What Affects me Living with Advanced Breast Cancer
Secondary Breast Cancer Awareness Day is internationally recognised on October 13 each year and BCNA are creating awareness in Australia which I applaud. Due to advances in medical treatment many people are living well with this incurable disease for many years. Consequently there are many challenges because our society is not keeping pace with medical technology and from where I sit, here are some challenges that come to mind:-
Medical
- Quick access to drugs. PBS system needs an overhaul. Currently drugs that demonstrate a clear patient benefit before overall survival data can be made available is not considered. Treatment outcomes such as significantly improved quality of life, or the measurement of improved symptom control should be considered.
- Capturing important data to establish/confirm efficacy and safety of drugs.
- National data base that capture pertinent patient statistics that allow doctors and medical policy makers make informed decisions. Currently there is no data base collecting information on secondary breast cancer. Its adhoc. Today we don’t know how many people suffer with Secondary Breast Cancer.
Work
- Currently cancer is considered to be a disability under anti-discrimination laws, which means that reasonable adjustments are made so people living with cancer are not disadvantaged at work. I don’t believe this is understood by employers.
My employer was great when I had early breast cancer but things changed when it did not go away. Assessing the extent of employment problems for people affected by cancer is a challenge. Recommendations for Education programs for employers, people affected by cancer and their colleagues on the effects of a cancer is needed. A legal framework outlining the rights and responsibilities that apply when an employee or potential employee is affected by cancer and a need for practical solutions to common problems is needed.
- I believe that my employer showed no malice but was inept which has cost me and my family. If they had implemented a part-time role, I could still we working, contributing pro-rata to my superannuation and still have my Income Insurance, I would not be on a disability pension, an independent earner and taxpayer and a contributor to the economy.
- Workplace has Workcover for workplace injury, why not integrate people living with chronic illness. I have been forced to go onto a Disability Pension as I have exhausted my income streams. This has happened prematurely. With a growing older population who are being encouraged to work, attitudes and considerations/adjustments for an older workforce needs to be addressed.
- I am on a Disability Pension but I have cancer not an impairment that is obvious, therefore Centrelink and Disability Support Pension Employment agencies do not know how to handle someone in my situation who is a highly skilled person who is not overtly impaired.
Financial
Accessing superannuation is an important income stream for terminally ill people but it’s not the answer. I would like to see a flexible workforce for people who are living well with cancer who can work are encouraged to stay working in some capacity rather than eat away at their life savings and ultimately find themselves prematurely on a pension.
Being the major breadwinner, my premature exit for the workforce has caused a major ripple effect. The most difficult issue for me is my husband is working six days a week to makes ends meet when he should be retired.
Wellbeing
The disease itself has caused me to adjust my “normal” over the years but I make the most of it. Currently my main physical affects are due to years of treatment being peripheral neuropathy which is now permanent in my feet and fingers and my disease has eaten my sacrum, affecting my nerves which don’t activate my leg muscles at times. My body also cramps often. My balance is also affected due to brain surgery in the cerebellum part of brain.
On the upside, I am now on a new drug Kadcyla for treating HER2 Positive which has given me a new lease on life. This new drug thankfully is now on the PBS. I have found Kadcyla very tolerable and presently, have halted the progression of my metastatic bone cancer. Together with stereotactic radiosurgery to my brain, my disease is in check. Woo hoo.
It has allowed me to gain some trust in my body, and I currently enjoy doing a gentle Yoga class. Sure there are things I can’t do in the class, but there are lot I can and I love the social contact.
I also enjoy regularly walking with my sister. We both have dogs and have always enjoyed our walks. I treasure them and it keeps my body moving.
There is a GP Management Plan available which is a written plan identifying the individual health care needs of women. For women who require assistance from other health professionals (such as physiotherapists, dieticians, psychologists or exercise physiologists), the GP can coordinate this through a Team Care Arrangement. This entitles the woman to Medicare rebates for up to five visits per year to the health practitioners she needs. My personal experience is the GP’s surgery is not set up to handle this service and certainly was not offered to me, I had to ask.
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On a personal note, I am privileged to be a BCNA Consumer Representative. This voluntary position has provided me with many opportunities to be part of various activities. One of which was being part of the BCNA team in advocating to get Kadcyla and Perjeta drugs listed on the PBS earlier this year through written submissions and a highlight for me as a cancer survivor was personally presenting the case for Kadcyla to a Senate Committee who is looking into the availability of new, innovative and specialist cancer drugs in Australia in April this year.
I outlayed $15,000 to access Kadcyla through the Roche patient access program but I am delighted that it’s now available to all.
My ‘normal’ has changed because of my disease but I don’t let my life be dictated by it. I am still functioning and, thanks to Kadcyla, I have a good quality of life and want to keep it that way. I am still a strong contributor to my immediate and extended family. When you are diagnosed with Advanced Breast Cancer you think you are going to die in a matter of months but in my case you can live with cancer. At first you are terrified that you are going to die but you snap into survival mode and keep going. I’m into Year 9!
I am dealing with cancer and my medical team are doing a fantastic job keeping me well. Nonetheless as I have expressed, there are many areas that needs to catch up so we need to get a much conversation going so the powers that be start listening and make changes to the existing for the better.
Live well.
Karen Cowley
BCNA Consumer Representative
9 Year Cancer Survivor
5th October 2015
Comments
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H i Karen,
As a woman who was diagnosed with Advanced Breast Cancer as her first diagnosis, who will be 60 in 21 days, has a loving and supportive partner,I can only say THANK YOU for putting into words, what I could not.
EVERYTHING you have touched on is also a part of my life as well.I applaud you.
Every single item you have listed is relevant, the only comment that I would add,
Many of us with ABC live in a rural enviroment and as such do not have the ability to access some of the wonderful initiatives that are in place for city ladies, or if we can access them, it involves considerable time and distance to get there, as rural women, we need a voice, which BCNA does help with, and yes I agree, we have no idea how many women in this country have progressed from Early Breast Cancer on to ABC,
Thankyou, as a survivor of 27 months, your words give me comfort and hope, I am not alone, and I plan on being around for a lot longer I can assure you.
Wendy 55
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Wendy,
Thank you for your lovely response. Personally I am not in a rural situation and can only glean from you and other cancer patients I have spoken to, how difficult it is for you guys. This has to be highlighted and action has to be taken.We on such an emotional rollercoaster and don't need added complexities that come along during our journey.
Live well and bless you.
Karen
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