Neuroendocrine cancer

Another cancerversary!

/ edebock / 17 Comments

Eleven years ago today I was told that I had stage 4 colon cancer. Thankfully, a biopsy proved that diagnosis inaccurate or I probably wouldn’t be here to tell you about it today. According to the Canadian Cancer Society, the 5-year survival rate for colon cancer that has spread from its original location to distant parts of the body is 11%.

What I do have is neuroendocrine cancer (NETS), a slow-growing cancer that originated in my colon, more specifically in the cecum which is part of the colon. By the time it was diagnosed, I had been experiencing vague symptoms for several years. In fact, I was told that I’d probably had it for 7 to 10 years. At diagnosis, it had already spread to lymph nodes and my liver. Accurate stats and information about survival rates aren’t as readily available for neuroendocrine cancer because it isn’t as well-known or well-documented as many of the more common varieties, but I don’t really need to know those numbers. I just need to know how I’m doing right now and I found that out last week.

In response to my oncologist’s, “How are you?” as he entered the examining room, I replied, “I’m good.” Glancing at the notes in his hand, he enthusiastically responded, “Yes, yes you are!”

I wasn’t as exuberant about the results of the previous week’s CT scan as he appeared to be. I had hoped to hear that March’s TheraSphere treatment had completely annihilated the largest tumour on my liver. In fact, it had only shrunk by about 20%. The doctor hastened to remind me that shrinkage is always a good thing. That, combined with the facts that I’m not experiencing any symptoms and that the scan also showed “no progression of disease” is actually very good news!

I’ll have another CT and more lab work done in November, but in the meantime I’ve got lots of living to do. In addition to the many ways that I’ve found to stay active and busy in retirement, I’ve also become more active in patient advocacy over the past year. As a member of the CNETS (Canadian Neuroendocrine Tumour Society) Advocacy Advisory Board, I’m working with other patients and caregivers from across the country to try to increase awareness of our disease, shorten the pathway to diagnosis, advocate for equal access to treatment for patients across the country, and promote research into newer and better treatments. I’m also involved in meetings with a group of patients and health professionals around the world as part of an initiative by Ipsen, the pharmaceutical company that produces the medication that I’m injected with every 28 days, to try to improve the patient experience.

That reminds me of another recent change. Hubby is now giving me that monthly injection which frees us up to take it with us when we travel instead of having to be at home to wait for the nurse’s visit. A cancer diagnosis is life changing for a partner or caregiver as well as for the patient, so this is really his cancerversary too. We aren’t doing anything special to celebrate, but we’re thankful for another year of relatively good health; another year of life!

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Cancer metaphors and an update

/ edebock / 6 Comments

Patients, caregivers, fundraisers, and even medical professionals use a variety of different metaphors to describe life with cancer.

From day one, I’ve referred to my cancer experience as a journey. As a seasoned traveller, when I was diagnosed I felt as if I was embarking on a trip into the unknown. It’s been a long and tumultuous trip, but the metaphor is one that still works for me. Some patients, however, are bothered by it believing that a journey should always be fun and something that you have control over.

An even more controversial metaphor is the one that refers to life with cancer as a battle. Although it’s very common, many people take exception to using the vocabulary of violence at a time when patients are at their most vulnerable. Within the language of winning and losing, there’s also the uncomfortable implication that those who’ve died of cancer are losers and that maybe if we just fight hard enough we can win. While I realize that there are limitations to any metaphor, I think that the battle metaphor can be empowering. I am in a fight for my life and cancer is the enemy.

Thankfully, no one fights cancer alone and that’s also where the battle metaphor works well. My closest ally is my husband who accompanies me to every appointment and is involved in every decision regarding my care. An army of skilled medical professionals with a vast array of formidable weaponry (chemical, biological, and nuclear) at their disposal direct my care and they are backed up by a battalion of prayer warriors around the world. Ultimately, the commander in chief, the only one who knows the final outcome, is the Lord Himself. As we sang in church yesterday,

So when I fight, I’ll fight on my kneesWith my hands lifted highOh God, the battle belongs to YouAnd every fear I lay at Your feetI’ll sing through the nightOh God, the battle belongs to You

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While my life with cancer is both a journey and a battle, at times it’s also a roller coaster and that brings me to the latest news that I want to share with you. After several years of stability, things began to change about 18 months ago. The first sign that my cancer was becoming active again were some changes in lab results. Two markers that are of particular significance for neuroendocrine cancer (NETS) patients had been gradually climbing and were now flagged as being higher than the normal range. Suddenly, the roller coaster went over the top and I felt like I was falling! More frequent surveillance eventually showed significant growth to the largest tumour on my liver. That led to the Therasphere treatment that I had in March of this year. The roller coaster dropped again when a post treatment CT scan showed what appeared to be a new growth in my lower abdomen raising concerns that my cancer was spreading. In mid April I met with a new oncologist. After reviewing my case, he requested a Gallium scan (the most detailed scan for NETS) and another CT scan. Last week, I met with him again to discuss the results and the news was fantastic! First of all, the Therasphere treatment was successful in destroying the large tumour on my liver. Equally exciting was the news that what had looked like a new tumour in my abdomen was nothing more than a harmless diverticulum, a bulge in the lining of my colon! There are other tiny growths that we will need to continue to keep an eye on with regular surveillance, but those don’t appear to have changed significantly. Since my cancer is incurable, this news is about as good as it gets and I’m hoping for a smooth ride for some time to come!

So, what metaphors should you use when talking to or about a cancer patient? It is, of course, valid for a person to speak about their own illness in any way they choose and their loved ones ought to adopt the same language as a way of reflecting those experiences. Simply take your cues from the patient and you won’t go wrong.

Lyrics: Battle Belongs, Phil Wickham

A World Cancer Day update

/ edebock / 18 Comments

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When I posted a World Cancer Day graphic on Facebook this morning and mentioned that I’m currently waiting for a treatment to destroy a tumour on my liver, the outpouring of support from people near and far was immediate and heartwarming. I was also asked recently whether this was related to my original cancer or something new. In response, I decided that today would be a good day to share an update on what’s been happening in my ongoing battle with cancer.

For those of you who may be new to the blog, I was diagnosed with neuroendocrine cancer (NETS) in 2013. The primary tumour was in my cecum (a pouch at the beginning of the large intestine that the appendix is connected to) and, as is very common with NETS, it had already spread to lymph nodes and my liver. A series of radioactive treatments (PRRT) resulted in some shrinkage and stability that lasted until about 17 months ago when we started to notice gradual changes in my regular lab results and scans. As neuroendocrine cancer is usually a slow-growing disease, we took a cautious approach. We started monitoring more often and eventually changed the medication that I receive by injection every 28 days. Unfortunately, that didn’t have the desired result.

The last time I wrote an update on the blog was back on November 10, NET Cancer Day. At that time, it was clear that the tumours that had been basically dormant for several years, or at least the largest one which is on my liver, were growing and producing an excess of hormones again. I was waiting for the tumour board at the Cross Cancer Institute to discuss my case and make their recommendations.

Shortly after that, I was referred to the Interventional Radiology department at the University Hospital and my NET specialist told me that I would undergo a radiofrequency ablation, a fairly non-invasive procedure that would destroy the cancer cells without damaging much of the surrounding tissue. I was all for that. Let’s zap that tumour, I thought! As it turns out, however, at 5 cm (2 inches) my tumour is too large for that procedure to be successful. Instead, I’ll be undergoing a transarterial radioembolization, also known as a TheraSphere treatment. (I love words, but as a cancer patient, I’ve learned a lot of big ones that I wish I’d never had to hear!)

The treatment is a minimally invasive procedure that deposits millions of glass microspheres, each about one-third the width of a human hair, containing a radioactive isotope (Y-90) inside the blood vessels that supply a tumour. This blocks the blood supply to the cancer cells and delivers a high dose of radiation to the tumour. The treatment will destroy a significant portion of my liver, but thankfully, it has the amazing capacity to regenerate itself after damage.

Three weeks ago, I had a work-up which was basically a trial run. As will happen in the actual treatment, a catheter was inserted through the femoral artery in my groin and guided via x-ray to the hepatic artery supplying my liver. Mapping and measurements of the blood vessels feeding the tumour were done and then a contrast was injected and various images taken to ensure that the Y-90 would stay in my liver and not travel anywhere else in my body. During this entire time, which took several hours, and for four hours afterward, I had to lie on my back without raising my head or moving my right leg. It was a long and somewhat grueling day and after almost eleven hours, I was very happy to walk out of the hospital with no ill effects. I may not be quite as fortunate after the real deal. I’ve been told that common side effects include abdominal discomfort, nausea, and fatigue for a week or two afterward, but it will be worth it if it successfully destroys the tumour!

I was initially told that the treatment would take place two to five weeks after the work-up, but three weeks later, I haven’t been given a treatment date yet. Wheels often move very slowly in the medical world and waiting is something that patients have to get used to. It never seems to get any easier though!

To those of you who suggested in your very kind responses on Facebook this morning that you would be praying for me, I very much appreciate it. While I am enormously thankful to live in a part of the world where I have access to state of the art medical care at no personal expense, and I have a body of amazing doctors taking care of me, I know that God is ultimately my healer and it is He who holds my future. I continue to put my hope in Him!

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Image: TheraSphere Patient Info – Boston Scientific

Sixteen years of blogging!

/ edebock / 15 Comments

I published my very first blog post sixteen years ago today! It was also the shortest post I’ve ever written; a brief message announcing that hubby and I had just accepted positions teaching conversational English in Japan. The blog was meant to share that year-long adventure with friends, family and anyone else who might be interested. Never in my wildest dreams did I imagine that it would still be alive and well sixteen years later!

The title, Following Augustine, no longer fits the blog as well as it did in those early days, but since it’s what I’ve been known as in the blogosphere for more than a decade and a half, I hesitate to consider changing it. You can read about why I originally chose the title here.

Though I probably already had neuroendocrine cancer (NETS) when the blog was born, I didn’t know about it until several years later. When I finally received a correct diagnosis, blogging became a helpful way to process what was happening and to share the journey with friends and family. I also use the blog to raise awareness of NETS. I’m sure that this will continue to happen as I’ve recently become a member of a newly formed Advocacy Advisory Board that will report to the board of directors of the Canadian Neuroendocrine Tumour Society (CNETS).

When I started the blog, writing about fashion was the farthest thing from my mind. Several years ago, however, I starting following several fashion blogs and began to develop a greater interest in the topic. It was then that I decided to add the weekly Fashion Friday feature. At times, I find it a challenge to come up with a new fashion related topic every week, but it’s been a great way to connect with other women and to ensure that I post something at least once a week. Fashion Friday has a fairly small, but loyal following of interested readers, so I as long as I can continue to think of engaging content, I plan to keep the feature going.

As an avid reader, it was my passion for books that prompted me to add the latest feature to the blog, a monthly book review that first appeared at the beginning of February this year.

I refer to Following Augustine as a lifestyle, travel, and fashion blog, but in recent years, there hasn’t been as much travel content as I would have liked. First, the pandemic and then a number of other health issues, both mine and hubby’s, have limited our ability to spend as much time away from home as we would like, but our brand new ten year passports arrived in yesterday’s mail and we hope to be able to put them to good use in the future. If that happens, the blog will once again chronicle our wanderings.

Following Augustine will probably continue to undergo changes from time to time, but at this point, I don’t see it coming to an end anytime soon. Over the past sixteen years, I’ve published over 1400 posts and I expect that I’ll continue adding to that number until I’m no longer able!

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NET Cancer Day 2023 and an update

/ edebock / 11 Comments

For those of us who have neuroendocrine cancer, every day is NET Cancer Day, but November 10 is the one day each year that is set aside to increase awareness of our disease and to promote improved diagnostics, treatments, care, and research. Unlike most cancers, neuroendocrine cancer (NETS) is often overlooked or misdiagnosed. Some patients, myself included, endure symptoms for 5 to 10 years before receiving an accurate diagnosis. All that time, the unseen disease is quietly growing and spreading which is why at least 50% of us, again myself included, have stage 4 cancer by the time we are diagnosed. At that point, it’s treatable, but not curable.

Why is this sneaky disease so easily missed? Why does it take so long to get a correct diagnosis? NETS starts in the cells of the neuroendocrine system which are found throughout the body. Neuroendocrine tumours can hide in many locations, but most commonly originate in the lungs, pancreas, gastrointestinal tract (specifically the large intestine, small intestine, or appendix), the adrenal glands or in rare cases, the brain, breast, or prostate. Without early detection, it spreads to other locations throughout the body including the lymph nodes, liver, peritoneal cavity, and bones.

Not only can the cancer be found in so many different parts of the body, but the symptoms vary and are often non-specific. They might include abdominal pain, diarrhea, nausea and vomiting, heightened anxiety, fatigue, weight loss, skin flushing, chest pain, coughing, wheezing, shortness of breath, and/or back pain. All of these are also symptoms of more common conditions, so it’s completely understandable that doctors don’t immediately consider a little-known cancer like NETS. Many have never encountered a case and know little or nothing about it. As a result, neuroendocrine cancer is often mistaken for other conditions including gastritis, IBS, generalized anxiety disorder, or even menopause. That’s why we need an annual NET Cancer Day and why we need to advocate for increased awareness amongst doctors and patients every day of the year.  

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Last year, on NET Cancer Day, I was happy to be able to report that my disease was stable. Unfortunately, this year, that’s no longer the case. Over the past year, my tumours (or at least one of them), which had essentially been dormant for several years, have been waking up and producing excess hormones again. One of the lesions on my liver has also started to grow again. Thankfully, however, NETS is usually a slow-growing cancer and we still have a number of treatment options available. The neuroendocrine cancer team at the Cross Cancer Institute meets on Tuesdays (I absolutely love the fact that they take a team approach), so they’ll be discussing my case next week and deciding where we go from here.

In the meantime, other than an ongoing headache that is probably stress-related, I have no symptoms and I’m able to live a fairly normal life. Considering that fact that I’ve had stage 4 cancer for over ten years, I feel pretty blessed. I consider every day a gift and I continue to trust that I’m not dying of NETs, but living with it! 

There will be no Fashion Friday post today, but stay tuned for a new one next week. 

My 10 year cancerversary

/ edebock / 14 Comments

Do you remember where you were and what you were doing exactly ten years ago today? I do. The day is etched in my memory in vivid detail. That was the day I was told that I had cancer in my colon and that it had already spread to my liver! There was no hope or expectation then that I’d be writing about that day ten years later!

It wasn’t until a couple of weeks later that we learned that what I actually had (and still have) is neuroendocrine cancer (NETS) which, though incurable, usually progresses slowly. That gave us a glimmer of hope, but on one of our earliest clinic visits, we read that the average life expectancy for a neuroendocrine cancer patient was five years following diagnosis. I now know that that information was probably already outdated. There are members of my online patient groups who have been living with this disease for 10, 15, even 20 years or more. Others, however, have not fared as well, so I’ve learned to consider every day a gift.

On a day like today, I could dwell on the fact that over the past ten years I’ve had two major surgeries, been exposed to an enormous amount of radiation, had dozens of tests and scans of various kinds, lived in 28 day increments between injections, had 128 of those “butt darts”, and on and on. Or, I could count my blessings; focusing instead on the things that I’ve been able to do and enjoy over the past ten years.

Since my initial diagnosis, we’ve seen our family grow by one daughter-in-law and four grandchildren! In spite of the worldwide pandemic that put a damper on travel for a time, we’ve holidayed in Nova Scotia, BC, and the Yukon, and traveled to Israel, Europe (Portugal, Italy, France, Belgium, and the Netherlands), and Mexico four times. We purchased a kayak and have spent many hours paddling quiet lakes and rivers. Over the past ten years, we’ve spent 240 nights in our trailer and I’ve played over 350 rounds of golf. We’ve tried new things like snowshoeing and joined a seniors’ bowling league. I’ve edited 1346 microloan descriptions for Kiva and joined a prison letter writing ministry. I’ve had the opportunity to teach two women to read and tutored an ESL student. And again, the list goes on!

Life is good! Yes, I have cancer. Yes, some of my tumours have grown a bit recently, but I still feel 100%. I don’t know what the future holds, but neither does anyone else. I have an army of people who pray for me and we know who holds my future. I’ll just focus on today!

So what am I doing to celebrate this momentous occasion? I suppose I could have planned something special, something big, but I’ve been so busy just living life that this one crept up on me! I have absolutely nothing planned, but that’s okay. I’m alive and living life to the fullest and that’s all that really matters!

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Progression

/ edebock / 6 Comments

As a neuroendocrine cancer (NETS) patient for the past ten years, stable became one of my favourite words. After each set of tests and scans, stable was the word that my doctors used to tell me that my cancer had not grown or spread. Unfortunately, when I saw my specialist on Friday, that was not what I heard. Instead, I heard the word progression.

In the cancer world, progression is the word that is used to describe growth or spread of the disease. It didn’t come as a shock to me. Over the past few months, we’ve been carefully watching test results that appeared to indicate that my tumours were likely becoming more active again. The news we heard on Friday was actually better than I feared. There has been a tiny bit of growth to a couple of tumours on my liver, but no spread anywhere else. That part is very good news!

Thankfully, I’m a cup half-full kind of person. I think I’d be a basket case by now if I wasn’t!

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So, what’s the good news in this? What happens next and what’s there to be optimistic or hopeful about?

After 126 monthly injections of a drug called Sandostatin, it would appear that it’s no longer doing its job and I’ll be switching to a different medication. Since Lanreotide is also given as an injection every 28 days there will be little change to the routine that we’ve become accustomed to over the years. There are, however, some real benefits to this medication.

Unlike Sandostatin which is know to suppress the production of the hormones that these tumours produce and thus reduce symptoms, Lanreotide is also known to actually delay their growth. Secondly, Novartis, the company that produces Sandostatin, cut out their in-home injection program over a year ago and I had to arrange for my family doctor to begin giving me my injections. Lanreotide is produced by Ipsen and I’ve been assured that once again, a nurse will begin visiting my home to administer my butt jabs. Not only is that more convenient for me, but it frees up my doctor’s time for other patients which is an important issue in a rural area where there’s a doctor shortage. Perhaps the most exciting part of all this for me, if there can be excitement in receiving news of progression, is the fact that hubby and/or I can be taught to administer the Lanreotide injections ourselves! Why is that exciting, you ask? Why would I want to poke myself if a visiting nurse could do it for me? For someone who loves to travel, as I do, the idea that I might be able to pack my medication and leave the country for more than 28 days at a time is actually quite exhilarating!

I’m already somewhat familiar with the new drug because many people in my online patient groups are on it and seem to tolerate it well. Hopefully I will too. I’ll have tests and scans again in late October to see if it’s having the desired effect. In the meantime, it’s summer in Alberta. There’s camping, hiking, and kayaking to be done and golf to play. In spite of the change from stable to progression, I still feel 100% and I’m determined to keep on living life to the fullest.

Living my cancer life out loud

/ edebock / 6 Comments

This post was inspired by an interesting discussion that took place awhile ago on one of the online neuroendocrine cancer patient groups that I’m a member of. It started with a younger patient asking for advice about when to tell the person she was going on a first date with about her cancer. I was surprised to learn that most of the patients who responded to her question had told very few people outside their immediate families about their diagnosis. I’m quite the opposite. Though I’m naturally an introvert, I’ve been living my cancer journey out loud since the very first day I heard that fateful C word!

In the summer of 2013, when my doctor called and told me that I had cancer, I’m sure that I was in shock. One of the first things I did was sit down and make a list of who I needed to call and then I started. I called our pastor, several close friends, and of course, our family. Just three days later, I wrote the blog post that shared my diagnosis with the rest of the world. At that time, we didn’t even know what kind of cancer I had. I shared that news a couple of weeks later in this post.

Why? Why did I choose to share my diagnosis so openly?

Learning that you have cancer is overwhelming and I knew that this wasn’t something I could handle on my own. As a Christian, my first instinct was to call the people I knew would pray for me. Without realizing it, I was beginning to build an invaluable support system that would make the journey so much easier.

There were two reasons for sharing my diagnosis on the blog. Writing helps me process things and boy did I need to process! Since I’d already been blogging for several years, that seemed like the logical place to start writing about what I was going through. Secondly, posting updates on the blog was an easy way to communicate what was happening with our large extended family and with friends who are literally spread around the world. It meant that I didn’t have to repeat myself over and over again which would have been mentally and emotionally exhausting.

As time went by, however, sharing my journey openly and online also became a way to educate people about neuroendocrine cancer. Ten years ago, NETS was considered a rare cancer, but the number of people diagnosed with this type of tumour has been increasing over the years and it’s no longer fair to say that it’s rare. Sadly, however, it’s still not well-known, so education and advocacy are extremely important. Like any other cancer, early detection means more likelihood of successful treatment and long-term survival. Family doctors need to know that when a patient presents with symptoms such as abdominal pain, diarrhea, shortness of breath, wheezing, heart palpitations, high blood pressure, and/or flushing, neuroendocrine cancer is a possibility. Patients need to know that when their symptoms persist after a more common diagnosis is made, they need to persevere until they get a correct one. It could be NETS. Patients with neuroendocrine cancer, particularly the newly diagnosed, need to know that there is hope. More research is needed to find better treatments and ultimately a cure. Until these things happens, I’ll continue living my cancer life out loud!

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Role reversal

/ edebock / 10 Comments

It’s been quite awhile since my last health update on here, so for those of you who follow our cancer journeys, I thought it was about time for another one. I say journeys because you may remember that, in addition to my cancers, hubby was diagnosed with prostate cancer last summer. Fast forward eight and a half months and as of this week, he no longer has a prostate and as far as we know, he no longer has cancer!

Surgical removal of the prostate, in spite of the fact that it has some negative effects, is thought to be the best choice for long-term survival, but when we saw the urologist in August, he warned us that many specialists consider 70 to be the upper age for performing that surgery. At 73, Richard is otherwise in excellent health and physical condition, so he was referred to a specialist who does robotic prostate surgery, the most advanced treatment option available, with the hope that he would agree to do the procedure. Had he not, there were several other options that we would have had to consider.

On October 31, after the appointment was delayed by a few weeks due to us both having Covid, we finally met with the surgeon. He had clearly reviewed Richard’s case and had absolutely no qualms about performing the surgery on someone in his physical condition. As Dr D said, we could easily look around his waiting room and see men a decade younger than Richard who weren’t in the shape he was in and who would be much higher risk. We were told at that appointment that the wait time for surgery would be five to six months.

Almost five months later, we arrived at the hospital in Edmonton at 5:30 a.m. on Monday and by noon Richard was in the recovery room with no prostate and hopefully no cancer. After one night in hospital, he was released the following day and I suddenly went from patient to caregiver! Total role reversal!

Over the nine and a half years since my first cancer diagnosis, Richard has stood by me and provided excellent care when I’ve needed it. He’s accompanied me to countless specialist appointments and seen me through numerous scans, two major surgeries, 30 radiation treatments, and 14 PRRT treatments. Now it was my turn and I wondered how I would do! Thankfully, he’s been a model patient and things have been going well so far.

The biggest challenge facing us when we got home was the fact that he has a catheter which won’t come out until April 6. The first evening, as we figured out how to change from day bag to night bag (including cleaning the day bag and tubing for the next day’s use), we were both all thumbs. Once we figured everything out though, he’s been able to manage it with minimal assistance from me. A bigger challenge for me might come when our snow finally melts and I’m suddenly in charge of the early spring yard work that Richard usually takes care of! He has very clear instructions not to do any heavy lifting, snow shovelling, or lawn mowing for six weeks. At that point, we’ll also see the surgeon for a follow-up appointment. It’s then that we’ll receive the pathology report and know for sure that he’s cancer free.

And what about my cancer journey? Since early December, I’ve had a CT scan and three different PET scans. Two of those were part of a study. All four scans agreed… no change; no growth or spread. As far as we can tell, my neuroendocrine cancer (NETS) continues to be stable. We’re somewhat puzzled by the fact that a couple of markers in my blood and urine that are specific to NETS have been climbing, but since I’m having absolutely no symptoms, we’ll simply continue to monitor those with more frequent testing. Last week I had my annual check up with the wonderful surgeon who removed both of my other cancers and the good news is that there is no sign of recurrence of either one of those. This is as close as I’ll ever get to a clean bill of health, so I’m in good shape for my present role of caregiver instead of patient!

Stronger Together text with arrow. Corona virus - staying at home print.

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). 

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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!