i am coming up for my first visit after 6 weeks... - My Ovacome

My Ovacome

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i am coming up for my first visit after 6 weeks, then told it would be every 3 months. I know they use CA125 as a marker but is a scan

nikki9 profile image
6 Replies

given every year? xx

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nikki9 profile image
nikki9
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6 Replies

Hi Nikki,

Good luck with your checks!

I had a CT scan on diagnosis, another after surgery, another at the end of chemo, and one after each year. I don't think all oncology departments (or Consultants) do exactly the same thing, though, so I would ask when you see them.

Isadora.

I don't know either. They use scans every so often to make sure the dreaded lergy, or whatever you call OC, isn't creeping back. Please try not to worry too much. Good Luck!

Hi nikki9.

I have my CA125 tested every three months, but as I am still in remission 21 months down the line (and long may it last ) they are talking of letting me go every 6 months if this next test is ok, and thats in 4 wks time.

I also have to have an Ultrasound every 6 months. They say this is fine to use at the moment.

You could always ring your Hosp and speak to your Oncol Nurse, she is there for you and will tell you what they are going to do for you.

Dont worry (if thats possible) it will all fall into place and you will get a steady routine to follow like the rest of us.

Take care. x

Tulsa profile image
Tulsa

Hi Nikk9

There does not seem to be any hard and fast rules. I had a ct scan when my chemo was finished in January then before my 3 month check had CA125 done. But at that visit my consultant said they do not routinely check CA125. She said I could get it done by my GP if I wanted. I thought this a little strange at the time but now I think that perhaps the oncologists don't hold too much store with the test at this stage. Saying I could go to my GP must just be to give me peace of mind.

Has anyone else been told this?

I have my next check up in 3 weeks so I must be prepared to ask more questions and not just sit and nod. Although I was a nurse in a past life I feel I have been very slow getting to grips with the whole process even though I am a year and a bit down the line.

Sorry i am digressing a bit but one thing just leads to another.

Tulsa

in reply to Tulsa

"Although I was a nurse in a past life I feel I have been very slow getting to grips with the whole process even though I am a year and a bit down the line. "

Just wanted to say; I think that this can be a coping mechanism, Tulsa. Some of us want to know everything, others want to know less, and perhaps, as a nurse, you need to feel a bit more distanced from the process?

I have used my GP to check my ca125 whenever I was feeling shaky, and it's been invaluable. Having said that, my oncologist is adamant that he needs that test, a scan and an examination to diagnose cancer - not just one of those.

Isadora.

RuthPOvacome profile image
RuthPOvacome

Hi I am one of the support line nurses at Ovacome and I am sorry to hear about the confusion you are experiencing as far as follow up is concerned. It does seem to vary from hospital to hospital but in general the first follow up appointment maybe in 6 weeks although it is often not till 3 months and then it is usually 3 monthly for a while and then 6 monthly. Scans tend not to be done unless there is a problem and it seems that Ca125 blood tests are not always done unless there are worrying symptoms. As a few people have said we are all individuals and some people need to know what there Ca125 and if they don't know they will spend their time worrying about what is happening whereas other people will be very concerned if they know their reading has gone up just a few points. It might be helpful to discuss with your specialist nurse exactly what you feel you need so that you can feel supported by the follow up process rather than being left in the dark. There are moves in place to make sure that everyone is followed up in the best way for them as an individual rather than everyone being followed up in exactly the same way. If you want to discus things further please feel free to give us a ring on 08453710554

Best Wishes

Ruth