Let’s talk about NETS

November 10, 2016November 8, 2016 / edebock / 3 Comments

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12,000 to 15,000 Canadians are estimated to have a rare cancer called neuroendocrine tumours (NETS). I am one of them. Today is the day for our voices to rise above those of all the more well known and prominent diagnoses and be heard.

November 10 is World NET Cancer Day, a day set aside to raise awareness of this little known cancer among decision makers, health professionals and the general public; to encourage more funds for research, treatments, and patient support; and to ensure equal access to care and treatment for NETS patients around the world.

Today coffee shops around the world will be raising awareness about NETS by using special coffee cups bearing the slogan “Lets talk about NETS” and handing out promotional material to help educate their customers about the disease.

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Perhaps you drank your morning coffee from one of these. Black and white like the zebra that is used as the symbol of our disease, our hope is that they will draw attention to and begin conversations about this increasingly common, but poorly understood cancer.

There are several key messages that we would like to highlight today. First of all, as with other cancers, early diagnosis is important. Sadly, it doesn’t happen often. If the initial tumour is found before any secondary growths occur, it can often be removed surgically and the patient is considered cured. Once it has spread, however, the disease, though slow growing, is incurable. Treatments are improving, but it is still considered terminal.

Awareness of symptoms is key to early diagnosis. Unfortunately, however, misdiagnosis is extremely common. Typical symptoms, which often include abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue and flushing of the skin, are very similar to those of more common conditions such as Irritable Bowel Syndrome, Crohn’s disease, asthma, stomach ulcers, lactose intolerance, diabetes or even menopause. As a result, the average time to proper diagnosis for a NETS patient is 5 to 7 years.

NET cancer can arise in any organ that contains neuroendocrine cells including the stomach, intestines, lungs, liver, pancreas and appendix. While most commonly found in people over the age of 60, NETS can affect both men and women of any age.

So, while you sip your coffee today, whether it be from a black and white “Lets talk about NETS” cup or your favourite mug at home or at the office, why not initiate a conversation that could save someone’s life? Why not talk about NETS?

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Where’s that little black dot?

November 3, 2016June 19, 2024 / edebock / 24 Comments

Now that my cancer treatments are six months apart and I feel so well in between, sometimes it’s almost possible to forget that I have that dread disease. Almost, but not quite.

Yesterday morning, we were back at the Cross Cancer Institute in Edmonton for Lutetium treatment #7 and this morning, I had the follow-up scans and met with my doctors to learn the results.

Once again, the news was good. The black marks on the screen that represent my tumours were not only significantly smaller than they were at diagnosis three years ago; they appeared to be noticeably smaller than they were six months ago. Three were still very obvious and the doctor pointed out the fourth one, but where was number 5? Gone? Was that possible?

Dr. Koumna, the newest member of my care team, explained that what we know for sure is that that tumour, one of the smallest in the first place, is no longer absorbing Lutetium, the radioactive substance that binds to my tumours and fights them on the spot. It may be gone or it may be dead or completely non-functioning. Either way, the news is definitely good!

On the other hand, the morning was also somewhat sobering as we were reminded once again that neuroendocrine cancer (NETS) is a deadly disease. We learned that a couple of things have changed in the treatment protocol since we last sat down with the doctors six months ago. First of all, I will now be having a CT scan three months after every treatment instead of after every second one. In other words, twice a year instead of only once. According to Dr. MacEwan, head of the team, they’ve discovered that leaving these tumours unchecked for six months, as they had been doing, was putting patients at too great a risk. Secondly, although I was told last year that after I’d had four treatments at six month intervals, if everything was still going well, we would try nine months between treatments, that is no longer an option. Again, leaving these tumours untreated for that long was proving to be too risky.

This type of therapy, known as Peptide Receptor Radionuclide Therapy or PRRT, is still very new. It is extending the lives of NETS patients beyond what was possible in the past and as that happens, even the specialists are still learning. I truly thank the Lord that I live so close to one of the centres where this treatment is available because there are not many of them in North America!

The most disconcerting thing that we learned this morning is that, at this point, only 12 Lutetium treatments are available per patient. For me, that means just 5 more. Two and a half years and then what? Dr. MacEwan was frank in explaining that the clinical trial that I’m part of and that is the only way to access this treatment in western Canada at this time, was set up with a maximum of 12 treatments because they didn’t actually expect to need more than that. Though they knew that in the early stages of use, Lutetium was proving to be successful in providing symptom relief, stopping or slowing tumour progression and improving overall survival, they really did not expect it to be as effective as it’s proving to be. Now that some patients are approaching the 12 treatment maximum and still doing well, Dr. MacEwan will be going back to the government to apply for further funding and permission to continue therapy beyond 12 treatments. He fully expects that to be in place before I need it.

In the meantime, I’m highly radioactive again meaning that I need to stay somewhat isolated from other people for the coming week and, as usual after a treatment, I’m feeling quite tired, but I’m home and very happy to report that one little black dot was missing from the screen today!

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This is not my scan because I got so involved in discussing what I was seeing (and not seeing) on the screen that I forgot to ask if I could take a photo of it, but this gives you an idea what the scan I get after each treatment looks like. This patient has tumours that are larger than mine and located in different areas of the body.

Photo credit

I’m a survivor!

June 5, 2016June 5, 2016 / edebock / 4 Comments

Today is National Cancer Survivors Day, a day set aside to celebrate the more than 32 million people around the world who have battled the disease and to raise awareness of the challenges that many of them face.

So what is a survivor? To many, the term ‘cancer survivor’ suggests a person who has beaten their cancer; perhaps one who has been cancer free for several years, but I like the definition used by the National Cancer Survivors Day Foundation. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

In other words, I am a survivor!

I live with cancer every day. Unless a cure is found for neuroendocrine cancer (NETS) within my lifetime or God performs a miracle on my behalf, I will never be cancer free. People have a hard time grasping the idea of a chronic cancer. The usual assumption is that patients either die of their disease or they are cured, thereby becoming cancer survivors, but I look at my situation differently. I may die of my cancer or I may die with it, but either way, I am a survivor! Fortunately my disease is stable at this point and it doesn’t significantly impact my day to day life. A schedule of monthly injections and biannual treatments restricts my previous worldwide wanderings a bit, but I recognize that every day is a gift.

I’m also a cancer survivor in the more tradition sense, as in one who had the disease, but is now free of it. As many of you know, seven months after my NETS diagnosis, I was diagnosed with a second, completely unrelated cancer that was removed surgically. Six weeks of radiation followed and, since that time, there has been no recurrence. That possibility still exists, of course, but in the meantime I will continue to live life to the fullest.

I am, after all, a survivor!

As good as my last scan

April 21, 2016 / edebock / 13 Comments

Fellow NET cancer patient and blogger, Ronny Allen, published a post awhile back entitled, “I’m only as good as my last scan.” That sentiment definitely resonated with me as I never know what to say when people ask me how I’m doing. For the past while, I’ve been feeling absolutely great, 100% even, but unless I’ve had a recent scan, I really have no idea how I’m doing on the inside. That’s why I was actually looking forward to this week’s treatment and it’s follow-up scans, the first look at my cancer in 6 months.

Today, let me walk you through what this two day process looks like. On Tuesday morning at 9:30 a.m. Richard and I sat down with Dr. Sandy McEwan, scientist and doctor extraordinaire and head of my cancer care team. I told him how great I’ve been feeling, he told me how great I look, and I signed consent for the treatment procedure. He also shared some of the recent findings of the clinical trial that I’m part of including the exciting news of one patient who has been surgically proven to be tumour free!

Next, we were off to the volunteer run Sunroom Cafe to kill time over a cup of tea while we waited for the next step which was having my IV inserted at 11:00. Shortly after that, we headed up to the third floor to check into my private room in the nuclear medicine corner of the inpatient ward. In preparation for the treatment itself, I was given an anti nausea pill and a saline drip was started. Then I sat back and relaxed until the arrival of the radioactive Lutetium-Octreotate, which had just been flown in from the Netherlands where it is produced. At that point, Richard had to leave and I continued to relax while it flowed through my veins seeking out and attaching itself to my tumours. Because I’m part of a clinical trial, there is lots of monitoring to be done, so Michelle, who administers the treatment, was in and out of my room over the next hour or so constantly checking my vital signs. My blood pressure remained good and she was astonished by my slow, steady heart rate. Obviously, I wasn’t experiencing any stress. Why should I? After all, this was my sixth treatment and I’m an old hand at this now!

Once the Lutetium was in and the lines were flushed, the IV was removed. If I lived in the city, I’d have been free to go home, but since I live a couple of hours away and had to be back for my scan by 8 o’clock the next morning, I stayed the night. Richard came back to visit bringing me a Subway sandwich as my one and only complaint about the Cross Cancer Institute is the food. It’s so bad that even the staff apologizes for it! Dr. McEwan dropped in to see how the treatment had gone and then I settled in for a quiet evening. I spent awhile visiting and exchanging stories with the patient in the room next to mine, a retired farmer from northern Saskatchewan. At the Cross, Lutetium is administered to three patients at a time.

I slept well and was up bright and early to head back downstairs for my scans. After spending the night at our son’s place, Richard met me there. For the full body scan, I had to lay perfectly still on my back with a pillow beneath my head and another under my knees. Covered by a warmed blanket, I was quite comfortable as my body slowly moved beneath the enormous camera just a few inches above me. Dr. McEwan had planned on having a second, 3D scan done as well, but that machine was down. The technicians were working on it and if he’d felt it was necessary, we’d have waited around until it was up and running again. He was certain, however, that the first scan showed all that we needed to know. My cancer is stable! The tumours haven’t grown and there aren’t any new ones. There’s also no sign of recurrence of my second, unrelated cancer. While it would have been nice to hear that the tumours were continuing to shrink or that, as in the case of the woman mentioned above, they had disappeared completely, that is most unusual and no change is also good news.

I hope Ronny doesn’t mind me borrowing his title, but he is right. I’m only as good as my last scan and right now, that’s very good!

Naming Lavita

February 28, 2016February 28, 2016 / edebock / 3 Comments

Perhaps it’s just an extension of my love of words, but I find the meaning and origin of names fascinating. Long before we had our first child, Richard and I had two boys names picked out, Matthew and Nathan. Interestingly, they both mean “gift of God” and since God blessed us with two sons, we were able to use them both. We had a much harder time choosing names for our daughters. I’ve always been partial to girl’s names that end in A and, after much deliberation, we settled on Janina for our first daughter. A derivative of Jane, it too means “gift of God”! Though the spelling of our second daughter’s name is very similar to mine, Elaine means “light” and Melaina means “dark”! Like our other three, however, she is also a “gift of God” and that’s the meaning of her middle name, Jean!

In addition to naming our children, I’ve helped name a few pets along the way, but I never thought that I’d name a gastrostomy tube; a tube inserted through a patient’s abdomen to deliver nutrition directly to her stomach! Over the past few months, I’ve made contact with two other bloggers who are also neuroendocrine cancer patients and one of them, Lizbeth, recently wrote a post asking readers to help her choose a name for the tube that provides her with vital nutrition. She was tired of simply referring to it as “tube”.

I immediately began to search for girls names that meant “giver of life”, but I didn’t find one that I liked, so I changed my search slightly and began to look for names that simply meant “life”. I quickly came up with three of them and they even ended in A; Olivia, Livia and Lavita. I sent them off to Lizbeth and waited to see what would happen. Here’s what her next blog post said:

A fellow blogger, Elaine, has gave me a name that I’m rather struck on. The name Elaine has suggested means life. Rather apt. For me the tube gives me a better quality of life… It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning. For many people with a tube it is an essential lifeline and the only source of nourishment.

The name I have chosen is Lavita.

NET Cancer Day

November 10, 2015 / edebock / 2 Comments

November 10 is Worldwide NET Cancer Day, a day for raising awareness of neuroendocrine cancer.

It’s not surprising that this disease has escaped the attention of even the medical community at large until now. Many family practitioners will never see a case. My doctor has been practicing medicine for about 20 years and I’m his first NETS patient. A locum filling in at our local hospital last spring went so far as to debate with me whether I even have cancer! He was completely unaware that neuroendocrine tumours can be malignant as most are not.

Is NET cancer really that rare? Here in Canada, specific numbers are not even reported separately, but my estimate, based on US statistics, is that there are approximately 890 new cases per year across the country with only about 106 of those residing here in the province of Alberta. In comparison, 2100 Albertan women are diagnosed with breast cancer each year and 2500 men with prostate cancer. Is it any wonder that those cancers have a much higher profile?

Since it falls upon those of us with the disease to do what we can to raise awareness, there are several key messages that we would like to highlight today. First of all, as with other cancers, early diagnosis is important. Sadly, it doesn’t happen often. If the initial tumour is found before any secondary growths occur, it can often be removed surgically and the patient is considered cured. Once it has spread, however, the disease is incurable. I had 5 tumours at diagnosis and many patients have more. I have been told that I may have had this cancer for as long as 10 years before it was detected quite by accident! Fortunately, it’s usually very slow-growing.

Awareness of symptoms is key to early diagnosis. Unfortunately, however, misdiagnosis is extremely common. On average, patients see 6 healthcare professionals at more than 12 clinical visits before receiving a correct diagnosis because symptoms of NET cancer are often very similar to more common conditions including Irritable Bowel Syndrome, asthma, diabetes, stomach ulcers and lactose intolerance. Depending on where the tumours are located, typical symptoms include abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue, and flushing of the skin. In very severe cases, there can be heart damage causing shortness of breath.

I endured stomach pain and diarrhea off and on for at least 7 or 8 years before my tumours were finally detected. At one point, a medication used to treat acid-related stomach problems was prescribed, but it had little effect. Another time, I tried a dairy free diet for an entire month to see if that would help, but it didn’t.

NET cancer can arise in any organ that contains neuroendocrine cells including the stomach, intestines, lungs, liver, pancreas and appendix. My primary tumour is located in my colon, but I also have three growths on my liver and one in a lymph node. Though it can occur at any age, the usual age of diagnosis is somewhere between 40 and 60.

So what are some of the goals of NET Cancer Day?

to raise awareness among decision makers, health professionals and the general public
to promote research aimed at improving quality of life and prognosis for NET cancer patients
to advocate for equity in access to care and treatment for NET cancer patients around the world
to bring hope and information to people living with NET cancers, their caregivers and their families

What can you do to help? You can help us spread awareness by simply reposting this on your blog if you have one or posting a link to it on your Facebook page. Thank you!

The colours of cancer

October 17, 2015October 17, 2015 / edebock / 3 Comments

October is Breast Cancer Awareness Month and the world around us is turning pink. Professional football players wear pink booties and gloves, NASCAR drivers dress in pink and drive pink cars, and restaurants serve up pink drinks and even pink burgers! In October anything pink sells; everything from pink vacuum cleaners to pink tools and coveralls. Don’t get me wrong; I have nothing against increasing awareness of the disease that is one of the leading causes of death for Canadian women. It took the life of one of my dearest friends just over nine years ago, but I’m fully behind the “Think before you pink” movement that strives to draw attention to the fact that all is not what it appears to be in the world of pink.

Samantha King is the author of Pink Ribbons, Inc., a 2006 book that examined how breast cancer has become a dream come true for some companies that want to bask in the glow of corporate do-gooding. An associate professor of kinesiology and health studies at Queen’s University in Kingston, King helped popularize the term “pinkwashing” to describe campaigns that flaunt the ubiquitous pink ribbon but have negligible effects on the realities of breast cancer. Some companies use pink ribbon related marketing to increase sales while contributing only a tiny fraction of the proceeds to the cause, or use pinkwashing to improve their public image while manufacturing products that may, in fact, be carcinogenic.

Any company can put pink ribbons on its products. When purchasing cancer awareness products, be a savvy shopper. Check the label or tag and ensure that a percentage of the purchase price is actually going to a recognizable foundation or non-profit organization. Oftentimes, making a direct donation to your favourite cancer charity is actually a better way to go.

Is pink the only colour of cancer though? Absolutely not! In fact, there are awareness ribbons in practically every colour imaginable, each one representing a different cancer. Ovarian cancer is teal, uterine cancer peach, liver cancer emerald green and colon cancer dark blue. Prostate cancer is light blue, testicular cancer orchid, leukemia orange and mesothelioma royal blue.

And what of my cancers? Head and neck cancers are burgundy and white, but that one is gone, hopefully for good. This is the ribbon that I wear:

The zebra stripe represents neuroendocrine (NETS) and carcinoid cancers. It’s not surprising that we zebras don’t get as much attention as those pink people do. After all, there aren’t very many of us. In Canada, specific numbers for neuroendocrine cancer are not even reported separately, but in the US there are an estimated 8000 new cases each year. Compared to the approximately 294 500 new cases of breast cancer that are expected to be diagnosed in that country in 2015, that’s a very tiny number, but we need awareness too. There are family doctors who have never heard of neuroendocrine cancer. They have no idea what it is, how it’s treated or that it’s incurable. A locum filling in at our local hospital actually questioned whether I had cancer at all!