Grace Gawler - Helping You Navigate the Cancer Maze

Triple Negative Breast Cancer

A positive spin for triple negative breast cancer

The Grace Gawler Institute has assisted many women diagnosed with TNBC and we have had a surprising number of successful outcomes. These patients have taken part in our more intensive services, Survivorship Care Plans. 

They have been able to combine in the best of medical care in Australia including minimally invasive treatments.

In addition we have guided and supported them whilst they attended our recommended clinics for treatments overseas, not available in Australia. Long term support, guidance and complementary medicine has been provided to maintain wellbeing and prevent recurrence.

Navigating the Cancer Maze with Grace Gawler

Grace Gawler Institute TNBC Initiative 2024

Alison’s Gift – Creating a better journey for women diagnosed with TNBC 

  • When Alison spoke of you she would talk of better ways for patients to be treated. A more individualised medicine so that it would be known beforehand if treatments could be effective. Talking of you gave Alison more energy and a more positive view to the future. We know working with you improved her quality of life and gave more time with her family. She would definitely want to see others receive that special kind of support that you were able to provide her with. That is one of the reasons for our passing Alison’s Gift to you. (Alison’s support team, November 12, 2023)

Alison M – A Breast Cancer Legacy
Triple negative Breast cancer (TNBC) 2016-2022

Triple Negative Breast CancerSome long-term survivors meet unexpected challenges. Because we are personalised cancer navigation support experts who practise Precision Medicine; we are always heavy-hearted when a patient succumbs to the effects of their illness or treatments.

In-house Research: In these circumstances I always action a full case review to be sure that no stone was left unturned for a client. I look at treatment side effects, past and current, access to targeted treatments, roadblocks encountered whilst navigating the maze, etc.

These reports are confidential but powerful, and remain in each patients file serving as reminder of the challenges that cancer brings.

There is a client I would like to honour on the Institute’s Survivor Stories page because her story highlights the many challenges faced by patients who have failed to respond to standard of care treatment, and who then extend their lives by discovering a whole new approach called precision medicine. This includes personalised care and genomic diagnostics.

Alison M was initially diagnosed with TNBC (triple negative breast cancer) in September 2016. Her story appeared on this page as a survivor who was still diligently navigating the survivorship maze. After several surgeries and multiple types of treatments, Alison wrote in her first email in August 2020 when she joined our Survivorship Plan, “As someone who has travelled what I call “the conveyancer belt” of standard surgeries and treatments which are rarely targeted or effective for TNBC, I was enlightened to see your comment that not all TNBC is the same disease”.  Also, she often said and wrote, “I am grateful for many things in my life and one of them is definitely you, Grace. I wish I had found you sooner.

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Alison’s experience with metastatic TNBC, highlights the horrendous personal challenges endured by many breast cancer patients. These women have faced their uncertain journey with grace, resilience, tenacity, and zest for life that should be appreciated and honoured!  Alison knew she had a battle on her hands and wrote, “Regardless of the outcome for me, it is so heartening to know what you have done for so many other people and by extension, their families too.  Alison was blessed to have unwavering, intelligent and loving support from her husband Robert, her boys and friends and work colleagues.

Learning from the lives of many women including Alison, I have made it my personal mission and research goal for my remaining work years-which I hope is many; to design a personalised early intervention program for women diagnosed with TNBC.  Thank you, Alison! Grace Gawler October 2023

The Grace Gawler Institute Cancer Navigation Services

SURVIVOR STORY: Sandra B. NSW. Long Term Survivor – Diagnosed 2014

Triple Negative Breast Cancer (TNBC) locally advanced, both breasts. Still in Remission 2023

I was shocked when diagnosed with triple negative breast cancer, a high grade carcinoma with lymph node involvement. 

The doctors said that my cancer was locally advanced with several lumps evident on scans throughout my breast. I had only found one lump which I ignored for several months before seeking help. When further suspicious nodes were found I began to lose hope.

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I was lucky they said as my cancer had not metastasised anywhere else in my body it was localised in the breast and lower nodes. I was told that these types of tumours (TNBC) are often chemo resistant and there were no guarantees that even with radical treatment that I would be OK. 

Despondent with my poor prognosis, I was even more fearful when many doctors said that because I was young, 40 years old, my cancer was likely to be extremely aggressive and fast growing. There were no hormone treatments.

I was advised to have chemotherapy prior to an advised double mastectomy and was prescribed a usual protocol of 18 weeks chemotherapy – Taxotere, Adriamycin and Cyclophosphamide. (TAC)- It was tough going, but I got through.

After chemotherapy they could find no evidence of the tumours.

Then the next treatment; a double mastectomy. The surgery confirmed a complete response with no residual microscopic disease.  Things began to look rosier. When recovered, then came six weeks of radiation therapy. My body felt like a war zone. I was exhausted and traumatised especially with the extra demands of a young family to raise. I asked myself “Should I rest on my laurels” take time out and watch and wait as had been advised.

I am not good at watch and wait so I decided to become proactive being aware of the ongoing risk of recurrence and the impact of side effects that were already plaguing me.

My inflammatory markers were high, and I had constant joint and muscle aches. I found the Grace Gawler Institute which was a turning point. I soon became a client. I had no idea of the huge range of possibilities that awaited me.

As a navigated client of the Grace Gawler Institute, I was prescribed complementary medicines and was referred to a qualified overseas clinic for whole body hyperthermia. Then I travelled to the Institute’s recommended specialist cancer immunologist in Japan.

I underwent a series of personalised cancer vaccines made from my own immune cells. I have returned every year for treatment and a holiday with family. With the advice and support from Grace, my health improved dramatically, my fatigue melted away as did all my aches and pains.  I had turned a significant corner in my healing and wellbeing.

Update: It is now Oct 2023. My remission has continued, and my health is beyond expectations. My kids are now teenagers and I know I will be around for them and see their birthdays and graduations and one day hopefully grandkids.

 

Your life is worth a second opinion

SURVIVOR STORY: Alexa M. Victoria. Long Term TNBC Survivor.
Diagnosed 2015 – locally advanced. Still in Remission 2023
Alexa’s case highlights the need for second opinions.

Alexa – Early in 2015 at 54 years of age I underwent a lumpectomy and chose not to have follow up treatment.

My breast lump was relatively small, and surgeons said they had performed a wide excision and although they recommended, I follow up with either chemotherapy alone or radiotherapy or both to be sure. Under the microscope my small lump was a triple negative breast cancer.

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A positive thinker, I’d always had an ethic of following natural and lifestyle medicine and I was prepared to take the risk of getting on with my life and leaving cancer behind me.

I travelled overseas for a holiday, but although I did not mention to anyone, nagging fears began to plague me; fears about the cancer coming back. Those fears caused me to decide whilst I was in Europe that I would undergo a course of treatment at a German Cancer clinic where I had a few treatments including whole body hyperthermia to help prevent a recurrence. I took supplements prescribed by a naturopath and German doctor. thought little About breast cancer when I returned to Australia.

I thought I had done all the right things however there was one word that had not been explained to me or I that had not heard or understood. The word lympho-vascular invasion. When added to TBNC, this turned out to be the reason why follow up chemotherapy and radiotherapy was recommended after my lumpectomy.

2016 Recurrence! My heart sank. This time not only one lump but several were found and according to pathology reports, they were all related to the previous lump.

I was devastated because not only had my cancer recurred with a vengeance, but my life ethic of curing cancer naturally was shattered. I was ushered into the world of conventional cancer medicine at speed with hardly time to think.

Nevertheless; I was told that triple negative breast cancers often don’t do well with chemotherapy and if they do, it may only be for a short time before another recurrence. Fear and anxiety began to dominate my life.

A friend suggested I consultation with Grace Gawler Institute. I had a videocall with Grace Gawler was surprised when she told me that debulking the cancer with surgery and mopping up stray cancers with chemotherapy was the best way.

She told me that because my cancer had spread in my breast and lymph glands but was nowhere else to be seen on scan; that this was the best course of action.  This was not what I was expecting – not what I had read on the internet about curing cancer. I don’t know much about cancer, but I was trying to fight it.

It seems a crazy thought now; thinking you can fight something when you don’t even know what it is. I had adult kids and I wanted to see my grandchildren grow up and I thought constantly about all that stuff you think you will miss when diagnosed with cancer again.

Grace assured me that conventional treatment would not be easy and still there were no guarantees, but she would help me to give it my best shot. Before surgery she mentioned there was a Cancer immunologist in Japan who was helping many of her patients with a special kind of immune therapy made from their own cells. I liked this idea and I asked her if she could help me to organise a trip to Japan after my treatment had finished. 

She said that I could do even better and sent a request to my surgeon to have some of the infected lymph nodes removed and sent to Japan for a personalised cancer vaccine. I’m not sure of all the behind the scenes arrangements but somehow grace made it happen. From that day on there were a lot of video calls and emails as she guided me through the process.

My surgeon gave some dire warnings about my long-term survival so I felt that the Japan option might offer me some extra protection. I have followed up with scans and blood tests and it’s a good feeling when your surgeon says she doesn’t want to see you for another year and then another year and then another.

That’s all in the past now, I have been to Japan four times for my cancer vaccine treatment.

Update: I am still in remission years later Oct, 2023. I’m grateful for being alive and well and to all my doctors but especially to Grace for the role she played in my recovery. I hope that my story can encourage others and that they can learn from it.

 

Triple Negative Breast Cancer

How 3 negatives can become a Positive

ER, PR & HER2 – (the 3 negatives):

BE PROACTIVE: As with any cancer diagnosis, especially TNBC, it is important to understand the nature of your cancer; this is fundamental to making treatment choices & your long-term survival.

TNBCs are a specific subtype of epithelial breast tumours. They are usually diagnosed by biopsy or from tissue removed during surgery; such as lumpectomy or mastectomy.

HER2 is a gene that can play a role in the development of breast cancer. Approximately, 10–14% of breast cancers diagnosed are triple negative.

Advanced TNBC can become HER2 Positive:

When TNBC cells have spread i.e. are in circulation or moved out of breast tissue into organs, biopsies from the new locations (other than from the original biopsy) should be re-tested for hormone receptivity. You may be surprised to learn that cancer cells in order to survive, can change the way they behave.

For example; if you have been intensively treated with chemotherapies, radiation or targeted treatments your cancer can morph and change behaviour. In TNBC this stage is often called – chemo or treatment resistant. LINK – TNBC that progressed as estrogen receptor-positive skin metastases

Genomic diagnostics Essential for targeting TNBC treatment

Triple Negative Breast Cancer

Genomic diagnostics provide you & your treating practitioners with a unique genetic fingerprint of your cancer type; thus influencing your treatment choices.

TNBC requires a personalised cancer medicine approach and regular monitoring over many years. 

Because TNBC harbours substantial genetic variations along with 6 subtypes; fine tuning your diagnostics utilising the latest genomic technology is highly beneficial.

Genomic Diagnostic Tests for patients on Survivorship Care Plans

Microbiome Analysis: 
The health of your gut microbiome can be measured using a faecal sample. This can determine the health of your gut based immune system.

Radiation Sensitivity Assay: Genomic testing for a gene variation can indicate if you will experience radiation induced fibrosis. (RIF) This knowledge may open up other treatment options. 

Pharmacogenomics test (PGx): Explores your drug response based on genetic make-up, helping your healthcare provider choose between medical drugs that are problematic and those beneficial.

Tumour Analysis: 
This analysis provides a personalised report based on the molecular profile of your tumour. The purpose is to provide you and your oncologist options with therapy options including targeted clinical trials.

Tumour Mutational Load (TML):
Based on your DNA; results of this analysis can be classified into a high or low TML. This shows the likelihood or not, of your response to drug based immunotherapy. 

Cell free DNA Testing:
Also called a liquid biopsy. These Results can help your oncologist determine treatment success. Cell free DNA can also be used for monitoring your situation when treatments have ceased.

Cancer navigation is essential for those diagnosed with TNBC

Triple Negative Breast CancerCancer navigator Grace Gawler

*Aims to form a close, trusted &  personal therapeutic alliance with you.
*Researches on your behalf & advises you through the important decisions.
*Advocates for you – with doctors, clinics and medical systems.
*Helps bridge gaps in communication between all your practitioners.
*Liaises with oncology & other practitioners on your behalf.
*Encourages you to obtain & keep medical records updated & orderly.
*Manages the whole picture of your health and cancer recovery.

Know your Cancer Navigator!

It is imperative you know about the diverse experience, training and background of any qualified integrative doctor, naturopath or other person who is advising you about Cancer Navigation.

Your life depends upon the experience, skill, integrity, authenticity, information, and quality of guidance provided by your Cancer Navigator. 

Dedicated Cancer navigation is a key component of our Survivorship Care Plans. We recommend becoming familiar with your cancer navigator’s background by selecting the following links – Grace’s milestones  – About Grace Gawler  – Podcast BBC, UK. Grace interview

Explore your TNBC Survivorship Possibilities

Grace Gawler