Forum Discussion

janinaj's avatar
janinaj
Member
12 years ago

To wait or not to wait.....

Hi again, It's been eleven days now since surgery. I have had my follow up appointment with Dr Elston and have received the news that 7/15 lymph nodes removed were cancerous so radiation will be necessary in addition to the chemo and hormone therapy. What is concerning me at the moment is that when I was leaving I was told that I could be waiting until March to get an appointment for a ct scan. Either they are significantly backed up in Cairns or it's the Christmas period that is causing the problem. Either way, I told the nurse that it seemed important that I have scans performed before I start chemo so she tried her best but who knows.... Am I right? Does it matter? I'm also wondering whether I should be worried about the fact that I haven't heard from any specialists yet. I have Grade 3, Stage 3 IDC and DCIS with Lymph involvement. And, I'm young which apparently means that the cancer is more aggressive and spreads more quickly. So, the waiting is not so much fun... It has only been 11 days so I could be worrying about nothing but... I'd like to be sure... Looking for advice on whether I should start chasing anyone or if waiting is the right thing to do right now? Also, can anyone recommend any good specialists in Cairns, Queensland? Or any not so good ones to look out for? Thanks in advance, Janina xoxo

9 Replies

  • janinaj's avatar
    janinaj
    Member
    12 years ago
    Hi Deanne, I had a lovely BC nurse who helped me through surgery but at the last appointment told me that she won't be with me from here on in. I asked if there was another person that would take her place and she said that there is a coordinator but they probably won't have much time. I must say I'm feeling pretty abandoned ATM but you guys have geed me up to get on the phone and and start asking questions. Thanks again. Janina x
  • janinaj's avatar
    janinaj
    Member
    12 years ago
    Ok, thanks ladies. That makes it very clear to me. I'll start chasing today. Will let you know how I go. Thanks again, Janina
  • janinaj's avatar
    janinaj
    Member
    12 years ago
    Ok, thanks ladies. That makes it very clear to me. I'll start chasing today. Will let you know how I go. Thanks again, Janina
  • janinaj's avatar
    janinaj
    Member
    12 years ago
    Ok, thanks ladies. That makes it very clear to me. I'll start chasing today. Will let you know how I go. Thanks again, Janina
  • carrol's avatar
    carrol
    Member
    12 years ago

    Dont wait - start asking questions  - the ladies are right should all be rolling on - you should have met or have appointments with members of your breast care team and aware of what is going on and when !!

     

    all the best carrol  from Sydney xx

  • jillden's avatar
    jillden
    Member
    12 years ago

    I can only echo what the other ladies have said. Treatment should be rolling for you now, one thing after the other. The doctors and health professionals should be working as a team and getting this organised for you. 

    I am not from Cairns either, but I would be making a lot of noise to get things happening NOW!

    All the best,    JILL   xx

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    I am not from Cairns either,but March is ludicrous! Hopefully someone from your area will get on here today to offer some help.Sending a big hug and good wishes.xoxoxRobyn
  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    I agree with everything Deanne has said.  You will need to become a squeeky wheel and chase this up.   Keep asking lots of questions.  I have just started this journey but I know that if something doesn't sound right like your situation, I will be asking lots of questions and following up.

    Let us know how you get on with this Janina.  Sending lots of love to you.

     

    Joy xx 

  • Deanne's avatar
    Deanne
    Member
    12 years ago
    This is not good enough. Start chasing. Do you have a breast care nurse that can support you? Waiting until March for a CT scan for anyone with BC diagnosed in November is ridiculous. You need to feel that someone is in charge of your care and is on your side. What is the next step for you? Do you have an appointment and referral for an oncologist? I am not from Cairns so cannot help with who is good or not. I feel so concerned for you and wish that I could be of more help. The beginning is hard for all of us but does not need to be made harder by an inefficient health system. I hope you can get onto someone to help speed things up. Sending lots of cyber support your way. (((((0))))) Deanne xxxxx