Follow-up screening post surgery
Mez_BCNA
Administrator, Staff, Member, Moderator Posts: 1,135 ✭
Moderator moved @Cobi post to main discussion area of the forum:
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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@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
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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 care0 -
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.1
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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.0