Scared they’ve changed their mind!

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So I have my first oncology appointment tomorrow.

last week I was called in over a concern over a lymph node on the opposite side to my tumour but it turned out ok. Also at that time I briefly saw my surgeon who told me the good news that all my tests had come back clear and there was no spread. She also briefly went over the treatment plan and the fact I will have chemo, mastectomy and the chemo and radio. But for the past couple of days I can feel myself getting more and more worked up. When I began this journey, three docs (at my docs surgery) and the same said surgeon from the hospital had thought this was in fact a cyst and at the very last minute, when I went in for it to be drained,they said it was cancer. What happens if they change their mind tomorrow and tell me ‘well actually we’ve found something else’ even though last week they told me it was all clear. It’s playing very heavy on my mind. I suppose the only positive is that since last weeks visit I’ve been sent my paperwork to get a wig, so maybe everything is just moving forwards as it should be.

im just worried and scared. You seem to get one thing out of the way, then a new worry comes to fruition. I want to be positive but .... I’m just scared I’m going to loose this fight and I’ve not even started treatment 

  • FormerMember
    FormerMember

    Oh gosh I do feel for you. So difficult when you have had so much info and it has changed over time. I don't think any of us cope with the not knowing part of our journey very well. It does sound as if the plan is coming together now. I do think doctors try really hard to " keep you in the loop" but the what ifs whizzing in our heads keep getting in the way.

    It is highly unlikely that having seen your surgeon last week anything will have changed. I'm  going for my first appt with oncologist on Thursday. Just think you will know exactly what is going to happen by then.

    Wishing you all the best. I do breathing exercises to calm me down, in for 7 out for 11 it really helps me.  I'll  be thinking of you tomorrow.

  • Dear ,

    In a way I don't know how to answer you.  Thinking about it all and with what you have said you need to speak up about this.

    When you see the Oncologist tomorrow 'ask questions' ..... Ask things like....

    How do they know it is 'C'

    What 'changed' from the first time when they said it was a 'cyst'?

    Why did the diagnosis 'change'

    Have they 'double checked' your results?

    What type of 'C' is it?

    These are a few questions I am thinking of off the top of my head.

    You need to ask, and ask, you have to be sure they have everything correct - it is no good 'not speaking up - you HAVE to do this for your own peace of mind'.

    This journey is scary and at first we don't take things in, then we look back and think and wonder.  Remember you are only in there thoughts either at your appointment or when they have their meetings - so for both yourself and for them 'you need to bring all this to there attention - so it can be checked'. 

    Another thought.... Did you have a biopsy? 

    Hoping you ask questions and get straight answers that can clear the worry from your mind over this.

    Sending love and hugs xxx

    I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
  • FormerMember
    FormerMember in reply to WhatHappened

    Hi Yanyan,

    I absolutely agree with WhatHappened. You need to ask questions.

    They are probably just trying to keep you informed, but when things change as they learn more from your test results it can sound as though they are confused. 

    I always take a list of questions, with room to write down the answers, and I make sure I go through them even if the consultation seems to have provided answers or has gone in some other direction. There is so much to take in, I found I was assuming things or missing them. So now it's a list every time. And I add to it during the session if I need to.

    I also try to have someone with me as a second pair of ears for all the big consultations. Also with pencil and paper. And we just keep asking until we understand. Nobody has ever minded.

    I hope your appointment goes well and you get the answers you need.

    Xx

  • FormerMember
    FormerMember in reply to FormerMember

    Always good to write down the questions you would like to ask.

    A lot of undue upset is caused when outcomes do not match expectations. I will try to explain. Imagine you've ordered a new sofa and you are told it will arrive in 3 weeks and it takes 6. Result you are upset and disappointed. OR you are told it will take 6 weeks and it arrives in 3.  You were given reassurance early on that probably just a cyst and then after tests the news was less good. This puts you on the back foot for how you handle this. I'm  sorry this happened but I'm  sure you will feel less panicky after today's  consultation. Sending cyber hugs.

  • Thanks everyone for your replies. 
    I know why they changed the diagnosis from a cyst to a tumour and I know I have triple negative breast cancer. But what I mean is, they told me it hadn’t spread last Thursday. I’m scared they are going to tell me it’s spread today ( when I’ve had no more tests). It’s just a fear after originally four docs thought it was a cyst. 

  • FormerMember
    FormerMember in reply to Yanyan10

    Nothing we say will help that fear because you have already got a reasonable answer yourself and sometimes even that doesn't  help when you are frightened.    But not long to wait now. Xx

  • Good luck today,  the extra tests were to clarify things abbs the one you had was more detailed than the ultrasound. Let its know how you get on!

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • Londonmum that Stephen Hawking quote ..... Heart

  • Just a quick update. I’ll start chemo next week. 6 sessions, 3 weeks apart, then surgery. X

  • Are you feeling a bit better now you know plan?