It’s important to listen to your body when it’s trying to tell you something. Don’t just brush off that pain or ache if it keeps bothering you, it could be the difference between treatment and terminal.
Here, people who experienced cancer first hand share when they first realized something was terribly wrong. Check out the sources at the bottom for even more stories.
1. Not crying wolf.
When I was 15 I started feeling absolutely exhausted all the time. I used to fall asleep at my desk at school. My mum took me to the doctor, who tested me for anaemia and viral infections. Both tests came back clear. She refused to test me for anything else because she said I was too young to have anything else. So she said the only thing that could possibly be wrong with me was depression.
I got a second opinion from another doctor and he said the same thing. I begged them to listen to me, I knew there was something physically wrong with me but they said, diagnosis depression, case closed. Here are some antidepressants, now go away. My mother believed the doctors and said I was a malingerer and a hypochondriac. So I started taking the antidepressants but they didn’t make a blind bit of difference because I wasn’t depressed!
This went on for three years. I got more and more exhausted. I had to drop out of school because I was too tired to go. I slept for a lot of the day. My family were annoyed and thought I was just lazy. This went on until I was 18, when one day I noticed I had a huge lump in my neck. I went to the doctor. (My mother announced to her friends that I was a hypochondriac and implied that I was wasting the doctor’s time again). Anyway, the lump was in my thyroid. Finally they did some proper tests and it turned out I’d had thyroid cancer the whole time. Of course nobody apologized for doubting me.
2. A painful experience for someone so young.
First it was just like a flu. But it didn’t really get better. I still didn’t really want to eat and I was tired a lot. Then the pain started. Eventually I had horrible pain in my chest and back. I couldn’t sleep. The pain meds helped for about 4 or 5 hours so I still had to wait 3 more before I could take them again. It was pretty obvious that something was wrong.
I was 11 and had leukemia.
3. Hug your dads’ people.
My dad went out running with his usual group like he did every Saturday morning. He gets stung by a bee on the inside of his right leg. After finishing his run and driving home his right leg swells up rather worryingly and my mother convinces him to go to the doctor the next day.
Doctor tells him to keep the leg as immobile as possible while waiting for the swelling go down. If it hadn’t gone down by Thursday, come back for more checks. Thursday rolls around and if anything the swelling has gotten worse so he’s goes to the GP for more checks. GP gets suspicious, sends him to the hospital for even more tests which finally reveal what’s going on: He’s got cancer in the lymph nodes located at the top of both legs. The growth of the cancer in the nodes combined with the normal swelling of the bee sting to cause the swelling in his legs. (Story continues…)
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If that bee hadn’t stung him the cancer probably would not have been detected until it had spread elsewhere and he’d probably be dead by now. Except he’s still alive and still asking for single malt Scotch every birthday, Father’s Day and Christmas.
4. Breaking the seal.
Frequent urination. As a 62 yo male (at the time), I thought nothing of getting up 4 or 5 times during the night to go pee. It wasn’t until a routine annual physical that I mentioned this in passing to my physician. Although I’ve had PSA (Prostate-specific antigen) exam annually since the age of about 50, this would be the first time a doctor had actually performed a DRE (digital rectal exam) also.
Long story short…DRE indicated enlarged prostate, PSA came back at 226 (from 0.4 the previous year). Within two days I was sitting in an Urologist’s office setting up appointment for CT scans, MRI’s, and in very short order a biopsy. Within the span of 10 days, I’d gone from a perfectly healthy (at least as far as I knew) 62 yo who was living large, to a stage 4 Prostate Cancer patient with no testicles (Androgen Derivation Therapy).
To say that it’s been a paradigm shift would be an massive understatement. Life without testosterone, for a male, has been worse than the spectre of cancer. Medically…I’m waiting to die from incurable cancer, physically…without testosterone. Yes, I’m still alive, but I’m not “me” anymore. I still struggle to get my head around that.
5. Mates look out for each other.
I found a lump on a testicle when having a bath. Went to the doctors to get it checked and was told it wasn’t anything to worry about. The doctor poked, prodded and squeezed them that much I struggled to walk back to my car it was that painful.
Told this story to my mates in the pub and something clicked with one of them as he went a bit quiet.. Next day he goes to the doctors, and by the end of the week he had one less testicle. Had a lump for ages which was cancerous, but luckily it hasn’t spread. Check your bollocks guys.
6. Listen to your loved ones.
My Daddy was just diagnosed with stage IV small cell lung cancer with mets to the bones, brain, and liver on October 22, 2015. It started it around June of last year with some numbness in his right arm and a terrible persistent cough. He was a lifelong smoker (he’s 58), and just chalked it up to a pinched nerve causing the arm pain and smoking causing the cough.
His numbness never subsided and he slowly started losing his appetite and then started spitting up blood here and there. I had been begging him to let me take him to the doctor. On October 22 he finally agreed, so weak he could hardly hold his head up. He thought maybe he had the flu. I took him to the emergency room and he was taken for a CT scan and when the ER doctor came in about 45 minutes after the scan with an ER nurse & shut the door I knew what he was going to say, though I didn’t know he was going to tell us that my dad was dying. (Story continues…)
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He has a huge tumor (as the doctor described) on his lower right lung which caused his lung to collapse, with the bone mets to his right arm, right rib cage, and T spine (causing the numbness in his arm), mets to his brain, and mets to his liver.
The doctor gave him 2 days to 2 weeks to live without treatment, and upwards of 6 months with chemo. He began chemo 10 days later while in the hospital (he was hospitalized for 13 days), and will go for his 6th treatment next week before they give him a little break. It will be 4 months since his diagnosis on the 22nd, and I take him to all of his appointments and I’m by his side through it all. He’s been a fighter and is dealing with his diagnosis better than I expected. Me on the other hand, well it’s the hardest thing I’ve ever had to deal with in my 28 years.
Don’t ignore your body, guys.
7. That’s my least favourite card game.
My doctor had me using fecal smear cards. My first colonoscopy was at age 62 and revealed a tumor that had existed for about 10 years. I had no symptoms, my fecal smears were fine and there were no anomalies in my blood protein readings.
In surgery 12″ of the large colon were removed. Because the cancer was noninflammatory, the speciman was kept and included in a study. I have no after effects from the section removal. It’s like I never had cancer, except for the lingering effects of the 6 months of chemo.
8. The elephant in the room.
My arm stopped straightening when I was 6 one day and it was incredibly painful, like screaming bloody murder if you touched it painful. My mom didn’t know if it was broken and the doctors thought it was Elephantiasis. Turned out to be cancer in my joint, they think neurofibrosarcoma.
It sucked, chemo, surgeries, the whole deal. It came back when I was 9 but I didn’t have to do chemo that time, just tons of radiation. 26 now and my arm still doesn’t straighten and I have a lot of scars but I’m alive.
9. Beating the odds.
I had Hodgkin’s Lymphoma about 4 years ago.. I started getting high temps about once week in a few month it was everyday. I sweat when I slept and lost about 40 pounds.
I was going to 3 different doctor and the kept mistreating me.. I should have gone earlier when I started getting fevers for no reason. By the time I was diagnosed I was given weeks to live.
10. Thanks doc.
Im a doctor so Ill list a few of the common symptoms. However, it’s important to keep in mind that any of these symptoms can be caused by a number of harmless things and conditions that arent cancer. (Story continues…)
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– Peeing blood: especially in the over 50y/o and smokers. might be caused by bladder/renal cancer.
– Defecating blood: Under 40 years old? Probably something else (mostly hemorrhoids, but might be colitis, still need a minor workup). Over 40 or family history of colon cancer? I’ll schedule your colonoscopy right away (routine colonoscopy for those over 50y/o is one of the few preventative diagnostics that actually saves lives, but I digress)
– Coughing blood. Do I need to say more? Especially in smokers over 50.
– Unexplained weight loss: this is a big one. I’m talking maybe 3kg in 3 months or so. Might also be caused by other scary stuff (tuberculosis, autoimmune comes to mind). You need to get checked asap.
– Lumps on your neck/axillae/breasts/testicles check that out now.
– Irregular moles. It’s a big topic, but basically that usually indicates melanoma.
– Pain on the same spot for weeks/months that is so severe wakes you up at night. That might be bone cancer/mets
– New onset diarrhea/obstipation in the elderly.
These are just a few. If you feel like somethings wrong you should probably go see a doctor instead of trying to diagnose yourself.
11. Make sure you find a real doctor.
I’ve currently got Hodgkin’s Lymphoma. First clue was a massive lump on my neck on my first day of University, but I reckon my first clue should have been the constant full body itching for six months.
Some retired crackpot doctor told me it was Insulin resistance and stopped me from getting diagnosed.
12. Don’t hang up when your body calls.
I began having symptoms of what I thought was depression…mood swings, irritability and severe fatigue. I had gone to the ER after having severe pain in the middle of my chest. They checked cardiac function and all was well. It was diagnosed as gastritis.
I was having episodes of what I thought was sleep apnea as well. I would wake up with my heart pounding and struggling to catch my breath. What was actually going on was I had a huge growth on my thyroid. The doctors didn’t realize how big until I had surgery. It was bigger than a man’s fist and had extended down into my chest. (Story continues…)
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The pain and apnea episodes were from the mass pressing on my esophagus and windpipe. A few days after surgery, my doctor called me on a weekend to let me know the mass was cancerous.
I was only 39 and had two young children. I did radiation therapy and have been on a high dose of Synthroid which helps act as a chemotherapy to keep the cancer from returning (and lets me function…the thyroid has a hand in so much health wise!)
I have been cancer free for five years. Tuesday is my birthday and my yearly follow up. I’m always nervous but continue to hope for the best!
13. Always be vigilant.
Around 14 years old I felt a small lump on my testicle but didn’t think anything of it. Years later getting a physical before boot camp the doctor told me my left testicle was considerably smaller than my right one, but said it wasn’t a big concern. Didn’t think about it for the next 4 years until I got out of the navy and decided to give it a feel and at this point it was rock hard and completely covered in lumps.
Got it checked out at the hospital a few days later, doctor said it was definitely cancerous and may have spread, so they did some tests but luckily it didn’t spread. A few days later they did surgery and removed the testicle. Now every few months I go and draw blood so they can monitor whether or not it has come back. In hindsight I should’ve not worried about whether the Navy would kick me out or not and just got it done while I had their health care. Check your testicles and be vigilant of any small lump or anything out of the ordinary.
14. Don’t let your dad work too hard.
Not me but my father. He had pain in his shoulder that kept getting worse and worse despite various doctors insisting that he was just stacking the woodpile too high or driving too much. Despite the exercises they told him to do the pain got worse and worse so that he could barely use his right arm.
It turns out he has prostate cancer. Apparently prostate cancer hits the bones when it spreads.
The first clue was a shooting pain that ran down the inside of my right leg, from the thigh down to my foot. The best way to describe it was it feeling similar to an electric shock. My leg swelled up to twice it’s normal size.
I spent the next couple of months in and out of both my local GP surgery and A&E ( a few times my leg turned bluish/ purple) and was turned away with them citing that I had pulled a muscle and needed to rest and elevate. A trainee nurse recommended to my GP that I have a blood test and they called me back to say it looked as if I had DVT ( a follow up ultrasound confirmed ‘globular masses’ in the thigh). I started treatment on warfarin/ heparin and soon the swelling began to recede. That’s when I noticed a golfball sized lump on the inside of my thigh. (Story continues…)
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Cue an MRI and biopsy which revealed I had a leiomyosarcoma which had originated from the femoral vein. The ‘electric shock’ was the moment the tumour had constricted the vein to such a point that blood wasn’t flowing through normally anymore.
I had surgery to remove the tumour and graft a new vein. Almost lost my leg twice due to clotting and a subsequent e coli infection. Sadly, by the time the cancer had been confirmed through scans they had also noticed a ‘nodule’ on one of my lungs.
This was in July 2013 and since then I’ve had metastases in my scalp (removed with rotational scalp flap), lungs ( treated with doxyrubicin/ ifosfamide and currently trabectedin), liver, latimer dorsi and ribcage (three ribs partially removed). Still here though!
The only real ‘advice’ I could give, is to never allow yourself to be brushed off, like I did for a while. I’ll never truly know how much time I had before things had actually spread, but, maybe if I’d been a bit more ‘demanding’ when it came to my GP and the A&E department, I could have avoided some of this!
16. The first rule is: DON’T PANIC.
I have Lynch Syndrome. It is a genetic predisposition towards certain cancers: bowel, kidney, bladder, ovarian and endometrial are the big ones, but there are bunch of less-frequently seen ones, too. It means that you get more frequent cancers starting at a much younger age because your body lacks the ability to repair mutated cells in the way that other peoples bodies do. It is basically the cancer equivalent of having no immune system.
I am a relatively young woman, but so far, I have had cancer twice. As a matter of fact, I am writing this from bed as I recover from surgery for colon cancer – about 20 years before they would have even started to check otherwise.
In hindsight, my first clue should have been a family history of these types of cancers. It is a dominant genetic trait and you have a 50% chance of inheriting if one of your parents have it. So, If you have 2 or more first degree relatives (parents, grandparents, aunts, uncles, siblings) who have had any of these cancers – or breast cancer, have yourself checked out for cancer genes, even if you have no symptoms.
Some other things that should have been red flags for me:
FOR FEMALE REPRODUCTIVE CANCERS:
- Frequent bleeding and/or pain after sex. Occasional is fine. But more often than not? Something is wrong. For me, it was cancer – not the mere, ah, enthusiasm I initially thought. Get a pap smear.
- A change in menstruation. If your period increases drastically in terms of volume of flow, frequency, length and/or pain level, and there are no other reasons, have it checked out.
- A significant change in your personal (vaginal) chemistry. It doesnt have to be horrible, and it could be several things, so dont panic. But if you have ruled out pregnancy, yeast- and urinary infections, just have your OBGYN look into things.
- In light of these other things, long term (we are talking months here) abdominal pain and constant fatigue. When your body is busy growing a tumor that is actively trying to kill you, it doesnt have the energy for a whole lot else.
- If you have a combination of any 3 or more of these five things simultaneously over a period of months, get thee to a doctor, STAT.
(For the record, I had all of them and cancer. Dont panic too much if you have a few, but have it checked out anyway, it could be that something else is wrong – but something is definitely wrong. All at the same time is a HUGE red flag though.)
FOR GI CANCERS:
- Blood in the stool. It could be bright red, it could be dark. It could be tarry and sparse, or it could fill the bowl. Get this checked out immediately. It may be that you have ulcers, or colitis, or even just hemorrhoids, so dont freak out TOO much. But DO go to the doctor without passing go or collecting $200.
- A dramatic change in bathroom habits. You are usually a twice a day type of person after big meals but you are now popping laxatives like breath mints? You usually enjoy a nice leisurely poop but lately it has been that you need to run to the bathroom 4 or 5 times a day? And it has been months of this without a significant corresponding change in diet? Yeah – to the doctor with you!
- Change in appetite, and/or weight loss without trying. This might manifest as getting full more quickly than you used to, and then being hungry again soon after. It could also manifest as nausea. If you feel like you are always hungry but cant eat, you probably have some sort of problem. Have it checked out.
- Again, long term (over a month) abdominal pain – and general exhaustion.
- If you have a combination of any 2 of these things, RUN to the doctor. If you have a combination of any one of these things plus the family history, call your doctor now. I am serious. Call them right now. Your GP will do fine.
Dont panic. Any one or two of these things in the same list is probably not cancer. It could be something is wrong, but not necessarily cancer. But once you are checking off all the boxes, you might have something truly serious to worry about. Have it checked out.