On Having Chemo AND Being in "Remission"

Theoretically I am still in remission. That is what all the tests say. I have no tumour markers in my blood work nor has any cancer come up in my recent PET and CT scans. Yet, we know for a fact the cancer has returned.  How did this come to light? Let me explain.

When I was first diagnosed with breast cancer in 2005 it was discovered it was HIGHLY estrogen receptor positive meaning that the estrogen in my body was fueling the cancer's growth. This is not unusual and there are drugs used to remove estrogen from the body. I was put on Tamoxifen for this reason and eventually started receiving monthly Zoladex injections which turned off my ovaries completely. Theoretically that should have kept my cancer at bay.

After a few years of these monthly Zoladex injections I asked my oncologist if having my ovaries removed was not a simpler option. She agreed that since it didn't seem likely that I could ever stop taking the medication and that I was having some undesirable side-effects that might be resolved from a simple oophorectomy, going that route was a reasonable choice.

So on August 18th, 2011 I had elective surgery to yank my lady egg sacs. I woke up from the procedure feeling surprisingly good and was chatting with my mom when my surgeon arrived at my bedside. She looked like she was about to cry and told me that once she had entered my abdominal cavity she found small white cancerous deposits all over the place. Most of them were under 3 mm which would make them invisible on a scan but she had removed a couple larger ones for testing. She went on to tell me that I would likely need more chemo.

I'm not sure why but I was not particularly shocked or even that upset. Maybe it is because once you've heard a cancer diagnosis it is always in the back of your mind it will come back and you will hear it again.  Even being declared cancer-free you are never really free of the memories or thoughts of it returning. You are certainly not free of the scars and even side-effects of your treatment. Cancer never entirely leaves you after you've had it.

I remember feeling sad for the doctor that she was so upset telling me this news and I patted her arm and told her it would be okay.

She went on to tell me that while these cancerous spots were all over my peritoneum the rest of my organs, including my ovaries, looked fine. This was not entirely true as when the test results came back it turned out my ovaries were "completely" cancerous and that 1.5 cm biopsy of my bowel came back cancerous as well. One thing I knew from the start is that my type of breast cancer, lobular carcinoma, can be sneaky. It doesn't produce actual tumours but simply infiltrates the tissue, symptomless and invisible, much of the time. I've never had tumour markers in my blood tests. All my biopsies have looked perfectly fine to the human eye but have turned out to be very cancerous. Needless to say my oncologists' calming reassurances of my remission status hasn't meant a whole lot to me over the years.

This type of cancer diagnosis is called an incidental finding. If I had not had this surgery I would have never known the cancer had metastasized. So I am lucky. Not the lottery winning type of lucky but the type who finds out her previously thought cancer in remission was not so remissiony after all and gets to have chemo sooner instead of finding out once it had spread to bones, brain, etc kind of lucky!  WOo!

My oncologists were happy to take a wait-and-see approach for treatment but since I have the sneaky kind of cancer I wasn't that confident conventional testing would identify when things might be getting out of hand. I chose to act aggressively and do chemo right away. Sorta.

I decided to finish my semester at school and managed to do that while recovering from surgery, undergoing tonnes of tests and seeing lots of doctors. My attendance record wasn't pretty and my focus and concentration really sucked but with the help of some very understanding instructors I passed my fall semester with fairly decent grades.

Then I went to Vegas for a week to spend time with a good friend, had Christmas with my family and started chemo in January.

So far it is MUCH less debilitating that my previous chemo regimen. Yet, I can't say I am having a blast either.

When cancer goes rogue like mine has it is likely to be a long-term chronic condition; a disease you can live with, sometimes for many years. The hope is to keep you alive long enough for a better treatment to come along. Only about 7% of people have their metastatic cancer go into full remission. However, I've been oddly lucky so far and my cancer has been weird and rare from the start so I don't see why I can't be part of that statistic.