NOTES FROM JANE

As part of the Hope Flows Breast Cancer Initiative, we have opened our hearts and platform to honor the unedited, raw stories of women who are ready to share their personal journeys with Breast Cancer. It is our collective hope that through these stories, we will all learn, grow and be moved to action to create massive impact in the fight to end breast cancer, together.

Today, it is our privilege to introduce a new, 9 WEEK series entitled NOTES FROM JANE. Over the next several weeks, Jane will candidly walk us through her unique experience and perspective of her journey with Breast Cancer:

 

NOTES FROM JANE

Week 1: Early Detection & Mindset

Personally, I was “lucky" as my 2 micro sized (<5mm) +++ (triple positive) Breast Cancer tumours were discovered by a keen eyed Radiologist during a routine mammogram.

Once discovered, my Surgeon looked me straight in the eye and told me I will not die from this as it is treatable. I believed him and trusted the science.

I learned that EARLY DETECTION is one of the MOST IMPORTANT steps for treatment, recovery & extending life expectancy for most breast cancers.

Six years later I am now near the end of my treatment journey and I’m willing to share my story...

Week 2: Treatment Plan

Considering there are many different cancers, there are just as many personalized treatment plans.

In Canada, when diagnosed with cancer you are elevated to high priority in our medical system and have a panel or board of doctors that together, decide your individual treatment plan.

My initial treatment plan was to immediately go off HRT (aka Hormone Replacement Therapy) that I was on for 8 years for debilitating menopause symptoms and to have Lumpectomy surgery to remove the tumour, along with a Lymph Node Biopsy, followed by 20 days of localized High Dose Radiation.

BTW, my cancer was NOT caused from HRT. It just was just one risk factor. I was told my primary risk factor was age. I learned breast cancer rates sky rocket after age 50 often due to a lifetime of estrogen exposures and other factors such as number of pregnancies, number of births, breastfeeding (the more, the better), lack of exercise, alcohol consumption, smoking, birth control pills, genetics, etc.

Thanks again to early detection, my biopsy showed my cancer did not get into my lymphatic system so that was great. It meant less invasive Radiation and Chemo treatments than if it had spread. Whew!

My Oncologist decided not to prescribe Chemotherapy or adjunct therapies such as an Aromatase Inhibitor oral prescription (a.k.a. hormone blockers) because my tumours were so small.

At first I was thrilled NOT to be going through Chemo. However, I soon learned life throws a curve ball sometimes.

Week 3: Western Medicine & Integrated Holistic Health

Once diagnosed, I also found a certified Naturopathic Doctor (ND) who was a cancer Doctor in Egypt but since immigrating to Canada now practises as a ND catering to cancer patients, like me.

Strangely, he was the one that VERY DIPLOMATICALLY asked me to go back and speak to my primary Oncologist.
I then pressured him to explain why? Basically, he did not understand my treatment plan and questioned why they would not have at least administered Endocrine therapy (prescription pills) and possibly Chemo therapies (infusions) considering my cancer tested +++ (triple positive).

Unlike most ND’s, mine did have access to global Oncological clinical data so he knew what he was talking about.
Triple positive +++ means my cancer receptors fed off 3 things - estrogen, progesterone and HER2 protein.

HER2 protein is treated with Herceptin, a 12 month protein anti body infusion alongside 3 months of Taxol aka the chemo that makes your hair fall out. Herceptin is clinically proven to dramatically increase life expectancy as it's HER2 protein that makes breast cancer highly invasive & VERY LIKELY to return. Herceptin is a life saving therapy for millions of women around the world.

I learned my tumours fell outside of medical clinical data. No one has done certified cancer research on breast micro tumours (6mm or less). My 2 tumours were 5mm and less.
Canadian Oncological protocol states it is up to the Oncologist to determine the treatment plan in micro tumour situations like mine as there is no data to support it.

I then returned to my initial Oncologist as I had decided I wanted a 2nd opinion.

UNDIPLOMATICALLY my primary Ontario Oncologist granted me a 2nd opinion referral to a cancer care hospital in Toronto. She made me cry when I asked. I brought my husband with me to that appointment for moral support because I felt she was not going to like me questioning her professional treatment plan that would be disclosed to her peers.

When meeting my new Toronto Oncologist I was informed, in her opinion, I should have never been denied life saving Chemo or Endocrine therapies.

After that doctor picked me off the floor because I was sobbing crying she explained to me there’s clinical evidence to support that Chemo and Endocrine therapies work for women with 6 mm tumours so why wouldn’t it work for my 5 mm tumour?
She was right. It’s still puzzles me today why my first Oncologist Dr. denied me that treatment knowing it has life-saving potential.

I had returned to work following my 3 months off for Lumpectomy Surgery and Radiation recovery. I now had to take another 4 months off for Chemo & recovery.

I had a Chemo Port surgically installed into my chest and neck area that fed into my carotid artery for receiving Herceptin infusions every 3 weeks over 12 months at the hospital.

Herceptin is typically prescribed alongside Taxol. Taxol is a drug that kills rapidly dividing cancer cells & also unfortunately targets rapidly dividing hair, skin, nails & mouth cells while they are replicating in your body while chemo does its “killing thing” over the 3 hour period its surging through your veins.

Typically, patients have Chemo before Radiation so they can install the Chemo Port into tissue that has not been damaged by radiation. Because my chemo treatment was delayed & backwards, I had surgery right on top of freshly radiated tissue. It turned out OK in the end but this is not the normal protocol. So be it.

My greatest take away is I recommend you follow your Dr’s advise BUT also trust your instincts and don’t be afraid to research & challenge authority.

WEEK 4: Be Your Own Advocate & Trust Your Instincts

I am so grateful I decided to pursue the guidance of a Naturopathic Doctor ND alongside following ALL recommended western medicine treatments as I knew in the bottom of my heart something was not quite right within my body & that’s why I got cancer.

I feel like I tackled my situation with a 360° approach by combining western medicine & lifestyle changes including a healthier diet, nutrition, supplements, exercise, stress relief, better sleep, etc.
During Chemo, I had typical symptoms such as mouth sores & the hospital suggested I treat it with baking soda water rinses. It did not work at all.

My ND prescribed a different treatment, L Glutamine - an animo acid which healed every one of my mouth sores within days. That’s when I decided he knew what he was talking about! This is just one example of how my ND really HELPED me treat EVERYONE of my drug side effects & symptoms ALONGSIDE ALL western medicine treatments.

I informed my Oncologist of all my supplements to ensure no contradictions with Chemo. I didn’t have any contradictions as my ND had the knowledge base to wholly understand my treatment plan & adverse reactions.

My Oncologist stated there is no certified medical clinical data to support L Glutamine helps treat cancer mouth sores. All I know is it worked and I was grateful not to suffer mouth sores or any digestive tract issues.

For the last 4.5 years I have been on Endocrine/hormone blocker therapy so every 6 months I check in with my Oncology Nurse Practitioner for breast health follow up & my ND for overall health symptoms & support. I also see my GP Dr. every 2 years for routine early detection blood & urine screenings.
Unfortunately there are a myriad of bad side effects from my Endocrine/ hormone therapy. Symptoms have been described in laywomen terms as Menopause on STEROIDS or in other words, imagine suffering with PMS or Menopause X 1000%. That’s how they make me feel. It has effected my mental health, sleep, skin, bone density, sexual health, stamina, etc.

Alongside all my MD’s including my Gynaecologist as unfortunately hormone therapy also wrecks havoc on reproductive health & my ND, I feel I have a great health care support system.

I know many people can’t afford a ND so I suggest they ask their Dr. for a Gov’t covered Dietician or Nutritionist referral for diet & supplement support.

I truly feel Integrated Medicine, incorporating a holistic approach to health is the future of medicine. Over my life, I have had ND’s treat my immune health issues through diet & nutrition so I know it works but I know it is not a stand alone panacea for life threatening conditions. It should be used to enhance Western Medicine NOT just used alone, in my opinion.

I learned a lot from all my Dr's & health care professionals but what I learned most is how important it is to trust my gut instincts & be my own health advocate.

WEEK 5: Be Your Own Advocate & Trust Your Instincts

I am so grateful I decided to pursue the guidance of a Naturopathic Doctor ND alongside following ALL recommended western medicine treatments as I knew in the bottom of my heart something was not quite right within my body & that’s why I got cancer.

I feel like I tackled my situation with a 360° approach by combining western medicine & lifestyle changes including a healthier diet, nutrition, supplements, exercise, stress relief, better sleep, etc.
During Chemo, I had typical symptoms such as mouth sores & the hospital suggested I treat it with baking soda water rinses. It did not work at all.

My ND prescribed a different treatment, L Glutamine - an animo acid which healed every one of my mouth sores within days. That’s when I decided he knew what he was talking about! This is just one example of how my ND really HELPED me treat EVERYONE of my drug side effects & symptoms ALONGSIDE ALL western medicine treatments. I informed my Oncologist of all my supplements to ensure no contradictions with Chemo. I didn’t have any contradictions as my ND had the knowledge base to wholly understand my treatment plan & adverse reactions. My Oncologist stated there is no certified medical clinical data to support L Glutamine helps treat cancer mouth sores. All I know is it worked and I was grateful not to suffer mouth sores or any digestive tract issues.

For the last 4.5 years I have been on Endocrine/hormone blocker therapy so every 6 months I check in with my Oncology Nurse Practitioner for breast health follow up & my ND for overall health symptoms & support. I also see my GP Dr. every 2 years for routine early detection blood & urine screenings.
Unfortunately there are a myriad of bad side effects from my Endocrine/ hormone therapy. Symptoms have been described in laywomen terms as Menopause on STEROIDS or in other words, imagine suffering with PMS or Menopause X 1000%. That’s how they make me feel. It has effected my mental health, sleep, skin, bone density, sexual health, stamina, etc.

Alongside all my MD’s including my Gynaecologist as unfortunately hormone therapy also wrecks havoc on reproductive health & my ND, I feel I have a great health care support system.

I know many people can’t afford a ND so I suggest they ask their Dr. for a Gov’t covered Dietician or Nutritionist referral for diet & supplement support.
I truly feel Integrated Medicine, incorporating a holistic approach to health is the future of medicine. Over my life, I have had ND’s treat my immune health issues through diet & nutrition so I know it works but I know it is not a stand alone panacea for life threatening conditions. It should be used to enhance Western Medicine NOT just used alone, in my opinion.
I learned a lot from all my Dr's & health care professionals but what I learned most is how important it is to trust my gut instincts & be my own health advocate.

WEEK 6: Build a Support System

Cancer is scary. All of it.
Looking back, I believe it was the fear of the unknown that caused me the most stress. Now that I understand the process it is not as scary to me. 

I was petrified to lose my hair. More on that later. I was afraid of surgery. Now I am not. I knew I was strong but didn’t know how strong I was until cancer came knocking at my door.

We all deal with complex health issues in our own ways. Personally, I did not feel comfortable sharing my story online. Instead, I relied on my close personal relationships with friends, family and colleagues, the Internet (much to my Dr’s polite dismay when I discussed my WEB MD findings with them & questioned what I learned) and I relied on my multiple healthcare professionals.

I deliberately did not communicate with people that I felt may cause me more stress & inhibit my recovery by giving me their unwanted & unhelpful opinions.
Cancer pays an emotional toll on our bodies. A few years after my diagnosis & because I was taking estrogen hormone blockers, I was an emotional wreck. Mainly tied to my sexual health & overall stamina. I was now deformed from surgery & radiation (more on that later) while living with the side effects of no Estrogen which is our female “youth” hormone. I asked my Gynaecologist for mental health support when I was at her clinic during a routine check in, crying my eyes out over my state. She connected me to a Sexual Therapist/Psychologist. Thankfully, she too helped explain to me what was going on within my mind & body. She helped coach me through the emotional turmoil I was experiencing.
I discovered most good cancer care healthcare professionals have experience and/or training in Psychology. My Medical Dr’s & Nurses, Naturopathic Dr. & Therapists were for the most part very caring. Cancer can mess with your mind and if they are good at their job they will help you to feel cared for and reassured.

I believe it was my human nature instinct & Dr’s advice that led me to source a support system during my cancer care. I encourage others to do the same. Your Dr’s will help guide you through this if you ask for help.

WEEK 7: Unexpected Challenges & Learning Opportunities

Rightfully so, Cancer Dr’s only share essential information, not information that is nice to know. They don’t have time for that nor is it in anyone’s best interest to scare a patient about something that may not happen to them. Each person‘s reaction to treatment is different.

Regarding the dreaded hair loss, I asked my Toronto Oncologist if in her opinion there were any treatments that helped to prevent hair loss as I had read about a specific one online. Because I was on low dose weekly chemo she said I may be a candidate for something called cold cap therapy. It is the same treatment I had researched on my own.

This is not a therapy offered in Ontario hospitals through our healthcare system. The gist of it is, while chemo is surging through your veins, killing rapidly dividing cancer & other cells, if you keep your scalp temperature cold, the blood supply to the hair root will be somewhat constricted and a lower surface skin & hair temperature may not replicate cells as quickly as they more or less go into a dormant state.
I researched companies offering this product but they were expensive and could not guarantee success. So, I figured I could make my own for a fraction of the cost. I asked my artist husband to help me build 3 custom fit ice caps out of gel compresses sold at the pharmacy & duct tape. I froze them solid in my lowest freezer temperature setting and took them to my Chemo infusions in an ice filled cooler on wheels. At my hospital, the chemo nurses had not yet met someone who had tried cold cap therapy. They were as curious as I was as.

For me it worked. I only lost approximately 10-20% of my hair.
It is my understanding cold cap therapy may not work for women who receive high-dose chemo because it is much more strong and has worse side effects than what I endured.

As my treatment plan evolved, I learned what was happening within my body. I knew I would have an indented scar following the lumpectomy surgery & radiation but did not realize it would look like a highly visible dog bite/chomp located in my cleavage area. It was noticeable in bathing suits, bras & low-cut clothing. I also had no idea that my radiated surgical breast would shrink to 1/2 its size one year after radiation, which apparently is the norm. That left me quite asymmetrical and I felt even more deformed.

The thought of having a reconstructive surgery was not a consideration during my first few years of treatment because I could not wrap my head around any more invasive procedures. Because of that I wore a custom prescribed prosthetic gel insert inside my bra so the shrunken radiated breast would appear the same size as my healthy breast, in clothes.

Over time, I concluded I would prefer to have a breast reduction on my healthy breast as to create better symmetry & so I wouldn’t need to wear a prosthetic insert. After waiting for over a year (as I live in the country) I decided to ask if I could go to Canada’s leading Cancer Care Hospital in Toronto. Much to my delight, I was scheduled right away. I asked my Plastic Surgeon if she could fix my lumpectomy “dog bite” scar and she unfortunately said no. I didn’t question her authority - at the time.
Following my reduction surgery I found out through other reliable sources that my Lumpectomy scar could have been revised. Again, I didn’t understand why my world class Plastic Surgeon said no. I then planned on broaching the matter during my 6 month check up with her.
Along came Covid, so I did not get my 6 month check in nor did I care. Post Covid, I decided to get a 2nd Plastic Surgery opinion at a different hospital. My 2nd Plastic Surgeon said yes she could fix my Lumpectomy scar AND also offered to fix my under arm Lymph Node Biopsy scar AND she offered to give me another Partial Reduction on my healthy breast because, believe it or not, for some women, healthy breast tissue reforms when removed, as in my case. In other words, a year after my breast reduction the healthy breast had grown back again. If it’s possible to adore a Surgeon, I do mine. She demonstrated so much care that she made me cry, in a good way, because she was SO willing to help me. I am grateful I found her.

In the spring of ’22 I had my 2nd reconstructive surgery including scar revisions. Personally, I feel I look better and look forward to my next surgery to finish the scar revisions. The revisions are over a few surgeries because it involves a fat transplant and must be done incrementally so the breast does not reject the fat transplant.

I would never have believed at the beginning of my journey that I would have 6 surgeries in total, but here I am. I had a tumour removal & lymph node biopsy surgery, a chemo port insertion & removal surgeries and 2 plastic reconstructive surgeries, to date. My 3rd and last reconstructive surgery will be in the spring of ’23.

I now live my life not fearing surgery, which I feel is a good thing. I respect it and I heeded my Surgeon's recovery advice, hence I have recovered well & live a full healthy life.

**I am not a Medical professional nor do I provide healthcare advice. I’m simply sharing my own personal experiences and what worked for me.**

 

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