It’s everyone’s worst nightmare: You go to the doctor for something that seems relatively minor, only to discover it’s a symptom of a much bigger issue. Well, over on Quora, people were discussing their own experiences of this exact scenario. Here are some of their stories.
1.“Years ago, I was eating a burger when suddenly, after taking a bite, I could no longer open my mouth. I was terrified and had no idea what had happened. I’ve dealt with TMJ pain for many years and assumed it had to be just that. Maybe a warm compress and massaging my jaw would unlock my mouth. Nothing seemed to work, and I could only fit about the size of my pinky in my mouth. I couldn’t even fit a spoon in. So I made an appointment with an oral surgeon to figure out what was happening…”
“…He did a physical exam and immediately knew it must be an issue with the disc in my jaw joint. He scheduled an urgent surgery to get it put back in but ordered an MRI to go over, just to be certain. The morning of surgery, he met with me briefly before it was time to go under. He said, ‘We got your results back from the MRI, and there are two things I need to go over with you.’ First, they confirmed the disc in my jaw slipped out and did not fit back in when I took that bite out of my burger. So, surgery was definitely needed to correct the issue.
Secondly, he said, ‘I need you to see a neurologist. We found a mass in your brain. I can’t diagnose this for you. Take a copy of your MRI to get this checked out as soon as possible.’ At that moment, which is all I really had to process what he said, my entire world just stopped. This was the most unexpected and terrifying news to receive just minutes before I was to go under for jaw surgery. I will never forget the way I felt. It turned out to be a large cyst wedged in between the fossas of the left temporal lobe of my brain. Something my doctors closely monitor but are unable to remove at the moment. It still makes me anxious whenever I think about it, especially since it’s still there and growing gradually each year.”
—Sophia Parveen
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2.“When I was 35 years old, I noticed a red splotch on my right breast after I got out of the shower one morning. I didn’t give it much thought until it didn’t go away after a few days and started swelling. I went to my doctor, and she thought that I had mastitis and prescribed an antibiotic. It still wouldn’t disappear, so she prescribed a second course…”
“…One day, I did an internet search for ‘red spot on breast,’ and the first thing that came up was a webpage about inflammatory breast cancer. It was very rare, but I knew when I read the symptoms. I went back to my doctor, and she sent me to a breast specialist, who immediately scheduled a biopsy. As it turned out, I had stage three inflammatory breast cancer, which is an extremely aggressive and fast-spreading cancer with a 45% survival rate. That was 12 years ago, and my surgery, chemo, and radiation were successful. The best advice I can offer everyone is to trust your gut and advocate for yourself.”
—Katy L.
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3.“My sister experienced constipation a few years back. After about nine days of no bowel movements and her being very uncomfortable, we took her to urgent care. They did an x-ray and told us to go to the ER because she had a bowel obstruction. We took her to the ER, where they did a CT scan and blood work. We were told a couple of hours later that it was a large mass in her colon that was completely obstructing her bowels. They admitted her and scheduled a colonoscopy the next day for a biopsy…”
“…After the colonoscopy, the doctor came out to say it was a tumor and most likely cancerous. She was diagnosed at age 40 with Stage II A colon cancer, with no prior symptoms other than constipation. She had surgery to remove the tumor, and after 12 rounds of chemo, she was in remission. Fast forward to May 2018, my mom started experiencing pain in the area of her gall bladder.
I rushed her to the hospital, and they said yes, she had gallstones trying to pass, and they needed to do surgery the next day to remove the gallbladder. After surgery, the surgeon came up to me with pictures and a grim look on his face. In removing her gall bladder, they found that her liver was completely cirrhotic. She had advanced-stage liver cirrhosis and was never a drinker.
Looking back, the only prior symptom she had was itching on her back, belly, and arms, which we found was caused by increased bilirubin levels. Her doctor just prescribed antihistamines and didn’t think to check her liver. If her gallbladder had not flared up, no telling when we would have figured it out. After she left the hospital, we went to a specialist who told us her only option was a liver transplant. They did not allow living donors where we live, so she remained on the donor list. Unfortunately, she passed away in September 2022 after never receiving a transplant.”
—Missy D.
4.“I had a shooting pain in my cheek. Of course, I thought it was my teeth. I went to the dentist. They pulled my wisdom teeth. Gave me painkillers and sent me home. As soon as the painkillers were all taken and gone. The pain came back worse than ever. I went to my doctor…”
“…I was put through a battery of tests. After seeing a neurologist, I finally had a diagnosis. Trigeminal neuralgia is damage to the nerve that controls movement in your face. After trying medicine after medicine, they finally put me on an anticonvulsant. I was on this medicine for a year in the hopes that the damage was temporary. It is not: this is the rest of my life.”
—Jessica V.
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5.“I had been transferred to a new city by my job. I was traveling weekly for them, so I didn’t have an office where I could meet people. It was tough, and I started struggling at work, missing deadlines, and not doing as well as I had previously. My parents talked me into scheduling an appointment with a PCP so they could refer me to a therapist…”
“I picked a doctor online and made an appointment. He was a nice old man on the verge of retirement. He asked me many questions and then said something that was, at the time, pretty confusing. He said he would refer me to a therapist, but in the meantime, he ordered an MRI, just to rule out anything else.
I recall thinking an MRI was pretty silly, but I did it anyway. The MRI showed a large tumor in my brain. I had a craniotomy and proton radiation very quickly. That doctor, in his infinite wisdom, saved my life. My dad later went back to shake his hand and say thank you. When asked what it was that he saw to order the MRI, he said there was something in the way I described myself and what was going on that made him think it was more than depression. I think of him often. I know he could have taken what I was saying at face value and sent me to see a therapist. Instead, he read something in between what I was saying. It’s still a mystery today.”
—Sarah G.
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6.“I was seen for an annual physical this April and talked with my doc about tinnitus and a ‘full feeling’ with altered hearing in my right ear. She had me see an ENT who had an audiogram done. I had what they call an asymmetric hearing loss. They wanted me to see a neurologist, which I did in early June…”
“…He wanted me to have a brain MRI, which I did about two weeks ago. During the interim, I couldn’t stand the suspense, so I went on ‘Dr. Google’ and became convinced I had a benign brain tumor. I don’t blame you if you shake your head or laugh. I had an MRI, and they found that all the functional parts of my hearing were normal. But, the radiologist discovered that I had had an ‘acute lacunar infarct,’ otherwise known as a stroke.
I was shocked because, since age 52 (20 years ago), I had eaten very healthfully, etc. Even though I had a family history, I thought my lifestyle protected me. I saw the neurologist this past Wednesday, and he confirmed the radiologist’s findings. The doctor discovered I had dangerously high blood pressure. I am now on two high-blood pressure meds and a statin. I have three more tests upcoming: an echocardiogram, a CT angiogram, and a 14-day remote heart monitoring. I am so very grateful that the neurologist ordered the brain MRI. Otherwise, I might not have known until I died from a massive stroke or heart attack.”
—Mary W.
7.“During the first half of 2022, I noticed that my stomach would get bloated fairly often. It would come and go, so I assumed I might have had a gluten intolerance or something. I also experienced pain from time to time, but I had a gastric bypass in 2006, so it was not uncommon to have stomach pains if I ate too much or something I shouldn’t have. A few months went by, and my distended stomach became an almost daily thing. I looked like I was about seven months pregnant…
“…I was working an average of 60 hours per week, so it was hard to go to the doctor, but I finally did. My general practitioner took one look at my stomach, and I could see an instant change in her expression. She sent me for an immediate CAT scan and even called when I left her office to make sure I was going for my test. I had the scan and was told the radiologist would review it, and I would hear back in a day or so. Before I even got home from the scan, my doctor called me and told me they had discovered a large mass, and she had made me an appointment with a gynecological oncologist. At my appointment, my surgeon confirmed a large mass on my ovaries and scheduled me for a complete hysterectomy.
He told me there was no way to know if it was malignant until he opened me up. He sent me for the typical pre-surgical blood tests, where my tumor markers came back extremely high. Technically, all that meant was that my body was producing a substance that is found in cancerous tumors. I had surgery where I had an incision from my breast bone to my pubic bone. The mass was so large that he had to make a large incision to minimize the risk of it bursting and spilling any possible cancerous cells into my abdomen.
Surgery was a success, but they found two tumors, an 11-pound one on my right ovary and a two-pound tumor on my left ovary. The first thing I remember after surgery, before I even opened my eyes, was hearing my aunt tell me that it was benign. My recovery was a bit rough, but I thanked god every day that it wasn’t cancer.
As women, we tend to put ourselves and our health on the back burner so we can take care of others. I had almost an entire year of symptoms that I brushed off because I ‘was too busy.'”
—Cat R.
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8.“At age 34, I was in the best shape of my life: I was an avid gym goer looking good and working hard as new faculty head. I had a great social life with a work-hard, play-hard approach. My big vice was smoking. Having experienced several breast cysts, I was used to checking, so when I felt a bump, I went to GP, who referred me for a routine check…”
“…The consultant had a feel for it and made an ultrasound sound to be on the safe side. Halfway through, the chatty nurse and doctor went silent for just a beat, and I knew something was wrong. They said they needed to try to drain, and if they could not, they would do a biopsy. Breast biopsies aren’t fun, especially with bigger boobs; the consultant then requested a mammogram. Mammograms after a biopsy are even less fun. I knew in my bones by this stage that I was in trouble; I was called back in by a consultant exactly one week later and was diagnosed with stage two breast cancer. Four days later, I was in surgery. It was life-changing, but I’m now 56 and can’t thank the NHS enough.”
—Lucy J.
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9.“In the summer of 2022, I noticed a bump in my neck while shaving. I didn’t think much of it and just monitored the situation. It really wasn’t that noticeable to anyone, but it just felt out of the ordinary. By Christmas of 2022, I started to lose weight, and my friends mentioned it. I arranged an appointment with a doctor, which I’ve probably visited once in 30 years…”
“…I was always healthy and never smoked or took a hard drug in my life. I did like to tip the glass occasionally as my only outlet. I caught Covid in early January, so I didn’t see the doctor until around the 20th. She examined me and sent me off for a scan. After three months of scans, bloodwork, two biopsies, and visiting a few different doctors, it was finally determined that I had three cancerous tumors in my neck, which included one at the base of my tongue and also a spot on my lung. The diagnosis was especially troublesome because they didn’t know if it was two separate cancers: lung cancer that spread to my neck or throat cancer that spread to my lung.
Either way, the outcome did not look bright, and initially, they were going to give me chemo for a while and figured I’d be gone in a year and a half. I then received a call the next day or so, and my oncologist said they could try aggressive radiation and chemo over seven weeks, but it was still a one-in-ten shot I’d survive. I said okay. I had 35 radiation sessions on my neck, 30 on my lung, and six chemo visits to help it along.
Apparently, I was a record breaker for the amount of radiation dosages I was given. I had scans done, which revealed the spots were reducing. I was assured the radiation in my body would continue to work. I was put on immunotherapy as a maintenance routine, which I’ll do every four weeks for a year. I still have three to go. In January of the next year, I had more scans taken, and I was finally clear. I’ve continued to have checkups along the way.
This is terrific news, obviously, but not without side effects. For example, I have a consistent dry mouth because I don’t have enough saliva to break down food when I eat. I have not eaten a regular meal since this medical process began. I basically live on six Ensures a day. Also, I still have depleted energy and strength. There have been a few more setbacks, but I’m doing the best I can right now with a brighter future than before. I’m very thankful to still be here. This is all because of a little bump. Please get checked out if something feels strange to you.”
—Yu D.
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10.“It was in 2019 after three different antibiotics had failed to fully clear a respiratory infection, I was referred to have a chest X-ray. Nothing I hadn’t had before… I’d only just arrived home afterward when I had a text from the radiography department at the hospital asking me to phone ASAP regarding an X-ray. Long story short, the X-ray had revealed what appeared to be a three-centimeter stellate mass on my right lung…”
“…I needed to have a CT scan. I deferred making an appointment, wanting to speak with my GP first. My husband and I had a holiday booked; I wanted to enjoy that without the pending scan results. My GP told me that I could delay having the scan until after the holiday, but no longer. It seemed more than likely that the ‘mass’ on my lung was a tumor.
I was savvy enough to know that a mass of that size and nature wouldn’t be treatable. So, I talked it over with my husband and son, making it clear that I wouldn’t be accepting any chemotherapy were it to be offered. During our holiday, I pushed myself to achieve things that I’d been putting off for reasons of other health issues. As it turned out, the CT scan revealed that the ‘mass’ was, in fact, an extensive area of infection — which had already begun to lessen in volume since the X-ray revealed its presence. Thank goodness.”
—Margaret C.
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11.“I went to the ER with symptoms I believed were cardiac in nature. As a nurse, I knew that heart attacks in women do not always present with the classic signs. I was very lightheaded and short of breath, but I had no chest pain. All the heart markers were negative. I was feeling pretty good, just resting on the stretcher. That was until the doctor came in, pulled the stool up close to me, and put his hand over mine. Oh, fuck, I think. It turns out I had acute leukemia. Boy, did things start happening fast! I didn’t get home for 104 days. Eventually, I had a stem cell transplant, and here I am around seven years later, telling my story.”
—Loraine H.
12.“I spoke to my GP a few years ago bout ongoing heartburn, even though I take an acid suppressant medication. She suggested blood tests at first. Those showed raised red platelets, and with a family history of gastric cancers, she referred me for an endoscopy at the local hospital. From there on, it was a round of tests and scans, a biopsy, and a three-week wait for results. Six weeks after the initial doctor appointment, I was told (over the phone) that I have stage three non-Hodgkin’s lymphoma. It is incurable. I have it for the rest of my life, and I still haven’t fully wrapped my head around this fact.”
13.“I was being treated for 24/7 headaches with medications that caused me to be extremely thirsty. My doctor told me that I had low calcium and told me to take tablets and consume more foods containing calcium. Being the ‘smart’ person that I am, I decided to move to calcium-rich foods to quench my thirst. I drank one to two quarts of milk daily and calcium-fortified orange juice. I took TUMS for heartburn and ate ice cream, cottage cheese, and other foods that would boost my calcium levels. I began feeling sicker and sicker…”
“I asked my doctor to check my blood because I felt like I was dying. He poo-pooed me and said I was fine. My brain felt foggy, I had increased difficulty staying awake, and I was feeling weaker and weaker. I drove out to see my sister. Friends had to drive my car for the last leg of the journey. God only knows how I managed to drive the first 500 miles. I had nearly fallen asleep at the wheel numerous times and had pulled over to sleep too many times to count.
I had an appointment with my family doctor for my annual physical. By that time, I required a walker to get anywhere as I was unsteady on my feet. A few hours after I saw the doctor, I got an urgent call. ‘Get into the hospital, STAT! You are in kidney failure!’ I had Milk-alkali syndrome, which means too much calcium in my diet had damaged my kidneys. I was hospitalized for five days, and it took more than a year for my kidneys to recover. I was lucky. There was no permanent damage. Had my first doctor listened to me, the kidney failure would have been discovered in the very early stages.”
—Debba M.
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14.“At age 60, I felt run down and tired for a while, attributing it to age and insufficient exercise. I decided to check my blood pressure at home, and it was quite high despite the blood pressure medication I was taking, so I called my doctor’s office…”
“…They were concerned and told me to come into the office right away. My BP was still high in the doctor’s office, so my doctor sent me to the lab for a lot of blood work. That afternoon, I started getting texts with some of the results of the lab work, and I saw that I was anemic. Well, that explained a lot, and I figured I would need iron supplements. The following day, my doctor called me first thing.
She told me that she was admitting me to the hospital to fully diagnose what was going on with me. I was scared. Once in the hospital, I learned that I had kidney disease and was in kidney failure. I never saw that coming! I had to begin dialysis immediately, which made me ill and caused low blood pressure. I was on dialysis for seven months, with five months of home hemodialysis.
I felt ill and was exhausted all the time, with little appetite and unable to return to work. Both of my adult children offered to be tested to be living donors. My son was tested first (as he lives in the same city I do) and he was a match. I was extremely fortunate for this. My son truly saved my life, and I will forever be grateful for his sacrifice. My new kidney is working well, and my son is doing well too.”
—Gale L.
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15.“I went to my optometrist in March 2022 to get new glasses. I had a bit of blurred vision and thought I needed my prescription adjusted. My optometrist did a dilated exam and found I have ocular melanoma. A very rare and often deadly cancer. I had plaque radiation in April after the diagnosis was confirmed by an ocular oncologist. Who knew there even was such a thing? Now, I am under surveillance for metastasis as the genetic testing done on the tumor showed a 72% chance of metastasis within five years. There is no cure for metastasis, and you usually have less than six months unless it is found early enough to be surgically removed or have embolization.”
16.“My father-in-law went to the doctor for some mild chest pains, and to be tested as quickly as possible, the doctor sent him to the emergency room…”
“…It was for the best because while he felt fine, this turned into a cascade of increasingly worse diagnoses with each doctor he saw. He didn’t leave the hospital until he’d had an entire quadruple bypass surgery! He was only 60, physically fit, and youthful, but was 75% blocked up. He came out as the youngest bypass patient in the hospital but with a new lease on life and, a few months later, joined the rest of our family on a three-day trek through mountains where we topped out at about 15,000 feet above sea level, followed by a casual climb of another entire mountain on the spur of the moment. All because he thought he would probably be out of the doctor’s office after an hour!”
—Anne R.
17.“I had a sudden onset of debilitating headaches. I didn’t have any headaches until then, and I was barely functioning during an intense episode, so I went to my primary doctor. I’m grateful they took my concern seriously and ordered a CT scan. Before heading to the scan, the doctor said, ‘I know most people worry about a brain tumor, but this is probably nothing.’ While it was abnormal for me, I wasn’t considering a brain tumor. It was indeed a brain tumor. The surgeon said my headaches weren’t related, but my headaches have drastically improved since my craniotomy. I’m so grateful.”
18.“A week before lockdown in March 2020, I went for a scan after having a cough for weeks, and it was discovered that I had large tumors in both kidneys. Clear cell carcinomas. After a partial nephrectomy on the right kidney and a complete nephrectomy on the left, I thought the worst was over; unfortunately, at a follow-up this March, it was found to have already spread to my lymph nodes and lungs, so now I am undergoing targeted treatment in the hope of delaying the inevitable. With an expected life expectancy of 22 months, I am keeping everything crossed that I will be the exception to the facts 🤞.”
—David L.
If you’ve had a similar experience, we’d love to hear about it. Have you ever gone to the doctor for something seemingly minor that turned out to be significant? Tell us in the comments or in this anonymous form.
Note: Submissions have been edited for length and/or clarity.
