Hindsight is 20-20

On December 16, 2009 I was taking a shower before going to bed when I felt a lump on the left side of my left breast. I am not a hypochondriac. As the title of this blog implies, I don't get sick very often. I don't automatically think the worst of every situation. I do have strong instincts. I knew it was cancer. I was even more convinced after I did the one thing I'm sure most doctors dread hearing--I googled it. The lump was about 2 cm wide and long, was hard, but not painful, and it didn't move. All signs of a breast cancer tumour.

This was indeed confirmed a few weeks later, just into the new year, after a mammogram, ultrasound and biopsy. It's important for me to note that had I just stopped at the mammogram the rest of 2010 would have played out quite differently as I was told it wasn't anything significant and it should be checked again a year from then. I didn't settle for that, and luckily neither did my nurse practitioner, so I pushed for the ultrasound. Less than a month after finding the lump I had surgery to remove it along with some lymph nodes under my left arm. The results showed the cancer had spread beyond the breast into the lymph nodes and that I had an estrogen positive, stage 3 tumour. That led to 12 rounds of chemo and 25 radiation treatments.

At the end of that long year I sat in my oncologist's office where she told me three things:
1. She wanted to me to take a daily dose of Tamoxifen, often prescribed to pre-menopausal women to help prevent breast cancer recurrence.
2. The nodules that showed up in a scan of my lungs 10 months previously were still there which she said meant it wasn't cancer or they would be gone as a result of the treatment (likely scar tissue from some previous infection, she said).
3. She would see me in  five years.

I felt a little shell-shocked. Five years? How would I know the treatment had worked? She told me my family doctor would monitor me and she would send her a letter of things to look for over the next five years. I accepted that and in the process ignored that little instinctive voice in me that was saying that didn't sound right.

People may be surprised to know that during my first diagnosis I did very little reading or research about breast cancer. I don't think it was because I was complacent. I think it was because I was in shock, probably in a lot of denial, but mostly because I was just very tired. There is a kind of fatigue that comes with cancer that is very hard to describe.

The only research I did do was near the end of my treatment about the drug Tamoxifen, knowing this was something my oncologist was likely to recommend.  Terry and I both reviewed the research and made the decision that I would not take this drug, even if that was the doctor's recommendation. We had a variety of reasons but mostly it had to do with the potential side effects. At that time, our family was going through another health crisis with our youngest daughter. It was important to us that I be able to focus on getting her healthy. If the side effects from the drug were anything like the ones I experienced from chemo there was no way I was going to be in any shape to help anyone. I was also drug-fatigued. After almost a year of doctors, needles, pills and procedures I just wanted some time off from it all. I asked the oncologist if I could wait three months and then start taking it. I was told no, that it wouldn't be effective if I didn't take it within weeks of completing chemotherapy. So I didn't take it.

I asked nothing about, and was offered no information on, breast cancer metastasis. I knew that there was a chance the cancer could come back but I didn't understand that if it did it was called metastasis (mets for short) and that it would be incurable. I didn't know that it does metastasize in about 30% of breast cancer patients. I didn't know that the only people who die from breast cancer are those for whom it has metastasized. I naively thought that 'cancer spreads' and if that happened to me the treatment process would start over and I would, once again, do what it took to beat it. I didn't know that cancer metastasis couldn't be beaten.

I also didn't know that I could have requested blood work as often as I wanted that could measure the levels of CR15-3 in my system. These are tumour markers that when elevated don't always mean there is new cancer activity but it can give the doctors a heads up to do more tests. I did end up seeing a radiation oncologist every six months for the next couple years, arranged through another doctor who felt I should have more specialized follow up care. Those follow up exams consisted of a breast exam, blood work (once) and a chest scan that I requested. That chest scan still showed nodules in my lungs but everyone, including me, accepted what the oncologist had said---if it was cancer they would have disappeared because of the systemic chemotherapy treatment I underwent. What I wouldn't know for another two years was that statement was only true if the chemo actually worked on my body. I know now it didn't. Hindsight.

A lot of cancer patients and their families get caught up in the 'cancer can be beaten' and the 'think pink' campaigns. I'll get into this more in a future blog but the marketing has us belief that once we make it through the treatment, and our hair grows back, that we are survivors. We wear the pink ribbons, we participate in Relays For Life, and we excitedly count down each year until we can say we have made it to the five-year of being cancer-free! At some point during my treatment I asked the oncologist what anniversary date I should use to count down to the five-year mark? Is it from diagnosis? Is it from the last day of treatment? I was told it should be from the day of my surgery to remove the tumour. Basically, she told me, they assume they have gotten the cancer when they do the surgery and everything else they do after that is a preventative, proactive measure. They hope the chemotherapy and the radiation kills the cancer cells that may still be around where the tumour was and in other places. Hmmm. Like it was in my lymph nodes? I didn't ask.

I celebrated every January 16, the anniversary of my surgery. I did that three times. Then, late last spring, I couldn't breath anymore. The doctors didn't say I had cancer that had spread to my lungs and now they needed to come up for a treatment plan for that. They said I had stage 4 metastatic breast cancer and there was no cure. They said they would treat me with a less aggressive form of chemo so that I could be pain-free and comfortable for as long as possible. On that very day, a day when I was basically given a timeline on my life, I took control back of it. I switched to a new oncologist and a new cancer clinic. I immediately started to do research and I asked a million questions.

Since then I've learned that taking the Tamoxifen would not likely have helped me because my body was obviously resistant to treatment. That doesn't mean I made the right choice in not taking it, but it does mean I feel less guilty about not taking it, knowing now what I didn't know then. (My new oncologist also said he would have let me start at a later time, even if there was a risk of it being less effective, which by the way he didn't think there was.)

I also have learned that those nodules in my lungs, found right at the very start, were very likely cancer, the same cancer that grew to the point that made it difficult to breath three years later. The fact they were still showing up on scans after treatment was completed was a sign the treatment didn't work. Would it have made a difference back then had I known enough to ask for a lung biopsy to confirm one way or another if they were cancer? I don't know. No one really does. Hindsight might be 20-20 but it has no psychic abilities. The bottom line is I don't likely have cancer that reoccurred, I have cancer that probably never left.

I don't know what the future holds for me, but I know it will be full of blood work looking for tumour markers, scans any time I feel I need them, and a binder full of questions that I prepare before each doctor's visit. I know medical professionals are not infallible and I no longer treat them like they are. I'm not afraid to be thought of as over-sensitive, paranoid or stupid. Every person's cancer experience is different. This is mine and only applies to me. The only advice I ever give, when asked, is don't be afraid to ask more questions, demand more tests or get a second opinion. It might not change your outcome, but you have nothing to lose.

Until next time......carry on.