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Thread: My (long) story -- HIV, testicular cancer, ALS, colon cancer and oral cancer

  1. #1

    My (long) story -- HIV, testicular cancer, ALS, colon cancer and oral cancer

    Hi all. My HA started acting up again, and I saw anxietyzone is no more, so I figured I'd post here. I'll discuss each of my feared diseases separately so that people don't have to read this entire post if it gets too lengthy.


    The fear of being infected with HIV during my junior year of college is what kickstarted my HA. I remember seeing some type of advertisement to get tested for HIV, and I thought to myself, no need for that, I've always practiced safe sex. Then I remembered, there was that one time freshman year on the ski trip that I got drunk and may not have used a condom the entire time.

    I figured, huh, wonder what the symptoms are, and decided to google them. I remember seeing that mouth issues were a symptom. I've always had a geographic tongue, it usually changes daily, and I've always gotten canker sores on a regular basis, but neither bothered me. Until I read what was posted online.

    A few days later, I began developing a raised rash all over my body -- literally, everywhere. That was it, I diagnosed myself with HIV. I went to the university's health clinic to have the rash investigated and discuss my symptoms with the doctor, but I didn't want to make it obvious I though I had HIV. Thankfully, the doctor recognized my worry, and asked if I'd like to be tested, to which I agreed. He said he would call me in a few days with the results. Later that afternoon, he e-mailed me, and the only words I saw were "HIV negative." I was relieved.

    Testicular Cancer

    Fast forward a few years after graduating from college, I had just finished law school and was studying in my room for the bar exam. That was a dreadful time, I was alone in my room for 12 hours a day, reading and watching lectures online. And being able to use my degree was riding on one damn three day test. I just spent three years studying, living 2 hours away from my girlfriend and family, and it all rides on one damn test. I took a facebook break and I saw a Gofund me add for someone who was my age that had just been diagnosed with sage IV testicular cancer. He didn't know he had it until he was in so much pain that he went to the ER and was diagnosed.

    I thought, wow, that's horrible. He had kids and was married, and is now fighting for his life. So I did what any reasonable person would do (sarcasm) and began feeling my balls. I didn't feel any lumps, but the top of one did feel kind of odd, like there may be a little bump. Panic sunk in, I freaked out and immediately drove two hours home. Went to an urgent care clinic and told the doctor I had cancer. He told me a didn't, but offered to feel my balls for reassurance, and I obviously agreed. So there I stood, pants at my ankles with a doctor feeling my balls. I laugh now when I think of it. He said he didn't feel anything irregular. So I left it at that -- for a few hours.

    After leaving the doctor, I thought, he's wrong, I definitely have cancer. I began feeling my balls (so if that word offends anyone) constantly. Then the damn cord that is attached to my balls. I felt my balls so much, they swelled up, it hurt to sit. After the swelling went down, I would still get pain, but I found a post about epididymitis, it sounded legit, and that's what I chalked it up as, because I wasn't going back to the doctor. That was almost three years ago. I still get pain sometimes, but I really don't think about it much.


    Looking back, the summer that I studied for the bar exam and diagnosed myself with testicular cancer was a stressful time. After finishing that damn test, I began interviewing for jobs, including my dream job back home. I made the two hour drive twice in one week for two interviews. I received a call the following week offering me the job. I accepted, which meant I had to move everything out of my apartment in two days and move back home. I rented a truck and did it.

    It was Sunday, August 21, 2014. My fiancee and I were laying in bed, it was going to be a relaxing day because I started my new job on Monday. I felt a twitch in my upper abdomen. Didn't think much of it. It kept twitching, but I didn't pay attention, both my eyes had been twitching for the past two weeks, and a few days prior, my knee had this crazy spasm while I was watching TV. It was all nothing.

    We went to the mall, and while in a store, I got a bad sharp pain behind my right knee. Then a few minutes later the back of my right thigh began twitching constantly. I, like the reasonable person I am, began to Google. It wasn't bad at first, I saw some stuff about ALS, but I also read it could be a magnesium deficiency. I thought it was the latter and went to a walk in clinic for a blood test. I brought up ALS to the doctor, jokingly, he asked how old I was and then said with a laugh, you don't have ALS. A couple days later, I got an excited phone call that my blood test came back all within normal limits.

    That was it. I had it. I was going to die from ALS. My family and fiancee -- then girlfriend -- were going to watch me die a slow, painful death. I was twitching EVERYWHERE on my body. Constantly. 24/7! It was like popcorn popping all over my body. Little pops. Big ones that I could see. Vibrations. Hot spots that would last for days and weeks. Horrible joint pain in my hands. I became obsessed. I didn't have a GP, so I made an appointment with a new doctor. I went to my appointment with my mother, as I was driving her crazy, constantly checking my reflexes, strength, comparing the sizes of my arms and legs, etc.

    I didn't feel as though I was stressed or anxious at all. I've always held myself to a very high standard with respect to doing well in whatever I do. I graduated college and law school with honors. I was in the military and made it through bootcamp just fine. I felt as though I handled pressure extremely well.

    When I told the GP the events leading up to my twitching (studying for the bar, taking the test, moving in such a short time, etc.), she looked at me like a had three heads after telling her I wasn't stressed or anxious. She told me my twitching was stress and anxiety. She tested my strength and reflexes and told me I didn't have the big nasty. She said come back in two weeks before we order the $20K work up -- i.e., the neuro, EMG, etc.

    Well I continued to twitch. She continued to tell me I was fine. I thought about making my own neuro appointment. But I found others in a similar situation on Anxietyzone. So I read those posts and became obsessed with lifting weights. In a matter of four or five months, I went from 175 pounds to 205 pounds. I got pretty strong. I continued to twitch, especially at night when I was laying in my bed. I twitched all over, all the time.

    I still twitch. Not as much, maybe a few twitches a day and sometimes a hot spot here and there for a few days, especially in my triceps. But I figure I'd have more than twitching going on after more than two years if it was something serious so I don't stress about it anymore.

    My advice, ALS is a very dark hole. Don't go down that road.

    Colon Cancer

    While I was suffering my ALS fear, I wiped after having a bowl movement and there was some bright red blood on the toilet paper. I, you guessed it, Googled. I had colon cancer, for sure. I freaked. I had a followup with my GP for my ALS worries in a few weeks so I'd bring it up to her then. I continued to Google and thought, hey maybe it's a hemroid or fissure, it did burn after wiping sometimes and I had a hemroid in college. I told my GP and she said don't worry about it, it's a hemroid or fissure. So I stopped worrying. I still have bright red blood sometimes, especially when I poop a lot, so I chalk it up as having a hemroid or fissure. I figure if it was something more serious, I would know by now.

    Oral Cancer

    This is my current fear. Back in August of 2016, I was shaving and felt a bump on the right side of my neck. I thought, hmmm, let's see if there's the same bump on the other side. Nope, no bump on the left. I wasn't sick nor had I been sick recently. Sooooo, I Googled. I didn't freak out at first. I figured I'd give it a couple days and if it didn't go down, I'd make a doctor's appointment. Well, that lasted about two days. I read some stories of people finding bumps while shaving then being diagnosed with HPV oral cancer. I freaked. Went to an urgent care and was put on antibiotics and told to follow up with my doctor if it didn't go down in two weeks.

    Three days went by, it was still hard, I think somewhat moveable and maybe a little bigger than a pea. Everything I read online suggested I'd be referred to an ENT. So I cut out the middle man (my GP) and scheduled an appointment. The first time a called, they couldn't get me in until the middle of September, but I was scheduled to leave for training for work at the end of September, so they got me in sooner once they could tell I was concerned.

    Prior to going to my appointment, I started shining a flashlight in my mouth. The stories I read said cancer was usually found at the base of the tongue. I couldn't see any lumps, but there were these white spots at the back of my throat. And maybe my tongue was not geographic, but rather displaying precancerous lesions.

    I finally met the ENT. He was a nice guy. And of course my mother was there, because I was driving her crazy once again. He felt my neck very carefully and then looked in my mouth with a light. He asked if they did any test when I went to urgent care, and I said no. He knew I was anxious about this lump, so he said "it's just a lymph node, and it will be like that for a long time, but we'll do a CT with and without contrast just to be safe and then I'll have you come back in so we can go over the results, better yet I'll call you with the results and everything will be fine." My mom said what about the bumps in his throat, because of course I showed her. He said they were inclusion cysts and would be there for a while and are nothing to worry about.

    I went for my CT that Friday. It was the first CT I ever had. They hooked me up to an IV for the dye and put me through the machine. I thought they were only imaging my neck, but then the tech started taking images of my chest and had me holding my breath. I got so nervous. Was she seeing something? Has the cancer spread to my lungs? I was a mess. It was Friday and my doctor was gone for the day, so I had to wait the weekend for my results.

    The doctor called first thing Monday and said everything was clear, there were no growths and I was good to go. But he knew I was worried about it so he told me to make an appointment for 2 weeks out. I did, he spent a few minutes with me, said "where's this lump" felt my neck, told me the anatomy of my neck and said I was fine.

    I believed him. I didn't go online to try and read my CT report and find out how large my lymph node is. I went away for my work training and didn't think much about it. Sure enough, those cysts went away in the back of my throat.

    But after the new year, I decided to look in my mouth. it looks like a cyst or something is growing on my tonsil bed -- I got my tonsils removed when I was young. I freaked and have been checking my mouth all the time. I have, what I think to be, lymphoid tissue swollen in the back of my throat on both sides. Where my tonsils were looks weird, but I don't know how long they've been like that.

    So I've once again convinced myself I have oral cancer. Of course I read about a guy who had a CT scan and biopsy come back normal and he ended up having tonsil cancer even though he had his tonsils removed. I'm trying to stay positive, as I can't get to the ENT for 4 weeks. I'm still away at training for my job, so that keeps me busy most of the day.

    I'll post an update once I'm home and able to see the ENT.

  2. #2
    Join Date
    Jan 2017

    Re: My (long) story -- HIV, testicular cancer, ALS, colon cancer and oral cancer

    Phew, youve been through the wringer with your fears the past few years. It's no wonder with your profession. I have the same issue with anxiety though, I sometimes internalize it severely instead of projecting it outwardly. I think, "well I'm not anxious at all so why am I symptomatic?". And that's how bodily anxiety typically works. If we don't display it emotionally, we display it somatically. And when we start displaying it somatically, we lose our grip on our emotions and everything comes flooding out. I've never had fears of much else besides neurological disease (ms, als, brain tumor, etc) so I can relate to your whole twitch, google, freak scenario. I'm about a year and five months into my twitching brigade and for 8 months of that time I was on medication and my fears diminished significantly as did my symptoms. Now that I'm off the meds I'm back on the forums and swinging between rational thinking and absolute batsh*t crazy thinking.

    As for your current fear, I had a lump exactly where you describe years ago. My mom was actually the one that freaked out because it wasn't going away even though I didn't think twice about it, hah. I got dragged to the gp with her (family doc for the past 10+ years) and he felt it and checked my mouth and thoat and said nothing to worry about (which I of course didn't because the thought of cancer doesn't scare me as much as the thought of being disabled with a crippling neurological disease and dying slowly).

    After about a year or so it went away on its own. If I feel hard enough I can feel a bit of a remnant but it never developed into anything sinister. So I'm sure you're fine.
    What makes earth feel like hell is the expectation that it should feel like heaven.

  3. #3

    Re: My (long) story -- HIV, testicular cancer, ALS, colon cancer and oral cancer

    The ALS hole is such a dark place because there is no cure. One who has it is going to die. But, and I think you truly know this, you don't have it. There's no way. Your symptoms subsided while you were taking meds. That should be confirmation in and of itself. However, I know how you feel because it took me nearly 2 years to get over my ALS fear. And the first year of that was probably the most depressed/anxious I've ever been. I look back now and wish I would have reacted more logically.

  4. #4
    Join Date
    Jan 2017

    Re: My (long) story -- HIV, testicular cancer, ALS, colon cancer and oral cancer

    Quote Originally Posted by Gopennstate View Post
    The ALS hole is such a dark place because there is no cure. One who has it is going to die. But, and I think you truly know this, you don't have it. There's no way. Your symptoms subsided while you were taking meds. That should be confirmation in and of itself. However, I know how you feel because it took me nearly 2 years to get over my ALS fear. And the first year of that was probably the most depressed/anxious I've ever been. I look back now and wish I would have reacted more logically.
    Definitely agree. I'm glad I was on medication for 8 months of the first year with the fear because honestly I was to the point of contemplating ending it as I was convinced it was happening/about to happen. The thought of death has never frightened me in itself, the thought of suffering is on a completely different wavelength for me. The thing that really triggered this whole ordeal for me (as I had hypochondria bouts before but maybe lasting for two weeks at best) was witnessing my grandmother pass from pancreatic cancer. The last month of her fight she was bedridden and on morphine. I tried to prepare myself because I wanted to be by her side every step of the way but watching her pass absolutely destroyed me. I bottled a lot of it up after that night and months later the severe health anxiety came out to play.

    Yeah the fact that medication helped should be confirmation enough, but as I'm sure you know, there's always that ugly voice in the back of your mind saying "just wait" so you continue to compulsively check your body for atrophy/do strength tests/check your voice/check your reflexes and generally drive the people around you insane. Even though story after story, you hear "failure not feeling". 99% of the people's stories I've read has stated clearly that it began with a fall, the inability to pick up their phone, dropped a glass of water, began tripping constantly over nothing, etc. It doesn't matter that statistics state that it strikes between 40-60 typically. It doesn't matter that younger generations typically have at least one or two blood relatives with als and thus it's familial. It doesn't matter that the disease is RARE with less than 5,000 people getting diagnosed yearly in he states. Doesn't matter that it strikes men more than women. And it doesn't matter that it typically goes for athletes, military personnel, etc. Here I am, a 22 year old female with no family history of neurological diseases fearing the absolute worst.

    It's insanity. And judging by other people's experiences who have been through the als fear, it's probably the most gruesome type of hypochondria to have. Even though als patients know something is seriously wrong, we still guess with the anxiety and create these ridiculous timelines. At first it's six months, and if I'm fine I'll let it go. And then it's a year. And then it's a year and six months. And then it's two years just to be sure.

    That's why everyone who has this fear should just be permanently banned from google.
    What makes earth feel like hell is the expectation that it should feel like heaven.

  5. #5

    Re: My (long) story -- HIV, testicular cancer, ALS, colon cancer and oral cancer

    You missed to update the ENT result. Hope everything is fine at your end.

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