Forum Discussion

Gr8ful-jen's avatar
21 days ago

So it turns out waiting is not for me….

Hi everyone- my name is Jenni and I was diagnosed last Tuesday 28/07/26  with invasive ductal carcinoma and DCIS. I was told a surgeon would be in touch within the  week after getting a referral the same day.  I have since requested my GPs reception to forward the referral twice - and was met with such hostility I will change doctors. We found out today that the referral was still not sent and hadn't got to where it needed to go. So my husband did a round trip (over an hour as we live in rural Vic) and  went and got a hard copy from my GP and took it to the cancer care clinic as instructed via phone- to be told they did not need it yet and he nicely insisted she take a copy and give it to my BC nurse - I am so overwhelmed- how quickly should surgery be happening? I’m sorry to vent but its been a lot ❤️🌸

9 Replies

  • Hi, I can't tell you how quickly your treatment should be.  I just came here to give you some ears. You are not alone.  This is definitely a place to vent.

    I was diagnosed last Tuesday too 28/07 - early breast cancer.  I am in metro Brisbane, so our experiences and resources will probably look different.  I haven't seen a specialist yet but I do have an appointment. The first thing comes to mind is to call and speak to one of the BCNA staff on the helpline.  I have used it already to ask a couple of questions and the info given was so helpful.   

    All the best, and again, you are not alone. 

    • Gr8ful-jen's avatar
      Gr8ful-jen
      Member

      Thank you so much. ❤️ Your message really touched me. I smiled when you said you were “just here to give me some ears” because that’s exactly what I needed tonight. It’s strange to think we were both diagnosed on the very same day. I hope your appointment comes around quickly and gives you some clarity. Thank you for taking the time to reach out to me. It means so much to know I’m not walking this path alone. 💗

  • Gr8ful-jen​ It sounds like you've been let down by the GP practice. It's great (though it should not be necessary) that you and your husband are chasing things up. 

    In my own experience I've had some hiccups with missing communication so at times it has taken effort to keep the ball rolling. And I'm thankful that when they've realised they've dropped the ball, the various people have quickly made the next steps happen.

    Having said that, I have been reassured that a week or two delay in my own case was not going to make any difference. For instance my second surgery was delayed a few weeks because the report wasn't detailed enough for the team to decide what to do.... and then my surgeon had a holiday. That then caused my radiation to be delayed a few weeks because we fell into the Christmas period.  While it was unsettling at the time, I put my trust in the medical team and I think the slightly longer gaps helped me heal a bit more in between each step.

    This may be a bit too heavy reading at this time but the Australian Government and Cancer Council have a document called: Optimal Care Pathway for People With Breast Cancer

    On Page 8 of the PDF (labelled page 2 on the lower left of the page) with the heading "Step 2: Presentation, initial investigations and referral" it says "Ideally, the surgeon should see the patient with proven or suspected cancer within 2 weeks of diagnosis."

    The next page goes into optimal timeframes for surgery and/or other treatment. e.g. within 5 weeks if Chemotherapy isn't provided before surgery.

    While the timeframes they specify are optimal, each situation is individual. Some people will progress through faster, and others slower.

    I hope that the surgeon provides an appointment for you soon so that you get clarity on timeframes for the next steps.

    • Gr8ful-jen's avatar
      Gr8ful-jen
      Member

      Thank you so much. ❤️ Your reply has genuinely helped ease my anxiety tonight. I think it’s been hard separating the referral delays from what is actually happening with the cancer itself. I really appreciate you sharing your own experience and the information about the Optimal Care Pathway. Thank you for taking the time to reassure a complete stranger. It means more than you know. 🌸

  • I was diagnosed 2 weeks ago. I’m sorry this has all happened to you & that there was such a mixup

    a rude receptionist is the last thing you need.

    This forum is the best place to be! Just keep posting & you’ll get such care & support. It helps to know you aren’t so alone

    🌸💝

    • Gr8ful-jen's avatar
      Gr8ful-jen
      Member

      Thank you so much Ann. ❤️ I’m sorry that you are also so newly diagnosed and going through all of this yourself. I’m already beginning to see what you mean about this being such a supportive place. It really does help knowing that other people understand the uncertainty and the waiting without me having to explain why it feels so overwhelming. Thank you for taking the time to reach out when you have so much going on yourself. 🌸💗

  • Hi everyone, I wish we never met here, but here we are. I also got diagnosed on 28th July and I can't even utter the words of the diagnosis. This thing has completely changed me in such a short period of time. Everything is different. I feel like I am just a shell of my old self.  I can't help but feeling very challenged with the conversations with close people who know about my diagnosis yet there seems to be no care on the topics they want to discuss with me. Please don't take this as judgement, it's just me not having the capacity any more. I feel like something just died inside of me, especially patience. Even when others ask "how are you", and I say "oh good", but wanted to scream so loud and say I'm falling apart cause I've just been diagjosed with ........  I sincerely wish we all get through this and we all recover. I pray for everyone 🙏  I am sorry if my message is bit "down", but it's just one of those moments where I just need to put it down "on paper". This is so hard.

    I hope and pray 🙏 we all get through this and meet for coffee and lunch one day and say how we are all doing well and are cancer free 🙏 ❤️ 

    • Gr8ful-jen's avatar
      Gr8ful-jen
      Member

      MazaDj, I could have written so much of this myself. ❤️ I was also diagnosed on the 28th July and I completely understand what you mean about conversations with people suddenly feeling different. I’ve found myself saying “I’m okay” when inside I’m thinking, how can I possibly be okay when I’m still trying to process what has just happened?

      I’ve also had some very well meaning “stay positive, you’ll be fine” comments, and I know they come from a good place, but sometimes I don’t need someone to make it better — I just need them to sit with me in the fact that I’m frightened and that this is hard.

      Please don’t apologise for your message being “down”. I’m actually really grateful you wrote it because it made me feel less alone in some of the things I’ve been feeling too. ❤️

      And I absolutely love the idea that one day those of us who were diagnosed around the same time could be sitting together having that coffee and saying, “Look how far we’ve come.” 🌸💗

  • Coffee and meet up would be amazing - let's keep that positive thought in our futures!!