Cross and anxious all rolled into one

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Hi I have a large Leimyosarcoma in the womb - a nasty rare sod of a cancer. I have also mets in my lungs and liver so all in all a rubbish diagnosis having had no symptoms whatsoever. I met my oncologist in October this year after diagnosis - I needed facts - I was told my cancer was incurable but treatment would be given - to be strong and positive. I asked my actual prognosis and he replied I can’t give you that - I couldn’t tell anyone’s future - let’s try the treatment and see.

Roll on 5 weeks and I have had two cycles of doxurubicin and he requested a catch up video call to see how things were going. I explained I’d had some side effects, but my biggest issue was mentally coping with my prognosis and coming to terms with what has happened to me and our family. He then told me he didn’t think the chemo would work. He proceeded to tell me he thought I had between 12-18 months left. He didn’t discuss any other treatment or anything else. Im fitted with a catheter and asked when or if it could be removed - he replied that’s up to you. 

I came away so tearful, so upset - I know the facts of my cancer, I know I’m incurable but the video call was so upsetting without any evidence or facts. If this had been after cycle 3 and scans to go with it - I could understand, but I haven’t had any scans or tests since the original diagnosis.

I just needed a rant - I’m sorry. Xxxxxx 

  • Hi boo12, welcome to the group, I know you would rather not join but we're all here. You oncologist needs a lesson in bed side maners. You will find on this sight lots of support from people who no what you feel like. Firstly I was given 12 to 18 months 3 years ago, I'm still here, there are friends here 5,7,9 years over there sell by date, doctors are human not gods so they don't  really no. They go on averages. When you get your next appointment make a list of every thing uou want to ask. Have somebody with you so they can pick up anything uou miss. I'm sending hugs and good vibes to you xx

    Moi

  • hi, what a shame and a terrible experience for you :-(.  You are so "early on" in your treatment and there has not been much time since your diagnosis last month.  You need a few months to come to terms with it yourself.  Your oncologist should understand this and be a little more open minded and be sharing options and approaches about your cancer in a non-confrontational way.   If he wants you to make decisions then he needs to present the options and the pros and cons of each, and expect you to want to take it away to think about before making a decision.    

    I'm not surprised you are having problems with recent events - and he should be giving you some direction to move forwards with this.  Most places would have nurse specialists to support you with this, or there might be a Maggies nearby?  Or I would try the helpline on here as they will definitely have some ideas.  I've phoned them before.  They are lovely and it's nice to talk to someone who understands what you are going through.  

    I do find it strange he told you he didn't think chemo would work.  For goodness sake, doctors love patients to have a positive attitude and he is feeding you negative vibes!   I think you need to have a "rant" at him and give him some feedback at how upset he made you feel.   I'm cross on your behalf xx

  • Hi Boo,

    I've spoken to you on the womb site. It sounds as if you want rid of the catheter. Who put it in and why? Could you not pass water due to the size of the tumour? I would query with whoever put it in or your CNS.

    A x

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  • Just wanted to add my support and give you a hug. Your oncologist needs a reminder that words have power and that he should use his in a more intelligent manner. I feel angry on your behalf too.  Rainie x

  • Hi Boo, I can see why you are cross and anxious, your oncologist sounds to have messed you around and misled you. Glad that you have found this page to have your rant, I hope you stay for the support and the fun too.

    Have some more hugs and good vibes from me xxx

    Sarah 

  • Thankyou - yes I will I’ve started to make a list of things already 

  • Yes that’s why I had it fitted. They are waiting until my 3rd cycle and then scans etc and “If “ there is any reduction then potentially they may try me without it. 

    thanks x 

  • Thankyou for your kind words x 

  • Thankyou that is kind x 

  • Fingers crossed for you Boo,

    Xxx

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm