My Diagnosis

On February 26th, 2018 I was diagnosed with breast cancer that had metastasized to my liver, bones, lymph nodes and brain. Yep, brain. Fucking shitty eh? A week prior to this I was diagnosed with breast cancer in my left breast. I saw a surgeon and met my assigned oncologist at BC Cancer agency. This is where you are sent immediately (at least I was rushed) when the big C is on your tail. On this day there was hope in her (oncologist) voice. My biopsy result had still not come in but all signs from the mammogram and ultrasound 2 weeks prior pointed to cancer. She presented me with 2 plans, a “cure” plan and a “maintenance” or “quality of life” plan. It wasn’t until the following week when my biopsy came back, my PET scan results were in and my full body MRI was reviewed that they took away the “cure” plan. The smile I woke up with that morning, and the laughter that came out of me hours before my appointment immediately left me as if I have never laughed or smiled before. That story will be published in a separate post. In this interview with myself, I’m going to focus on my diagnosis, my treatment plan, my reasons, and my progress. It will give you a base to understand this past year and more about the specific ins and outs of my type of cancer. I will do my best to keep the medical jargon to a minimum. Please keep in mind that my experience below is my opinion about the medical process and protocols in Canada. I do not mean to offend anyone that has been through it with success or a different experience than mine.

What were your symptoms?

In November of 2017 Claire and I were spending a month in Mexico. About halfway through, my left arm close to my tricep started to hurt. I couldn’t really lift anything heavy, any movement in the wrong direction would send a shooting pain down my arm. At the time, I thought it was something I did to myself. Not sure what though, there wasn’t too much strenuous activity in Mexico. When I returned home I started yoga 4-5 times a week to hopefully resolve this “pulled muscle”. By January it wasn’t any better— worse actually. So I decided to hold off on the activity and started going to physiotherapy. That didn’t work either. I’m not keen on chiropractors, but at 2 months into this pain and limitation in my arm I was willing to try anything. I went twice. I stopped because that is when it appeared.

On Monday January 22nd, I was working from home. I noticed my left breast kept slipping out of my bra. I didn’t think anything of it. I thought my bra shrunk in the wash. Not even a thought in my mind that it could be something. On January 24th, I glimpsed in the mirror to see my breast was almost double the size of my right. If you know me, you know, that is pretty damn big! It was very red, almost swollen-looking, and rock hard. It felt as though it was a fake breast— not the fun kind. The pores in my skin were so stretched it looked like the skin of an orange (called edema). It did not hurt in anyway. My only limitation was sleeping. It was just too hard and big for me to sleep on that side. This was ok though because for the last 2 months I couldn’t sleep on my left side due to my arm pain anyway.

What initial tests did you receive?

On February 1st I was sent for an ultrasound. On February 2nd I had my mammogram and on February 13th I had a biopsy of my breast and lymph node. Now, the biopsy made it angry. They literally stabbed the bear. My breast grew larger, redder and was quite sore. To this day I can still see the spot where the needle when in. On February 16th I paid for my own full body MRI. The MRI is a less toxic way (PET Scan uses radioactive dye and radiation and CT scans use radiation) to see your entire insides— in 3-D. It costs $2600 but it was the best money I have ever spent. In BC, maybe even all of Canada, they do not administer full body MRIs to patients. I think it is because it takes about 2-3 hours, it’s expensive and the MRI shows you everything and nothing. It picks up on every little thing that could possibly be going on in your body whether it is severe or not. It could really send you on a tail spin of “what do I have?” if you weren’t actually looking for something. From what I know about the healthcare system, this is my opinion of why they don’t do it.

What type of cancer do you have and where is it?

I have HER2-positive metastatic breast cancer. HER2+ breast cancer is a cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells have a gene mutation that makes an excess of the HER2 protein. HER2+ breast cancers tend to be more aggressive than other types of breast cancer. My doctors do not feel it has been in my body for very long.

It was two lumps in my lymph nodes, 3 in my left breast, 2 lesions on my liver, lesions on my sternum bone and 3 spots on my brain. I did not have any side-effects from the lesions on my brain. The placement of them would effect my balance, short-term memory and speech.

What does HER2+ mean?

There are many differences between HER2 positive and HER2 negative breast cancers. HER2+ tumors are often more aggressive (have a higher tumor grade), are more likely to spread to lymph nodes, and have an increased risk of recurrence. It's been noted in the past that HER2+ breast cancers are more likely to metastasize, especially to the brain.

Breast cancers differ in the proteins found the cell surface, proteins which are responsible for the growth of the tumors. These proteins are in turn related to different abnormalities in the genetic material of the cancer cells. Many people are familiar with estrogen receptor-positive breast cancer, in which estrogen binds to the increased numbers of these receptors on breast cancer cells to stimulate the growth of the tumor. What occurs with HER2 positive breast cancers is similar, but it is a different type of receptor on the surface of the cancer cell which drives the growth and spread of the tumor. I am estrogen and progesterone negative.

The HER2 gene is a gene (one that we all have) that codes for proteins involved in the growth of breast cells. HER2 genes carry the instructions for making HER2 proteins. These proteins function as receptors on breast cells. When too many copies of the HER2 gene are present (due to damage to the genetic material in the cell or mutations) it results in the overproduction of HER2. HER2 positive breast cancer cells have 40 to 100 times this number. When growth factors in the body bind to these receptors, it results in the overgrowth of the breast cells.

What stage is your cancer?

From the beginning I have preferred not to categorize my cancer into a stage. Medically it may mean something but to us regular people it just scary. The higher the number, the more terrifying it gets. They don’t take my health, my age or my general outlook on life into account when the categorization is made. I’m lumped into a statistic of survival rates because the cancer has spread to other more life threatening areas like the liver and brain. I am me. I’m not the same as a 70 year old women who is obese with the same cancer. I’m not even the same as a 30-something healthy women with the same cancer. If you walk into a chemotherapy clinic you will understand why I don’t use this reference. I don’t feel like I should be in the same category as some of these people who are experiencing so much worse than I am.

Why did you decide to move from BC Cancer care in the city to Lions Gate hospital in North Vancouver?

I was fortunate enough to have met a woman who had gone through the BC Cancer protocol as well as the Lions Gate protocol. Her opinion, along with my cancer consultant’s opinion convinced me I would be treated more as an individual at Lion Gate. They wouldn’t just lump me into the protocol that is given to every person regardless of their age, health, etc. BC Cancer does amazing things in the world of cancer and many people have benefited from the treatment provided. I just felt caught up in a lot of red tape and politics. My team at Lions Gate are known for pushing the limits and thinking outside the box. Taking my individual needs into consideration when recommending a treatment plan. I felt as though BC Cancer takes away your choice to advocate for your own health based on what your body or gut is telling you.

Who is on your medical team?

Dr. Paul Klimo - We call him the “Godfather” of cancer treatment. This guy is a damn boss! Patients love him and medical professionals probably wish he would just retire. He pushes the envelope and bends over backwards to pull a treatment plan together that suits you and your needs. He has tried to retire like three times but keeps coming back to consult. Every time I see him he treats me like i’m his granddaughter. So compassionate, but also gets to the point and gets shit done because he is a very busy man in high demand.

Dr Sasha Smiljanic aka Dr. Sasha - My practicing oncologist. He was trained by Dr. Klimo and took over his practice at Lion’s Gate Hospital. Think George Clooney in ER. Yep, my doc is a hottie! It is in his presence. He maybe doesn’t push the limits as much as Klimo but probably because he deals with the wrath if Klimo does. He is just a wonderful human and I’m so lucky to have someone who works with me to figure out the plan that works best for me.

Dr Walter Lemmo - My Naturopathic Physician. He owns a clinic specializing in integrated cancer care. He works well with my two oncologists and is on the cutting edge of natural care for cancer. He is an important addition to my team as I choose to have a major focus on natural protocols to assist with my cancer treatment. We keep my immune system booming so I can fight the cancer from all directions. I have to mention his receptionist/nurse as well. Her name is Maria and she comes across quite abrupt at first, but once you get to know her she is so kind and quite hilarious at times.

Anthony Fulker - He is my Cancer Consultant or Advocate. Anthony is this shining star of a human who helps people navigate through cancer out of the goodness of his heart. He works with doctors all around the world bringing alternative treatment plans to people with an open mind. He makes sure you have all the possible information and avenues and then supports you in whatever decision you decide on. He works closely with Dr. Lemmo in providing a plan that will keep my body strong even if i’m going through a more pharmaceutical approach to my treatment. He is constantly bringing me new trials and methods to prevent the cancer from returning.

Dr. Brain Mackenzie - My brain oncologist. This guy is what you expect a brain doctor to be. Long, lanky and uses big words. He really takes the time to explain everything I need to know and even sits down with me to review my scans.

What kind of natural approaches did you start?

I am on a variety of supplements to help boost my immune system for my body to fight some of the bad cancer cells. It also keeps the rest of my body healthy so that I’m prepared for any changes in my protocol or health. Supplements include: Mushrooms (Reshi or Turkey Tail), Vitamin-C IVs , Allimax, Resveratrol, Pro-Biotics, Omega-3, Curcumin, Collagen, High Does of Vitamin D, Vitamin K. I also use many essential oils on my body as well as ingesting.

As for my diet, in the beginning before I started treatment I cut out anything that would inflame the cancer or essentially feed it. I cut out sugar, gluten, dairy, alcohol, even fruit in the early days. Since my type of cancer is known for rapid growth, I needed to ensure I kept the growth at a minimum so I had time to make decisions about my treatment plan. I eat primarily organic to keep toxins low in my body. I lost 12 pounds and have been able to keep my weight steady. I look and feel amazing! Abs are made in the kitchen! Over the last few months I have moderately introduced everything but sugar back into my diet. Funny thing is, after you remove it all and feel so great, you don’t really feel the need to eat a lot of it again. I can feel it in my body when I have eaten something that is not good for it. I also have switched to all natural body products and household cleaners.

What was your treatment plan? How long do you have to be on it?

Treatments that specifically target HER2 are very effective. These treatments are so effective that the prognosis for HER2+ breast cancer is actually quite good. I receive IV treatments at the hospital every 3 weeks. I’m there for about 2-3 hours each time. My doctors want me to be on the Herceptin and Perjeta indefinitely. My thoughts, we will see. My goal is always to remove all pharmaceutical drugs from my protocol and continue with a more natural plan.

Trastuzumab (Herceptin) - is designed to attach to the extra HER2 proteins, which stops the growth of the cancer. This is the main treatment for my type of cancer. It has only been available under medical coverage for about 10 years. There is a documentary about this drug on iTunes.

Pertuzumab (Perjeta) - Added to the line up in the last couple years to double up on blocking the receptors from releasing the additional proteins.

Docetaxel (Taxotere) - is a chemotherapy. I only received one 25% dose in March and then decided not to continue.

Why did you decide to stop chemo?

I only completed one 25% dose of chemo. The small dose was to hopefully save my fertility. I only did the one because in Canada they will not give you the immunotherapy drugs without combining it with chemo. I took a stand after my first one and made a decision based on much research and consultation from my team. Some people going through cancer may think they don’t have a choice in their protocol. I call bullshit on that. You need to arm your self with as much information as possible to make informed decisions and to be your own advocate. I didn’t want chemotherapy to be my first resort. It kills the cancer cells, yes, but it also kills the good cells I need to fight. I wasn’t ok with giving up that much of myself and truly believe there is a better solution for me. Certain standard chemotherapy drugs can be effective in treating HER2+ breast cancers, although these drugs don't specifically target the HER2 protein. It doesn’t prevent the cancer from coming back. People with HER2+ tumors are less likely to respond to breast cancer chemotherapy than those who are HER2.

What were the results of your first MRI and PET scan after you started treatment?

I received my first PET scan and brain MRI in June. Both were very positive. My liver was clear and all spots/lumps in my body were shrinking. My brain MRI showed that the two spots had responded well to the targeted radiation I had received in March. I receive PET Scans and brain MRIs every 3 months.

How did you know the cancer flared up again?

In August, after a pretty busy summer socializing and travelling I all of a sudden got very tired. I was sleeping 16+ hrs a day for multiple days in a row. I started to be in a lot of pain in my chest and collarbone area. At first I brushed it off as just being socially tired. I thought the pain was from playing goal for the first time in 5 years. By the end of the month I knew it wasn’t those things. My body normally doesn’t take that long to heal an injury and the exertion effects never last that long. I also received another targeted radiation treatment on a new spot in my brain that was caught in July. I went to see Dr. Klimo for my regular appointment and as soon as I walked through the door he could see it in my face that something was off. My lymph node had doubled in size as well as the one lump in my breast. The pain was caused by the lining of the lymph node being stretched so much that it was pulling everything it was attached to crossed my chest. You don’t realize how much you use your chest muscles until you are in that much extreme pain. No wonder I was sleeping so much, my body was working overtime trying to tackle so much.

What protocol change did you go through?

An oral chemo pill was added to my protocol. This pill has low side-effects. It doesn’t kill hair follicles— thank the universe. It does drop my red blood cell count and iron so I am deficient at the moment and become tired easier than normal. I’m working with Anthony to get me back up though. One other side-effect is soreness in my hands and feet. If I ask you to open up a jar for me, that is why. My feet feel as though I have been wearing heels for 4 hours, sat down for 30 minutes, and then went to walk again. Yeah girls, you know the feeling. At certain points during the treatment it is worse than others so I cope and adjust my lifestyle. My doctors want me to be on these pills indefinitely, but i’m already working with Anthony on a plan to get me off them sooner than later.

How are you doing now? (November)

I am very happy to report that my PET scan and brain MRI came back positive. All 3 spots on my brain are inactive and responding to the radiation treatment. My liver is still clear, my sternum is damaged but has minimal cancer activity, 2 lumps in my breast have resolved and the third has low-grade activity. My lymph nodes are basically back to normal.

I’m back at work part-time and plan to be full-time in January. I’m back in a regular exercise routine since the pain has subsided. Overall i’m feeling quite, normal.

What are the next steps?

I will continue to receive immunotherapy every 3 weeks. My goal is to remove the chemo pills from the line-up in the new year if all is well after my next scan. I will continue with my healthy lifestyle and continue to review and switch up my natural protocol to keep my immune system fresh and boosted.

Will you ever be cancer free?

I think of my cancer as something I will have to maintain for the rest of my life. Like someone with kidney disease or diabetes, you need to take care of yourself and stay healthy to reduce your risk of reoccurrence or symptoms increasing. The cancer may disappear from my body but there is always a high probability it will return one day. Every person with cancer is different, so no one can predict it. Also the cancer has a tendency to change. In this case my current treatment plan may stop working and we will have to start over to find the best treatment to suit the changes. I don’t believe there is a be-all, end-all cure for cancer. There is so many complexities with each type and no person responds the same. Add in the ability for it to change it’s composition and we have a real beast on our hands. My goal is a prolonged and quality life. Every decision I make has that in mind. Fortunately, breast cancer is highly researched and there are constantly new treatments coming out. So, I push through in hopes that down the road there will be something new to help me get one step closer to old age. For now, I strive to a quality of life similar to what I had before this year. As long as I can still travel, hike and snowboard I’ll be ok—hell I’ll probably do more of these things now.