Category: Patient Centered Care

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Biopsies: The good, the bad and the ugly.

After having two biopsies: one with ultrasound, to confirm my diagnosis; and the other with MRI to implant surgical clips – all I can say is BIG ouch.

A regular biopsy is painful yes, but the MR biopsy is not exactly humane.

What got me through the MR biopsy was the wonderful radiologist and technologist. This is when your health team really matters.

They took turns hold my hand and consoling me during the entire procedure.

  • First hooking me up to IV
  • Laying face-down on my stomach and squeezing my breast in a grid-like vice
  • Putting me in and out of the MRI, 5 times or more
  • Injecting me with contrast dye
  • Injecting 3 sets freezing in my breast
  • Using their state-of-the-art DRILL to both take tissue samples and inject titanium clips in my breast

I don’t think I need to say how difficult or painful it was. It also takes some days to recover. It was definitely worse than surgery.

Are biopsies good to do?

All in all. I don’t know how I feel about biopsies. I know in some cases they can cause cancer to spread or risk infection – as with biopsies of the eye and difficult to reach areas as the prostate.

With breast biopsies, I am just not sure.

My first biopsy, was to confirm diagnosis of my breast cancer. It feels like a necessary procedure.

The second biopsy was required to mark out my surgical area, which was only visible on MRI.

You see, now after 14 months, I have had 5 breast MRI’s and 2 lumpectomies. And we can finally see margins lighting up on the MRI.

You might think this is bad, but after positive margins on my second surgery this was good news! We now had a road map to guide the surgeon on where to cut.

The other big part here is, this is all to save my breast. To me if we can get clear margins with a lumpectomy or three, then I can keep my breast.

And honestly after going through all this, I wish that I was open to mastectomy.

If I was I would have opted for that from day one, this whole thing would have been over… mastectomy just didn’t feel right for me at all.

I would say that depending on what you want your outcome to be, biopsies can be very necessary! In my case, to save my breast, it is totally my choice and worth it.

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Sick Care System > Health Care System!

Understanding the limitations of a treatment based medical system and the responsibility of the ‘government’ and ultimately what we need to do in order to keep healthy can only be accomplished if we understand the limitations we are working with.

Allopathic medicine or Medical Doctors (MDs) are not in a position to prevent disease when incentivized to care for only the sick. Furthermore, a portion of the responsibility falls on the ‘state’ to keep their citizens healthy and safe through regulatory measures from banning smoking in restaurants to providing food labelling on menus and grocery store products.

For so long, I assumed it was my family doctor that was suppose to keep me healthy, but in reality family doctors are the gateway into the medical system that only want to see you if there is something medically wrong with you.

If you want to stay out of the system, then the government needs to promote health seeking behaviours, which is a blanket to the general public but definitely doesn’t include the outliers.

This realization has made me think about my own disease and how it could be prevented in others and essentially have people be the healthiest versions of themselves. I had come across the video below by Matthias Mullenbeck who really hits the nail on the head…. our current system is a Sick Care System…his thoughts on changing the mindset to only pay physicians to keep people healthy is brilliant.

Beyond just changing the mindset within modern medicine, I would add that integration of natural medicines that seem to understand the body in ways outside of medications and surgeries sound also be integrated.

If I were to ask someone in Traditional Chinese Medicine or Ayurvedic Medicine they would describe being healthy as having balance in the body through the flow of chi or in the balance of the doshas.

Naturopathic medicine works to combine all forms of natural medicine and if integrated into our medical system would provide the perfect base to provide primary prevention: that is making sure people never get sick. I also feel that because men and women are so different, it doesn’t make sense to have one provider for both. There is already a lot to know, why complicate things even more.

Specializing primary health care by age and sex would help make sure patients are getting the best possible care and allow the provider to be able to stay up to date on the latest and greatest. It’s a win win!

So in the meantime, until we get there as a system, you can choose to learn more about your body and it’s limitations through DNA testing, hair analysis and hormone testing for starters and find yourself a good naturopathic doctor and a family doctor that is responsive to your needs. Build your health care team to work for you, to keep you healthy and if your like me, never get sick again.

Further reading:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4339086/pdf/nihms663715.pdf

Healthy Incentives
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The Epidemiology of Breast Cancer and Individualized Medicine

Invasive Lobular Carcinoma, Stage 3

There are 4 basic aspects to epidemiology: figuring out the cause of the disease of concern, the incidence or frequency (how often it occurs), distribution (who it affects and where), and ways to control or treat the disease.

Of anything I have ever studied, breast cancer seems to be the most vaguely touched on when it comes the “cause”. As far as my physicians are concerned the cause is not important, it’s getting rid of it that is.

However, if we are truly offering individualized care, as it so clearly says on the side of the hospital I have been attending, then as an epidemiologist, in order to prevent a disease we must know the cause for each person in order to prevent recurrence. Even more importantly what we learn from these individuals we can extrapolate to family practice to prevent our society from ever getting cancer.  This to me, is what continues to attract me to epidemiology and what I feel is my responsibility to others.

As a side note, one huge missing link is getting this information back to primary care providers… so that we can prevent the disease from occurring. In my opinion, family medicine should require more years of training and also should be defined or sub-specialised in terms of male or female, and age. With the amount of information that is out there it is virtually impossible for a family doctor to be able to help keep society healthy with so many differing variables.

I do not see individualized care when it comes to breast cancer and I don’t see anything being done in regards to prevention.

There are many such “approved” tests available, that still at the doctors discretion are employed; as OnchoType Dx, a test that examines a sample of your tumour post surgically to assess whether the risks of chemotherapy out weight the benefits.

For me it was crucial to understand the cause of my disease. This is truly the only way to prevent it.

Cancer is not simple and there is definitely more than one contributing factor in order to develop this disease, but knowing the triggers can help you take control from ever being sick again.

From my research there where several tests that led me to understand how I developed breast cancer including emotional manifestations that impact these ‘weaknesses in my DNA’, when I didn’t have any of the ‘so called’ associated risks: smoking, drinking, BRCA1/2 gene mutation, and family history.

So then how did I get this? A relatively young 40 year old women. I would have also included healthy, but for me there were so many warning signs from the age of 20 that to me I didn’t feel healthy, even though doctors would have described me as healthy.

  1. At first glance I thought the best place to first look was at my hormones,

    considering I was diagnosed with estrogen receptor (ER) and progesterone receptor (PR) positive cancer. The dutch test, is the only test I would recommend for hormone investigation. This test on me clearly showed that my hormones had taken a walk down a dangerous path that would make them carcinogenic. However, they also showed that my testosterone was low which is caused by increased cortisol levels. Combined with my years of insomnia, I knew this was correct and one very crucial piece of the puzzle in learning about my risk factors in developing breast cancer.

  2. Second, was understanding my body’s genetic capabilities.

    This can be done though DNA testing from 23andMe or Ancestry.com and then requesting the raw data and sending it to your naturopath to analyse in PureGenome free software.

After learning that I am unable to methylate estrogen, it become clear to me that my cancer could be prevented through B vitamins, magnesium and other supplements that encourage detoxification of hormones as Indole 3 Carbinol, Calcium D Glucarate, glutathione, and a diet rich in cruciferous vegetables.

Knowing all this, I feel it is important to educate other women in hopes they can avoid ever having to walk this path…

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“It’s not your fault…”

“It’s not your fault…” These were some of the first words I heard when I was seated in the surgeons office with the nurses who had just given me confirmation of my diagnosis. I suppose these words were mean’t to be comforting, but to me they were not.

Blaming doesn’t get you anywhere, but the fact that there were years of symptoms left unexplained really makes me question the role of our health system.

If you were like me, I had symptoms for 20 years prior to my diagnosis. All my symptoms were related to two things: hormones and detoxification pathways. After learning about my DNA only 1 week back we discovered that my body is unable to process and remove one very crucial hormone: Estrogen and that my body in general had a broken link in removing toxin, both a disastrous combination.

I had visited doctors numerous times for symptoms of headaches, migraines, extreme intolerance to caffeine and alcohol, swollen painful joints, chronic diahrrea, and insomnia, all at the top of the list. Every single doctor just put their hands up and said “I don’t know”.

This is the expected response when their training is confined to symptom management, screening and treatment and very limited in terms of disease prevention and understanding an individual’s unique requirements to express their greatest health.

As a public health professional I question the validity of the current state of our system in being able to keep Canadian’s healthy.

Considering the abundance of technology at our finger tips compared with the 15 minute maximum a doctor will spend with you, patients are now better informed than ever. This is an advantageous aspect that needs to be incorporated into the system.

Among policy makers and administers there is much talk on patient-centered care and individualized medicine, and I sadly need to concur that this is still just talk.

As wait time management ended years back, the current state of the health system in Ontario took many steps back making wait times worse than before the program had been implemented, was there no exit strategy in place? So I ask, how is care patient centred when family doctors now limit appointments to just one issue per visit and maximum 15 minutes per patient?

Much more needs to be done to implement theory to practice.

It’s not your fault… only seems to add fire to my flame, as I relied on the system to help me understand what was going on with my body and only with the diagnosis of cancer was I pushed into understanding that if you want health you need to get it yourself.

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