No, I’m not pregnant! As much as my mom would probably love that, but as of right now, this news is actually even better!
My cancer is not hereditary!!!!!!
Praise the Lord! It’s definitely the biggest answer to prayer so far! It’s been an unbelievably long time to get these results, but they are finally here and it’s good news!
I had my first meeting with the genetic consult lady in April, just before we went to Mexico with my family. In that meeting, we talked about our family history and if there had been anything like my case or anyone with symptoms that would suggest thyroid cancer in my family before. Every single one of those questions was answered with a ‘No’. Nobody that I knew of had thyroid cancer, no one had any of the symptoms I was having. So the likelihood of me having the hereditary version of Medullary Thyroid Cancer was relatively low. However, there was a chance that for whatever reason, I could be one of the odd cases, where I would be the first one with this mutation. This is super rare but does happen every once in a while. Since I was diagnosed at such a very young age (young for this type of cancer, and the advanced stage of diagnosis) there was a higher possibility that this would end up being a hereditary form.
As we were talking about the possibilities of the lab finding a mutation in my genes, she asked me if I wanted to know and if so, what my reason was, why I wanted to know. Having my meddie Facebook page really came in handy in this regard. Of course I wanted to know, and the reason why I wanted to know wasn’t just for me but also for my possible future children and my family who would have needed to get tested if I was positive.
For my sake
Why do I not just want, but need to know this? Well, if I was positive for the MEN or RET gene (which is the mutation they are looking for and causes MTC), that would mean I would have to get tested for a variety of other possible problems. One of the biggest one being Pheochromocytoma. This means that I would have a (probably) non cancerous tumour growing off my adrenal glands (which sits right above my kidneys). This would then mean that I would be at very high risk of having persistent or episodic high blood pressure. Of course there would be few more things to consider but, thanks be to God, none of that has to be done now.
For my future children
This is somewhat of a no brainer. If I had this mutation there would be a 50/50 chance that I would pass on the gene. In return that would mean that if I was blessed enough to be able to get pregnant, I would want my children to get tested for the gene within the first year of life. If then they are positive, I would (having done my research in this department as well) want to have their thyroids removed within the first 2 years of their life at the very latest. Why would I put my chirldren through something terrible as losing their thyroid at that early of an age you might ask? Since surgery is the only known ‘cure’ for this horrible disease, and it can’t even begin to form without a thyroid, I would want to give my kids the best chance possible to never develop it in the first place. Yes that would mean they would be on hormone replacements their ENTIRE life, but what is better, living without a thyroid or for sure getting cancer? Like I said, for me…. a no brainer.
All of that being said, Jeff and I had started talking about this quite frequently, if I actually was positive, would we even risk it for our children to potentially get this gene. Or would we maybe lean more towards other options of having children such as adoptions or snow flake adoptions, or not having children at all. If you have never heard of snow flake adoptions, it’s an amazing program. Often times when couples decide to do In Vitro fertilization, they are left with many, many embryos ‘left over’ either when they are done having kids, or when they are done trying. So what happens to these embryos? Most of the time one of two things. Either they are destroyed or they are given to research. Another option which I have only heard about within the last 6 years, is snow flake adoption. That means that these couples that made these embryos have decided to give them up for adoption. It works just like other adoptions where the biological parents get to choose the parents they want to give these embryos to. The embryos are then implanted just like it would be done in any other In Vitro situation. In this case, I would be able to be pregnant, without the risk of giving this gene to my children. I would be able to carry them and give birth to them, just not give them my genetics. Although studies have shown that some genetic information would be transferred while carrying the baby, however it would not be the RET gene. It’s an amazing way of being able to be pregnant, without the fears, at least for me.
The reason why I am sharing this is, that I am hoping and praying that maybe one day someone in the same situation that I was in, will find my story and find hope in it. When I first started this journey, there was nothing but negative stories out there to read. As much as some of the chapters in my story have not been great, most of the time I consider myself blessed. Why do I say blessed? Because I get the chance to live for a while. I get the chance to fight this disease. Many others don’t get that chance. I know what to look for, what symptoms I can expect and when to seek medical advice when those symptoms become more prevelant. I get to plan a life. I may even be able to have children at some point. So yea, I feel blessed.
Why I feel blessed
I shared this sentiment that when comparing my cancer story to so many others, I am blessed, on my Meddie Facebook page not that long ago and got very varying responses. Some agreed with me wholeheartedly, while others reminded me of how horrible this disease can be. I understand and agree to some degree. My take on it is that as horrible as it is to have cancer, there are people out there way less fortunate than I am. Who go in to get their wisdom teeth removed and die 4 months later because the surgery disturbed a Tumor that spread like wildfire. People who one day just fall out of their chair with a massive heart attack and are gone. I am blessed! I can more or less prepare myself for my end. Of course there is always the possibility of being hit my a bus tomorrow, but the way I live my life has already changed! I have found an understanding of what it means to cherish the moments. I get to concisely make memories. I get to live.
The process
Anyways getting back to my consult appointment. At one point she asked me if I really understood what it would mean to have this mutation and all the things that comes with having cancer. Because she felt like I was very composed and didn’t seem to be ‘phased’ by the conversation we were having. Here I explained to her that I have been dealing with this cancer for almost an entire year and have had a LOT of time to come to terms with it. I think what a lot of people don’t understand, is that you can be ‘ok’ with a diagnosis like cancer, when you have the support of amazing family members, an amazing church family but most of all an amazing God! What do I have to lose while enjoying life and coming to terms with a disease that I can’t do much about anyways! All I have to lose is the paralyzing fear that comes with it all! That is literally all!
So off I went to give blood. One month later I got a phone call telling me that I had to go back to give more blood, because the lab in Calgary ‘did not have enough DNA’ to perform the test. That was a little mind boggling to me, since ….’how do you not have enough DNA when I am giving you BLOOD’?? Anyways, I made my way again to the lab to give more blood. This time I explained to the lab technician what this test was for and asked her to draw multiple vials to make sure that this time there was no possibility for them to know have ‘enough DNA’. She ended up taking over 20mls of blood and it was sent off again. I was hoping to get results within a couple of months from my first meeting with the genetics consultant, but was prepared to wait as long as August. Guess what happened? I got my results August 8.
I was just sitting at my weekly vitamin C treatments when I received the scheduled call to give me the news. I cried and yelled out ‘Thank God’. It was such a relieve as you might be able to imagine. I am not at risk for any of those other crazy parts of the diseases that come with MEN. I can safely start thinking about children without the fear of giving it to my children. It just takes away so many worries! In a way we were all expecting the results to come back negative, but it still is like a heavy load lifted off all of our shoulders.
Life is good right now!! I am stable! I am on the wait and watch list that every Meddie hopes to get on! I am returning to work in a couple of week! My genetics came back negative! I have an amazing husband, Family and friends! A new unbelievable community in my new found Epicure family (which I will tell you about in my next post) and an incredible God who knows everything and let’s everything happen in its season!
Ecclesiastes 3:1-8
1 “There is a time for everything, and a season for every activity under the heavens:
2 a time to be born and a time to die, a time to plant and a time to uproot,
3 a time to kill and a time to heal, a time to tear down and a time to build up
4 a time to weep and a time to laugh, a time to mourn and a time to dance
5 a time to scatter stones and a time to gather them, a time for embrace and a time to refrain from embracing
6 a time to search and a time to give up, a time to keep and a time to throw away
7 a time to tear and a time to mend, a time to silent and a time to speak,
8 a time to love and a time to hate, a time for war and a time for peace.
