Forum Discussion

Illawarrian's avatar
Illawarrian
Member
2 months ago

Difficult to organize a biopsy

A week ago I had a CT scan of the chest due to being out of breath. It was thought to be a problem with my lungs though I have no cough and don't smoke. The scan showed a 3.7 cm calcified elongated mass in the right breast tissue. It also showed scattered ground glass densities. Sometimes this can indicate metastatic breast cancer. I've read that a mass that is elongated should be investigated, and 3.7 cm is quite large. As well, both my mother and grandmother had breast cancer after menopause. The type in both cases was slow growing and didn't kill either of them. I asked the GP if I could get a guided needle aspiration biopsy. She gave me a referral. Wouldn't you think such a thing is urgent? I rang the imaging centre where the CT scan was done, in a town a half hour drive away, and they had several weeks' wait. I tried every centre in Canberra and they all had a wait between several weeks and several months. Wouldn't this mean the difference between treatable cancer, and one that has got away to the point that it's terminal? I thought even a week's delay could be dangerous? I finally found a place near Wollongong that can do the biopsy in two weeks' time. I'll need to drive three hours to get there. I'm just horrified that it's so difficult to get a biopsy of a suspicious lump. Has anyone else had this experience? 

biopsy

16 Replies

  • Mez_BCNA's avatar
    Mez_BCNA
    Community Manager
    2 months ago

    Hi Illawarrian​ 

    It sounds likes a challenging time and hopefully you feel supported in our lovely community.

    While we wait for others to respond, we thought we could share more about the breast cancer care pathway in Australia. While your lung investigation may have meant a slightly different initial pathway, you can still review the clear sequence aimed to ensure timely and coordinated care (Keeping in mind that timeframes may differ for people living in remote & rural areas).

    You can review the full Optimal care pathway for people with breast cancer (OCP)

    (Based on the OCP) - After seeing a GP, referral to a specialist should happen within 2 weeks, and diagnosis is usually completed within another 2 weeks. A treatment plan is developed by a team of specialists, and treatment typically starts within 4 weeks of that plan. Surgery, chemotherapy, and radiation are scheduled based on individual needs, but usually occur within 4–8 weeks of each other. After treatment, follow-up care and support are provided to help with recovery and long-term health. Patients are encouraged to ask about timeframes, support services, and who is involved in their care.

    We are glad to hear the team at Wollongong are looking after your needs and encourage you to keep the lines of communication open if you are unsure or not happy with how things are progressing.

    Please feel free to contact our Helpline 1800 500 258.

  • arpie's avatar
    arpie
    Member
    2 months ago

    Sorry to see you joining us here Illawarrian​ - all going well, it will be something other than breast cancer ....  tho it is always a stressful time when something like this happens, almost by accident!   Given your family history with BC, it makes sense to have it thoroughly checked out.

    I am surprised that the report to your GP didn't suggest a biopsy .... so it is good your GP gave you a referral.   Bummer that you have to drive so far for it tho! I am surprised there is such a long wait in Canberra!   We only have 1 radiology centre where I live & there is currently a 2 week wait just for Xrays, let alone other procedures .... so recently, I drove to the closest 'walk in' centre so that I could have it done the same day - 30 mins away.

    As you are a 'rural/regional' patient - make sure you check out the Patient Assistance Scheme (available in all states/territories) that will subsidise the cost of your travel/accommodation when you need to travel for your appointments.
    ACT:     https://www.canberrahealthservices.act.gov.au/__data/assets/pdf_file/0007/1985479/ACT-Interstate-Patient-Travel-Assistance-Scheme-Assessment-Guidelines.pdf

    take care & all the best.  (The waiting for results really sucks too! Grrr) 

    • Illawarrian's avatar
      Illawarrian
      Member
      2 months ago

      Thank you so much for telling me about the patient assistance scheme. I will definitely check that out. It's difficult living away from major cities. The waiting is awful. The radiologist who did the CT scan suggested a mammogram, but I only had one a few months ago and there was no lump; also my breast tissue is very dense; so I asked the GP if we could skip the mammogram and go straight to biopsy. I just don't feel like taking more photos of the thing is going to put my mind at rest. I'm in regional N.S.W. 

      • arpie's avatar
        arpie
        Member
        2 months ago

        Having Dense Breast Tissue - you should also be recommended to have an Ultrasound prior to any biopsy .... to try & pinpoint the area more accurately & get more 'info' on the suspect tissue too.
        My own ILC was missed by 2 x mammograms - and was only picked up by biopsy after the Ultrasound was also 'not sure' .... but the report suggested a biopsy to be sure. 
        ILC (Invasive Lobular Cancer) is one BC type that doesn't always present as a lump.

        If you are regional NSW - you'll need to check the NSW IPTAAS scheme link below (for a brief outline.) You should be able to claim mileage for any travel you've had already (tho it needs to be a minimum of 100k away from your home address - or 200k travelled within a week.):
        https://www.ruralhealth.org.au/wp-content/uploads/2024/09/PATS-Fact-Sheet-and-Guide-2025.pdf

        Tho it might be an idea to actually speak to someone, first time up, to get it right first up.
        https://www.iptaas.health.nsw.gov.au/home

        We have a private group for those who are rural/regional too ....
        Group: Connecting rural, regional & remote areas | BCNA Online Network

        Good luck

         

  • Formymum's avatar
    Formymum
    Member
    2 months ago

    I am in Canberra! It took my Mum 1 month to be initially diagnosed, and then another month to start chemotherapy for stage 3, grade 3. Very urgent I would have thought… I have never had any confidence in the medical system and am continually reminded of this unfortunately. Good on you for being proactive! Good luck 🤞 

    • Illawarrian's avatar
      Illawarrian
      Member
      2 months ago

      I'm surprised the GP wasn't motivated enough to call them for me and let them know it's urgent. The biopsy is scheduled for 10 a.m. Friday - in two days, in Corrimal, nearly 4 hours' drive from where I live. I can't find the lump myself, at all, and I don't know where it is, but hope it's not too far from the surface.

    • arpie's avatar
      arpie
      Member
      2 months ago

      Illawarrian​  .... both you and your Mum should have been assigned a Breast Care Nurse (probably McGrath, possibly your Surgeon's) ... who should be able to help organise & even attend appointments with yourself and/or your Mum.   Are you both living in NSW, regional areas?

      When my husband was diagnosed with stomach cancer in 2010, the surgeon's Nurse sat in on all our early appointments & assisted with bookings etc. It was a HUGE relief.   
      Sadly, you GP just wouldn't have the time to do this for you. 

      Formymum​  You SHOULD be covered by ACT's Patient Assistance Scheme - tho not sure how it works if you have to go outside you 'nominated' area! ....
      You have up to 12 months to apply to most of them for reimbursement of both fuel and accommodation ... so don't worry about it right now ... you just need to get there & get it DONE ..... 

      Take care, ladies & all the best. xx

      • Illawarrian's avatar
        Illawarrian
        Member
        2 months ago

        I'm going to look into the N.S.W. scheme. My mother's cancer was in the early 1990s so there might not have been breast care nurses. Quite frankly the doctors in my small town seem to only be interested in serving in a regional area in order to obtain permanent residency. Everyone says they seem to have no interest in individual patients, they don't remember anything about our medications or conditions when we visit them and we all have trouble understanding them and making ourselves understood. When the doctor received the report about a breast lump, she really didn't say much about it, and certainly didn't suggest a biopsy. I had to suggest it myself and ask for a referral. She didn't offer to assist me by calling imaging centres to try and get an early appointment for me. We have six overseas trained doctors for a town of 2,000 people plus a thousand or so farmers living nearby. As a tradesman said to me, "We have to research and find out what we've got, go to the doctor and tell them what it is and then ask for the correct medication. Which we've also had to research." The female doctor I am seeing who's the best of a bad bunch, didn't even offer to examine me and try to find out where the lump is situated. She said she doesn't know how to read CT scans. 

  • Illawarrian's avatar
    Illawarrian
    Member
    2 months ago

    Update. The radiologist had a look using the ultrasound and said he's sure it's scar tissue from my BR operation in 2003. He didn't biopsy it. The thing is 3.7 cM long. There was no mention of it being there when I had a mammogram 18 months ago. Both my mother and grandmother developed breast cancer after menopause at the same age as me. And I have something nasty in my lungs presenting as interstitial lung disease with ground glass opacities which from my research, could well be metastatic cancer from somewhere else.  I am seeing the pulmonologist in 2 weeks, but I thought it would have been good to rule out breast cancer. Not sure what to do now. I have returned to the country town where I live, 4 hours' drive from the radiologist. Waste of time that was.