. After mulling this over I rang them back and managed to get an appointment for a blood test before the registrar appointment. I do not feel confident with the way my case is being handled, when I was discharged I still had ascites and was not quite healed from the surgery although these were improving. I am feeling really confused and worried by the whole thing.

[Lyndy]

I would ask for a second opinion, preferably from a specialist centre.

Even if they have a good reason for doing this they have failed to explain it to you xx

[Hidden]

Hey.I'm clear cell too and waiting on my ct scan results to make sure I'm NED.

CA125 test is not a clear indicated for clear cell as the readings are usually always quite low, but an increase is what they should be looking for so I disagree with the nurse, as for scans my oncologist has advised me i will get 6 monthly ct scans for the first 2-3 years then 1 a year for year 4 and 5.

Clear cell is very rare and does have a high recurrance rate, but if caught early totally treatable.

I would defo get a second opinion and demand the appropriate care and support you truly deserve after the long scary journey you have been on.

We all love and support our NHS, they have been amazing for me but remember you are the patient and their job is to look after you so please make sure you get the after care you deserve x

[carrotmunch5]

Hi Rexrescue. Like Lindsay said, I would go for second opinion. Or have a chat with your oncologist, tell them how you feel, you would like CA125 to get tasted regularly. I have metastatic clear cell OC, now I have recurred tumour in my liver where I had ablation last year. I understand for some it's not very accurate, but for me, it is. Regularly monitoring CA125 has helped to spot early. And I feel better too, being monitored. We are going through challenging time, if we can reduce our worry and stress, we have more space to look after our wellbeing mentally, physically and emotionally. Thinking of you, sending you love and hugs 💕🙏💕🙏💕🙏

[delia2]

Hi. I echo what the others have said. You need to be your own advocate. The norm is to be checked every three months for at least two years then every six months. cA125 is not an indicator for me but they always check it. It sounds like you fell through the cracks.

[Rexrescue in reply to delia2]

Hi, thank you all for replying to me. I managed to get a ca 125 test on the third request, not from the oncology nurses but from the lady in the office? The doctor was quite dismissive of the cancer being clear cell saying it wasn't serious and he could hardly be bothered to look up the blood test result. He said I was fine and would get a recall in 3 months and begrudgingly printed a form for a blood test at that time. I know my clear cell was caught early but I do worry about it returning

[OvacomeSupport Partner My Ovacome Team]

Dear Rexrescue,

Thank you for sharing your experience here. I'm sorry to hear that you are feeling confused and worried at the moment. Some of our members have already posted helpful replies.

We know from our members that they often find that seeking a second opinion from another doctor can be useful. We have an information booklet on this topic, which includes the potential advantages and disadvantages of seeking a second opinion, and how to go about this if this would be of interest to you. The link to the online form of this booklet is here: ovacome.org.uk/getting-a-se.... We can also post a paper copy of this to you, free of charge, if you prefer?

We are on hand to support you. If you have any particular questions, or anything that you would like to talk through, please feel free to get in touch. You can give us a call on 0800 708 0054, or send us an email at [e-mail]. We're here from Monday to Friday, 10am - 5pm.

Best wishes,

Alice - Ovacome Support