NET cancer

My 12 year cancerversary!

/ edebock / 10 Comments

Yesterday was my 12th cancerversary. Twelve years have passed since I heard those dreadful words, “It’s cancer and it has already spread.” At the time, that sounded like a death sentence, but two weeks later we learned that I have neuroendocrine cancer (NETS) which, while not curable, can be treated and usually grows more slowly than most other cancers.

One of the things that I learned early on was how important it is for patients to advocate for themselves. Last Friday proved that point. When I saw my oncologist in mid July to discuss the results of my latest CT scan which showed that a small tumour on my liver had started to grow, he referred me back to the interventional radiology specialist who did my radioembolization in March of last year. He expected that I would hear something within a couple of weeks, but when we returned from our recent trip, more than a month had passed and I’d heard nothing. On Friday morning, I called and left a message asking for confirmation that the referral had been received and, if possible, an update on what was happening. In less than half an hour, I had an appointment to see the doctor during her noon hour on Monday! I can’t help wondering how long I would have had to wait if I hadn’t called.

We actually had to wait quite awhile to see the doctor on Monday because she was tied up in a procedure that took much longer than expected. When we finally got in, she did an ultrasound and wasn’t able to find the tumour. Unfortunately, that doesn’t mean that it isn’t there. It simply means that it’s in a location that isn’t easy to see. After discussing the fact that the tumour is quite small and that I don’t have any symptoms, we decided on a tentative treatment plan, but we aren’t actually going to do anything until after my next CT scan on September 26. This battle is really a balancing act. We don’t want to treat too soon because that can limit what we might be able to do in the future, but we also don’t want to wait too long and let the tumour get too large.

After twelve years of living with this, I’ve become much more comfortable with waiting. Rather than worrying about what might or might not be happening inside me or about what the future might hold, I’m simply going to go on living my best life right now!

Image: Surya Ali Zaidan

If you would like to help, I’m still fundraising for neuroendocrine cancer research. Click here to visit my fundraising page. Although I’m nearing my $1200 goal ($100 for each of the 12 years that I’ve been fighting this disease) the campaign is still far short of what we need to fund research grants for the coming year. We could really use your help!

No one fights cancer alone

/ edebock / 7 Comments

My cancer is on the move again and so am I. It’s been 5 years since I last participated in the annual CNETS (Canadian Neuroendocrine Tumour Society) Hoofing It fundraiser and I’m late to the party this year, but I’ve decided to get involved again.

It’s been 12 years since I was diagnosed with stage 4 neuroendocrine cancer (NETs). Once the shock of learning that I had a cancer that I’d never heard of and that I’d be living with it for the rest of my life wore off, it became important to me to do what I could to help raise awareness of this little known disease and to support fundraising efforts for research, better treatments, and patient support. If it wasn’t for the research that organizations like CNETS fund, I probably wouldn’t be here today, so this is definitely something that’s very close to my heart!

I don’t think I’ve mentioned it on the blog before, but several months ago I became co-lead of the CNETS Alberta Patient Support Group that meets online once a month. Every month I hear from patients and caregivers whose lives have been turned upside down by this disease. Some are newly diagnosed and looking for answers. Others have been battling this for longer than I have and some are ready to give up hope.

After 16 months of stability following the radioembolization treatment that I had in March of last year, my cancer is growing again. Another tumour on my liver has started to increase in size and I’m waiting to find out how we’re going to treat it. At this point, my other tumours continue to remain stable and the cancer hasn’t spread to any new locations, but this is definitely beginning to feel a bit like a game of Whack-a-Mole! We haven’t exhausted all the possible treatment options yet, but this new development has reminded me how important it is that research into new treatments continues to move forward.

In past Hoofing It fundraisers, participants kept track of how many kilometres they walked, hiked, biked, or paddled, but not all patients are physically capable of doing those things. This year points are being assigned for a wider variety of physical activities. I’m not concerned about earning points though. My goal is simply to walk or hike at least 5 days a week until the end of September & to raise a minimum of $1200.

The walking part is easy. I was already doing that before we went to Europe, but since arriving home last month, I’ve been a bit lazy. Hopefully participating in this endeavour will provide the motivation I need to keep moving.

The $1200 is where you come in! As my new t-shirt says, no one fights cancer alone. I’m hoping that I can persuade you to visit my fundraising page here and make a donation. No amount is too small! Every cent received by CNETS during this campaign will go directly to neuroendocrine cancer research. We need to know what causes this disease, we need more and better treatments, and we need to find a cure!

Celebrating wellness

/ edebock / 14 Comments

In 2021, Alberta Blue Cross launched the Faces of Wellness program to celebrate Albertans who are champions of wellness in their communities whether by making positive lifestyle changes, promoting a health-related cause, making the most of life while living with a chronic condition, standing up for mental health, or being a role model for others. I was completely unaware of the program until early last fall when I saw a post about how to apply or nominate someone else for the 2024 award. The deadline to enter hadn’t passed yet, so I thought “why not?” It would be another opportunity to educate someone about neuroendocrine cancer even if it was only the contest judges.

The application process involved writing a detailed story outlining the individual’s wellness experience, how they embraced the courage to overcome, and examples of how they live a life of wellness and regularly encourage others to do the same. I wasn’t sure how I could accomplish all that in the limited space that was allowed, but after writing a longer version and then seriously editing it, this is what I came up with.

Eleven years ago, I was diagnosed with stage 4 neuroendocrine cancer (NET), a disease that even my family doctor had never heard of. For several years, I had been experiencing symptoms similar to those of several more common conditions and my slow-growing cancer was initially misdiagnosed as gastritis.

My cancer isn’t curable, but ongoing treatment keeps it from growing and spreading. Since my NET diagnosis, routine scans detected 2 unrelated cancers which were removed surgically. More recently, I was also diagnosed with type 2 diabetes.

In spite of all this, I am thriving! I’m not dying of cancer, I’m living with it. Wellness is about more than physical health. Spiritual, emotional, and social well-being are equally important. I have a strong faith and supportive family and friends who make the journey easier. A positive attitude won’t cure my cancer, but it certainly makes living with it easier.

Maintaining wellness involves actively practicing healthy habits. Eating well and being physically active are vital. I’m almost 72, but I exercise 5 days a week and love nothing more than paddling my kayak, going for a hike, or playing a round of golf.

From the beginning of my NET journey, it has been my mission to educate people in my community and elsewhere about the disease. I’m actively involved in patient advocacy as a member of the Advocacy Advisory Board to the Canadian Neuroendocrine Tumour Society. I’m involved in initiatives to try to make the patient experience better for all of us including those who have not yet been diagnosed. It’s not uncommon for people to experience symptoms for 5 to 7 years before receiving a correct diagnosis. That needs to change! Neuroendocrine cancer is the fastest growing class of cancer worldwide, but it’s not well-known in the medical world. That, too, needs to change! I’m passionate about making a difference by being a voice for change.

I sent off my submission and hardly gave it another thought until sometime in December when I received an email informing me that I had been chosen as a runner-up and would be receiving a $25 Atmosphere gift card in the mail once the Canadian postal strike came to an end. Apparently this is a face of wellness!

And so now, for those of you who have been following my wellness journey, an update. February was a month of tests, scans, and appointments. I was supposed to meet with my specialist on Wednesday to discuss the results of many of those tests including a CT scan that was done the week before. That appointment had to be postponed, however, because the scan results weren’t available yet and let me tell you, scanxiety (scan + anxiety) is real! I had already seen the results of the other tests online and most of them were good, but there was one that concerned me and made me wonder if the cancer was beginning to grow or spread again. Thankfully, the scan results finally showed up online at 10 o’clock last night! While I don’t understand all of the medical jargon and will have to wait for the specialist to interpret some of it, the final statement was clear, “No evidence of progressive disease from November.” In other words, nothing has changed since my last scan three months ago!

Over the past month, I’ve also learned that my A1C (3 month blood sugar level) continues to be stable (with medication), my blood pressure is excellent (also with medication), and my bone density has not deteriorated over the past two years. This is all very good news and, in spite of having cancer, I’m feeling pretty blessed to be a face of wellness!

NET Cancer Day 2024

/ edebock / 4 Comments

ncd-logo-newI wish there wasn’t a need for NET Cancer Day and that I didn’t feel compelled to write about it again this year, but there is and I do. Those of you who have been reading the blog for very long might think that I’m  starting to sound like a broken record, but it’s just so important for people to become more aware of this frequently misdiagnosed cancer.

The incidence of neuroendocrine tumours (NETs) is on the rise and symptom awareness is key to earlier diagnosis and ultimately to better outcomes. Last year’s campaign slogan “Easily missed: Take a closer look at neuroendocrine cancer” was such a vital one that the NET Cancer Day campaign is reaffirming that message by using it again this year. More common than brain, ovarian or cervical cancer, neuroendocrine cancer continues to be frequently missed and misdiagnosed.

Globally, it takes an average of 5 years from initial symptoms to actual diagnosis; longer in North America. In my case, doctors estimate that I had had the disease for 7 to 10 years before it was diagnosed and based on symptoms, I’m sure they’re right. By then the cancer had already spread to distant parts of my body. Like many, many other NETs patients, my cancer was Stage 4 and no longer curable. Clearly, a greater awareness of NETs amongst the global community and especially the medical profession is needed.

The NET Cancer Day campaign has traditionally been focused on highlighting the common symptoms that are often interpreted as other conditions, but can also be signs of neuroendocrine cancer. These include facial flushing, abdominal pain, digestive problems, diarrhea, rapid heartbeat, chest pain, shortness of breath, wheezing, coughing, and/or persistent fatigue. People with NETs are often misdiagnosed with more common conditions such as anxiety, menopause, Irritable Bowel Syndrome, gastritis, or asthma.

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I’m not able to give you an update on my own health today as I’m presently waiting for the results of lab work that was done this past week and I’ll be going for CT scans again on Wednesday. Instead, I’ll tell you a bit more about what I’ve been involved in since last NET Cancer Day.

Since very early in my cancer journey, The Canadian Neuroendocrine Tumour Society (CNETS) has been a valuable source of information and support. When the opportunity to get involved as a volunteer member of a newly forming patient advocacy advisory board came to my attention, I knew immediately that that was something I wanted to do. It was time for me to start giving back.

After meeting in Montreal in April for an “advocacy bootcamp” with a prominent Canadian health advocate and policy consultant, we came away with a list of priorities and tactics in the areas of education and awareness, treatment and diagnostic access, and research. With two other members of the board, I’ve been working on a graphic representation of both the current and the ideal pathways to diagnosis for neuroendocrine patients in Canada which we hope to use to inform patients, medical practitioners, and health authorities. This fall, we were fortunate to have our project approved for funding by the International Neuroendocrine Cancer Alliance (INCA) which is allowing us to work with a patient-led consultancy group out of Germany to take our initial work to a higher, more professional level.

Over the past few months, in addition to the advocacy board work, I’ve also been involved in an initiative with Ipsen, the pharmaceutical company that produces the medication that I’m injected with every 28 days, to improve the patient experience with that drug.

These are baby steps in the overall work that needs to be done to improve diagnosis and treatment of neuroendocrine cancer, but I’m happy to be doing what I can to raise awareness and move the work forward.

Screenshot 2024-11-09 at 7.19.36 PM

Mostly good news

/ edebock / 9 Comments

For the past couple of weeks, I’ve been riding a roller coaster that is known in the cancer world as scanxiety (scan + anxiety = scanxiety). 

scanxiety

Over the 9+ years since my stage 4 neuroendocrine cancer (NETS) was diagnosed, I’ve had more scans of various kinds than I want to count. The morning after each of my 12 radioactive PRRT treatments I had an octreotide scan to determine whether or not my tumours had grown or spread since the previous treatment. Any scanxiety that I experienced back then was short-lived because I met with the doctor immediately after the scan to review the results. Not so with the CT scans that I’ve had at 6 month, and more recently 9 month, intervals since completing my treatments in June of 2019. After each of those, I’ve had to wait about a week to find out the results. A week can feel like a very long time if you’re riding the scanxiety roller coaster, but because I’ve been doing so well for so long, that hasn’t usually been a big problem for me. 

This time was different. About three weeks prior to each scan, I have a whole battery of lab tests. The results of those are available to me online, so before I even had the CT scan, I knew that something might be amiss. Two markers that are of particular significance for NETS patients are chromogranin A in the blood and 5-HIAA (5-hydroxyindoleacetic acid) in the urine. Both had been gradually climbing and were now flagged as being higher than the normal range. That’s when the roller coaster ride began! 

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In my lowest moments, I was sure that cancer was rapidly spreading throughout my body, but I did what I’ve done before in times like this. I called on a dozen godly women who share my belief in the power of prayer and asked them to pray. The ride was smoother after that. I still knew that something might be wrong, but I felt more at peace. I’d be a liar if I said that I wasn’t anxious at all, but I didn’t dwell in the low spots any longer. I also focused on one of my favourite passages from scripture, Philippians 4:6-7. 

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

By the time the doctor phoned today for our follow-up appointment (saving us a 5 hour round trip to the city) I truly did feel at peace about whatever it was that she was about to tell me. She gave me the good news first. Nothing of concern appeared on the scans. In fact, a tumour in a lymph node that had been there since diagnosis in 2013 has completely disappeared! That’s amazing news, especially considering how long it’s been since I had my last treatment. I don’t think anyone expected that the PRRT would still be resulting in shrinkage of tumours three and a half years later. The good news was somewhat overshadowed though by the fact that those elevated levels in my blood and urine still indicated that something is happening. So what happens next? 

I’m going to be going for a Gallium-68 dotatate PET scan sometime in January. This newer imaging technique is similar to the octreotide scans that I’ve had in the past, but much more sensitive. It will be able to pick up even the tiniest growths that might have been overlooked on the conventional CT scan. The results of that will dictate what the next steps will be, but for now I’m not going to worry about it. I’m determined not to climb back on that roller coaster. Instead, I’m going to focus on having an enjoyable Christmas!

The scan did reveal something totally unrelated to my cancer. Apparently, I now have a 1.3 cm Thornwaldt cyst lurking in my head! This is a rare, benign growth that develops in the nasopharynx, above the soft palate and behind the nose. If it continues to grow or becomes infected, it has the potential to start causing things like headaches, postnasal drip, blockage of the eustachian tubes, and/or halitosis. If that occurs, it can be drained or removed surgically. I’ll cross that bridge if and when I get there. For now, it’s just one more thing to add to my long list of weird and not so weird diagnoses!