Follow-up screening post surgery

Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,123 ✭
in Now what? The highs and lows of survivorship
Moderator moved @Cobi post to main discussion area of the forum:
Cobi Regional QLD Member Posts: 1 New Member
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Hello, my name is Cobi and I was diagnosed with ILC HER2 positive in January 2023. Since then I have had a double mastectomy. 2/3 of my lymph nodes were removed. I am now well and cancer free but have lost all faith in screening. I am really curious about post operative screening for potential reoccurrence. 
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  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,123 ✭
    @Cobi while we wait for other members to share their own experience in follow-up care, I thought you may find out My Journey information helpful also:

    Follow-up care after breast cancer treatment

    When hospital-based treatment for breast cancer is over

     


  • arpie
    arpie Member Posts: 8,122 ✭
    edited August 24
    Hi @Cobi, welcome to the blog!!

    Like you, I was diagnosed with ILC that was missed both by Breast Screen NSW and the followup Mammogram/Ultrasound at a local radiology place .... tho they DID suggest a biopsy be performed, which confirmed the presence of Cancer cells in 2 lesions.  I also have reduced faith in the scans.

    I had a Lumpectomy, followed by radiation & been on AIs for 6 years (I finish next year.)

    Since my diagnosis, I've travelled to Port Macquarie every year to a Radiology place who has a dedicated female Mammogram and Ultrasounder who specialises in Breast Cancer.  I have total faith in her.

    I hope you can find a similar place in Qld - as you may have ongoing Ultrasounds for the remaining tissue on your chest?  xx. Take care
  • Cobi
    Cobi Member Posts: 1 ✭
    Thanks Arpie for your response. Just managing becoming overly anxious. I am lucky that I have a great GP. But all of the medical service providers are reluctant or outright dismissive when I suggest an MRI. Glad  you found the right service provider that gives you peace of mind. My ILC was Her2 positive.  Warm regards Cobi.
  • June1952
    June1952 Member Posts: 1,935 ✭
    Hello @Cobi.  You do not mention any reconstruction so I am guessing you are flat and fabulous ?  I had a single mastectomy (10 years ago this week) and had annual mammograms for the first few years, then the ultrasound of both sides was added.  My new GP is a bit slack but I request the annual referral and I still attend a private radiology place as that is where I have had all tests since surgery.  No-one has ever mentioned any other tests but there must be a balance between keeping us happy and over-servicing patients.  All the best.

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