Over the last few months I have had multiple conversations about my cancer. One thing that often came up during these conversation was that maybe it isn’t very clear to people I interact with, my readers and sometimes family member as well, what it really means to have an ‘incurable cancer’.
If you were one of the people I have talked to about this in person, thank you for bringing it to my attention. 🙂 I figured I might take this opportunity to explain a few things and maybe communicate a little clearer why my anxiety and depression is always there, often getting worse and many of my appointments aren’t simple follow – ups.
Medullary Thyroid Cancer belongs to a very rare type of cancers that are considered incurable. You might ask, ‘isn’t that true for many types of cancer?” The answer to that is complicated and should really be YES and NO.
You may know someone, had a family member that was diagnosed with cancer and unfortunately didn’t survive it. In that sense, yes there are hundreds, thousands, who are not cured of cancer except through passing on.
But also, no, because many of those cancers, if recognized early enough, have treatment options (surgery, radiation, chemo, other medications) that may send the patient into something called remission. Remission means that the person is currently cancer free and after being in remission for a certain amount of time (usually 5 years), the patient is considered ‘cured’.
What do I mean then when I say ‘My cancer is incurable?’
Well exactly that. 🙂 I will NEVER be able to say “I am in remission”, because that won’t be a possibility for me. There will always be a little bit, or a lot, of cancer in my body. At the moment I for sure have a 7 mm tumor that is cancerous and probably many others that are still microscopic and can’t be picked up yet with a scan.
This cancer is one that goes unnoticed for a very long time. My doctors have thought that my cancer has probably been growing for about 10-12 years before they found it.
Other aspect to this cancer making it incurable is that MTC is considered a neuroendocrine tumor. It’s a big word to basically explain that it spreads very, very quickly, like neurons (nerves). You put your hand on a hot surface and instantly feel the pain, right? That’s because the nerves in your hand fire back to your brain saying “this is hot”. That is how fast your nerves respond, and that is a good analogy to explain how fast MTC spreads. Your nerves go everywhere in your body, so can MTC.
Basically, what I am trying to say is, that MTC has already spread everywhere it is going to show up, eventually. Luckily, it is a very slow growing cancer, which means that it may take years for something to actually cause me issues.
My life will consist of constant scans, blood work and then subsequently surgeries to remove the new growing tumors. Our life is just a constant waiting for the next surgery to be necessary and then be performed. Then hoping and praying there won’t major complications from the surgery or recovery.
My current tumor, that we know of, is on my sternum (the bone in your chest that all your ribs connect to). In order to remove that one, once it grows more, will be a full open chest surgery, which is a very major surgery with a somewhat longer recovery.
As of my last scan that particular tumor has thankfully not grown. In my last post I mentioned that that particular scan was going to possible lead to another biopsy. That ultrasound/biopsy happened on November 21, 2018 and took a while to get the results back.
Eventually, those results came back negative. So, that was a relief and allowed us all to have a calm and peaceful Christmas.
However, this part Friday, January 11, 2019, I went to my doctors office for a regular check on my thyroid levels and asked them to also tell me my last couple calcitonin and CEA levels, my cancer markers. I did definitely not expect to hear what I was told.
Turns out my levels have been up since November and I had no idea until now. To put things into perspective, before my surgery my calcitonin levels were over 2900. Over the last 1.5 to 2 years my levels have been pretty stable at around 1250, fluctuating within 100 points from there. It has never increased above 1350. Now… my numbers are up to over 1700.
At first I was thinking it could maybe be one of the medications added to my routine in October, however after extensive research, asking one of our docs at work to look into it and asking my Facebook support groups, that doesn’t seem very likely. Many other MTC patients have had gabapentin as one of their medications and have had absolutely no change in levels. The medication theory also doesn’t make sense when taking my CEA (the other marker) into considerations, which is also increased. It as well is higher than it has ever been since my first surgery.
We have no idea what that means. It could be that there is a small tumor growing somewhere and excreting hormones that are increasing my levels. Or it could be absolutely nothing, or it could be that they biopsied the wrong lymph node back in November and there actually IS something to worry under my right arm.
My appointment with my oncologist is not until February 5th, so its still a bit until we can find more information and figure out what is going on, if we can even figure it out. I have to say, I am so grateful to have the health care system that we do have in this country, but it is also very frustrating sometimes. Especially when you realize how easy it is for patients to fall through the cracks of the system.
I have said it before, if I was not in health care and knew what I needed to ask for, I don’t know how my course of treatments would have gone. When I called the triage desk at the Cross Cancer, it was almost like they were annoyed with me for calling ‘just because my numbers are up’ and I can’t really back it up with a lot of symptoms.
MTC doesn’t really have symptoms besides the extreme ones that only show up when the cancer already is very advanced and options may be running low. I understand that this is rare cancer and not a lot of people know about it, its just really frustrating when you are trying to advocate for yourself and you aren’t being taken seriously.
I would like to fight this thing as soon as its possible to be fought, so please let me do that. Please let me fight for a long, somewhat healthy and full life, and take my cancer seriously, even if you don’t understand it. If you don’t please ask. I would love to answer questions, bring awareness to this particular one and help educate people.
Truly, I know that the days will come when I am confronted with cancer again and more treatments, eventually probably more and more frequently. I am anxiously anticipating those days. Right now though, I just was hoping to get a little more time between having to figure out whats going on and potentially having to go through more treatments.
In other, happier news… we had a great Christmas and New Years. Minus the cold and flu that was going around and also hit us 🙂
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Christmas Eve 2018 -
Hubby singing Christmas songs at the Legislature
Right before Christmas I got to meet a very lovely, strong, young lady who was also diagnosed with Medullary Thyroid Cancer in October. It is so nice to finally have met someone going through the exact same thing as I am. Someone who can really understand the anxiety every time you walk into a doctors appointment, understand the waiting and the unknown. Jeff and I have met with both her and her fiancee and I don’t think I can explain to you, how great it is to have people that we can support and who can support us as we go through this crazy thing called living with MTC.
My family and I have also applied for Canadian Citizenship, finally after living here for almost 11 years. January 11, 2019 (same day I got the news about my levels), we all went down to Canada Place and wrote our Citizenship exam. I am proud to say, we all passed and will be taking our Citizenship oath in the next few months. 🙂
Thank you to all of you who have been following my journey so far. Much more to come I am assuming, so stay tuned. If you ever have any questions, please feel free to comment below or email me 🙂
Thank you for all your support and prayers.
