Point of diagnosis
Out of all of the most fantastic care, support and help I've been given over the last 9 months I still find my experience at being told I have cancer bugs me a lot. I had my core biopsy on the Wednesd...
Forum Discussion
Hello @Blondy. I had a similar experience as yours only mine was with a large public hospital breast clinic. I am a remote area woman. I live in the Kimberely region of WA.
I had a routine mammogram screening (my 9th since turning 50) at the mobile breastscreen van in early June 2017. Not a care in the world. After all the others were fine. Did not hear anything for 21 days then came the phone call asking for me to return to the breastscreen mobile van the next morning. Was told by the mammographer that there was a suspicious area that needed more screens and that it was not there at the last screening. The next day I received a phone call from Breastscreen WA that it was suspicious for cancer and I needed to be in Perth for a core biopsy. Took 7 days to organise flights and accommodation. I was not allowed a carer / escort to come with me under the WA PATS scheme as at this stage it was diagnostic not treatment. We could not afford an airfare for my husband so I had to go alone.
Core biopsy done on June 28 2017 with my world falling apart on June 29. Breast physician just said "you have cancer, it is very aggressive and do you have private insurance. No, well you will be a public patient."
No information, no counselling, no written info. Just "we will make an appointment for you to see a surgeon sometime in the next 2 weeks". I was alone.
I do not remember walking back to the hotel. I was stunned, in shock and overwhelmed. I do remember sitting on the hotel bed and crying. I do not remember much about the flight home 2 days later. There was no available counselling in my home town. My gp did her best, however I was very much left to muddle through on my own. I was not allocated a breast care nurse.
2 weeks later my husband and I flew down for the surgeon's appointment. This time I was allowed a carer / escort. We were just told by the surgeon "you need surgery, you have no choice, your cancer is aggressive and surgery will be in 2 weeks time." Again no breast care nurse, no counselling, no help. Flew home after 2 days still stunned and shocked.
2 weeks later (end July) flew back to Perth for surgery. Still no breast care nurse or offers of counselling.
Flew home 2 weeks after surgery. Did 3 return trips, each of 4,600 kms to Perth in 6 weeks. Exhausting and tiring. All in all we were offered no help, no advice just left hanging, for us to manage as best we could. Still no breast care nurse. I managed to get 5 telephone counselling sessions each of half an hour in the weeks after arriving home.
I have received more support and info from BCNA than from any of the so called experts. I do wish I had stumbled on this forum much earlier.
In the follow up clinic visits the only advice that I have received from the "experts" is " to receive better care, you need to consider moving to Perth". A most unlikely scenario.
I cannot help but think that my case was a situation of - older woman, very remote, out of sight, out of mind. Or perhaps I was expecting too much.
What could have been done differently? Staff the clinics adequately. Find out where remote women live, what services they do or don't have. Find out about their travel and accommodation issues. Find out if they have family available near their treatment centre or are they alone. And most of all allocate a dedicated rural and remote breast care nurse.
This is the first time I have shared my story. It is still too raw; too overwhelming and very traumatic. And there are times when I feel that I am just marking time - waiting for clinic visits, waiting for Mr Cancer to come back.
I had a routine mammogram screening (my 9th since turning 50) at the mobile breastscreen van in early June 2017. Not a care in the world. After all the others were fine. Did not hear anything for 21 days then came the phone call asking for me to return to the breastscreen mobile van the next morning. Was told by the mammographer that there was a suspicious area that needed more screens and that it was not there at the last screening. The next day I received a phone call from Breastscreen WA that it was suspicious for cancer and I needed to be in Perth for a core biopsy. Took 7 days to organise flights and accommodation. I was not allowed a carer / escort to come with me under the WA PATS scheme as at this stage it was diagnostic not treatment. We could not afford an airfare for my husband so I had to go alone.
Core biopsy done on June 28 2017 with my world falling apart on June 29. Breast physician just said "you have cancer, it is very aggressive and do you have private insurance. No, well you will be a public patient."
No information, no counselling, no written info. Just "we will make an appointment for you to see a surgeon sometime in the next 2 weeks". I was alone.
I do not remember walking back to the hotel. I was stunned, in shock and overwhelmed. I do remember sitting on the hotel bed and crying. I do not remember much about the flight home 2 days later. There was no available counselling in my home town. My gp did her best, however I was very much left to muddle through on my own. I was not allocated a breast care nurse.
2 weeks later my husband and I flew down for the surgeon's appointment. This time I was allowed a carer / escort. We were just told by the surgeon "you need surgery, you have no choice, your cancer is aggressive and surgery will be in 2 weeks time." Again no breast care nurse, no counselling, no help. Flew home after 2 days still stunned and shocked.
2 weeks later (end July) flew back to Perth for surgery. Still no breast care nurse or offers of counselling.
Flew home 2 weeks after surgery. Did 3 return trips, each of 4,600 kms to Perth in 6 weeks. Exhausting and tiring. All in all we were offered no help, no advice just left hanging, for us to manage as best we could. Still no breast care nurse. I managed to get 5 telephone counselling sessions each of half an hour in the weeks after arriving home.
I have received more support and info from BCNA than from any of the so called experts. I do wish I had stumbled on this forum much earlier.
In the follow up clinic visits the only advice that I have received from the "experts" is " to receive better care, you need to consider moving to Perth". A most unlikely scenario.
I cannot help but think that my case was a situation of - older woman, very remote, out of sight, out of mind. Or perhaps I was expecting too much.
What could have been done differently? Staff the clinics adequately. Find out where remote women live, what services they do or don't have. Find out about their travel and accommodation issues. Find out if they have family available near their treatment centre or are they alone. And most of all allocate a dedicated rural and remote breast care nurse.
This is the first time I have shared my story. It is still too raw; too overwhelming and very traumatic. And there are times when I feel that I am just marking time - waiting for clinic visits, waiting for Mr Cancer to come back.