Tuesday, 24 June 2014

20 thousand reasons I'm glad I got cancer before 2015 and how do you measure a life ?

The Medicare money grab will see a lot of casualties. No pun intended. I am scared.
Fears for my fellow patients ... 

The bottom line is the rising cost of scans may deter people from seeking medical attention (forgetting they have to pay the extra $7 as well) ...in time.

Morbidity and mortality will increase.
Morbidity refers to the disease state of an individual, or the incidence of illness in a population.

Mortality refers to the state of being mortal, or the incidence of death (number of deaths) in a population.
 Fatality - a disaster resulting in death.

Especially -  

Friday 13th June marked two years on the Breast cancer roller-coaster. Four months for the Sarcoma

I wasn't quite in a celebratory mood with a potentially  terminal diagnosis  dark cloud hovering - I was petrified. I was mentally planning my funeral the rest of life lying on the hard bed, snuggled in a blanket clutching a large foam cuddly arm rest ( given so you stay still). I was also counting the cost of scans and imaging.

Who will be counting the cost of the hidden medicare co-payment and new PBS fees...
those with chronic illnesses and life threatening cancers... 1 in 2 of us.
So, I have to pay an additional $5 or more for my PBS scripts , one or two medications I have to take daily for another 8.5 years. I pay $36.10 for one - it's not too much for me but those on limited incomes with a dozen medications might feel the pinch.

More recently, Endone for pain (again) and sleeping pills. I've been living on Paracetamol and Nurofen the last two weeks for the radiation burn pain.

Plus, the gob full of vitamins - Calcium, Co Q10 and others to protect my bones and joints from complications of early menopause don't factor here.

Not including scans and imaging ,I'm conservatively $20000 out of pocket , my private health fund probably another $20000.

In less than two years I could lit up the city with all the radiation have racked up a massive bill for all my treatment and cancer related scans. 

So the biggest fail, in the plan ,will be if imaging and scanning decides to quit bulk billing. Early detection is vital in cancer survival and in preventing re-occurance before it becomes terminal.

Medicare rules that when a patient is not bulk billed they must be charged the full fee upfront and then claim a rebate back from Medicare...[have you been to your local 'Service centre' - it's a good 15-20 min wait on a good day just to claim a refund.]
"General patients should have to pay $90 upfront for an x-ray, $380 for a CAT scan, up to $160 for a mammogram and up to $190 for an ultrasound. A PET scan will cost over $1,000 upfront " says Australian Diagnostic Imaging Association CEO Pattie Beerens
So my PET scan on 13th June - $1000 (I didn't pay). I will need them at least yearly for 5 years. Maybe more often.

Medicare rebates will not cover the full cost of medical imaging and scans leaving patients with out of pocket expenses , potentially hundreds of $ for basic scans.
CAT scan could be $130, a bone scan $95 ?

Not to mention if you can't pay upfront ! There are not many options for credit at private imaging venues.

I had to pay $300 for my neck MRI upfront - it wasn't covered by any rebate at all , though I had a clearly demonstrated lump/lesion that was and is definitely still a concern.

Right here, I would also like to point out I've had very few complications. Apart from the initial surgery , I've had one overnight hospitalisation, for vomiting/dehydration and fever.

Both my breast cancer and sarcoma treatment has been relatively straightforward.Forget I got cancer twice , that is complicated not unusual

I counted the imaging and scans I've had (minus my teeth xrays)
  • Mammogram
  • 2 Breast ultrasound
  • Two breast 'core' biopsies via guided ultrasound
  • Nuclear medicine scan called Lymphoscintigraphy for Sentinel Node Biospy (injections of blue dye directly into breast to map spread of cancer)
  •  Insertion of Port-a-Cath (minor operation) via imaging (this cost me over $3000)
  • 1 Chest Xray (due to high temperature on Chemo protocol)
  • 1 Chest Lump ultrasound.
  • 1st Bone scan
  • 5 Heart scans (4 x MUGA and Echo - these are 'Government mandated' 3 monthly to continue on certain  breast cancer and chemotherapy treatments) 
Last 4-12 months
  • Spinal Xray
  • Knee Xray
  • Thigh Ultrasound
  • Thigh MRI
  • Chest CT
  • Brain MRI
  • Neck MR
  • Abdominal Ultrasound
  • Neck Ultrasound
  • 2nd Bone scans (18 months apart)
  • Bone mineral density scan
  • 7 leg ultrasounds and 5 x drainage of Haematoma via those ultrasounds
  • Pre - radiation planning CT scans.
  • PET Scan
  • 4 x three weekly AC chemotherapy (July to Sept 2012 -2 different chemos - so 8 treatments and extra anti-nausea and steroid medications)
  • 12 x weekly Taxol* Chemo October 2012 to Jan2013 (Bulk billed though not medications)
  • 17 x 3 weekly Herceptin* infusions till Nov 2013 (Bulk Billed - though not medications)
  • 6 Surgical consultations (OOP - and he charges way over the schedule fee for everything)
  • 30 GP visits (at a guess : for scripts , Specialist and imaging referrals, blood test requests and whatever - thankfully she bulk billed me though it's not a bulk billed medical practice as a rule)
  • 20 Oncology consultations (bulk billed)
  • Dozens of anti-nausea meds (I paid $36.10 a week x 8wks for 2 pills - till I decided the cost was prohibitive and refused them on basis of cost) - plus I was chomping down Maxolon by the handful sometimes)
  • 20+ blood tests (bulk billed - majority of these you have no choice about)
  • 17 months of daily Tamoxifen tablets ...balance of 10 years to go.
  • Hundreds of vitamins swallowed - Calcium, Vit D, Flaxseed, CQ10 and other. 

  • 15000kms+ traveled for surgery x 3, Surgical , Oncology and Radiation appointments (Sydney for first 3 months of 3 weekly chemo , recently Orange - 7 weeks radiation) with limited financial assistance.
  • Infinite hours lying awake 'sucking up' my fears and holding back tears.The fear of cancer returning is a constant worry (at times very emotionally exhausting) not to mention how to pay for it all and other bills. The pills help ; best spent $10 a month.
  •  Despite immeasurable words of encouragement, support, prayers and friendship. I do not know how I would have done it without my HUSBAND, my family and friends and my interwebz community. They aren't enough.
  • Primary care at GP for mental health is so important at any time , let alone when you have other serious health issues. People with depression , may quit their 'mental health' appointments.
  • * PUBLIC Chemotherapy patients in NSW rural and regional areas are still forced to pay for their chemotherapy and anti nausea medications. Despite being subsidised on PBS - it is not free like it was for my first 3 months chemo in a Sydney Public Hospital.
  • Cancer costs vary depending on individual cases (and where you live) ; type , stage of cancer and prognosis. Beware if receive a terminal prognosis - surgery can be denied and treatment options diminish when they think you can't cured  - like why bother !
  • Breast cancer generally has very little follow-up with imaging and scanning - yearly mammogram if you still have breasts (unless you develop symptoms) . Sarcoma has a lot more because it is rarer and has greater potential to metastasize to lungs and bones (25yrs ago 90% of patients died within 2yrs of diagnosis - now 75% survive 5yrs ...)

Bear in mind these stats were 9yrs ago !

This is not a whinge or money grab - though I will be asking for sponsors when I run 14km City to Surf soon.

I am so thankful we can afford our medical expenses despite almost 4yrs without substantial income as both of us had cancer and have been carers and raising our young children in between. Medicare has also saved us $20,000 or more.

Please note - Most Importantly -  BreastScreen Australia program is still available for women to have their first screening mammogram at 50 and then every 2 years until they are 74. 

Women aged 40 - 49 yrs with no symptoms can also attend Breast Screen . However, they advise :

If you find a breast change that is unusual for you, we recommend that you do not visit BreastScreen NSW - you should see your doctor without delay.
Remember to check yourself today !

How do you measure a life ?
Does the cost of medical treatment make you think twice about seeing your GP or a specialist ?

Linking up with Jess 

Read more about this at Boob in a Box and what you can do to register your concern.