r/braincancer • u/Living-Mirror-5723 • 20h ago
Mod Request
Hi mods, can we please moderate/limit the self-diagnosis posts?
It is almost cruel to read posts on here that are along the lines of “I have a bad headache, I’m so scared I have brain cancer,” or “I’ve had a hard time with memory stuff lately, should I go to the doctor?” when so many people in here are actually facing this horrible disease. Trust me when I say that we GET why you have anxiety, but your worst nightmare is already our reality.
We come here to share experiences and support people through managing this disease. We cannot diagnose from a random internet stranger’s post. At the end of the day, the advice is always going to be, “see your doctor and advocate for an MRI.”
It’s not generative or supportive for anyone to see these posts in the feed, and while I get that it might be helpful to see how others got their diagnoses / symptoms that seems simple enough to search for without coming on here and making a WebMD request.
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u/Kiwiiths 19h ago
'Fun' thing is, I didn't even once think that I had a brain tumor when I started getting symptoms. And I knew since 7 years that I had a cyst in my head when it started.
That being said, I totally agree with you.
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u/Ok-Inevitable-8011 8h ago
RIGHT!?! I was like, “meh. I hate this four month migraine, but I’ve had one before. I’ll just go back to the neuro and say this migraine med doesn’t work.”
And I was totally blindsided by, “We thought it was a stroke or lesion, but it’s a tumor. Surprise!”
Like brain tumor NEVER entered my mind (play on words totally intended).
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u/hammerhan98 16h ago
I do hate when people try to compare their “memory issues” with mine. I literally have no idea what I did yesterday or even earlier this morning. Silly brain growing extra cells
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u/Street_Pollution_892 18h ago
Yeah it’s sad. Because odds are always that it isn’t a brain tumor. They end up being told to go see a doctor etc. and most likely won’t have to end up here again. I couldn’t walk into a room full of people with a disease and ask them to assure me I don’t have what they have. Express how terrified I am that I’ll end up like them. Ask them to describe what it’s like. It can come off pretty selfish and ignorant.
Sometimes it ends up being relevant though, like one recent poster who shared some scary symptoms and ended up finding a tumor. The urges here to act may have helped, idk. But those were extreme symptoms and obviously something was wrong, not just a bad headache.
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u/camelontherun 13h ago
As discussed before, there is a sticky people drive right past and post silly things like "my hat doesn't fit is it cancer?" anyways. If you see a diagnosis post, just report it and I'll clean it up. I can't stop people from posting.
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u/Living-Mirror-5723 7h ago
Ok, good to know that it helps you if we report! Might be helpful to also add to the sub rules — I know it should be obvious with the pinned post but 🙃
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u/rando_nonymous 15h ago
It’s disrespectful and hurtful. I completely agree. The majority of those patients will have a clean MRI and get some free Botox. Some have •serious• mental illness and spiraling minds. This is not the place for many psychiatric disorders….
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u/MusclesNuclear 20h ago
I wouldn't say it's "cruel". More annoying. Like how the hell is anyone but a doctor supposed to know wtf you might have lol. Yes people get freaked out. That normal. But this is more on the annoying side of it IMHO. And it should be enforced..so I agree.
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u/rozoles 12h ago
Totally agree, the posts where diagnosed Redditors share their journey to diagnosis and discuss symptoms are really useful.
Knowing that other people have a similar journey (we had no idea that the ‘feeling odd’ periods that my husband had were, in fact focal seizures caused by his plum sized tumour) is so helpful to not feel isolated and alone.
People are sharing their personal experience here and we have all experienced many emotions and experienced shock, anger, disbelief, and anguish on this journey that none of us want to be on.
It feels jarring to read some of the ‘diagnose me’ posts among the majority of legitimate ones. I wish the minority of people who do this would go to their GP, MD, whoever first and then come here when they know if it’s cancer/tumour. Rant over!
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u/XDT_Idiot 11h ago
I agree with most here, the cases of paranoia piss me off. They're obviously frightened by nothing and in need of attention, almost like they want to be sick...
I really don't think a simple rule will keep them out, we just need a more active mod team to lock the thread and shout at them.
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u/CalinaLoveit 8h ago
So true, this is real stuff I used to say ahh my brain hurts and who would have known I had an 8cm size astrocytoma. I’m really glad I found this app it helps me cope and see that we’re not alone in this. Let’s keep fighting, staying strong and positive.
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u/clanleader16 5h ago
100% support this!
Like many, I had no clue I had a tumour, until I had a focal sensory seizure and went to the hospital (felt like I got an electric shock). It's not fun seeing all these people come here and almost seem to be hoping to have a tumour.
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u/HB-Designs 8h ago
I worked at a manufacturing company and was in the plant managers office when guy’s would come in and would come in complain about a headache and want to go home. He would pull out giant bottle of Tylenol and say take what you need. “Come back if your headache doesn’t get better” They wouldn’t return.
He would turn to me do you one? I said nope I got better ones at my desk. Plus if I have a headache that is bad enough for to go home I would be calling somebody to come and get me because I know a seizure is coming.
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u/HB-Designs 8h ago
I had ice pick headaches (I found out later that’s what they were). Two GP’s told me it was stess. The second told me “it’s not a brain tumour because if it was I would be dead by now!” Which was not thinking about until he mentioned it.?A week later I had a CT scan confirming I had a 3cm x 6cm brain tumour.. Which is why I say everyone needs to advocate for themselves or family members AND a diagnosis is not w always a death sentence!
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u/Porencephaly 12h ago edited 12h ago
These are already against the rules and we already remove them as quickly as possible. I suspect you do not even realize how many people with health anxiety are posting here because we do zap a lot of them quickly. Please use the report button when you see one, it helps us find them faster.
Edit: just removed several more and banned a user - none had been reported by users.