Length of follow up for borderline tumours ?

Hi ladies

I am seeing my consultant next week for my six month check up , so feeling a bit anxious .

I just want to check how long ladies with borderline or stage 1 or 2 tumours are followed up for ? I was told once five years , then seven years . I had the full tah / bso three and a bit years ago with so far no recurrence. I do have on going abdominal pain though.

It would be helpful to know what others have been told.

Many thanks

Love as always to you all

Charlie xxxx

9 Replies

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  • Sorry Charlie I can't help, but I'm sure someone will, if not try Good Old Ruth!!

    You've done really well, sometimes you forget that you ever had OV. Then the checkup arrives!!!

    Good luck for next week.

    Luv'n'hugs

    Sue x

  • Thanks Sue , yes I will give Ruth a call.

    Xx

  • Hi Charlie, I'm a borderline too! I had check ups for 5 years and then asked for a CA125 test every year, which I arranged with the CNS on request, just to put aside any fears about not being monitored after the 5 yrs was up. I had two years of this then decided to give CA125s a miss unless I felt something weird was happening. I have the CNS's email so I can get in touch without going via the GP, so I feel sure anything worrying would be followed up a s a p. I haven't had any follow up at all for 3 years now, but I do go to the support group meetings pretty often, partly to help with fundraising and to keep in touch and to chat with other women who are newly diagnosed. I still gave a minor panic whenever I feel a strange new twinge though. I think we all live under that shadow :-o I hope your pain is not too bad. What do they say us casing it? I had some weird pains that they thought were bladder or kidney problems but turned out to be scar tissue, they thought!?!? So far so good though.

    Love Wendy xx

  • Sorry for weird typos, tired eyes and iPhone!

    W xx

  • Hi, I am borderline 1c. My follow ups are every 6 months with a ca125 but only for 2 years.

    The problem with us borderline cases is that there is no standard to follow my Ono. Gynea admitted that a lot if borderline monitoring is based on antidotal evidence as there is no real research on our group, this is why the follow ups vary from NHS trust to trust.

    Be strong and know that your body will tell you when something is not right

    Xx Trish

  • Hi ladies

    Thanks so much for your replies. I know that our situation is thousands of times easier than many many others , but this vagueness does not inspire confidence in the process. I have had pain in my side since before the tumour was discovered . After the operation I had terrible pain in the scar area , which I still have but is kind of controlled by medication.

    By the way Wendy have a wonderful wedding anniversary trip .

    Thanks again

    Charlie xxx

  • My 2nd opinion at the royal Marsden advised 3 monthly follow up with ca 125 test each time for 2 years. I never got past 14 months as I reoccured so can't remember what they recommended after that.

  • Thanks , this is really helpful. Good to hear from you and I hope you are making good progress.xx

  • My oncologist said they would be keeping an eye on me for the next 20 years- this may have been a throw away statement but she said with some Borderline tumors there is a minimal chance of late recurrance - 15 years or so therefore they want to keep monitoring for the foreseeable future.

    C

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