Tuesday, 18 October 2016

I'm Still Here...After Five Years

Five years. Five years since that doctor I had never met before confirmed what my family doctor suspected: I had stage IV invasive ductal breast cancer with extensive metastases to my liver and bones. Life would never be the same. Life would, very likely, not be as long as I expected. 

I spent an hour or so searching for the latest and best statistics about metastatic breast cancer (also known as Stage IV). Here is what I found:

  • "In Canada, about 10% of new breast cancers are metastatic when they are diagnosed, and 30% of women who are first diagnosed with early stage breast cancer will go on to develop metastatic breast cancer." (Canadian Breast Cancer Foundation)
  • "Median survival after a metastatic breast cancer diagnosis is three years. Median survival in 1970 was 18 months.  No one dies from breast cancer that is confined to the breast." (Metastatic Breast Cancer Network)
The Canadian Cancer Society hasn't yet released their 2016 statistics, but here is what they estimated for Canadian cases of breast cancer in 2015. (Read more: http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG):
  • 25,000 women will be diagnosed with breast cancer. This represents 26% of all new cancer cases in women in 2015.
  • 5,000 women will die from breast cancer. This represents 14% of all cancer deaths in women in 2015.
  • On average, 68 Canadian women will be diagnosed with breast cancer every day.
  • On average, 14 Canadian women will die from breast cancer every day. (Or as MBC Time put it in an October 2016 campaign, "Every 2 hours in Canada, 1 woman dies of metastatic breast cancer.")
  • 220 men will be diagnosed with breast cancer and 60 will die from it.
As for Canadian survival rates: the 5-year relative survival (based on estimates for 2006–2008) is 88% for women and only 80% for men. These survival rates are for people diagnosed at all stages of breast cancer, I assume including Stage 0, which isn't yet invasive (hence not technically cancer). Of course the survival rate for those, like me, with Stage IV breast cancer is much lower. Unfortunately, I couldn't find a Canadian statistic to share. The American Cancer Society reports that "metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%." 

Yet here I am. Why am I part of the 22%? Well, for a good explanation of the stats, read the article "The Median is Not the Message" by scientist Stephen Jay Gould. In addition to what he says, I would point out that statistics are always based on the past. They reflect the diagnosis and deaths of patients treated in past years. They reflect older therapies. If I have been fortunate, it is that my breast cancer is identified as triple positive breast cancer. It is ductal breast cancer that is positive for the three receptors for which non-chemotherapy treatment is available: estrogen receptors, progesterone receptors and HER-2 receptors. Over the last several years, even since my diagnosis, important new drugs have been developed that target these receptors, interfering with my cancer's ability to reproduce itself and grow. One of these drugs is Herceptin. It costs some $45,000 to $50,000 per year. When it is combined with a newer drug, Perjeta which I don't yet receive, the cost mounts to $100,000 per year. So far, OHIP covers the cost of my Herceptin. For reasons related to how Perjeta was studied, I am not eligible for OHIP to cover the cost of adding Perjeta to my treatment, asI was already on Herceptin when Perjeta was approved. If my oncologist deems Perjeta necessary to my care, I will have to rely on my private health insurance to cover the cost above a yearly $3,000 deductible. But yes, I am fortunate that my doctors can rely on a wide variety of chemotherapy drugs as well as a number of anti-estrogen drugs, plus a handful of anti-Her-2 drugs to treat my cancer. Thanks to the prevalence of breast cancer, a great deal of public and private funds go towards research, resulting in the availability and government funding of numerous drugs to fight breast cancer. My sister-in-law, on the other hand, has a rare cancer for which only a few chemotherapy drugs are recommended, even though there is no research that supports their use for that cancer. So, I suppose I am fortunate.

Since my last post here, I have been on the same treatment: Vinorelbine (my vino or vanilla bean) chemotherapy, Herceptin and Pamidronate. Cancer treatment typically works on a three-week cycle. On Day 1 and 8 of the 21-day cycle, I get a ten-minute infusion of vino. On Day 1, I also get a half-hour infusion of Herceptin. Every nine weeks, I also get an hour of IV Pamidronate, which is a bone-building drug. I have been on this treatment nineteen months. And I will be on it as long as it works AND I can tolerate it. So, how am I tolerating it? Well, not bad. Initially, I had some stomach pains and constipation. They didn't last long. After a couple of months, I developed neuropathy. I have tingling and numbness in my pinky and half my ring finger. It settled down after a few months, but resumed intensity last month. I think that may be because I reduced my Lyrica (nerve pain) dose by two-thirds over the summer. I have also developed diarrhea that seems to be worse after vino infusions and disappear on my no-chemo week. The last two CT scans identified thickening of my bowel wall which may be pan-colitis. Fatigue is also an issue. It comes and goes, but I still have the occasional week where I seem to sleep for hours and hours during the day. Sometimes, I'm not able to rouse myself to make supper. I sleep through most hockey games and have missed the resolution of half the mysteries I watch. But I've kept my hair!

My medical oncologist, to whom I literally owe my life, was on leave over the summer. Lucky for me, he was replaced by two very experienced oncologists. One was very thorough and ordered a lot of tests. The other had the world's most soothing manner. I appreciate all those qualities in a doctor. Some of the tests this summer suggested that I might have had progression in my bone metastases. I was a little worried I might have to switch to a more difficult treatment regime. Hell, I was a little worried things were going downhill. While the tests used the P-word (progression), the oncologists didn't. They felt, on balance, that my cancer remained stable. Considering that my side-effects have been a little more challenging of late, however, my regular oncologist, when I saw him last week, suggested we cut the Day 8 vino infusion. (Actually, the other doctors had raised the possibility of a chemo holiday.) As soon as my doctor suggested dropping Day 8, a look crossed his face and he excused himself to do some checking. After talking with his colleagues in Pharmacy, he warned me that if I were to see cancer progression without Day 8 vino, OHIP might conclude I had become resistant to Herceptin and cease funding it. I am now on hold. Friday, I will get my Day 8 treatment and will continue to do so unless my oncologist can get some assurance that he would be able to maintain Herceptin and restart Day 8 vino if I progressed. When drugs are this costly, hard choices must be made in a publicly-funded system. All things considered, I am much happier to live in Canada, where most cancer treatment is publicly funded than in other countries where I would, even with insurance, have to pay part of every test and every treatment. I won't go bankrupt fighting cancer, at least.


I'm not sure if in my last post I talked about the effect of Vinorelbine on my immune system. Well, it does a number on it. I get my blood tested before every vino treatment and have been warned that seven to ten days after treatment, my immunity will hit a low point. I was advised to take a number of precautions, most of which I have abandoned after nineteen months. I was to avoid crowds, restaurants, specific foods and especially spoiled food, germs in general. As a result, I decided to stop volunteering at my daughter's elementary school where I was working with the Grade One and Two kids who were a little behind with their reading. I miss that. I really enjoyed reading with those kids, but truth be told, they were a bit of a snotty bunch. Even though I carried Kleenex and hand sanitizer to every session, I couldn't risk continuing to volunteer there. Even without it, I did end up in hospital this time last year. I developed pneumonia again, along with a plerual effusion.


Last year's hospitalization wasn't as scary as the previous two, when I was septic and had a broken pelvis (or both). But it was a little scary. I had several day of delirium and extreme drowsiness. My niece was visiting that week and I couldn't even carry on an intelligent conversation with her. I regret that, not that I had a choice. The pneumonia was treated with antibiotics, but I had a recurrent fever. Then the pleural effusion was found. It is basically fluid between the lungs and chest wall. I had an uncomfortable procedure during which a tube was inserted into the pleural space. Then for several days I was attached to Fred, my name for the suction unit that withdrew the fluid. Eventually, I was disconnected from Fred and allowed to leave the hospital for a couple of hours in time to vote in our federal election. I was released the next day. I think I was in hospital for two weeks, about a week of that in isolation. Fun, fun.


Really, other than the hospitalization, which I expect will be something I experience every year or two, things have been going well. My pain has been well-controlled for a couple of years. As a result, I was formally discharged from the Ottawa Hospital Pain Clinic. Of course, this means I have to go to my family doctor for my pain medication renewals. He doesn't do renewals by fax, except at a cost. So, every three months, I have to present myself to my doctor for renewals of the narcotic and other pain medications. Ah well, there is always room for another doctor's appointment.

I have just been living my life, and glad to do so. I try to make memories with my family, which is increasingly difficult now that we're living with a teenager. I'll give her credit. She was very grateful for the two week trip we took to Cape Breton Island and Moncton this summer. She is a grateful kid, with only occasional flares of "teenagerness." For this, I am grateful. Together we did the Run For the Cure earlier this month. We were out of town visiting my sister-in-law the weekend of the Run, so we did it in Mississauga. We both missed our teams, hers her elementary school teachers and mine a metastatic team. But we ran in the morning, before spending the afternoon with family and driving home to Ottawa.

I have no good excuse for not blogging more. Just that I'm living life. And isn't that what it's all about? Here's hoping in another five years I post again, if not sooner. 







8 comments:

  1. I know you don't owe anybody anything... least of all people you don't know from adam & who don't really know you. But damn, when you start a blog & get people interested in your welfare, it seems so cruel to me to just stop blogging. I'd been following your blog & thought you had died since your last post. It made me sad.

    So I think people have an obligation that once they start a cancer blog, they should make themselves check-in once in awhile... just out of the kindness of your heart if nothing else. There are people out here praying for you. If you say you've found another lump & then never post again & it's been 18 months... what are people supposed to think? You're right... that you've died.

    I'm glad you didn't but it sure would have been nice to know this awhile ago. If you don't want to keep your blog up, then delete it.

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  3. While I appreciate the concern behind Anonymous and Unknown's comments above, I reject the obligation they put on me to inform them of my medical condition. They are people I don't know, who have not identified themselves to me, who have not attempted to develop a relationship with me. My friends include people who started as commenters on this blog. They identified themselves. They inquired when I was absent from posting. I particularly appreciated these check-ins when my mother was in a coma. That is how we became friends, through interchange of comments.

    I started this blog for two reasons. First, to provide detailed information about my diagnosis and condition to my family and friends. I was willing to share but found it burdensome and inefficient to either explain things to one person after another, or to rely on friends and relatives to pass on complex information they might not understand. My second objective was to contribute to breast cancer awareness in the tradition of bloggers I admire, like Claire at Knot Telling, Ann Silberman at But Doc... I Hate Pink and Nancy Stordahl at Nancy's Point. I am grateful to call these ladies my friends now. Claire is no longer posting, but Ann and Nancy are active. They're doing a better job than I ever could have, particularly regarding the needs of patients with metastatic breast cancer and the need for "Pink" to contribute to a cure. So, that leaves sharing with friends and family as my remaining objective with the Kate Has Cancer blog. For some time, I have been achieving this via Facebook quite effectively. My response to the comments above is to reconsider whether I want to continue to use this public blog at all, even whether I should delete it. I realize that not blogging in the future would deprive me of opportunity to become friends with other readers. It would, though, prevent the hurt I felt reading Anonymous and Unknown's comments.

    Yes, I could just delete the comments that bother me and carry on. I'd rather respond. For now, I am responding publicly. I still have to decide whether to remove the blog to keep my private life private.

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