Waiting game

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Hi Wave  I am currently waiting on the results of my CT scan and am really struggling with the ups and downs of how I am feeling at this time. I have a raised CA125 of 64 with two complex ovarian cysts with vascularity, one measuring 7cm and the other 10cm. I have lost 2 stone in weight since Christmas because I always feel full. I am very worried as I've been told by consultant I need full hysterectomy with midline cut 

My parents are great supporters but my husband is not fully acknowledging the way I feel as he thinks it will all be fine 

I understand that but I can't help feeling stressed about it all.

Any advice welcome x

  • I’m 72 and found out I’d got OC My ca125 was 18000, I had a pelvic debulking in June breast to pelvic area full hysterectomy.  Surgeon managed to get it all.  Had 2nd Round of  chemo last week, CA125 now down to 10.  My husband the same,  hardly any suppport from him and understand where you are coming from.  He just says you’ll be fine.  Drives me mad.  I’m still stressed about everything.  Hair shaved off and his answer is it will grow again.  I know that but it’s the  dignity of losing my hair.  MEN 

  • Hi Trish 

    I hope you had lots of support from other avenues as that sounds like a huge amount to go through XX I think the men bury their heads but we need them to step up and take care of us. I'm normally very resilient but I do worry as I have a 20 year old daughter (only child) and very little family x 

  • Hi, daughter and son been great support.  Daughter was due with 5th grandchild while I was having my op, very stressful time. But both safely delivered and I’ve recovered well from ok and 6 rounds of chemo, 2 down.   Hope all goes well for you nog nice waiting for results. 

  • The waiting is very hard. I phoned the helpline a while back and spoke with a nurse who really helped, she understood and said exactly what I needed to hear.

    About men going into denial or whatever it is... I no longer have a partner but when I did the loss of a baby (many years ago) was I think what bust our marriage because although I know he had feelings, of course he did, he could not express them, apparently grieve or offer any real support.

    May be have no expectations and he may be able to offer small things that are the best he can do because for sure he will be worrying but for some reason can't find words - just my thoughts. Take care xx

  • Very similar to me!!! Just had total abdominal hysterectomy, bilateral salpingoopherectomy, and omentectomy and washings!!! After finding an abdominal lump after weight loss!

    consultant always said he thought it was benign but apparently not! Stage 1b clear cell carcinoma!!!

    husband was always on the positive side!

    • the waiting is the worst time!!! Because we are all good at making up stories in our head!
    • Hope by now you have had surgery and are recovering. 
      please let us know!