Scanxiety

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! 

Fine, thanks!

/ edebock / 6 Comments

It’s been quite awhile since I posted an update about my health. That’s because there really hasn’t been anything new to report. For someone with two kinds of cancer, that’s actually a very good thing, but I know that there are those of you who want to know what’s going on, so here’s the latest.

It’s already been over six months since I had my final PRRT treatment. Other than monthly injections of Sandostatin that are mainly meant to control symptoms, I’m not presently receiving any treatment for my neuroendocrine tumours (NETs). That’s a bit disconcerting, especially when more than one fellow zebra that I’ve come to recognize through a Facebook support group has succumbed to the disease in recent months. It’s really hard when one of those announcements shows up in my news feed.

On the other hand, I’m feeling 100% healthy, so most days it’s easy to ignore the fact that there are things lurking inside me that shouldn’t be there and that could begin to grow or spread at any time. I’m blessed to be able to live a full and productive life. I’m lifting weights again this winter and I’ve recently dusted off the treadmill and started using it again. If anything, I’m feeling better and stronger than I did six months ago.

A week before Christmas, I was in Edmonton for CT scans and blood work to find out if I’m really as healthy as I feel and yesterday we met with the doctor to get the results. Sometimes I suffer from a few days of scanxiety before an appointment like this one, but this time I felt completely at ease. I just kept reminding myself that God promised to take care of me over six years ago when I was first diagnosed and He has been faithfully doing that ever since. There’s no better place for me to be than in His hands.

When we sat down with the doctor yesterday all I really needed to hear was one word. Stable! Nothing has changed. No growth, no spread! Nothing to worry about. So, unless I begin to experience symptoms (which I haven’t since treatment began), we go through the same routine six months from now and hopefully receive the same good news again… and again… and again.

The CT scans reveal very little about my thyroid cancer which is entirely different and unrelated to my NETs. For news about that one I’ll have to wait until early April when I see that doctor again and he uses ultrasound to take a closer look and measure whether or not there’s been any change.

In the meantime, when you see me and ask, “How are you?” if I answer, “Fine, thanks!” that’s because I really am!

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Still stable!

/ edebock / 14 Comments

Stable has become one of my favourite words! Not the kind you keep your horses in, but the word that my doctors use to tell me that my cancer has not grown or spread!

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I heard that word again today when I sat down with the doctor to discuss the results of the CT scans that I had back on August 21st. Waiting almost a month was difficult and I admit to having some episodes of scanxiety during that time. It was heaviest as I sat in the waiting room early this afternoon not knowing if the news would be bad or good. I had no reason to suspect that it would be bad; no symptoms to suggest that the tumours might be active or growing again, but the knowledge is always there that that day could come at any time.

When the doctor told us that everything continues to be stable, the load was lifted in an instant and I felt lighter than air! All the way home (a two hour drive) I felt as though, had my seatbelt not been fastened, I might have lifted right off my seat!

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And so I keep on hanging on, living life to the fullest, and praising the Lord!

 

Good news and then…

/ edebock / 11 Comments

I’ve held off on writing this post for a little while because of the “and then” in the title, but here’s the latest update on my health. I had my tenth Lutetium treatment on Wednesday afternoon, spent the night in seclusion at the Cross Cancer Institute, and underwent follow-up scans early yesterday morning. After lying perfectly still under a warmed blanket (I love those warmed blankets!) while machines whirred around me taking detailed pictures of my insides, I sat down with Dr. Kounma to review the images.

These moments always stir up a bit of scanxiety. Rather than diminishing over time, I think that this has actually increased a bit in recent months. Shortly after I was diagnosed, we read that the average life expectancy for a NET cancer patient was five years following diagnosis. Better than a lot of cancers, I know, but I’m just a few months short of that now. Thankfully, the numbers have changed since that time. Last fall, Dr. MacEwan, head of my treatment team, presented at a NET cancer conference in Europe. By then, the time from diagnosis to disease progression (in other words, the cancer begins to grow and spread again) for patients who are part of the same clinical trial as I am, was 55 months. I passed that milestone a month ago.  This, too, is an ever changing number as more and more of us are meeting with success on this treatment plan.

Once again, the news was good! The post treatment images are not detailed enough to give exact measurements, but it was clear even to me that my cancer is not growing or spreading. In fact, if there has been any change at all in my tumours over the past few months, it appears to be for the better. We left the clinic rejoicing and praising the Lord!

AND THEN…

We were back home and it was four o’clock in the afternoon when the phone rang. It was Dr. Kounma. Apparently, when the radiologist reviewed the morning’s images, he saw something that appeared to be a partial obstruction of my small bowel. This was new since the CT scan that I had in February. Though I have exhibited absolutely no symptoms, Dr. Kounma’s instructions to me were “Go to ER for further evaluation today!”

YIkes!

That must have been one of the quickest ER visits in history! I left immediately for our small rural hospital, about ten minutes away and was back home again in little more than an hour. When I explained the situation to the intake nurse, she immediately picked up the phone and called my family doctor. He came over from his office, which happens to be housed in the same complex, and immediately reviewed the radiologist’s report online. His first comment to me when he saw me was, “Well you certainly look healthy for someone with a bowel obstruction!” He quickly determined that we were likely dealing with a red herring; that this was probably simply a false alarm. He was also quick to assure me that if there really was a blockage, it had absolutely nothing to do with my cancer. That was very reassuring. In fact, I wish that Dr. Kounma had thought to mention that.

Dr. Hanton decided that rather than jumping the gun and sending me back to the city for a CT scan, we would be best to take a wait and see approach. He told me the symptoms to watch for: vomiting, belching, abdominal pain, abdominal distention, lack of appetite, lack of bowel action, inability to pass gas. All of these would be pretty hard to miss if they began to happen. If need be, come back anytime, night or day, he told me and he even gave me his personal cell phone number in case I needed to get in touch with him!

18 hours have passed since the scans were completed and I’m still pooping and passing gas. (I bet you really wanted to know that, didn’t you?) It’s possible that there might be a partial blockage, but both doctors also assured me that these things sometimes resolve themselves. In the meantime, I’m thankful that my cancer is still stable and that, other than the usual post treatment tiredness, I’m feeling fine. Praise the Lord!

Fighting the third enemy

/ edebock / 4 Comments

On February 7, shortly before our trip to Mexico, I had routine PET and CT scans to check on my neuroendocrine tumours (NETS). Diagnosed in September 2013, they are Enemy #1. NETS is a little known, slow growing cancer that’s usually considered incurable. Fortunately, in my case, treatment has been successful in shrinking the tumours and controlling the symptoms related to the hormones that they produce. For the most part, I feel 100% healthy and I’m able to lead a normal life.

Enemy #2 was a second completely unrelated cancer discovered in one of my salivary glands in March 2014. After seven hours of surgery and six weeks of radiation it was gone.

So what is Enemy #3?

Fear is not usually part of my vocabulary. I’ve placed my life in the hands of the creator of the universe and I trust Him completely. For the most part, I’ve held onto His promises to take care of me and I’ve experienced great peace, but there is an adversary who does his best to shake that confidence. He, or at least the anxiety that he instills, is Enemy #3.

Anxiety often begins as a little thing, but it feeds on itself. That’s what happened to me over the past couple of months and by this morning, when the phone finally rang to give me the results of last month’s scans, I was approaching a full-blown case of scanxiety.

When you have or have had cancer, it’s easy to start second guessing every ache or twinge and wondering if it’s related, if it’s a sign that something’s going wrong. That’s what happened this time. Back in January, I had a cold. It wasn’t even a particularly bad cold. It started in my sinuses, moved briefly into my ears and then settled in the lymph nodes in my neck. I knew that that’s a pretty normal scenario and that it can take awhile for the swelling and discomfort to dissipate, but I began to worry. When I’m stressed or anxious, I carry the tension in my jaw, neck and shoulders. I’m sure that that didn’t help. Add to that the fact that even almost three years after surgery, nerve damage to my face and neck is still gradually repairing itself. Sensations are constantly changing and feeling is returning where only numbness has been. I don’t even know what my neck is supposed to feel like anymore! Foolishly, I started wondering if maybe I was actually experiencing a recurrence of Enemy #2. Logically, I knew that that wasn’t the case, but Enemy #3 is insidious, sneaking doubts in where they don’t belong.

Then came Mexico. I relaxed, had a wonderful time and forgot all about my neck! On the way home, we spent a couple of days with grandchildren. The two year old, who attaches himself to me like velcro, had a nasty cold. Not surprisingly, I started to experience minor cold symptoms again and with them came a recurrence of the swelling in my neck. Enemy #3 started to poke and prod again.

Long story short, however, this morning’s phone call brought good news. Enemy #1 is still entirely stable. There’s been no growth or spread of my neuroendocrine tumours. Better yet, there’s absolutely no sign of Enemy #2; nothing unusual growing in my neck!

What a relief! Regardless of how weird my neck might feel, I can get on with living life. I will continue hanging on and not let Enemy #3 overcome me!

 

Scanxiety

/ edebock / 16 Comments

Since being diagnosed with cancer almost 18 months ago, I’ve learned a lot of words that I, a self-professed word nerd, would rather not have had to know. Words like neuroendocrine tumour (I have five of them lurking inside of me) and carcinoid syndrome (a group of symptoms linked to the excess hormones released by the type of neuroendocrine tumour that I have). I could bore you with several others but the word that best describes my life the past few weeks is scanxiety.

Scanxiety

Scan + Anxiety = Scanxiety

Though my cancer is incurable, I go for a treatment about once every ten to twelve weeks that is designed to keep it from growing and spreading. I am injected with Lutetium-177, a radioactive therapy that adheres to specific receptor cells in my tumours and destroys them. The morning after each treatment, I have a full body scan that shows us exactly what has been happening with the disease since the previous treatment. Fortunately, I don’t have to wait long for the results. I meet with a doctor immediately afterward to view the pictures and talk about what they show.

For the most part, I’ve been at peace and have approached each treatment and scan without a lot of anxiety but this time was different. Since my last treatment in mid November, I’ve been experiencing intermittent stomach pains. They’re short-lived, lasting only a few minutes. It’s easy to second guess every ache or twinge and wonder if it’s related to the cancer but this was more than that. Stomach pain is one of the most common symptoms of carcinoid syndrome and one I’d experienced prior to diagnosis. I began to wonder if this was a sign that the cancer was growing or spreading.

Worry often begins as a little thing but it seems to feed on itself. Soon I was carrying a heavy burden of anxiety. It continued to grow until I was quite sure that I would hear bad news when I went for this week’s treatment and scan.

Then, on Tuesday night as I was brushing my teeth and preparing for bed, I heard the Lord say, “It’s going to be okay!” Oh, it wasn’t a booming voice thundering through the ceiling of our tiny ensuite bathroom. It wasn’t an audible voice at all but it might as well have been. I knew without a doubt that it was God speaking to my heart. He even said it several times. “It’s going to be okay!” I walked out of the bathroom feeling like the world had been lifted off my shoulders, crawled into bed and had a great sleep. Then, the next morning, I climbed out of bed, picked up the heavy load of anxiety and put it squarely back on my shoulders!

As we drove to Edmonton for my treatment and throughout the hours that followed, I tried to tell myself that everything was going to be okay, but I kept hearing the other voice, the one that said, “Are you sure it was God that you heard? It wasn’t God, it was only your own wishful thinking! You were right in the first place; the news is going to be bad!” Foolishly, I listened and my anxiety grew.

I was thankful for the visits that kept me sane that evening. First, an acquaintance from years gone by that I’ve recently reconnected with. We could have talked for hours! Then, my dear hubby who has walked every step of this cancer journey with me. I was also thankful that the treatment had made me tired enough to sleep.

The next morning, I prayed for the entire half hour or so that I was being scanned and then it was time to find out which voice I should have listened to. I walked into the consultation room where Dr. Sandy McEwan, head of the neuroendocrine tumour clinic at the Cross Cancer Institute, and Dr. Dean Ruether, leader of the provincial endocrine tumour program, sat waiting with smiles on their faces and I heard the words I’d been longing to hear, “Everything’s okay! There’s been no change.”

My cancer is stable! I can relax until mid April when we go through the whole thing again, hopefully without as much scanxiety! Oh, there are still the stomach pains to deal with but I’m even wondering if they will subside now that the burden of anxiety has been lifted. I’m going to be monitoring their frequency and intensity for the next few weeks to see if they’re actually lessening, as I think they may have been. If not, the solution might be as simple as increasing my monthly dose of Sandostatin which controls the carcinoid symptoms or as complicated as surgery to remove the primary tumour from my colon.

For now, I’m simply going to relax and give thanks to the One whose voice I should have listened to!