What Advanced Breast Cancer Really Looks Like with Helen Forristal & Dr Tonya Leonard #191

Dr Tonya Leonard was a GP when she found a lump she was sure was a cyst. She had sent three women in their thirties to the breast clinic that month and reassured every one of them. By half past nine that morning she was being told it was breast cancer, and asked to decide by the following week whether she had finished her family. Her twin boys were 18 months old.

Sixteen years, a second primary cancer and a diagnosis of advanced breast cancer later, Tonya joins Laura with Helen Forristal, Director of Nursing Services at the Marie Keating Foundation, to talk about what living with advanced breast cancer really looks like: scans every three months, fatigue that stops you where you stand, and plans that rarely reach past the next result.

Helen explains why advanced breast cancer is an invisible cancer in Ireland, with no official count, which signs of a recurrence to watch for, and how the Positive Living group gives women somewhere to share all of it, grief included. The conversation is part of the Living Loudly. Dying to be Heard campaign.

🔑 Key Points

Advanced breast cancer means it has spread

The cancer has moved from the breast to another organ; in Tonya's case, to lesions on her lung and under her arm.

Life in three-month segments

With a scan every three months, Tonya finds it hard to plan past the next result, the anxiety Laura calls scanxiety.

Fatigue is not the same as tiredness

Tonya describes cancer fatigue as like an injection of horse tranquilliser: once she feels it rising, she has minutes to lie down.

Women are living longer with it

Helen calls it the long middle, moving through lines of treatment; one woman in her group has lived with advanced breast cancer for 21 years.

Nobody is counting

Recurrences aren't recorded the way first diagnoses are; Helen's estimate is around 30% of women with primary breast cancer, and a University of Limerick project has started counting.

Know the signs of a recurrence

Symptoms depend on where it spreads, from a cough and breathlessness to weight change or bone pain; if something hasn't settled in three weeks, ask your doctor, "Could this be cancer?"

Mental health support needs to be specialist

Tonya waited eight weeks to see a psychologist; psycho-oncology services now run in Ireland's eight cancer centres.

Palliative care is not only for the end of life

Palliative teams help manage symptoms and support families, and the CLIMB programme supports children aged 5 to 12 who have a parent with cancer.

📚 Resources

Living Loudly. Dying to be Heard

The Marie Keating Foundation's advanced breast cancer campaign and photo exhibition

Positive Living

The Marie Keating Foundation's support programme for people with advanced cancer

CLIMB

The HSE programme for children aged 5 to 12 affected by a parent's cancer

⏱️ Timestamps

00:00 — Welcome

01:52 — Helen Forristal of the Marie Keating Foundation

02:51 — Dr Tonya Leonard: a GP, and now the patient

06:21 — The Positive Living group

09:28 — Scanxiety and life in three-month segments

12:08 — The long middle: living longer with it

17:14 — Fatigue is not the same as tiredness

22:58 — "Have you finished your family?"

29:17 — An invisible cancer: the percentage nobody counts

30:41 — The signs of a recurrence

37:57 — Mental health and the eight-week wait

46:45 — Palliative care is not only end of life

51:40 — Making the 18th the big party, just in case

56:28 — Advice for young people

Thanks for listening! You can watch the full episode on YouTube here. Don’t forget to follow The Laura Dowling Experience podcast on Instagram @lauradowlingexperience for updates and more information. You can also follow our host, Laura Dowling, @fabulouspharmacist for more insights and tips. If you enjoyed this episode, please subscribe and leave a review—it really helps us out! Stay tuned for more great conversations.

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