Help Belinda Stay One Step Ahead of Breast Cancer
Donation protected
In a family of five, we have three 'life threatening' conditions. A daughter with Cystic Fibrosis, my husband with Type 1 Diabetes and then there's me with Metastatic Breast Cancer. Kind of makes you wonder and certainly tests us financially, emotionally, mentally and physically.
Back in 2010 I was first diagnosed with breast cancer. I was terrified and did run for a while. But later that year, after a mastectomy, chemo, radiation and ongoing hormone treatment I was free to get on with my life.
Out of the experience I set out to help others cope with the emotional side of a diagnosis through my training as a therapist. I founded 'Embracing Chemo'.
But in 2016 everything came undone and after serious night pain and the onset of Horner's Syndrome, I was finally re-diagnosed with metastatic breast cancer. They missed the signs and treatment was delayed 8 months. Fortunately Tamoxifen helped and I was able to keep living. Then Tamoxifen stopped working. I was told by my oncologist there was nothing else I could take. But then a tumour popped out my belly button 12 months later and suddenly I was put on Provera. That worked for about 16 months. My belly button tumour spontaneously regressed. But other tumours grew. Metastases now to the spine, rib, hip, sternum, ovaries, peritoneum (abdomen), pleura (lining of the lungs). I am grateful my organ function is normal and I am desperate to keep it that way.
Then this last 12 months the wheels fell off again. While the belly button tumour disappeared, the pleural effusion in my lungs increased and my lungs collapsed multiple times. I've never been so scared as when I couldn't breathe. Six hospitalisations, 9 chest drains, 2 surgeries, including pleurodesis that took 4 hours to get my left lung working again, lost my voice for 3 months due to the pressure on a nerve of the tumours, oral chemo and then 3 rounds of IV chemo 'because it worked last time' - that has now messed up my lungs again.
My oncologist of 11 years retired in the middle of it and the new oncologist I was referred to, by his own admission, knows little about breast cancer. I am in the process of finding a new oncologist that I can trust to direct me well. It is a scary time as I seek to find my path forward again. All I want to do is get back to doing the beautiful work that I do so I can help others and watch my children grow. But the cancer and treatment is putting my life on hold. And the doctors are guessing about which drugs to use next.
Then I found out about genomic testing. It's not routinely offered in Australia. You have to go private. Not covered by Medicare or Private Health Funds, it is expensive. But what it does is test for all the genes and mutations that a person's tumour has so that drugs can be identified that are specific for that person's situation. Then a consultant oncologist can direct your own oncologist toward the best treatment options including clinical trials. It means regular oncology medicines as well as 'off label' drugs can be specifically identified that will be of help in each individual situation. It means, it's no longer a guessing game losing precious time and health. It improves quality of life and reduces unnecessary side-effects by identifying those treatments that will - and won't - work.
Genomic testing takes about 10-14 days. As I am between treatments and the doctors are currently guessing, I would like to do this as soon as possible. Not let the tumours gain the upper hand. This testing for me, would mean I have a chance to live and live well with individualised therapy and to give back to life. It may even mean, with the right treatments identified, the tumours could disappear completely.
More than anything, I am mindful this testing should be available to everyone.
Part of my healing is learning to ask for what I need. My goal of $10,600 would give me the opportunity to do each aspect of the genomic test (3 tests in total). There will be more costs on top of that, but reaching this goal will be such a gift on the way to getting there. Thank you for reading this and where you are able, thank you for helping me.
Back in 2010 I was first diagnosed with breast cancer. I was terrified and did run for a while. But later that year, after a mastectomy, chemo, radiation and ongoing hormone treatment I was free to get on with my life.
Out of the experience I set out to help others cope with the emotional side of a diagnosis through my training as a therapist. I founded 'Embracing Chemo'.
But in 2016 everything came undone and after serious night pain and the onset of Horner's Syndrome, I was finally re-diagnosed with metastatic breast cancer. They missed the signs and treatment was delayed 8 months. Fortunately Tamoxifen helped and I was able to keep living. Then Tamoxifen stopped working. I was told by my oncologist there was nothing else I could take. But then a tumour popped out my belly button 12 months later and suddenly I was put on Provera. That worked for about 16 months. My belly button tumour spontaneously regressed. But other tumours grew. Metastases now to the spine, rib, hip, sternum, ovaries, peritoneum (abdomen), pleura (lining of the lungs). I am grateful my organ function is normal and I am desperate to keep it that way.
Then this last 12 months the wheels fell off again. While the belly button tumour disappeared, the pleural effusion in my lungs increased and my lungs collapsed multiple times. I've never been so scared as when I couldn't breathe. Six hospitalisations, 9 chest drains, 2 surgeries, including pleurodesis that took 4 hours to get my left lung working again, lost my voice for 3 months due to the pressure on a nerve of the tumours, oral chemo and then 3 rounds of IV chemo 'because it worked last time' - that has now messed up my lungs again.
My oncologist of 11 years retired in the middle of it and the new oncologist I was referred to, by his own admission, knows little about breast cancer. I am in the process of finding a new oncologist that I can trust to direct me well. It is a scary time as I seek to find my path forward again. All I want to do is get back to doing the beautiful work that I do so I can help others and watch my children grow. But the cancer and treatment is putting my life on hold. And the doctors are guessing about which drugs to use next.
Then I found out about genomic testing. It's not routinely offered in Australia. You have to go private. Not covered by Medicare or Private Health Funds, it is expensive. But what it does is test for all the genes and mutations that a person's tumour has so that drugs can be identified that are specific for that person's situation. Then a consultant oncologist can direct your own oncologist toward the best treatment options including clinical trials. It means regular oncology medicines as well as 'off label' drugs can be specifically identified that will be of help in each individual situation. It means, it's no longer a guessing game losing precious time and health. It improves quality of life and reduces unnecessary side-effects by identifying those treatments that will - and won't - work.
Genomic testing takes about 10-14 days. As I am between treatments and the doctors are currently guessing, I would like to do this as soon as possible. Not let the tumours gain the upper hand. This testing for me, would mean I have a chance to live and live well with individualised therapy and to give back to life. It may even mean, with the right treatments identified, the tumours could disappear completely.
More than anything, I am mindful this testing should be available to everyone.
Part of my healing is learning to ask for what I need. My goal of $10,600 would give me the opportunity to do each aspect of the genomic test (3 tests in total). There will be more costs on top of that, but reaching this goal will be such a gift on the way to getting there. Thank you for reading this and where you are able, thank you for helping me.
Organizer
Belinda Hawkins
Organizer
Anembo, NSW