Time for a new treatment
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you should send a condensed version of this to as many people as you can and nbcf etc macgrath foundation vic cancer agency. cancer council polititions. hits home.
and so so true.xx Fran
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We are being a Voice just by creating awareness and getting people stirred up.
An entry could be done for the inside story of the Beacon once ideas are summarised and continue to create awareness in the wider Advanced Breast Cancer community. Also a lot of Breast Care Nurses read these stories so that would target them too.
It would be good to gather specific things we want targeted which Amanda outlines in her entry above
'Particular consideration will be given to projects that are innovative and non-duplicative of other efforts and have the potential for national application. '
We need to check where the 'Holes' are in the Research.
I would like to see National Data collection for Advanced Breast Cancer that delivers information useful for future planning, research, and knowledge of treatment results including lifestyle choices,location mets,receptor types,treatment,details of disease progression etc. I spent months on internet trying to get some of this info and it is just not out there. (The founder of this online group had the vision to have national data collection for ABC - it can be read in her entries)
There are 'High flyers' in our community who either live a lot longer than expected or are even cured. No one speaks of the cured. Why are we not studying this group to see if there are any trends. However detailed info is needed.
I would like to see nutrition education made an integral part of treatment approach.I lost 12kg initially in my initial treatment due to the high grade tumors and chemo etc,and was encouraged to focus on high calorie foods to regain and maintain weight. Formal studies in Australia need to be done to show benifets of wholefood,organic diet as outlined in the Gawler foundation. Basic sense tells us our bodies need special nurturing with nutrition thru this grueling treatment that our bodies are put thru.
Just how much drug trials are going on in Australia or World for Advanced Breast Cancer. I would like to see an annual paper put out summarising all the current treatments available whether they are goverment subsidised or not. I want to be educated on what treatment is out there and make informed choices. Although I take all my questions to the oncologists I come away not gaining the information I am looking for. I too have children that need my love and care and I just dont have the time and energy to be consumed by this unending search for information.
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Also I have noticed a lot of people who access the online group are victorians. Obviously it is encouraged in victoria. I would like to see a larger number of people with ABC accessing this website to give us a stronger voice.
It would be good if Breast Care Nurses were to receive more specialised training on the needs of people with ABC. I found the role often focuses on delivering information that is easily accessable on internet or bcna/cancer council. Following up people with ABC over the longer term is important, not just when you are in crisis or treatment phase.
Chemotherapy sessions and many days/weeks in hospital left me disappointed in the delivery of connectedness with health professionals.
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Cancer Voices Victoria recently made a submission to the Cancer (Reporting) Regulations 2012 Regulatory Impact Statement (RIS). The response from the Department of Health seems to indicate that there is a known data deficit in the area of collecting staging information and time to regression but that this will be addressed in the future.
I know the public system is mandated to report this information but I was surprised to read "currently the Regulations as they stand and as proposed under the RIS require this information from existing notifying organisations and will include private radiotherapy and day oncology centres in the near future."
How much data is being collected and never making it to a national data base?
It seems that the more we drill down into Stage 4 disease the more black holes we discover. How can decisions be made on data that is not truely representative of our experience?
If the switch is made to more research into Stage 4, then as others have said, all breast cancer patients will benefit.
Love the suggestion regarding an article in The Beacon, however most breast cancer organisations tend to separate their membership according to staging, eg. separate mail outs for Stage 4 women. Shouldn't all women have this information? What has divided us into pre Stage 4 and post Stage 4 women? We all have breast cancer! Even the latest publication of Verve (Arimidex users) had 12 stories of women who had survived breast cancer. Only one was at Stage 4, and you had to know what you were looking for to pick it, not openly stated! Not representative of statistics, should have had at least 3-4 articles by Stage 4 women. We are being marginalised even by the phamaceutical companies!
Agree with the comment regarding breast care nurses, I am currently raising this issue at my treatment hospital and requesting that they nominate a nurse with additional training for Stage 4 women. Our needs are different and because of advancing treatment options we are LIVING with this disease for much longer.
Getting off my soapbox and going out for lunch
With love
Joy K
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Hi again well i just got a wonderful responce from NBCF , i have requested permission to put the reply on here so once they agree will send to DI and see if she can put it into here for me,
the ball is doing more than just rolling girls get going.
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Hi again well i just got a wonderful responce from NBCF , i have requested permission to put the reply on here so once they agree will send to DI and see if she can put it into here for me,
the ball is doing more than just rolling girls get going.
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Fran
I am wondering if you could post some links to email addresses. I've had a week of biopsies and medical appointments but am on the ball to spend some time tomorrow emailing. It would be great to have a list of people suggested to email.
Joy - you raise some valid points re the separation of pre and post stage 4 and I especially agree with your comments regarding breast care nurses. I have received far less care from breast care nurses as a stage 4 patient when I was in a system that had multiple BCnurses than when I was considered EBC and I was inundated with information and support.
The women with Stage 4 disease receive The Beacon with an insert that I includes stories for those with "ABC" - I don't believe that the general BC community receive this information.
AnnMaree - I wonder if we can set something up for Victorian women to meet face to face though I believe Joy has met some roadblocks there - I don't see how we can be stopped from catching up for a green tea though...
Better get the kids from school and to tennis. I love you ladies.
Much love and light and despite my "nasty biology" I'm not quite ready to give up - I had 4 pretty awesome ones here at home but you have all given me another reason to keep on living and living well.
Amanda xx0 -
Love and light to you too Amanda! We are all in this together.
PS I will also be aiming to do some emailing this weekend.
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LOCAL MEMBERS OF PARLIAMENT
TO PROMOTE AWARENESS OTHER BC OR ABC GROUPS
oncology and radiation places put up notices re awareness
mcgrath nurses
major hospitals ie: peter mac in victoria research dept,
research depts in other hospitals.
most hospitals have sections that sort out grant and fundings etc.
NBCF / Cancer agencies /
Lynne Kosky member parliament.
other cancer agencies all states.
advertise the need / urgency / in local papers or radio explain why etc.
let other cancer groups know what we are trying to achieve.
re email addresses i can not legally just put addresses on this site but most can be googled.
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LOCAL MEMBERS OF PARLIAMENT
TO PROMOTE AWARENESS OTHER BC OR ABC GROUPS
oncology and radiation places put up notices re awareness
mcgrath nurses
major hospitals ie: peter mac in victoria research dept,
research depts in other hospitals.
most hospitals have sections that sort out grant and fundings etc.
NBCF / Cancer agencies /
Lynne Kosky member parliament.
other cancer agencies all states.
advertise the need / urgency / in local papers or radio explain why etc.
let other cancer groups know what we are trying to achieve.
re email addresses i can not legally just put addresses on this site but most can be googled.
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Hi Amanda,
I am so sorry to hear about your news. Hopefully the Xeloda will help. i am back on that at the moment and being reviewed in about two weeks. Just make sure you do in fact eat before you take it. Yoghurt is good.
I agree that more needs to be done for those with Advanced disease. There seems to be so many more people out there now living with Advanced and for a few years too.
When i was diagnosed just over six and a half years ago, I contacted support groups and different departments. They all seemed to write me off then and there. The support groups told me they couldn't help me and some of the medical professionals (not my oncologist) heard my prognosis and just went oh well you'd better get your affairs in order because this is going to get you soon. The "mental anguish" that this places on a person with an already altered lifestyle and length of life is terrible.
We are still here and there are many treatments still available to us. I know a cure would be wonderful and I pray for it every day, but I am also grateful that there are so many treatments out there that even though they cause us further illness and new and different problems, at least we are still here.
I want to be able to see my girls all leave school, my youngest in 3 more years and I would desperately love to see them married and with children. A lot of people don't realise how these things in life are so important to someone fighting this disease and so many other chronic and life threatening illnesses.
Sorry I went off on a tangent there, but I have actually spent the day with a friend of the family who is fighting multiple myeloma and these were some of the discussions we were having today. Funnily enough he has exactly the same thoughts that we all seem to have too. Different cancer but the thoughts are all the same.
I wish you all the best Amanda. Stay as strong as you can be. We are all thinking of you.
Take care
Tracey xx
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Hi Amanda, Tracey and Amy,
Thanks for the blog. Thinking of you and others with ABC, who are living with and fighting for a cure for this disease.
Kathy.
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I feel impatient with the data collection issue. This information is very important for clinical judgement and planning. I want to see more information collected than staging information and time to regression. There should be another way around achieving data collection. Why can't 1 or 2 people be employed to collect and compile this information.
This is a good topic for the beacon.
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A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.
Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.
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A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.
Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.
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