When you've been having yearly follow-ups for 17 years due to neuroendocrine cancer, it's hard to see where one year of follow-up ends and another begins. This is especially true when I'm scheduled almost year-round for different appointments, but it's been a full time job juggling all of my medical appointments lately, which means I've had, I think ALL of them within the last little while. So after reviewing all of the test results with my endocrinologist today, I think we can safely restart the clock as of now.
I'm officially under the care of a new endocrinologist (as mine of 30 years has now retired) who I have yet to meet in person, but today he told me that he has just opened his NeuroEndocrine Clinic at the Cross Cancer Center in Edmonton and that is where I'm to be seen from now on. I'm excited to meet him and his team in person. We discussed the results of my recent tests as well as my Patient Advocacy work that I'm now involved with through the Canadian Neuroendocrine Tumor Society (CNETS). He is also excited about my new endeavor and is in agreement that there's some very exciting things happening in this arena.
Between him and my amazing family doctor, I believe that I can make a difference (at least inside my circle of care for now) in spreading awareness and helping to educate them on NETs, which will hopefully help others in their quest for diagnosis.
What I'm doing:
I just got back from Montreal, where I was invited to attend as a delegate for the annual medical and scientific meeting on behalf of CNETS, where I'm now officially on the Advocacy Advisory Board!!
We went for Advocacy Training on the Friday, the Scientific and Medical Meeting on the Saturday, and the Patient Conference on the Sunday. To type all of what I attended into a tiny sentence like that doesn't do it justice. The advocacy training was incredible and so inspiring I'm just reinvigorated in finding my true purpose again.
This inspiration has been building inside of me over the past several years and that is why I decided to start running the MEN Support group on Facebook but wanted to take this to a new level. So I have approached CNETS about incorporating MEN support under their scope of work and they have been so amazing to work with so far, I'm absolutely giddy about the future work that we can do together. I have some goals with this exact group of patients in mind, that will allow for MEN patients in Canada to have access to MEN specific information under the CNETS umbrella. I feel like CNETS is the perfect landing place for all of us, and that together we have similar goals. So stay tuned in because things are happening!
At the conference, we learned about new clinical trials underway and some incredibly amazing new research studies that are happening. I'm not sure if this is public knowledge yet, but when I get permission, I want to cover it and why I'm excited about it. I'm actually actively pursuing having myself involved in some of the research, so that will be a very exciting thing to share in the future and what it potentially means for other MEN patients in Canada!!
How I'm doing:
Summary of my latest tests:
I've just completed MRI of Pituitary, MRI of Abdomen with contrast, FDOPA, Gallium 68 Dotatate PET/CT, Ultrasound of thyroid, and a myriad of blood tests. I had EUS last year but will be going for another one this summer already.
So, on a personal health level, things are going pretty well still. My thyroid is the only real area of concern right now as I have 5 nodules and they want to biopsy one of them. Not gonna lie, I've done this before and hated it so I'm not really excited to have it done again. The thyroid plays such a huge role in overall health because we have receptors in every cell in our bodies. This is quite a complicated thing I'm still researching. Looking at Iodine therapy and the host of supporting elements for thyroid health is one of my latest areas of study. I know this has to be one of the puzzle pieces I'm missing that is contributing to my more recent debilitating fatigue.
The other new thing is that I'm now fully on Insulin, after 11 years of managing blood sugars with diet and the last 6 years playing around with the type 2 diabetes drugs. It took some convincing, but I pushed for a C-Peptide test to be done alongside serum insulin to prove that I'm not actually producing much insulin anymore (only having 20% of my pancreas left). This is another area I feel that doctors need to be better educated on. I've been treated as a type 2 diabetic all these years, when in fact, the correct diagnosis is Type 3C. I've found incredible freedom with this new management. No more horrible side effects and kidney damaging drugs. I wish I'd be put on insulin years ago. It was scary at first but getting the hang of it now!
I had one final consultation before my Endocrinologist of 30 years retired. He told me that I was his only NET patient not on the monthly butt shot: Lanreotide. For those who aren't aware, this is a deep subcutaneous shot that is typically administered every 28 days to (I believe now) all neuroendocrine patients that is said to slow the growth of the neuroendocrine tumors. They used to administer these to patients that were experiencing carcinoid symptoms such as flushing, which I've never experienced. Common side effects include: nausea, vomiting, upset stomach, fatigue, overall pain, headaches, blood sugar issues, slowed heart rate, and gall bladder issues. Ronny Allan has written many articles on this, so I won't go into great detail. However, most NET patients do NOT take what I am: LDN, and I think that I'm going to continue doing what I'm doing for now, since I have been stable and have a better quality of life without all of those other side effect to deal with for now. My team is monitoring the tiny PNETS that I do have very closely, so I'm ready to change course if anything changes or progresses.
He also said he'd like for me to seriously think about having a complete pancreatectomy soon, while the tumors are still contained inside my pancreas. He thinks that the PNETs I have could spread outside of my pancreas. I agree this is very likely the case and we've had this talk so many times over the years. I've been thinking about it more lately. It's a huge surgery. I watched my brother go through it and it scares me. I just don't know what to do. I went to the NIH years ago for a second opinion where they told me not to go through with it. It's so confusing. I wish I knew what to decide. But at the patient conference, one of the surgeons made a point that is sticking with me and that is: in neuroendocrine, we don't do surgery to cure, we do it to improve quality of life. And maybe I'm holding on to that too much...or maybe I should get it over with, especially since I'm already on insulin and enzymes anyway, what is the pancreas actually doing besides acting like a ticking time bomb? Maybe I'm waiting for results of the NETTER2 trial, of which I would actually qualify to be part of this study: maybe PRRT treatment as a FIRST line of treatment is something that I could be looking into one day as well. So much to consider!
Whatever the past MRI's picked up in my pituitary and liver are not there now, so I've got the all clear again as far as disease spreading to my liver, or a new tumor in my pituitary (as MEN1 patients are prone to). This is very exciting news!
One noteworthy thing as well, for my liver, is that whatever fatty liver I used to have is now extremely minimal, as noted on my last MRI. So here is yet another instance where I can see direct results of my lifestyle changes making demonstratable changes on test results. I believe the intermittent fasting and liver castor oil packs is what has played the biggest hand in this change.
Which brings me to my next point, and that is that I believe: that cancer is akin to "death by a thousand cuts". I do not believe it is any one thing that can cause cancer or cure it, but a combination of a thousand little things. Yes genes play a role, but lifestyle can flip the switch. When a person tries to prove which intervention is going to directly cause cancer or directly cure it, I believe this is an impossible feat. You can look up a million different causes and a million different things and no where are you going to find empirical evidence that any one thing makes a curative difference. However, I'm living proof that a bunch of little things can demonstrably make a huge impact on if my body responds and slows down tumor growth, or speeds it up. I don't have time on my side, especially with this genetic defect that affects the tumor suppressor gene, or given that our world is increasingly toxic, but I do have knowledge and am blessed with the ability to apply the knowledge that I've gleaned over the years to allow me to survive for the past 17 years.
Anyway that's the latest and I look forward to hearing your comments :)
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