Owning your worth

05/24/23 • 56 min

What does it mean to be a patient advocate and to ‘own your worth’?

When Terri Coutee received her second diagnosis for breast cancer she was mistakenly diagnosed with incurable metastatic disease. This prompted her to blog about her experience and advocate for others.

Luan and Terri talk about how Terri went on to set up not-for-profit DIEPC Foundation, and create a 24/7 library of educational resources to help those affected by breast cancer make an informed decision about reconstruction after a mastectomy.

Be sure to listen out for the poem Terri melodiously reads that so beautifully sums up the work of patient advocates #WorkIsLoveMadeVisible

Luan and Terri also talk about:

The role of a patient advocate
Keeping calm when things go wrong!
Importance of open dialogue
How we can all learn from each other
Responsibilities of patient advocacy
Improving patient outcomes
Tips for navigating conferences as an advocate

Links for this pod:

DIEPC Foundation website
DIEPC Journey private Facebook group
DIEPC Instagram

Where you can find Luan:

If you’ve found any of the content upsetting, please reach out and get help. Breast Cancer Network Australia has a free confidential helpline – 1800 500 258. Beyond Blue has a range of free resources online, or you can call them 24/7 on 1300 224 636.

The information in this podcast does not constitute medical advice. For personalised medical advice you should seek a consult with a FRACS qualified surgeon.

Post-production ‘shine’ by Paddy @ Goosing Sounds Ltd (UK)

Hosted on Acast. See acast.com/privacy for more information.

What does it mean to be a patient advocate and to ‘own your worth’?

Be sure to listen out for the poem Terri melodiously reads that so beautifully sums up the work of patient advocates #WorkIsLoveMadeVisible

Luan and Terri also talk about:

The role of a patient advocate
Keeping calm when things go wrong!
Importance of open dialogue
How we can all learn from each other
Responsibilities of patient advocacy
Improving patient outcomes
Tips for navigating conferences as an advocate

Links for this pod:

DIEPC Foundation website
DIEPC Journey private Facebook group
DIEPC Instagram

Where you can find Luan:

The information in this podcast does not constitute medical advice. For personalised medical advice you should seek a consult with a FRACS qualified surgeon.

Post-production ‘shine’ by Paddy @ Goosing Sounds Ltd (UK)

Hosted on Acast. See acast.com/privacy for more information.

Previous Episode

Feeling & sensation after breast reconstruction

Hear about new techniques being used to try to preserve and restore feeling and sensation in the breast after reconstruction.

“That [extra] 20 minutes is this woman’s entire lifetime of [breast] sensation,” A/Prof Cindy Mak.

Loss of feeling after a mastectomy and reconstruction is a concern for many women.

Luan talks to A/Prof Cindy Mak & Dr Joe Dusseldorp about techniques they’re using to preserve and reconstruct nerves.

They also share the results of these surgeries: listen out for my "wow” jaw-drop when Dr Cindy tells us that they’ve observed that temperature sensation is developing after reconstruction.

And Dr Joe also tells us – hot off the press! – how he’s using the same nerve reconstruction techniques developed for the breast to help optimise the sensation in the tummy area after DIEP flap surgery.

We talk about:

Breast sensory nerve preservation:
For DIEP, TUG & implant
Can it be used for delayed recon?
‘Spare part’ nerve grafting
Breast sensory nerve reconstruction
Abdominal nerve preservation:
Sensory and motor (core muscle strength)
Things to consider about these techniques
How can patients find out more about them

Links for this pod:

Dr Cindy Mak’s website
Dr Cindy’s Instagram
Dr Joe Dusseldorp’s website
Dr Joe’s Instagram

Where you can find Luan:

The information in this podcast does not constitute medical advice. For personalised medical advice you should seek a consult with a FRACS qualified surgeon.

Post-production ‘shine’ by Paddy @ Goosing Sounds Ltd (UK)

Hosted on Acast. See acast.com/privacy for more information.

Next Episode

From implants to DIEP flap

It’s important to decide what reconstruction is right for you at the time. However, over time things can change, such as life priorities, work commitments and childcare responsibilities. So too can the results of your reconstruction.

Kylie Lynch had multiple surgeries to achieve a bilateral implant-based reconstruction following her diagnosis of invasive mucinous and ductal carcinoma with extensive lymphovascular invasion. Seven years later Kylie had an autologous ‘flap’ reconstruction because the long-term effects of radiotherapy had caused capsular contracture around one of her implants.

Luan talks to Kylie about why she chose DIEP, what she took into consideration when choosing a plastic surgeon and how she got over the ‘DIEP blues’.

Luan and Kylie also talk about:

· Why Kylie chose implants initially

· What tissue expanders felt like

· Being ‘triggered’ by her DIEP

· Her recovery from DIEP

· Plans for revision surgery

· The bonding power of support groups

· Kylie’s advocacy work

Links for this podcast:

· Kylie’s website

· YPink, is at Mater, Sydney

· Read about DIEP*

*You can also read about TRAM, which is the surgery Kylie refers to when she talks about muscle and mesh being used in other types of 'flap' procedures.

Where you can find Luan:

In this podcast Luan and Kylie talk about their personal experiences. They don’t recommend any surgeon, practice and/or procedure or treatment. The information in this podcast does not constitute medical advice. For personalised medical advice you should seek a consult with a FRACS qualified surgeon.

Post-production ‘shine’ by Paddy @ Goosing Sounds Ltd (UK)

Hosted on Acast. See acast.com/privacy for more information.