How I found out I had Metastatic Breast Cancer

I know everyone is curious about how I found out my cancer had returned and was now Metastatic. Here’s the story:

Let’s rewind the clock to summer 2017. We went up north and I was living my best summer life. Hanging with my husband, kids, family and friends by the lake. I went on walks, had coffee by the lake and watched the sunset. Shortly after arriving at the cottage I felt a pain in my lower back. The beds at the cottage are old and not the best so I figured that was the problem. I would take an Epsom salt bath while listening to Podcasts and I would feel better. I got a massage and afterwards felt amazing for about 10 days. But then the pain came back in my right thigh after I had gone on a really long walk the day before in my Birkenstocks sandals. I figured I made a bad decision by wearing Birks and got another massage.  I always had a reason as to why I was having pain. The pains would come and go but it was never too horrible that I couldn’t function and do things. And with a massage and/or Advil it would go away.

renee my so-called mommy life metastatic breast cancer

In September I had my regular 6-month appointment with my oncologist. I was being followed every 6 months at the time because I was doing so well on my hormone treatment medicine, Tamoxifen. I met with the resident who went over how I was feeling,  and we spoke in length about being referred to Sunnybrook Hospital for the BabyTime Study which supports women getting pregnant after cancer.  I was hoping to look into having a third kid. After discussing a whole bunch of other stuff, I mentioned the pain I was having in my thigh and lower back. She didn’t think it sounded like metastatic breast cancer (cancer that has spread outside of the breast) as the pain came and went and did not get progressively worse. But she said she should do her due diligence and send me for a Bone Scan anyways. I would come back in 2 weeks to get my results. 

At the hospital I’m at they implemented a new online system where the secretaries encourage you to sign up when you check in for your appointments. Between that first doctor’s appointment and my Bone Scan, I signed up. I didn’t really understand how the system worked but I knew that my results would be posted there and decided that I wouldn’t check it until after seeing my doctor. 

renee my so-called mommy life metastatic breast cancer

On the day of my follow-up appointment, my husband and I went downtown to the hospital. I expected to hear that I was ok, maybe had arthritis and would be sent on my way. What happened was the opposite. The resident walked in and right away looked at me and my husband and in a matter-of-fact tone, said something like “so you know the cancer has spread and is metastatic”. WAIT. WHAT?  NO! I didn’t know. I was floored. Devastated. My ears started ringing. I saw her mouth move but nothing processed. I couldn’t hear a word that was coming out of her mouth. 

The resident assumed I knew. She assumed I read my results online. At that moment, she backtracked but it was too late. I was told the most devastating news in the most horrible way. 

I asked to see my oncologist. He came in and had to do damage control. I still didn’t hear much. Thank goodness my husband was there, but I don’t think he heard anything either. We cried. I was numb. So numb. 

How was I going to go home to my kids? My babies, whose mom now has a terminal disease with no cure? 

Then I was told I needed more scans to figure out where exactly it was and to rule out/rule in any organ involvement. More stress. More worry. Within 2 weeks I was told I had the “best of the worst” and that my cancer was in my bones (not all of them. Just some tumours in some bones) with no organ involvement. 

I was given  information on the first line of treatment I would receive. But I had a choice I could ask my insurance company to pay for a drug that the doctor knew they wouldn’t pay for or be forced to go into a trial for a drug that is coming to market very soon. 

I don’t remember much of those first few days after getting this news. I cried. I cried a lot. I tried to focus on other things like work and my kids but I just couldn’t. All I kept thinking about was that I was dying, and what would my family do? Those days were so very dark and heartbreaking.  I’m at a hospital that has lots of resources and is rated one of the top Cancer Hospitals in the world. No one at the hospital connected with me to see how I was and if I needed anything. No one made sure I had an appointment with one of the psychiatrists. No social worker, No nurse practitioner, nor my oncologist checked-in.  I was given the most devastating news and fell through the cracks and was left to figure this all out myself with the help of my family. 

So that’s how this all went down. I’d love to say it got easier but it didn’t as we were about to embark on a fight with the insurance company for me to get my medication paid for. Stay tuned……its a doozy. 

 

Comments

  1. Aneta says:

    I am so sorry that this was your experience Renee.

  2. maggie says:

    Hi Renee – have you connected with Nalie Agustin – she is going thru something very similar and she can help w/ some of her natural remedies…..

  3. Ellen says:

    Sending love and support your way. When you told about the news you heard and just watched the lips move – I can relate so well to that. You are so strong and your amazing attitude is so inspiring! Thank you for sharing Renee! Love you!

  4. dlcmedia2016 says:

    I am furious that no one followed up with you. Holy crow, that hospital should know way better than that. Sending love and strength, though you are amazingly strong already. xo

  5. Meg says:

    This is truly disappointing. I had a wonderful experience with my dad at PMH, but the exact opposite experience there with my best friend. I’ve come to realize they are more concerned with researching and if you’re a candidate for trials. My dad was, therefore treated like a star. Once you’re terminal or not a candidate for their trial they don’t even care to treat you. Shame on them for claiming they’re one of the top cancer centre’s in the world and expecting you to go online yourself for results. Especially results so devestating! It’s absurd. Not to mention to offer zero support or social workers information. I do hope you voice these “drop the ball” concerns with someone high up there. Big hugs momma and sending you all the positive vibes. Cancer does not define who you are not run your life, no matter how bad it seems.

  6. Rochelle says:

    My gosh Renee I have no words. I am always thinking of you guys. Sending you a big hug.

  7. Katie Perkins says:

    I am so mad. What the actual eff. Even if you had read the results online, one should never assume that you can interpret a scan or a physician written report, independently. That resident learned a valuable lesson I just wish it wasn’t at your expense. Ignorant. Also, like how is it that there is no process or protocol that involves support or resource in this top hospital. ?????????????

  8. I feel gutted that you didn’t have a more compassionate experience for something so devastating and hard. Your voice will give comfort to those who need to hear it. We are all standing behind you.

  9. Rachelle says:

    Renee, I am so sorry to hear this all. Thank you for being so honest and open about your experiences. Thinking of you.

  10. Ladena says:

    What a terrible way to learn that your cancer returned. I’m so sorry this happened. I really hope you are getting more support and more caring health practioners now.

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