I Have Carcinoid Cancer And An Aneurysm

Since you are reading this, I am assuming that you know that I have Carcinoid Cancer. Unfortunately, I have carcinoid cancer and an aneurysm. It was there when I was scanned all the way back in 2013 after I got my diagnosis. Neuroendocrine, and it’s subset, carcinoid cancer seem to spread very easily and so I was sent for a full body scan including my head all the way back in 2013. They wanted to make sure that the cancer had not spread to my brain. When they scanned my brain they found the aneurysm. Everyone was surprised that there anything at all in there but trust me there was. OK, all joking aside. I will try to share with you what I know about my aneurysm the best of my ability. ย ๐Ÿ™‚

Dominoes

So, before we go any further, let’s talk about cancer’s dominoes. Just before I was diagnosed my blood sugar and I had fought uncontrollable blood pressure swings. The doctor literally said to me that I was the oddest patient he had ever met. I SAID NO MORE JOKING. ๐Ÿ˜€ ย  Any how, my blood pressure would swing up and down regardless of my weight or medication. It drove both of us crazy. ย I would literally be gardening on my hands and knees and when I stood up everything would go white and I would almost pass out. I don’t know if that was a result of the blood pressure issues or the blood sugar issues or both. I have no proof that this was related to my cancer but as soon as I began to get treatment for my cancer both issues were tamed. In fact, they took me off of insulin that I was injecting twice a day. I have found that other people with net cancer (neuroendocrine cancer) and carcinoid cancer have had similar experiences. I would also add that it does not seem limited to these two issues. Many of my fellow cancer patients have developed fibromyalgia and a number of other medical conditions. I’m not sure how they tie together but they do seem to be a domino effect of having this form of cancer.

I Have Carcinoid Cancer And An Aneurysm

Carcinoid Cancer – So, let me first explain carcinoid cancer if you haven’t heard of it.ย Carcinoid tumors are a type of cancer that are typically slow-growing but can also be high grade (fast growing like a carcinoma) or intermediate (in the middle) and can arise in several places throughout the body. Carcinoid cancer is aย subset of neuroendocrine cancer. This cancer attack the cells that respond to the hormones in endocrine system and are part of the nervous system. A good example is the digestive tract. The cells that squeeze the food through your intestines are triggered by hormones to do so. Other examples of places net or carcinoid cancer begin are the digestive tract (stomach, appendix, small intestine, colon, rectum) or in the lungs and other similar places.

My Cancer – So, I have carcinoid cancer, stage 4. It is everywhere. It is in my digestive tract, my liver, my lymph nodes, spine, legs, arms…you get the picture. My cancer had started out as low grad (the slow growing kind) but turned into the intermediate type which means it is growing faster but not as fast as high grade which is more like a carcinoma. My tumors are not active which means that they do not release the hormones many of my fellow cancer sufferers deal with. Up until last year it seemed like I was going to lose my battle. Nothing was working. Fortunately, I went to Excel Diagnostics in Houston Texas for PRRT. You can read about it here. Not only did the treatment slow my cancer down, it stopped the growth and shrank my tumors by about 30%. ๐Ÿ™‚ ย Thank God. ๐Ÿ™‚

My Aneurysm – There are all kinds of aneurysms but mine is the type that is a result of a weakness in the walls of the blood vessel. The result is that a bulbous sack develops where a smooth blood vessel should exist. It swells…and if the stress becomes to great..it breaks. Just my luck it’s in my brain and it’s inoperable. I read that 2 percent of people get the type of aneurysm that I have. What are the odds, a rare cancer and a rare aneurysm both inoperable. Ug.

My Follow Up

When I first was diagnosed I had very bad luck finding a doctor who either understood carcinoid cancer or who cared if I lived or died. Because my cancer is so rare there are many doctors who just don’t know anything about it. The problem is…they like to fake it. Yup, for some reason unknown to me, there are doctors who will pretend that they know all about neuroendocrine and carcinoid cancer but, in reality,ย they don’t know anything…or very little. There are others who see you as a cow to be milked of insurance and cash. I seem to have a knack for finding both kinds! So, after some hard fought battles and tons of money AND plenty of plane trips to other states, I have finally found some good doctors. I bring this up for a reason. You see, my very first doctor was of the latter kind. I walked in and I saw dollar signs in his eyes. He had no compassion. He told me I was going to die and offered me no options except the ones he got paid for by the drug companies. To make a long story short, he told me the same thing about my aneurysm. He said it was inoperable and nothing he could do. Just keep an eye on it. Well, let’s put it this way, I decided to follow up and get a second opinion.

So, I went to a quick scan. It was so quick that Lisa asked me what was wrong. Of course, I said, “They found no brain and we can go home.” The technician laughed and my wife just rolled her eyes and asked for a straight answer. It was super quick and the results came back fairly quickly as well.

The Results of the Scan – The results were that it has not changed since 2013 and my doctor seemed very happy with that. To be honest, I am still researching this but it seems that if I am even tempered, keep my blood pressure low and avoid massive blows to the head then I’m pretty good for a while. ๐Ÿ™‚

I don’t know if I had this aneurysm before I had the cancer, or if it was a result of the cancer, but I am sure that it was discovered because of all the scanning that I had done. In addition to following up with my doctor, I will be researching it and trying to understand exactly what is going on in my brain. The most disturbing thing for me is that my Grandfather had issues with strokes and I look very much like him. As I find out more I will share…about my cancer AND about my aneurysm.

Keep fighting,

Ed โ€“ To find out how to use my images on your blog for free โ€“ Click Here
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10 Comments

  1. Hey Ed, hang in there. Difficult to know what to say but it appears many people have one and live without problems without even knowing they’ve had it. I hope for the best for you.

    • Hi Ronny, Thanks…there’s not a lot to say. ๐Ÿ™‚ Such is life, right? We just need to keep our heads up and fight. ๐Ÿ™‚ As I learn more, I will share.

  2. I like your attitude about it Ed. Having scans because of the carcinoid discovered an unrelated urinary bladder cancer in me. It actually was a good thing, finding it early saved a me from a lot of problems. What we all must do is “keep on, keeping on”.

  3. hate to hear this Ed, but i am very glad you and I have become friends and you are such a help to give us all courage to keep fighting, Love your sweet stories about David, The best medicine God gave you. <3 <3 <3 to you and Lisa and the 8 year old treasure, ๐Ÿ™‚

    • Thanks, Betty! I value your friendship too!!! ๐Ÿ™‚ I’ve always heard that saying “don’t curse the darkness…light a candle”. So, this is me trying to light my tiny candle. ๐Ÿ˜€

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