"Carcinoma. Carcinoma. Carcinoma in my breast. Get. It. Out."
If that is where you are right now — that visceral, panicked, get-it-out-of-me feeling — I hear you. The word carcinoma is in the name. It says cancer. Of course your instinct is to treat it like a fire and put it out immediately.
But here is what I need you to hear, right now, before anything else.
You have time. DCIS is not a medical emergency. No decision needs to be made today or this week. And the spinning that is happening in your head right now — the fear, the worst-case thinking — is completely normal, understandable, and also not the full picture.
This post gives you that full picture. What actually happens next, step by step — the appointments, the questions, the options, and how to walk into every part of this process feeling clear and in control.
The First 48 Hours — A Better Plan Than Google
- Spend three days on Google. The internet doesn't know your grade, size, or circumstances — and will serve you the most frightening end of every statistic.
- Tell everyone immediately. Give yourself 24–48 hours to absorb the diagnosis before managing other people's reactions.
- Make any treatment decisions. You don't have enough information yet. Anyone who says decisions must be made this week is wrong.
- Write down three things: the words on your biopsy result, the clinic name, and the date.
- Call your GP if not already referred — a breast surgeon referral is the immediate next step.
- Request a copy of your biopsy report. You are entitled to it.
- Identify one support person to come with you to your first surgical appointment.
🇳🇿 In New Zealand: BreastScreen Aotearoa will coordinate your next steps if diagnosed through screening. For GP-referred diagnoses, ask your GP about referral pathways — public wait times vary, and private options are available. 🇦🇺 In Australia: BreastScreen Australia operates similarly. Contact your state programme or ask your GP for a breast surgeon referral.
Your First Surgical Appointment — What to Expect
This is the most important conversation in the whole process. Your surgeon will review your mammogram, your biopsy report, and your individual circumstances. They may request an MRI — particularly if you have dense breast tissue or if the extent of the DCIS is unclear.
What Must Be Discussed
- Your grade — the single most important piece of information. If your surgeon doesn't mention it, ask directly.
- Size and extent — is it localised to one area or multiple?
- Surgical options — lumpectomy versus mastectomy, and the recommendation for your situation.
- Radiation — would it be recommended, and what does that involve logistically?
- Active surveillance — has it been considered for your situation, and if not, why not?
A clear understanding of your grade, size, and surgical recommendation — and why. A follow-up plan or surgery date. And a sense that your questions were heard. If you leave more confused than when you arrived, ask for clarification, request written information, or seek a second opinion. Second opinions are normal and appropriate.
🇳🇿🇦🇺 Hormone receptor (ER) testing is not routine for DCIS in New Zealand and Australia, so your report may not include ER status. Endocrine therapy is also not standard practice here. If you have been reading US or UK sources, this may differ from what you expect — this is explained in the video above.
Understanding Your Treatment Options
The Van Nuys Prognostic Index — A Tool Your Surgeon May Use
Before discussing radiation, it is worth knowing about the Van Nuys Prognostic Index (VNPI) — a scoring tool many surgeons use to guide the radiation recommendation. It combines four variables about your specific DCIS into a score from 4 to 12.
| Variable | Score 1 ✅ | Score 2 ⚠️ | Score 3 ❌ |
|---|---|---|---|
| Tumour size | ≤15mm | 16–40mm | >40mm |
| Margin width | ≥10mm | 1–9mm | <1mm |
| Grade + necrosis | Low, no necrosis | Intermediate | High grade |
| Patient age | ≥61 years | 40–60 years | ≤39 years |
In New Zealand and Australia, over 70% of DCIS cases are managed with reference to the VNPI — compared to less than 16% in the UK. It is entirely appropriate to ask your surgeon what your score is. The VNPI is a useful conversation starter, but it predicts local recurrence — not mortality. It should inform the discussion, not replace it.
🇳🇿🇦🇺 Radiation after lumpectomy is delivered at public oncology centres — in NZ: Auckland, Wellington, Christchurch, Hamilton, Palmerston North, Dunedin. Travel and accommodation support is available through the Cancer Society or your DHB. Hypofractionated radiation (a shorter, more intensive course) is increasingly used in NZ and AU — ask your radiation oncologist whether it applies to you.
10 Questions to Bring to Your Surgeon
Write These Down Before Your Appointment
What Recovery Looks Like
When to Call Your Surgeon Promptly
Contact your surgeon if you notice: a new lump in either breast, skin changes (redness, dimpling, puckering) over the treated area, new nipple discharge, or unexplained swelling or pain after recovery. Most will have benign explanations — but always get them assessed. Do not wait for your next scheduled appointment.
The Emotional Side
A DCIS diagnosis is psychologically significant — even with an excellent prognosis. Surveillance anxiety is normal and worth raising with your GP. Support is available in both countries.
🇳🇿 Cancer Society: 0800 CANCER (226 237) · NZ Breast Cancer Foundation: breastcancerfoundation.org.nz
🇦🇺 Breast Cancer Network Australia (BCNA): bcna.org.au · Cancer Council: 13 11 20
Three Things Before You Go
- You can do this. You now have more information than most women get in their first surgical appointment. You know what to ask and what your rights are in this process.
- You have time. DCIS is not a medical emergency. Take the time to understand your options, get the conversations right, and feel confident in what you're choosing — and why.
- You are not alone. Around 50,000–60,000 women are diagnosed with DCIS every year in the US alone. There are communities, resources, and clinicians who take this seriously.
Continue Reading: The DCIS Series
Book a consultation: mybreastcarecentre.co.nz