Confused

Had review after surgery today back on avastin and wait for ga markers start moving again my family are struggling get their heads round why avastin if they got all cancer from abdomen they think that means am cured have tried explain stage four advanced us treatable not curable this cancer is so hard to explain to them my daughter understand but struggling with my son's

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  • You are not alone, it is incredibly difficult as most people want to hear that you are cured and personally I have found it very difficult to have converstaions around how my Ovarian Cancer is not curable. My cancer has returned three times and each time it has returned I can see that my family find it more difficult to take in each time. Sometimes talking to the CNS nurse with family can help but everyone takes time to take to come to terms with what is happening to someone they love.

    Take care love Wendy xx

  • I totally agree with what's been said. I think we ladies with OC come to terms with the fact that we cannot be 'cured' and will always have a fear that IT comes back or indeed in some cases, like mine, never goes.

    My family cannot come to terms with the fact that we "have to learn to live with cancer" and as long as my oncologist says she can treat me I will live with it.

    I try to remain as upbeat as possible when around family and friends and have my darker moments when I am alone.

    How many Avastins have you had? Are they going to treat you with anymore chemo?

    Good luck and take care, Irene xx

  • I would suggest that you approach your gynae liason nurse or macmillan nurses and discuss this problem. I think family at times are inclined to wear blinkers where we are concerned. In their minds, we are okay if we are up and about. I am on Avastin every three weeks at the moment and I do remind family that its not seven up or smarties I am getting. I originally asked my husband to speak to my consultant when diagnosed but he refused. Perhaps when going for your next treatment and appointment, bring a member of the family along. I used do this on my own but now I have learned my lesson. In fact the gynae liason nurse insisted I bring some one with me to all appointments. It is good because that person will remember something said at the consult that we dont. Hoping that things will sort themselves out.

  • I find that hard too. One of my daughters was really shocked when I had my recurrence. She said 'oh but I thought it was gone'. I'm sure I had explained when IO was first treated but I don't think she wanted to hear what I was saying, or it was all just too much to take in.

  • Just to add - I agree that it's a good idea to have someone at appointments. I forget to ask questions but mt partner remembers.

  • I too have to get my mind around this concept of a chronic disease. I had surgery to remove everything at end of May followed by chemo within three weeks. Friends and family could understand my limitations and difficulties at that time...so obvious due to huge surgery...but as the treatment goes forward (chemo), people seem to drop off. They don't understand chemo and surely don't get it that Ov. Ca. goes away, only to perhaps (or not) return...and all the chemo I have done won't provide "cure." Is it that they don't want to understand. I think of other things like MS or diabetes or heart disease...and other chronic situations to try to help them with this. Also, I have tried to think this way (chronic) so that if/when/ever I get recurrence, I won't be so devastated I cannot continue to fight.

    J.

  • Think I will try thinking of it as chronic see if it works can't do any harm like you say will maybe stop the down moments when wonder if it's worth keep going on with treatment x

  • It's my defense against recurrence so I won't be devastated if it returns....

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