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. 

Flashback to the Biopsy Table

"But my girl's only eight," I cried! The radiologist and technician stopped making their "no need to worry" noises as the image on their ultrasound screen became clear.

I knew, before the needle biopsy. The CT had already shown apparent metastacized tumours in my liver and bones. We could feel the breast tumour. It wasn't pea sized. It was huge. I knew what this meant.

"But my girl's only eight!"

Can you hear the terror in my voice? I can hear the paper on the biopsy table, under me and feel the cotton robe against my cold, frightened skin. I can see the dim light coming in from that north-facing window. And I can feel the terror. Not that I might lose my life, that's not the issue. That my daughter's health and happiness would forever be tainted by my diagnosis, by my prognosis.

I will need a miracle to survive this disease. But every morning that I can face my dear girl with a smile is a miracle for which I thank God.

"Patient at Risk for Pathologic Fracture"

There it is. The last sentence on the CT scan report. The sentence the doctor didn't mention. "A lesion in the right femoral neck places the patient at risk for pathologic fracture at this location."

Google explained to me that the femoral neck is the top of the thigh one, just before the ball (head) that fits into the pelvis at my hip. It is a pretty vulnerable spot, particularly in Ottawa during such a cold, icy winter.

I usually get up with my daughter and walk her to the school bus stop. The last few weeks I have become increasingly nervous about out our walk. The stop is only a few houses away. But there is so much ice on the road, and a bit on our front walk, to be honest. It is time to hand this job over to Geoff for a while. I hate to do that. He has taken on so much of the household tasks since I got sick. I like to let him sleep in a bit in the morning. But the risk is too great.

If I were to slip, the chance of the femoral neck snapping seems to be high. Surgery would be required to fix it, whether it is pinning the bone together or replacing it with a prosthesis (as in hip replacement surgery). I expect it would be more disabling than my previous pelvic fracture. Since reading the CT report, I've been feeling some pain deep in my hip. The Tamoxifen I'm on can cause bone pain. Or maybe it is in my head. Maybe I'm making a mountain out of a molehill.

On Thursday, I see an orthopedist, and then next week, my radiation oncologist. They will be able to tell me more. Maybe the risk isn't as great as I fear. Perhaps Dr. M could use radiation to strengthen my bone. Having been off chemo since November, my bone marrow should be able to withstand the radiation. We'll see what they say.

But in the meantime, I think I best stay off the road.

October is Breast Cancer Awareness Month

A year ago today, I wasn't worried about the lump my gynaecologist had found on my breast.  It felt like one I'd had five years before on the other breast -- a fullness that went away after it had been determined to be benign. 

A year ago today I didn't know that the lump was invasive ductal breast cancer.

I didn't know that my weird blood test results were a reflection of the tumours that riddled my liver.

I didn't know that my aching back wasn't "out" but broken in several places.

I didn't know that most women who get breast cancer don't actually have it in their families.

And I didn't know that men get breast cancer.

I didn't know that in about 10% of the cases, breast cancer has already spread to distant organs before it's found. 

Nor did I know that metastasised breast cancer cannot be cured.

A year ago, all I know was that October = pink  = breast cancer.  I thought that breast cancer was an easy cancer.

Well, it wasn't easy telling my little girl I have Stage IV breast cancer.  No, this year hasn't been easy at all.

In the last year, I have had 14 rounds of chemotherapy, 10 radiation sessions, 4 CT scans, 3 MRIs, 2 echocardiograms and a MUGA scan.  I couldn't count the blood tests, appointments with doctors, nurses, and social workers.  Also, my freezer has been filled twice and I`ve been given at least a half dozen hats and two wigs.

Yesterday I power-walked 5km and raised $1295.00 for the Canadian Breast Cancer Foundation.  It will use that money (most of which was generously given by you, my readers) for awareness, support and research.

Because a year later, there is still no cure for breast cancer.  And I need a cure.

The Bean tells me that anything is possible.  Smart girl.

What the Future Holds

I may have mentioned in previous posts that I understood that if my tumours continued to shrink, I might get a break from chemo this fall, while I would continue with the drugs Herceptin and Pamidronate (the cancer-stopper and bone-builder, respectively). I knew that because I have advanced breast cancer that I'd be on and off chemotherapy for the rest of my life.  Apparently it will be more "on" than "on and off."

Last Friday, Geoff and I met with my wonderful oncologist to get the results of my latest CT scan.  We got good news. The tumours in my liver continue to shrink. They are still numerous, but under 1cm in size, except for one. That last large tumour has continued to shrink and is now about the size of the end of my pinkie finger. By the way, my blood tests for some time have shown that my liver is functioning well despite the tumours.  I figure that if my liver can live with cancer, so can I.  The tumours in my bones appear to be stable; no better, no worse.  Contrary to what I was expecting, there were no new fractures. I believe the CT looked at my breasts too. The results didn't give any measurement of the original breast tumour. I don't know if that means it's completely gone or if they just didn't measure it.  It doesn't really matter.

My oncologist reminded me that Stage IV breast cancer is a chronic disease. Like other chronic diseases, such as diabetes and even depression, medical treatment doesn't take a break. He also explained that the unfortunate reality of breast cancer is that, eventually, each chemo medicine stops working. He hopes to get as much benefit as possible from each chemo treatment.  So, I will continue to get Taxol every three weeks, "as long as it is working and it is well-tolerated."

I have to be honest, I was disappointed to get the news. Somehow, I'd dreamed up a chemo-free future where, for one thing, it might be easier to return to work. I have to rethink things. I have to accept that the chemo will continue. So every three weeks I will have a few days where I feel tired and nauseous, and have sore fingers and toes (my weird side-effect).  I don't know how well my hair will continue to grow.  My chemo-brain syndrome will continue to interfere with my speaking.

I get a tiny break though.  No chemo on September 28; I start again October 12.  That means I won't be recovering from chemo when I do the Run for the Cure on the 30th, that I can attend a retirement party on the 28th, and that my nephew's wedding won't be on a chemo weekend.  See?  All good.

Test Results from April

I finally met with my oncologist last week to get the results of the tests I did in April:  CT scan, echocardiogram and MRI of the axial skeleton.  Good news all 'round.

The CT scan showed further shrinkage of the liver metastases and no new ones in other areas of the abdomen.  The shrinkage wasn't as dramatic as between the October and January CT scans, but it's still shrinkage and the doctor was happy with that.  It seems there are only two tumours larger than 1cm.  That's a huge improvement.  I'm just looking forward to a day when the liver tumours are countable rather than "numerous."

The echocardiogram was great again.  My results were high enough that I can continue to be treated with Herceptin.

The MRI of the bones had a little good, a little bad news.  It showed a great deal of healing of the bones in my lower spine and pelvis, which was attributed to the radiation treatment I had in late November, early December.  Unfortunately there is a new compression fracture in my spine.  The surprise is that it was not due to a cancerous tumour but to osteoporosis.  I have a strong family history of osteoporosis, and given my history of non-exercise and only medium consumption of dairy, I figured I would get it eventually.  It looks like the chemo treatment has actually brought the disease on early.  Like the other fractures, it should heal over time. 

So, good news for all of us that have been waiting.  Thank you all for your concern and good wishes.  They mean a lot to me.  See my next post for treatment changes.