Navigating Your Cancer DiagnosisWithout a Family Doctor - My Cancer Journey by Tanya Sunshine
The breath escapes you and your heart is beating a mile a minute. You wonder if what you just felt was really there, so you feel again. It's definitely there, a distinctive lump in your left breast. What now?
A year ago almost to the day I discovered a lump in my left breast. My family and close friends said it was likely nothing, I'm at that stage in life where I'm experiencing peri-menopause, I too chalked it up to probably wacky hormones. Not quite old enough for breast screening and besides, I don't have a family doctor was sometimes what went through my head back in the day when I'd do self breast exams. But, deep down, I knew it should be taken more seriously. It was spring break and the kids were home and we were having fun, the last thing I wanted to do was head to the Urgent Primary Care Centre (UPCC) because I already knew what that would mean and I didn't want to take up a whole morningbeing there. I decided I would go once they were back in school, just a few days later.
At the time, like many British Columbians, I didn't have a family doctor. Getting up early to stand in line to make sure you get into the one and only local UPCC is not foreign to me, but it certainly doesn't mean it's welcomed. You're waiting upwards of 2hrs before the doors even open and it can be cold, or wet and with only one bench as an option to sit, it's not ideal, nor a comfortable experience. Once the doors open, you are still waiting quite awhile. I know this particular day, I wasn't home until after 12:00 and I'd arrived just before 7am.
The best part of my story was the doctor who saw me at the UPCC. You never
know who you will see, but this particular day, I got the best of the best. I think she knew what she was feeling on my body and although she never let on and even she too said, "you never know, it's likely nothing, but let's be sure shall we?", she took every measure to ensure I had all the testing done at once. This meant that instead of first going to get a mammogram, waiting for results and then potentially needing an ultrasound or biopsy and then having to wait for those separate appointments, that she scheduled them to happen all on the same day. I can't stress HOW CRUCIAL THAT DECISION OF HERS WAS. If there is anything to take away from my story, it is to know that if you find a lump in your breast and are in front of your family doctor or a clinic doctor you've never met, ask to have all tests done at the same time. Because TIME matters. I had to wait about 3 weeks until I was booked for the testing.
Here is another part of my story that is important: when you go for a mammogram, it's vital to find out whether you have dense breasts. If you do, advocate to have further testing, no matter what. Dense breasts present as a white mass, just like cancer does, so it makes it almost impossible to detect the cancer. The Health Authority says the techs will provide the information to your family doctor, but what if you don't have a family doctor? Ask questions, and make sure that you get follow up from the clinic you went to, that they arrange further testing for you. Because the doctor I had, had already set up further testing for me, I was in the unique position that when I asked if I had dense breasts and they said yes, that I knew it was ok, because I was going to have an ultrasound anyway that same day. Ultrasounds or MRI's will be the further testing type you'd need to determine if your lump is cancerous or not through dense breasts. Here is a great website that provides in depth information about dense breasts. Should you not have your own family doctor, make sure you advocate for yourself!
https://densebreastscanada.ca/
I had the mammogram, ultrasound and a biopsy done all in one visit. Not only that, the ultrasound tech said that she wanted to be proactive, again, I think they already knew exactly what they were seeing but couldn't tell me, and booked me for an MRI. She said she would use her personal connection to get me in sooner than later because getting in for an MRI appointment can take a long time. I was in that next week, May 3.
WHEN LIFE COMPLETELY CHANGED...
The very next day, Wednesday, May 4, 2022, I was called by a different, unknown doctor from the Urgent Care Centre with the results from the MRI I had done the day before. She asked if I was alone and if I was sitting down. I knew the news was going to be bad. I was alone. And I was sitting down, thankfully, because at that moment my world crashed around me when I heard her say, "I'm so very sorry to have to tell you, but you have cancer and it is serious". My first thought was, "I can't die, I have two kids who need me? How is this even possible?" My mind was racing, I was crying, but felt in shock at the same time. She told me a long diagnosis, all which I wrote down on a piece of paper I had nearby, because I knew I wouldn't remember a word she was saying to me: invasive ductal carcinoma high grade that had gone into my lymph nodes. She said I'd be getting a call with next steps and that she was very sorry. I hung up and collapsed into a wailing heap of a rag doll. My mother-in-law picked up my husband from a conference he was attending after I called him with the news, but couldn't drive to pick him up. My mom and the whole family in town came by that night. It's all a blur. Grateful for my family.
The next day I received another call from the UPCC I'd originally gone to. This call was a bit more confusing because the doctor who called wasn't sure why they were calling me? After hearing sounds of paper shuffling over the phone, I suggested maybe it was to give me more results as I'd had an MRI and a biopsy and I had the MRI results. That was indeed the situation, he said, "Oh yes, that's it, there, your biopsy results are back. Oh, it's very bad. He reiterated what the doctor had told me the day before, but added in twice, "This is very, very bad. You have a long road ahead of you. You will get a call from the South Island Integrated BC Program" I asked him when and he said, "everyone is really busy, it will likely be awhile". And with that our conversation was over.
All I know is that I have a very, very bad cancer and who knows what is going to happen next and WHEN?
It is here that I can't stress enough HOW VITAL HAVING A FAMILY DOCTOR IS if you have a cancer diagnosis. I've since found out that if I had had a family doctor I would've been told the next steps, I would've been told that 1) Yes, your cancer is aggressive, but it's ok to wait just a little bit before receiving treatment; 2) Here is the type of cancer you have and let's talk through it; 3) What questions do you have that I might be able to help with until you receive treatment?
You are completely left afloat with no idea who, what, when or how the next steps are coming. You are SO in your head you can't think straight. You can't sleep. You shouldn't worry or stress because you know that's probably not great. But, what you DO know is that your breast is changing every day, it's getting bigger, redder, more angry, more sore and since doing the biopsy there are new marks that aren't associated with the needle marks anymore. Things are progressing fast and I feel lost in this nightmare. I wasn't helpless though, I've always been someone who isn't super patient, and waiting for calls about what happens next was so excruciating that I called the UPCC a few times trying to get answers about who else could I call? I called the BC Cancer Agency who I found out knew about me, but I was still being processed. I think they could hear my panic, they were very kind and said I would likely get a call really soon, to hang tight.
The time between when you get diagnosed and when you see someone, *without a family doctor* is literally the Twilight Zone. If this crisis is not attended to quickly enough, more and more people will experience this horrible time of silence. And I consider myself one of the "lucky" ones because I DID have such an aggressive cancer. It's triaged, so what about those who have earlier staged cancers or less aggressive cancers? They'd be waiting even LONGER in that silence. Pacing in circles, sweating, fretting, crying, getting angry, being stressed, feeling alone.
There has to be a better way to inform patients without a doctor of the process between diagnosis and getting into the system for treatment. It is a vast void that needs serious attention.
I was left afloat for almost three weeks before I saw my oncologist for the first time. I'd seen the surgeon two weeks after diagnosis only for him to say there was nothing he could do for me because my tumours were too big and too far along, that I needed chemo first. We asked him when that would be and he gave a now familiar response, "that everyone is busy, it could be awhile. They will call you as soon as they have an opening. For now I will order your CT and bone density scans. Right before I saw the surgeon, I had found a lump in my neck and had a radiating pain on my scalp. I thought my cancer had spread to my brain. He added on a brain CT as well. We left so defeated and scared. The head issue produced a rash on my left side, so I had to go to the UPCC again, stand in line early in the morning, out by midday again and was told I had shingles. Probably the first time ever a doctor has had a patient whoop for joy that all she had was shingles... "You don't understand doctor, I thought I had brain cancer!"
Finally it was time to meet my oncologist, it was June 1st. I went with my husband and mother-In-law, we spent almost two hours going through my full diagnosis, which had now become Stage 3 Inflammatory breast cancer HER2 positive. We also discussed in great detail what my treatment would be – it sounded incredibly daunting. My scans had come back clear, meaning the cancer had not spread out of my lymph nodes. Once hearing that and hearing my oncologist say that she was going for the cure - EVERYTHING CHANGED for me, I felt a monumental shift within. I knew right then and there that I would do everything in my power to live up to her declaration - I would go for the cure.
A week later, June 8, 2022, I had my first chemo treatment, a week after that I had my port surgically inserted because it makes receiving numerous treatments far more bearable than numerous IV's. Two rounds of various different intensive chemo drugs, or as I liked to call it, "liquid gold" that spanned June to October, associating complimentary drugs to combat side effects, self-injections to stimulate white blood cells, lots of visualizations, positive music playlists, my phenomenal family and friends, lots of rest... and my final MRI before surgery showed ZERO cancer. There was no longer a 7cm tumour, there were no longer the other tumours, no longer tumours attached to my chest wall or in my lymph nodes. It was all completely gone. Surgery on November 4 was a success, mastectomy and a sentinel lymph node removal and the biopsy of them confirmed the MRI. I am NED, which stands for No Evidence Disease. It felt like the greatest physical, mental, spiritual and emotional achievement of my life, next to birthing my two babies.
I still had to do radiation, which started Dec 28 for 18 sessions. I like to call it my insurance policy. Because of the aggressive nature of the type of cancer I had, there was no way I could skip surgery or radiation, even though my MRI showed no cancer. I also believe cancer treatment is like antibiotics, you finish the course of treatment!
I am still going for treatment every three weeks, it's called targeted therapy, so unlike chemo, it only seeks and destroys the targeted cells, the HER2 Protein cells. Again, follow through of a course of treatment is essential and like I've found with so much of what the Cancer Agency does, so much is based from many, many people who have gone before me and what treatment has worked best for the majority of patients. I will be done targeted therapy this August 2023. Technically, I'll be done treatment - ALTOGETHER - and should be released from the Cancer Agency. Here's where a family doctor comes into play again... check this out!
When I had that wonderful appointment with my oncologist November 29 and she told me the biopsy results were clear, that I was cancer free, we also went throughwhat the next steps would be. Among the fact that my time with her would lessen, as would my blood work appts go from every three weeks to every three months, she told me what would happen in August, after all my treatments were fully done. She said, because I didn't have a family doctor that in good conscience, she could not release me from her care or the Cancer Agency's care. She said that even though she had other patients in the wings, she would keep me as her patient until I had a family doctor. The caveat was that she would act ONLY as my oncologist and NOT as a family doctor. She said, unfortunately, this is the reality and unfortunately, this also means that there is a wait list to get into the Cancer Agency because oncologists and radiologists were holding onto patients who were ready to leave, but couldn't without the care and follow up you receive from a family doctor after having cancer. Without proper care after cancer, you could fallthrough the cracks and not get your scheduled scans and follow ups. It's just too risky. I was incredibly grateful that she was keeping me on, that she cares that much about her patients and her graciousness as she told me these facts, but also felt acutely aware of the horrible position this put her in, as well as, the system and all those coming into the system. I envisioned myself all those months ago, waiting to get into the system, floundering. It shouldn't be that way. People with cancer shouldn't be waiting EXTRA time to be seen, and treated, because we have a doctor shortage. That is a very serious problem. I could also see the strain it put on my oncologist, she wants to save people's lives, not "babysit" them until they get a family doctor.
Through a series of serendipitous events, I was able to obtain an incredible family doctor here in Victoria just this past February. Come August, when I'm done with my treatment, I'll be able to free up my space with my oncologist so she can go on to save more lives! I'm so grateful and relieved on so many levels to have a family doctor to assist me with my life long, after-cancer care schedule, but I'm thrilled I will be able to free up a spot at the Cancer Agency for those who really need their care the most right now.
Movements like BC Health Care Matters are essential to what is happening in our province right now. I was inspired after my experience to volunteer my time with them. Volunteering, writing your MLA or MP, sharing this website or talking to family and friends about this will make a difference. Together we all can have an impact and shift this crisis into viable solutions!