So, I have gotten the question multiple times about whether I will need future operations or not due to having the CHD1 mutation. In short, yes, I will. My journey is not done with my stomach removal, although I really wish it was. I want to first talk about the yearly doctors’ appointments I have to go to, the specialists I see, and then I will get into what the future holds for me.
So, the next biggest concern for doctors now, in regard to my health, is breast cancer. I have been getting yearly screening for breast cancer since I was 21, right after I found out I had the gene. Since my situation is so unique, I actually see an oncologist, even though I have never had breast cancer. We do my testing in a rotation. Every 6 months I get an MRI, and then 6 months after that I get an ultrasound. Essentially, I get my breasts checked twice a year. I’m not surprised that they want to test me so often, I mean breast cancer is really prevalent in my family. Especially with my grandmother who had breast cancer at 29. But do I enjoy having to plan my year around these exams? No. Will I continue to get them? Absolutely. I have already had three false alarms when it comes to my breasts. Meaning, they have found an abnormal mass three separate times, one of those times resulted in me getting a breast biopsy (I actually had gotten an upper endoscopy the same day as the breast biopsy, talk about a crazy medical day). But all of the masses they have found turned out to be benign.
Aside from the testing for breast cancer I really haven’t undergone any testing for the other types of cancers I am prone to. Such as, I am not getting colonoscopy’s even though I am prone to colon cancer. And they are not too concerned about ovarian cancer. I am not sure if this has to do with my age, or the fact that the statistics related to those cancers are way lower than the stomach and breasts, but for some reason my doctors haven’t even brought up the idea of starting testing for those types of cancer. Like I said the main concern that doctors focus on for people with CDH1 is your stomach, and your breasts.
OK, so let me tell you about all the lovely doctors I get to see. I am not going to name names but if you are in need of a doctor you are more than welcome to reach out to me. I will say that most of the doctors I have seen, up to this point, are all located in the DC, Maryland, and Virginia area (DMV). So, before my stomach was removed, I saw a gastro intestinal surgeon, I actually saw multiple of them. I had one that was dedicated to just doing my biopsies, another that was the first doctor I saw when I found out I had the gene and she was a potential surgery candidate for me, and then there was my actual surgeon at Johns Hopkins. I also see a breast oncologist, which I spoke of earlier, who focuses solely on making sure I get my yearly breast exams done and delivers the results to me. I have a doctor that works directly with the surgeon who did my surgery at Hopkins, she is the person I met with to prepare for the surgery. She also is the person I go to whenever something is wrong, if I have any questions, and she was the one to push me to get my stomach removed at my age. I deal with a few nurse practitioners at Johns Hopkins, they are there to follow up with me since I’ve had the surgery. I honestly haven’t talked to them much in the past few months because they stop following up at a certain point after the procedure. I am in the process of meeting with some local doctors due to the concern of me taking birth control. Which leads me to what I want to talk about next.
So, if you didn’t already know, estrogen can increase your chances of getting breast cancer!! Crazy right?? I had no idea until my cousin, who’s a nurse, told me this. The problem with this is I take birth control, and what does birth control have in it?? ESTROGEN. I went to the gynecologist last week and he put me on a new pill because the old one gave me terrible headaches and other side effects. The only problem is the new pill has more estrogen than the last one I was taking. When I told him about my CDH1 situation he was really concerned and referred me to a specialist to follow up. For me, I will probably have to switch from the pill to some for of an IUD. I don’t want to; I like taking the pill and I’m very good at taking on time every day. But since estrogen can increase my risk for breast cancer (a risk that is already so high) the doctor I saw thinks I should seriously consider an IUD or getting my tubes tied. Yes… I totally threw that in there on purpose. GETTING MY TUBES TIED. At the age of 25 I never thought that getting that procedure would even be a thought at this point in my life. But I know for a fact that I will never carry a child, I don’t think it is nutritionally possible, even though I know it can be done, I just can’t imagine myself being able to do that. And I personally couldn’t deal with the mental toll that a miscarriage has on a person. So, getting my tubes tied is a very real thought for me lately. In all honesty, I am ready to get it done mentally. But it also is really hard because mentally I still feel like a kid, and getting your tubes tied is not meant for people as young as me. I am not sure that I will get this procedure within the next two years, but I definitely see myself getting it done at a very early age. So that is one of the procedures that awaits me in the future.
Alright, now its time to talk about the next BIG procedure I will need to get done, and honestly, I want to get it done before I’m 30. THE DOUBLE MASTECTOMY. Just like with my stomach I want to get the procedure done BEFORE I am diagnosed with breast cancer. I do not want to undergo chemo; I do not want to have to fight that fight. I just want to get my boobs removed (they give you free plastic surgery with this procedure and its covered by your insurance, just a side note). So basically, its just like getting a boob job. And I am totally down for that. I would rather get it done now while I am young and I know how fast I can bounce back. I have put a lot of thought into the timing, regarding when, I want to get this done. And I keep thinking “the sooner the better”. So, although I say before 30, I may very well get this surgery as soon as next year. I guess having stomach cancer scared the senses into me, because I am jumping at the chance to get this surgery out of the way. I know it’s a big procedure, and I know I just had a HUGE procedure, but I know what my body can handle and what I can mentally handle. I am ready to check this part of my journey off my list.
Well, that’s basically it. This is all I have to worry about right now. This is not to say that another procedure won’t come along down the line, but these are the ones I am focusing on right now, in the present. If you have any further questions about them please feel free to ask! I loved how responsive everyone was with my last post!
