I was due to see my consultant tomorrow following completion of first line treatment for OC. I received a call today from his registrar, due to the Coronavirus they were conducting outpatient appointments over the phone. Everything is okay and my CA125 is 9 but My next review is in 6 months time! I was pretty surprised when she said that it caught me off guard and I didn’t question it. I was expecting 3 months initially.
It probably is due to the Coronavirus but has any other teal warriors waited 6 months? It seems along time and I think my anxiety levels will be high by then. She did say any problems/ symptoms to contact them but every little pain I have I think the cancer is back 😔
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I agree: 3 months is preferable for your next check up.
How about asking your GP for a CA125 in 3 months time? I did this (my Oncology Dept didn’t do routine CA125 tests). He was very supportive & I had the test which was slightly raised, but this was 18 months after FLT.
It’s amazing how your intuition tells you if something is wrong.
In 3 months, all things being equal, it’s unlikely, but do ring your CNS, the Consultant’s secretary or your GP if you are worried.
I have an extra blood form given to me ages ago by my consultant and Had decided to go to the blood clinic in 3 months time and have them done because there’s no date on it. Lol
I do have an excellent GP tho who would do a repeat ca125 if I asked because of my anxiety.
I am a very intuitive person and believe this is your life’s compass and bodies way of communicating when something is wrong or right 😊
Linda has nailed this. Have your bloods done, if the CA125 is steady and you’re not symptomatic then you should be fine. It’s good thought that you’ve been given the caveat you can ring your oncology team if you’re concerned at all.
It’s always really scary once your treatment ends and you’re ‘let loose’ into the world, we’ve been in the cocoon of being regularly treated and looked after and now that’s changed but you will adjust and actually start to enjoy your freedom.
Take care and be safe in these troublesome times ❤️Xx Jane
I’d try to get your bloods done and ask your GPs for the results to put your mind at rest like Linda suggests. 6 months is too long for your emotional well being .
I would strongly advise you follow the advice here and ask your GP to check your CA-125 at three months. After first line treatment I had a CA-125 of 35 (down from 1205) and NED. My first review was after three months (with my surgeon as my hospital alternated between oncology and surgery). Everything appeared to be fine, my surgeon was very pleased and there was absolutely nothing wrong with me. I was so excited. The next evening I got a call from the surgeon to say the blood test he'd ordered had come back with a CA-125 of 1250. I was to come in the next day to have it repeated. It was accurate alright and a CT-scan was ordered and I'd recurred in some para-aortic lymph nodes and started a trial within two weeks. Again, I repeat, I had no inkling, no symptoms. How much longer that might have been the case, I cannot of course say.
I've had five lines of treatment altogether. I tolerate the treatments well and they work well, but unfortunately it isn't long before the cancer is back again. I am currently expecting a scan within the next two weeks. My oncology appointment was changed to a telephone review, which since the result of a face-to-face meeting would have meant I needed a scan anyway, at least saved me a visit to London.
Do have your CA-125 tested at three months but don't hesitate to phone your team if you should experience symptoms beforehand.
Hi there and just noticed your recent post. Your CA 125 level is good and should not worry too much about 6 monthly appointments. I was diagnosed with OC 3c summer of 2018. This was diagnosed after an op for bowel cancer at Christies, which fortunately included a full hysterectomy and removal of omentum etc followed by heated chemo treatment. Was referred back to City Hospital Nottingham for standard chemo treatment. When CA seemed stable at 9 or similar and after a year I have been on 6 monthly checks. Am due one this month but unlikely to go ahead. I think it is best if possible to keep away from hospital at this time unless absolutely necessary. If you feel well and have no worrying symptoms I am sure it will be fine. Its a good sign if oncologist happy to leave your check ups for 6 months so I don't think there is any need to worry.
Thank you for your reply Realistic. It’s been a tough 6 months tbh, with my anxiety.made even worse with Covid and lockdown. I did ask my GP in June for a CA125 test and it came back 8 which reassured me for a while. I am learning to manage my anxiety more positively through meditation and have little treats along the way, which make me smile from the inside and gives me something to look forward to.😊
Like you I’m usually a very strong level headed person but this Cancer has really changed me. How can Cancer not change you!
Thank goodness for this website and all the beautiful supportive members 🙏
I hope you are finding ways to manage your worry. Sending love and warm hugs 🤗
This is an awful disease to overcome especially with the pandemic making it even more difficult. When I read of the courage of those undergoing treatment I salute you. To all our cancer fighters and survivors, remember, this illness does not define you. You are defined by your admirable ability to find the strength and courage to continue fighting each day. May your days ahead continue to be filled positivity instead of doubt, optimism instead of fear and determination instead of feelings of defeat.
Keep fighting, keep believing and above all, allow your hope and faith to keep you grounded.
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