6 months till first review?: Hello lovely ladies... - My Ovacome

My Ovacome

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6 months till first review?

Sisterstogether profile image
22 Replies

Hello lovely ladies

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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22 Replies
Seasun36-uk profile image
Seasun36-uk

Hi there,

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.

Best wishes,

Linda x

Sisterstogether profile image
Sisterstogether in reply to Seasun36-uk

Thank you for your good advice Linda.

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 😊

I hope you are doing well Linda

Best wishes

Jackie x

Seasun36-uk profile image
Seasun36-uk in reply to Sisterstogether

Hi again Jackie,

How fortunate that you have that blood form!

Yes, intuition is amazing. I felt ‘something’ was wrong (after 18mths) & my CA125 was creeping up. Then watch & wait. Now on first recurrence.

5th (out of 6) chemos this Friday, all being well.

All good wishes,

Linda x 🌻

Sisterstogether profile image
Sisterstogether in reply to Seasun36-uk

Hi Linda

Yes the universe provides you with everything you need ( blood form) 😊

Good luck with your 5th Chemo.

Jackie x

PS I love 😍 Giraffes 🦒

Cropcrop profile image
Cropcrop

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

Sisterstogether profile image
Sisterstogether in reply to Cropcrop

Thank you for your reply Jane

You are so right when you say ‘we have been in the cocoon ‘ everything then stops which is very scary.

I’m definitely going to have a blood test via my GP so she can discuss the results with me.

I feel between all of us I have a definite plan in place for 3 months time now and that has reassured me 👍

Take care Jane

Jackie xx

Artgreen profile image
Artgreen

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 .

9 is a great ca125 result!

Love

Alex x

Sisterstogether profile image
Sisterstogether in reply to Artgreen

Thank you for your reply Alex

I’m really happy my CA125 is 9

before surgery/Chemo it was 157.

Feeling reassured the fabulous ladies on this forum have sorted a plan of action for me in 3 months time 😊

Hope your doing well Alex

Jackie xx

Sisterstogether profile image
Sisterstogether

Thank you for your reply Alex

I’m really happy my CA125 is 9

before surgery/Chemo it was 157.

Feeling reassured the fabulous ladies on this forum have sorted a plan of action for me in 3 months time 😊

Hope your doing well Alex

Jackie xx

January-2016-UK profile image
January-2016-UK

Hello

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.

All the best, Helen

Sisterstogether profile image
Sisterstogether in reply to January-2016-UK

Hello Helen, thank you for your reply.

My instinct is telling me to act at 3 months.

If there’s just 1 thing Cancer has taught me it is to put yourself first.

I think it’s totally unacceptable I have been given a 6 month appointment ( I’ve had a couple of days to think about how wrong it is now) 😊

I’m so glad you had the blood test at your review

How are you now?

Jackie x

Sisterstogether profile image
Sisterstogether

Hello Helen, thank you for your reply.

My instinct is telling me to act at 3 months.

If there’s just 1 thing Cancer has taught me it is to put yourself first.

I think it’s totally unacceptable I have been given a 6 month appointment ( I’ve had a couple of days to think about how wrong it is now) 😊

I’m so glad you had the blood test at your review

How are you now?

Jackie x

January-2016-UK profile image
January-2016-UK

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.

All the best!

Sisterstogether profile image
Sisterstogether in reply to January-2016-UK

Hello Helen

I’ve just read your profile, it doesn’t seem you have had much respite from this dreadful cancer.😞

It is good you have tolerated your treatment well and have responded well.😊

Thank you again Helen for sharing your experience. I will definitely have the CA125 blood test at 3 months 👍

Wishing you all the best in your current treatment.

Jackie xx

Lizchips profile image
Lizchips

I went every 3 months for 5 yrs, now I go every 6 months. I'm in US. Liz

Heatherslade profile image
Heatherslade

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.

Sisterstogether profile image
Sisterstogether in reply to Heatherslade

Hi Heatherslade

Thank you for your reply.

Your right we must avoid hospitals as much as possible. I have to look at it positively and trust my oncologist decision.

I hope you are doing well.

Jackie x

Realistic profile image
Realistic

I know just how you feel, lve not seen my consultant since last year. And like you

Sometimes l worry if my backs bad or have the runs for no apprant reason.

And l am quite a tough person that's with myself but sometime l find it hard

Sending love & hugs xx

Sisterstogether profile image
Sisterstogether in reply to Realistic

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 🤗

Jackie x 🦋🌈

Realistic profile image
Realistic

Yes it helps reading these posts for me, makes me realise that other people have the very same problems as us, were altogether on this stay positive

XxSheila F

AlaNtO profile image
AlaNtO

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.

Sisterstogether profile image
Sisterstogether in reply to AlaNtO

Thank you for your reply. Your words have really motivated me to make positive changes and thoughts about my diagnosis. God bless you 🙏🦋🌈

Jackie x

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