View Full Version : How can you possibly calm down when cancer forums exist?
TW if you have anxiety over swollen lymph nodes
My stupid health anxiety is leading me to read pages of cancer forums about swollen lymphnodes and I'm reading things that relate to me exactly.
"Most bloodwork/chest X-rays come back clear with lymphoma"
"I had a 2cm lymphnode and did some scans and found out I had lymphoma"
"Everything came back clean until I had a biopsy"
and there is so much more where that comes from :(
I shouldn't be reading those forums since I'm not a cancer paitent and I know they aren't designed for me, but for some god damn reason I can't stop myself. It's frightening to know that those people had what I have and they actually had the god-awful disease.
I've only had bloodwork and a chest Xray so far to assess the swollen node in my prosterior cervical region (it is swollen because I can even see it pop out of my neck when I twist my neck to the side).
It honestly meets the charactistics of a lymphoma node since its: rubbery, firm and moveable. :weep:
I'm going to the Dr's on monday to collect my results and (I know it's a clear report otherwise they would have called) I really want futher scans or a biopsy. I don't think it's unjustfied to ask since I have noticed this thing in my neck for about six weeks and it's possible it's been there longer and shows no signs of going down.
To me it almost feels a couple mm's larger which is terrifying.
I honestly don't want to annoy anyone with this post, because I know I'm annoying my family members and the people around me but the fear is so awful.
TheGroundhog
24-01-17, 11:18
I shouldn't be reading those forums since I'm not a cancer paitent and I know they aren't designed for me, but for some god damn reason I can't stop myself.
Then stop, you can stop, you can do anything, ban yourself now, everyday you don't go on, put a pound (or a fiver ;) ) in a jar, when the jar is full buy yourself something great for being so awesome. Don't touch what ever it is you are poking, if the Dr says it is all clear, then leave it the hell alone, don't ask for more tests. Then check it in two months, if you think it's grown by then, go back, in the meantime, hands off, no checking, no forums.
Googling is the poison of us phobics, and Google is like a black mamba. It will bite you right between the eyes as soon as you open your browser and type the dreaded symptoms inside the box. Once the venom is inside your brain, nothing will drain it out. You'll remember vividly all these grim and sinister things read on the websites. They all are riddled with the C word anyway, and now that you've picked up the dark articles you'll have to pay them all.
Don't google. Ever.
I can't stop myself.
Well until you can stop...
BrokenGirl
24-01-17, 12:12
You MUST stay away from google and ABSOLUTELY MUST stay away from those cancer forums. You can't go back now and unread what you've read, but just remember that the signs and symptoms of most serious illnesses are also the signs and symptoms of many many less serious and minor conditions. But you'll only read about the horror outcomes on google and especially on those forums.
Talk to your doctor on Monday, but if he's happy that everything is ok then accept that and move on. Always remember when you read one or two lines on google, that is not the full story. It's only a very small part of it.
Please stay away from google. We've all been there and it's the same diagnosis it gives us all.........
You MUST stay away from google and ABSOLUTELY MUST stay away from those cancer forums. You can't go back now and unread what you've read, but just remember that the signs and symptoms of most serious illnesses are also the signs and symptoms of many many less serious and minor conditions. But you'll only read about the horror outcomes on google and especially on those forums.
Talk to your doctor on Monday, but if he's happy that everything is ok then accept that and move on. Always remember when you read one or two lines on google, that is not the full story. It's only a very small part of it.
Please stay away from google. We've all been there and it's the same diagnosis it gives us all.........
This is very true, maybe those people had something else that they haven't stated or maybe they were extremely unlucky, I don't know. All I know is those forums just give horrid images and feelings. :weep:
How do you jump from looking up symptoms on Google to joining a cancer sufferers forum? When you visit the forums do you just read what they are discussing or do you join in? Do you ask for reassurance from people who actually have, or have had cancer? I find that disrespectful to be honest if you know you don't have it, to be expecting people who are coping with cancer to make you feel better about your health anxiety. Is an anxiety forum such as this one not enough? If you can't stop doing this from an anxiety point of view, then please try to stay away from a moral one.
ISB x
I haven't joined a forum and I haven't joined any discussions, I've only read the threads and people talking about their early signs of the cancer.
I don't think it's disrespectful because I don't know I don't have it, I'm still in a process of getting this lymph node checked out and I haven't got my reports back yet anyway.
How do you jump from looking up symptoms on Google to joining a cancer sufferers forum?
I haven't joined any but to answer this question, it's because of severe anxiety.
What's even worse than reading is joining those forums and posting your fears looking for reassurance. As a survivor, I find it disrespectful. There are a number of current posts on a cancer forum I belong to that are clearly HA sufferers one of whom I believe is a member here based on the content of the post.
The question is: How can you possibly calm down when cancer forums exist?
The simple answer is not to read them... "I can't stop myself" is not an excuse for doing so. I always compare anxiety to a campfire. Think of that fire burning in your brain and body. You have a choice to either pour water or gasoline on it. What is the right thing to do? Using that analogy, are you saying you can't help pouring gasoline on that fire when the water would help you?
You can't expect to get better when you self sabotage yourself.
Mav.... please do see your doctor. Get your clear test results. But instead of insisting on further testing, insist on professional mental health intervention and help for the illness you do have.
Positive thoughts
it's because of severe anxiety.
Put your efforts into dealing with this rather than spending your time looking into something undiagnosed.
My stupid health anxiety is leading me to read pages of cancer forums
Pushing blame.
Don't let the health anxiety borrow your hands, and eyes.
What's even worse than reading is joining those forums and posting your fears looking for reassurance. As a survivor, I find it disrespectful. There are a number of current posts on a cancer forum I belong to that are clearly HA sufferers one of whom I believe is a member here based on the content of the post.
The question is: How can you possibly calm down when cancer forums exist?
The simple answer is not to read them... "I can't stop myself" is not an excuse for doing so. I always compare anxiety to a campfire. Think of that fire burning in your brain and body. You have a choice to either pour water or gasoline on it. What is the right thing to do? Using that analogy, are you saying you can't help pouring gasoline on that fire when the water would help you?
You can't expect to get better when you self sabotage yourself.
Mav.... please do see your doctor. Get your clear test results. But instead of insisting on further testing, insist on professional mental health intervention and help for the illness you do have.
Positive thoughts
I haven't posted anything on any lymphoma boards, I wouldn't do that. I have a friend who is currently going through treatment for Hodgkins Lymphoma and I have kept my mouth shut very tightly not to ask anymore questions than what she has already told me about her swollen lymph nodes before she was diagnosed. I don't want to add stress to her life.
Most of the reason why I'm here is because I can't openly talk about this with people in my real life, I have talked to my mum and now she won't even let me bring it up because she is tired of giving me reassurance.
But honestly, I can't tell you how much all this is causing me hurt and stress. I actually feel like crying writing this, because it's so easy for other people to move on after getting things checked but I feel borderline insane with worry.
I don't think reading those posts on the cancer forums is terrible because it makes me aware that sometimes things are missed, but that doesn't help my anxiety. I know I shouldn't do it and I won't do it anymore but it feels like im restrictingmyself of knowledge that the doctor hasn't told me :/.
I know I need help with the anxiety and I will be asking for it.
---------- Post added at 13:32 ---------- Previous post was at 13:30 ----------
Pushing blame.
Don't let the health anxiety borrow your hands, and eyes.
It's already stolen my sanity so I guess it doesn't metter to me if it takes my hands and eyes
---------- Post added at 13:41 ---------- Previous post was at 13:32 ----------
You said in your first post that you know you don't have it because its going to be a clear report, so my reply was based on that statement. Also if you aren't part of any discussions with cancer patients on their forums, and are just reading what they're saying, then I take back the 'morality' part of my reply. You didn't make that very clear sorry.
ISB x
I believe it will be clear but I also mentioned things I've read on those forums about things not being picked up in Chest X-rays and blood tests which is fueling the anxiety.
Thanks for taking it back but just to let you know, there are a lot of cancer forums online that have sections for people worried about their symptoms and awaiting results (I know breastcancer has one) so I don't think it's immoral to visit those sites and even speak to those people who have gone through the diagnosis process themselves, as long as it's done respectfully.
I did do that in the summer when I went to the breast clinic to have something checked out and I found people very kind and understanding and willing to offer advice on how to deal with the anxieties.
So I don't think your morality comment was justified to be completely honest but whatever, it's been said now.
---------- Post added at 13:42 ---------- Previous post was at 13:41 ----------
Put your efforts into dealing with this rather than spending your time looking into something undiagnosed.
I will, I know I do need help with it.
Ugh... not nice that you posted all those quotes from a cancer forum with NO trigger warning.
Started my day with a lightening bolt of fear... :-(
Ugh... not nice that you posted all those quotes from a cancer forum with NO trigger warning.
Started my day with a lightening bolt of fear... :-(
I'm sorry, I didn't mean too. I'm still new here and didn't even think once to put a trigger warning.
I'm sorry, do you know how I can I edit it so I don't frighten anyone else?
---------- Post added at 13:53 ---------- Previous post was at 13:51 ----------
Ugh... not nice that you posted all those quotes from a cancer forum with NO trigger warning.
Started my day with a lightening bolt of fear... :-(
I've done it, I'm really, REALLY sorry.
Guys easy on Mav. Sure do, he got it wrong with the cancer forums and stuff, but what I see here is someone dancing the oh so familiar panic dance, so I feel for him/her. Culpabilizing won't help. Let's resume our usual sympathy will we?
When people start posts with "I know it's wrong but..." and others reply to agree with them that's it's wrong, why do they then try to back track, and start defending why they do it?
You've admitted that people around you are tired of your constant reassurance seeking, and yes doing that here on nmp is completely the right thing to do, it's what the forum is for after all, but I stand by my disrespectful comment if people are reassurance seeking on cancer forums or any other forums like it. That's generally speaking and not just aimed at you.
ISB
I'm not defending it but I'm telling you why. Your obviously talking to me, I don't really know why you're being so judgemental because it's not helping anyone and it's certainly not helping me even though I clearly made this thread for some help. If you don't have anything helpful to say then just leave :/
---------- Post added at 14:40 ---------- Previous post was at 14:34 ----------
Guys easy on Mav. Sure do, he got it wrong with the cancer forums and stuff, but what I see here is someone dancing the oh so familiar panic dance, so I feel for him/her. Culpabilizing won't help. Let's resume our usual sympathy will we?
I can't be the only one here that has read a cancer forum thread?
I'm sure some people have joined them too and I can understand why they do it, it's almost impulsive. It's not okay but it happens.
Honestly, if these thoughts, feelings and actions could be controlled I wouldn't be on here right now posting this.
But thankyou for this post :) (I'm actually a girl lol).
I'd book in and see a therapist.
Then I guess you should aim your comments at the other members who have been saying the same things as I have...why single me out? Especially since I said posting on here is absolutely what you should be doing. I just don't agree with people with h/a using cancer forums and forums like it for reassurance and that's all I was saying...just as other people were also saying.
ISB
I'm not singling you out, your comments are directed at me though and I haven't even joined or posted on any cancer forums and then you're talking about "tough love" and what not.
It's not fair to be called immoral for something you haven't even done and then for you to talk about the tough love approach when I haven't even done anything wrong?
---------- Post added at 14:54 ---------- Previous post was at 14:49 ----------
And you're right Mav, you're not the only one who does it, and we say the same thing to them as we've said to you. So its not a personal attack just on you.
Okay, it just felt like it.
I haven't joined anything or posted anything because I know it's disrespectful, I just read an old thread earlier (it wasn't even on a forum, it was just a set of boxes if you know what I mean) this morning which really caused me a lot of anxitey. Thats all I've done.
I just came on here to ask how to deal with anxiety when you know that other people have gone through similar things but with a terrible result. That was my question and thats all I wanted to know. I didn't expect the focus on the cancer forums.
---------- Post added at 14:58 ---------- Previous post was at 14:54 ----------
I'd book in and see a therapist.
Honestly, I'm just going to say this and I don't mean to sound like I'm denying your advice.
But a therapist canot make the node go away and the only way to make the anxiety go away is for either the node to disappear or for it to be biopsied so I can get a 100% for sure answer.
Now I know that both of those are unlikely to happen anytime soon so I guess I have to just deal with the anxiety, suck it up and move on.
It's hard because I can't concentrate on other things and I have so many important exams coming up and it's all just adding stress to everything I'm already stressing about.
Let's resume our usual sympathy will we?
Tea and Sympathy (reassurance) is like a fix to an addict. It works for a little while but then you need more and more. There are several threads on that subject and all concur it's detrimental.
Yes, the forum exists so the sufferer can express their fears. It's comforting to know you're not the only one suffering with a certain fear or symptom, but the purpose IMO, is to find ways to heal as opposed to perpetuating the illness. So is it wrong to challenge the irrationality and encourage a healing path? Is it wrong to suggest things "not to do" or would something like "well try and not do that" suffice?
If you look at the post history it will reveal that this issue has been going on since November of last year and medical professionals as well as scientific medical tests have shown nothing of concern. And at 18yo, the chances are so incredibly slim as to not warrant another thought about it. In the last two months, if this were sinister, the OP would be pretty ill by now.
I believe that Mav believes there's something wrong. There's no denying that. BUT.... it's not a physical illness.
Positive thoughts
I really like this forum but I think there are aspects that are concerning me.
Yes, we all know that posting on genuine sufferers forums is not good, and this person hasnt done this.
Instead of demonising repeatedly why can't we empathise?
I think the ghosts of previous members loom large in here and its effecting how we assist newer posters.
Lets get back to what it was pre-Reb, where we challenge the OP with reasons why the thing they fear is not true.
This is a forum for people suffering from ANXIETY, whether thats health anxiety or not, they still have a mental illness. So lets assist with helping them challenge the things they fear, not the fact they fear things at all.
Exacly, she hasn't posted on the cancer forums, instead she has read posts as to find how the illness showed itself symptomewise and to find relief when the symptoms did not match hers. Not a big sin if you ask me and like jesus asked once: whoever did not sin is to cast the first stone.
Come on, we've all do crazy stuff as part of relieving strategies, browsing real sickness forums is not that crazy in comparison to other things.
A witch hunt? I give up I really do. Now deleting my posts.
Best wishes to you Mav
ISB
I apologise.
That was a poor choice of words. I will amend. I was not trying to offend or single anyone out.
Exacly, she hasn't posted on the cancer forums, instead she has read posts as to find how the illness showed itself symptomewise and to find relief when the symptoms did not match hers. Not a big sin if you ask me and like jesus asked once: whoever did not sin is to cast the first stone.
Come on, we've all do crazy stuff as part of relieving strategies, browsing real sickness forums is not that crazy in comparison to other things.
What she found though, was the opposite. The anxious mind has ways of connecting dots and making patterns. It zones in on anything that feeds the anxiety and utterly blocks out what should be reassuring. It's a perverse form of confirmation bias.
Reassurance seeking should always be advised against, especially if it's being sought off the Internet. The potential for misinformation spreading online is utterly ridiculous.
Joining cancer forums or even reading them can create a kind of empathy with the sufferers, whereby you start to relate to them and see yourself as a sufferer as a result of this.
These stories you read, they may well have happened, but for every one person who had some nasty illness that was missed, there are millions of others who have swollen lymph nodes and it turned out to be absolutely nothing. You obviously won't read those stories on any cancer forum, so you'll begin to think that misdiagnosis and things like that are commonplace. Again, perverse confirmation bias.
You can stop going on these forums, and in fact, you simply must. You will never allow yourself to accept that you're perfectly healthy if you keep filling your thoughts with stories from those that are genuinely ill.
Let's all get along guys. Shoot up the good vibes and karma.
What she found though, was the opposite. The anxious mind has ways of connecting dots and making patterns. It zones in on anything that feeds the anxiety and utterly blocks out what should be reassuring. It's a perverse form of confirmation bias.
Reassurance seeking should always be advised against, especially if it's being sought off the Internet. The potential for misinformation spreading online is utterly ridiculous.
Joining cancer forums or even reading them can create a kind of empathy with the sufferers, whereby you start to relate to them and see yourself as a sufferer as a result of this.
These stories you read, they may well have happened, but for every one person who had some nasty illness that was missed, there are millions of others who have swollen lymph nodes and it turned out to be absolutely nothing. You obviously won't read those stories on any cancer forum, so you'll begin to think that misdiagnosis and things like that are commonplace. Again, perverse confirmation bias.
You can stop going on these forums, and in fact, you simply must. You will never allow yourself to accept that you're perfectly healthy if you keep filling your thoughts with stories from those that are genuinely ill.
I can understand this but what I have in common with them is the swollen node. Mine feels above 1.5cm, around 2 cms which is pushing the "normal enlargement" size and it's also been there for over 6 weeks which isn't "normal" either.
I have had further tests such as a chest X-ray and blood test but I keep reading how these can be innacurate, but honestly how can I find peace when people say how innacurate these tests can be and how they only found out through a biopsy.
MyNameIsTerry
25-01-17, 05:24
May,
Do you realise biopsies aren't 100% accurate either? They can come back inconclusive. But a doctor knows that is a sign to find a test that will say yes or no for sure.
I'm not a HA sufferer, my anxiety takes different forms. Do you know how I react if my lymph nodes go up? I couldn't care less, I really couldn't. If I've had any possibility of infection near that area I know the possibility is high that it's connected and therefore not something to pursue unless other things start to appear.
My mum & dad react the same and neither have mental health issues.
There is no chance of any of the three of us reading cancer stories or viewing forums. We automatically assume the most likely, the colds, the infections, etc. There is another member with pain who has had a virus and she's very worried about cancer. My mum currently has had a virus and has so much back pain that she can hardly walk. Is she worried about cancer? Is she pursuing doctors, reading stories, etc? No, she had the GP out and he said it's an infection and now it's about treatment and whether followup is needed if she doesn't improve.
The only people I've ever come across in my life who worry too the point of viewing cancer forums have been HA people on here. That's a big indicator to me.
As for the moral side, well if cancer forums & charities are happy for undiagnosed people to post then that's their call and none of our business. In the case of HA people, I don't agree but it's not up to me if they want to deal with that. People outside of the HA community may also access them yet won't get the flack as they won't be on here.
But searching out information can mean you fall into the traps of mental health conditions where Cognitive Distortions are in play. You may search for matching information but fail to also search for that which disproves your opinion. Doctors don't do this, they've been trained to remember that this is bias and the undoing of scientific procedures.
---------- Post added at 05:24 ---------- Previous post was at 05:18 ----------
I really like this forum but I think there are aspects that are concerning me.
Yes, we all know that posting on genuine sufferers forums is not good, and this person hasnt done this.
Instead of demonising repeatedly why can't we empathise?
I think the ghosts of previous members loom large in here and its effecting how we assist newer posters.
Lets get back to what it was pre-Reb, where we challenge the OP with reasons why the thing they fear is not true.
This is a forum for people suffering from ANXIETY, whether thats health anxiety or not, they still have a mental illness. So lets assist with helping them challenge the things they fear, not the fact they fear things at all.
Excellent post, well said.
It was going on well before Reb. Despite the opinion by some that reassurance isn't right, we end up in the "direct vs. rude" trap as well as one person's enabling being another's challenging thinking. It only goes round & around and I've never see a general consensus and if there has been, it's obviously between subject to bias or all this stuff would never go on.
Reassurance is obviously still part of the problem but there is only do much a bunch of untrained, unqualified sufferers can deal with.
PanickyGuy
25-01-17, 08:35
Honestly, I'm just going to say this and I don't mean to sound like I'm denying your advice.
But a therapist canot make the node go away and the only way to make the anxiety go away is for either the node to disappear or for it to be biopsied so I can get a 100% for sure answer.
Now I know that both of those are unlikely to happen anytime soon so I guess I have to just deal with the anxiety, suck it up and move on.
It's hard because I can't concentrate on other things and I have so many important exams coming up and it's all just adding stress to everything I'm already stressing about.
Your mind must be running a 100 miles an hour then. I take it you're not on any anti-anxiety meds? If CBT is out of the question, although you have nothing to lose by having CBT, then I would definitely ask my doc for something to help with the anxiety and panic. At least you might be able to calm down some and concentrate on other things.
I feel for what you are going through right now. I've done that too, read cancer forums and thought I had this or that. Worried myself for months about it, but when time passes and I realize after so long that I should have of been in the hospital or worse, if I actually had any thing, logic sets in and the cancer fear fades away.
So keep in mind that you can't have cancer forever. After so many short months your immune system starts to deteriorate, you become tired and really weak and you start losing loads of weight to your almost skin and bones. So if you really had cancer, after 6 weeks you would probably start feeling really, really bad by now and couldn't get out and hardly do anything. Ask your doctor about how much time you would have, if you really had any kind of cancer. Educate yourself about cancer from a flesh and blood medical expert and stay away from Dr. Google and cancer forums.
GlassPinata
25-01-17, 09:16
I can't be the only one here that has read a cancer forum thread?
You are not.
I've done it too, many times, and personally I don't give two tiddlywinks what anybody here thinks of me because of it.
When I'm worried, I'll read any publicly accessible information I come across on the topic I'm worried about.
Not sure how it's "disrespectful" to read what cancer survivors publicly put out there. It's not private, it's public. And anyway, how would they ever even know who reads it?
A lot of it seems intended to be read by the undiagnosed. A lot of it has the tone of a cautionary tale. "My doctor kept assuring me it was nothing, and if I hadn't kept pushing for further testing, it wouldn't have been caught in time....ect". Or, "These were my symptoms. They are atypical. I didn't have the usual symptoms of this particular cancer, so even if you don't have those signs, you should press for further testing."
That said, is it HELPFUL to read this kind of stuff if you have health anxiety?
Not in the slightest. It's also not helpful to read scientific studies about your fear du jour on JAMA.
Does it make you an unethical, disrespectful person? I don't see how.
Are you even seeking reassurance per se, or are you only seeking knowledge and information, from any source possible?
Because that's pretty much what I'm doing, when I read cancer information online, from whatever source.
This probably doesnt apply to others here, but I personally am American, uninsured, and poor, and cannot go to any doctor, ever. And haven't been able to for years, and probably never will be able to, at least not in the foreseeable future. I have no access to medical care, something that a number of the non-American posters here seem not to even be able to comprehend.
So yes, I've read JAMA articles, I've read health boards, I've read cancer sites, I've read scientific articles and personal stories alike... and I no doubt will again. And again.
Will it help? Probably not. Will anything? Again; probably not.
But honestly, I will not sit here silently and allow people with the PRIVILEGE of access to medical care chide me, scold me, or insult me for perusing public information when I cannot and never will be able to see "a flesh and blood doctor", as someone on here called it. The obvious question, in my case, is "Why even bother learning about cancer, then? If you'd never be able to get treatment for it anyway, why would you even want to know if you had it? Why not just crawl into a hole and die quietly, like poor people are supposed to do in your country?"
Well, I guess it's because my own mind refuses to accept that my life is worthless, just because my society says it is.
Even though my country provides me- ME! A single parent who works 50 hours per week!- with no access to treatment or even diagnosis, for ANYTHING, from cancer to health anxiety- that does not stop me from seeking answers to the question of why I am suffering this much and whether anything can be done to alleviate it.
Hang in there, Mav.
@GlassPinata: topic aside now, I just want to say I'm startled regarding what some american members reveal as to their national health system. I'm still sorry for that other poster who was 2 grand short to achieve a simple endoscopy and had to let the exam go.
You're a good reminder that some of us european posters are privileged to have an almost limitless access to top notch medical care. Reminds me how I was shaking my head in disbelief while watching Breaking Bad. I was like: "how come a guy who is a teacher, aka middle-class individual, would be unable moneywise to pay for a lung cancer treatment without resorting to the Good Samaritans out there and donation campaigns...
@GlassPinata: topic aside now, I just want to say I'm startled regarding what some american members reveal as to their national health system. I'm still sorry for that other poster who was 2 grand short to achieve a simple endoscopy and had to let the exam go.
You're a good reminder that some of us european posters are privileged to have an almost limitless access to top notch medical care. Reminds me how I was shaking my head in disbelief while watching Breaking Bad. I was like: "how come a guy who is a teacher, aka middle-class individual, would be unable moneywise to pay for a lung cancer treatment without resorting to the Good Samaritans out there and donation campaigns...
This. Maybe that's why crystal meth isn't a big problem in the UK, our ill chemistry teachers don't need to pay for their medical bills ;)
Seriously though, we are very very lucky to have an NHS, as flawed and underfunded as it is at times, and the fact we have some politicians in the UK who want to end it show we elect the wrong type of people who have no idea how it would feel to not be able to afford these kind of things.
If you had never read any information about swollen lymph nodes would you have accepted your doctor's diagnosis? Because if you can answer even maybe to that question you will know if all of that researching has had a negative impact on your anxiety. I'm sure that amongst HA sufferers there are a small number who can read information about diseases and not file it away in the back of their mind. But for the majority it is probably the worst thing they can do. I remember telling my psychiatrist that I knew (anxiety sufferers always know) that I had a particular serious illness. He asked me what my symptoms were and when I told him he said "but they aren't the initial symptoms of that illness and I'm not going to tell you what they are because you'll start developing them". That's what googling does to HA sufferers. They read symptoms, file them away in their minds and then start to develop them. You don't even know it's happening because HA is insidious.
Not meaning to be rude here BUTTTT
Your post asking about how can you possibly calm down because cancer forums are ultimately causing your anxiety and that you can't "help" going on them and read all the stuff is really just a cop out. It is what HA peeps do to excuse themselves from feeding their disorder. I know OMG how can I say that to you? Because it is a fact. You are feeding your fears and defending it. Yes, I know you are scared and you have created a big, bad scary because of your minorly enlarged lymph nodes. Which has you acting on the lies your anxiety disorder is peddling to you. But, you DO have the power to get your fears under control. Your options are 1. Continue letting your anxiety drag you around like a rag doll OR 2. Start taking steps to getting your life back. Which FIRST is stop looking cancer stuff up. Talk about igniting a firestorm. AND yes, OH yes and Oh by golly it is hard work if you choose #2 but infinitely worth it.
Good luck and be well
I can understand this but what I have in common with them is the swollen node. Mine feels above 1.5cm, around 2 cms which is pushing the "normal enlargement" size and it's also been there for over 6 weeks which isn't "normal" either.
I have had further tests such as a chest X-ray and blood test but I keep reading how these can be innacurate, but honestly how can I find peace when people say how innacurate these tests can be and how they only found out through a biopsy.
As I said, for every one story you read about a missed or delayed diagnosis, there are literally millions of stories of people who had "swollen" nodes that were confirmed fine without biopsy. I personally had a blocked lymph node in my neck about ten years ago, the doctor told me what it was, I listened, and ten years later I'm still here.
The point is, if you indulge yourself in constant tales of these types of things being the absolute worst, which of course is exactly what you'll get on a cancer forum, then it only reaffirms the idea that this type of thing happens all the time. It really doesn't, it's a very rare thing, in actual fact.
I understand the need to get information, but what I cannot understand is that you clearly know that visiting these forums is detrimental to you, yet you keep doing it. The whole "I'm looking for information" thing really doesn't wash with me I'm afraid.
It's funny how you seem to be looking constantly at examples of the worst case scenario under the guise of "seeking information", yet you don't seem to be "seeking information" from people who have had the exact same as you and it turned out to be nothing. There's a lot of those stories, hell, there's probably thousands of them on this very site.
The question you posed is "how can you possibly calm down when cancer forums exist?" It's a strange question, really, because it implies that by them simply existing it's enough for you to be there. It's a bit like me asking "how can I remain calm when great white sharks exist?" Great white sharks are scary, they can eat you. That's terrifying really, but so long as I don't go for a swim with them I really don't need to worry about them.
I think you have hit the nail on the head Gary. For every person who has been misdiagnosed there are millions of others whose diagnoses was correct.
lol at your swimming with great whites example
Not sure how it's "disrespectful" to read what cancer survivors publicly put out there. It's not private, it's public.
GP, I'm the one who used the word "disrespectful" but I said so about those HA sufferers that actually join and post on cancer sites. It's a lot more prevalent than you think!
I first discovered this site due to HA sufferers posting on the Head and Neck cancer forums I was part of. As you might imagine, with all the node fears and other throat symptoms etc. there were quite a few! I followed a couple of members here (based on screen name and good 'ol Google) and after reading, decided to stay and try to help quell fears about OC and heart issues, both of which I'm a veteran. Admin on the cancer sites were patient only to a degree. When it became obvious that the person did not have cancer and was an anxiety sufferer, they were asked to leave and get help and some had to be banned. There was a member on AZ that was repeatedly banned from the ALS forums. There are actually a couple right now on one of the OC sites I belong to that are obvious HA sufferers. The posts could have been written by any of the members here (I believe one was).
So read all you want. If you want to add fuel to your fires, then that's your choice. I stand by what I said. If you're an HA sufferer, please don't join and post on the disease forums. It's disrespectful to those that are really suffering.
(brilliant post Sixpack and Gary, that analogy of the sharks is just spot on!)
Positive thoughts
MyNameIsTerry
25-01-17, 23:17
If you had never read any information about swollen lymph nodes would you have accepted your doctor's diagnosis? Because if you can answer even maybe to that question you will know if all of that researching has had a negative impact on your anxiety. I'm sure that amongst HA sufferers there are a small number who can read information about diseases and not file it away in the back of their mind. But for the majority it is probably the worst thing they can do. I remember telling my psychiatrist that I knew (anxiety sufferers always know) that I had a particular serious illness. He asked me what my symptoms were and when I told him he said "but they aren't the initial symptoms of that illness and I'm not going to tell you what they are because you'll start developing them". That's what googling does to HA sufferers. They read symptoms, file them away in their minds and then start to develop them. You don't even know it's happening because HA is insidious.
Yes, swajj and as a non HA sufferer this is what I see on threads all the time.
It was very important to me to learn about Cognitive Distortions. It explains where we are going wrong and getting your head to accept this is the start to forming ways to tackle it.
I've said it plenty of times, nothing much is wrong with Dr Google, it's those misinterpreting it. If a list of 100 problems comes back, 99 the level of the common cold and 1 being a cancer, HA people focus on the cancer and disregard the rest. Even if they don't disregard, they Minimise the 99 and Maximise the 1.
That's just how our survival instinct should work BUT just like with intrusive thoughts the HA sufferers place too much reaction on that one, often outlier possibility.
---------- Post added at 23:11 ---------- Previous post was at 23:03 ----------
Not meaning to be rude here BUTTTT
Your post asking about how can you possibly calm down because cancer forums are ultimately causing your anxiety and that you can't "help" going on them and read all the stuff is really just a cop out. It is what HA peeps do to excuse themselves from feeding their disorder. I know OMG how can I say that to you? Because it is a fact. You are feeding your fears and defending it. Yes, I know you are scared and you have created a big, bad scary because of your minorly enlarged lymph nodes. Which has you acting on the lies your anxiety disorder is peddling to you. But, you DO have the power to get your fears under control. Your options are 1. Continue letting your anxiety drag you around like a rag doll OR 2. Start taking steps to getting your life back. Which FIRST is stop looking cancer stuff up. Talk about igniting a firestorm. AND yes, OH yes and Oh by golly it is hard work if you choose #2 but infinitely worth it.
Good luck and be well
Safety behaviour or compulsion, it's part of the problem.
For OCD sufferers, it's not a cop out but merely part of the expected cycle and only a cop out when you refuse to accept it for what it is. I just see it as the cycle since there is no difference between any OCD according to WHO other than whether it leans towards obsession, compulsion or is mixed.
But then, it's hard to beat and fights you all the way. You go through stages and learn from them. Sometimes it includes kicking yourself and self pity so you can lash out. It's just pain though and whether you have a cold, a broken leg or anxiety, everyone can boil over. I remember going through a load of that and it's just part of the trap.
---------- Post added at 23:17 ---------- Previous post was at 23:11 ----------
You are not.
I've done it too, many times, and personally I don't give two tiddlywinks what anybody here thinks of me because of it.
When I'm worried, I'll read any publicly accessible information I come across on the topic I'm worried about.
Not sure how it's "disrespectful" to read what cancer survivors publicly put out there. It's not private, it's public. And anyway, how would they ever even know who reads it?
A lot of it seems intended to be read by the undiagnosed. A lot of it has the tone of a cautionary tale. "My doctor kept assuring me it was nothing, and if I hadn't kept pushing for further testing, it wouldn't have been caught in time....ect". Or, "These were my symptoms. They are atypical. I didn't have the usual symptoms of this particular cancer, so even if you don't have those signs, you should press for further testing."
That said, is it HELPFUL to read this kind of stuff if you have health anxiety?
Not in the slightest. It's also not helpful to read scientific studies about your fear du jour on JAMA.
Does it make you an unethical, disrespectful person? I don't see how.
Are you even seeking reassurance per se, or are you only seeking knowledge and information, from any source possible?
Because that's pretty much what I'm doing, when I read cancer information online, from whatever source.
This probably doesnt apply to others here, but I personally am American, uninsured, and poor, and cannot go to any doctor, ever. And haven't been able to for years, and probably never will be able to, at least not in the foreseeable future. I have no access to medical care, something that a number of the non-American posters here seem not to even be able to comprehend.
So yes, I've read JAMA articles, I've read health boards, I've read cancer sites, I've read scientific articles and personal stories alike... and I no doubt will again. And again.
Will it help? Probably not. Will anything? Again; probably not.
But honestly, I will not sit here silently and allow people with the PRIVILEGE of access to medical care chide me, scold me, or insult me for perusing public information when I cannot and never will be able to see "a flesh and blood doctor", as someone on here called it. The obvious question, in my case, is "Why even bother learning about cancer, then? If you'd never be able to get treatment for it anyway, why would you even want to know if you had it? Why not just crawl into a hole and die quietly, like poor people are supposed to do in your country?"
Well, I guess it's because my own mind refuses to accept that my life is worthless, just because my society says it is.
Even though my country provides me- ME! A single parent who works 50 hours per week!- with no access to treatment or even diagnosis, for ANYTHING, from cancer to health anxiety- that does not stop me from seeking answers to the question of why I am suffering this much and whether anything can be done to alleviate it.
Hang in there, Mav.
I feed for you GP, you are being failed by your government. And we have the NHS but sadly it fails many too in mental health and can be a bit of a lottery.
If you can use information the right way, it can be used for recovery. Therapists do it in Exposure Response Prevention (ERP), part of CBT, but they are there to guide & adapt the level of exposure and make the hierarchy achievable. Sadly, I doubt many can do it without that guidance.
But in your position you are extremely limited. So, the ACA hasn't worked for everyone struggling? We are led to believe people like you no longer exist in the US.
I hope you find the support you need.
GlassPinata
25-01-17, 23:45
But in your position you are extremely limited. So, the ACA hasn't worked for everyone struggling? We are led to believe people like you no longer exist in the US.
In my state (Texas) fully 25% of residents lack medical insurance. Nationwide, the figure is 18-20%.
We exist. We are mostly single parents and minorities. We insure our children, and forego insurance for ourselves, because we can't afford it.
We have been led to believe that your National Health Care system (and all such systems: Canada's, everyone's) are a failure, and that people die from long waits and lack of quality medical care.
But I've seen the real stats, because I know how to look for them, from reputable sources such as the World Health Organization: your average lifespans are longer than ours. Your infant and maternal mortality rates are lower than ours. Your cancer survival rates equal ours. Your system works, for everyone. Ours only works for the upper and middle classes, and even then, it doesn't work any better than yours, which includes everyone.
With Trump in office and dismantling Obamacare, I fear things will only get worse. :(
GP, I'm the one who used the word "disrespectful" but I said so about those HA sufferers that actually join and post on cancer sites. It's a lot more prevalent than you think!
I first discovered this site due to HA sufferers posting on the Head and Neck cancer forums I was part of. As you might imagine, with all the node fears and other throat symptoms etc. there were quite a few! I followed a couple of members here (based on screen name and good 'ol Google) and after reading, decided to stay and try to help quell fears about OC and heart issues, both of which I'm a veteran. Admin on the cancer sites were patient only to a degree. When it became obvious that the person did not have cancer and was an anxiety sufferer, they were asked to leave and get help and some had to be banned. There was a member on AZ that was repeatedly banned from the ALS forums. There are actually a couple right now on one of the OC sites I belong to that are obvious HA sufferers. The posts could have been written by any of the members here (I believe one was).
So read all you want. If you want to add fuel to your fires, then that's your choice. I stand by what I said. If you're an HA sufferer, please don't join and post on the disease forums. It's disrespectful to those that are really suffering.
(brilliant post Sixpack and Gary, that analogy of the sharks is just spot on!)
Positive thoughts
It is good of you to come here and try to quell the fears of those suffering from anxiety.
I agree that actually JOINING a cancer forum and begging for reassurance from members would be intrusive and impolite, and completely inappropriate.
However, simply reading threads on a cancer board seems harmless enough.... except to one's own mental health.
Anyone who has ever googled a symptom such as "enlarged lymph node" has probably read a cancer-board thread; they are some of the first items that pop up.
I was only objecting to the aggressive shaming of the thread-starter, who did not say that she'd actually joined a cancer board; only that she'd read some stuff on them.
I have too, and I bet anyone who has ever googled symptoms has also.
I agree it is not in the best interest of one's mental health to do this, though. And so does she. She started her thread with "I know I shouldn't be doing this..."
Anyway, best wishes to all.
Catherine S
26-01-17, 00:53
GP, you are correct in your perception about our national health service. It has its faults yes...mostly through bad management within each hospital, they are the people making the decisions about how to spend the funds given to them, so every hospital runs differently, but also that from the government, not enough is done to ensure the service carries on working.
Also, there are not enough working people these days to pay into the system, as the costs come out of our pay packets directly and the rest is subsidised but everybody is treated the same. Yes there can be long waiting times for hospital appointments and operations, however, the nhs is absolutely spot on when it comes to cancer screening and referals from local doctors, if they say its necessary to be seen asap, then the appointments are immediate and are dealt with. It's correct also to say there isn't enough money given to the mental health side of the nhs and this must change.
It has been said that the nhs isn't free, and this is correct in as much as we pay for it from our salaries, but anyone in the UK or from the EU member countries can walk into any doctor's surgery, clinic or hospital and be treated without having to pay up front, and this is part of the reason the service has become so overwhelmed. There has been talk about changing that and asking foreigners to pay to use the service, but i'm not sure if that will become official policy In the future, or even if some hospitals have started to do this already.
I live in Germany at the moment, and they have a half and half system. My husband pays partly through an insurance company...In our case its Alliance. ..from his salary every month, and the government top that up so we can access doctors and hospitals as we need to In the same way as in UK, except the waiting lists are alot shorter here, we wait only days or a weeks instead of months. Germany also has really good cancer clinics.
ISB x
GlassPinata
26-01-17, 00:56
http://www.stokesentinel.co.uk/immigration-row-why-is-my-american-wife-being-kicked-out-of-the-uk/story-30053450-detail/story.html
This is a good friend of mine.
She has married a UK citizen and moved to the UK.
She needs treatment for her heart.
But they are trying to make her leave. :(
Here in Texas, she will not receive the treatment she needs. :(
I was only objecting to the aggressive shaming of the thread-starter, who did not say that she'd actually joined a cancer board; only that she'd read some stuff on them.
No one shamed the OP nor actually accused her of posting. It was only suggested that joining and posting is discouraged and "disrespectful" to those truly suffering. Perhaps it's a matter of perception. Many that read also post whether they state it or not. I know this from experience (If I C&P'd a post from the H&N forum I mentioned, you would most likely recognize the poster as I have). No one "said" she posted. It was only stated not to take that step.
Positive thoughts
Catherine S
26-01-17, 01:09
What they are saying is she can have the spousal visa but has to apply for it from the states. I think it works the same the other way too? Why they can't let her apply while she's here Lord only knows, especially with her heart condition...that's bad.
ISB x
Capercrohnj
26-01-17, 02:01
GlassPinata it depends on where in Canada you live. I live in an area with a huge doctor shortage which means those of us without private insurance for a non doctor psychiatrist have to wait over a year to get in to a hospital psychiatrist (covered by healthcare). For other doctors everyone (even the rich) has to wait at least 6 months to get in with a specialist and more than half the population here doesn't have a family doctor. I know people with money going to the states because they can't wait any longer.
Sure if you live in Ontario you are well taken care of but those of us living in the have not provinces are not much better off than Americans.
GlassPinata
26-01-17, 02:37
GlassPinata it depends on where in Canada you live. I live in an area with a huge doctor shortage which means those of us without private insurance for a non doctor psychiatrist have to wait over a year to get in to a hospital psychiatrist (covered by healthcare). For other doctors everyone (even the rich) has to wait at least 6 months to get in with a specialist and more than half the population here doesn't have a family doctor. I know people with money going to the states because they can't wait any longer.
Sure if you live in Ontario you are well taken care of but those of us living in the have not provinces are not much better off than Americans.
Well, hell.... I just did my genealogy, and a century or two ago, most of my ancestors were living to 90 years old or more.... those who died early were either casualties of war or suicides (yes, I suspect mental health issues have run in my family for a looong time, lol. Lots of suicide).
I try to tell myself that as long as I eat healthy, work hard, and avoid bad habits, I will be okay. :)
Capercrohnj
26-01-17, 02:57
Well, hell.... I just did my genealogy, and a century or two ago, most of my ancestors were living to 90 years old or more.... those who died early were either casualties of war or suicides (yes, I suspect mental health issues have run in my family for a looong time, lol. Lots of suicide).
I try to tell myself that as long as I eat healthy, work hard, and avoid bad habits, I will be okay. :)
Same here! My grandparents lived to 90+ but I'm chronically ill (Crohn's) so here's hoping lol. I'm currently in the waiting to get in to see a surgeon pergatory ATM (3 months so far I hope to get a call during 2017).
MyNameIsTerry
26-01-17, 03:30
http://www.stokesentinel.co.uk/immigration-row-why-is-my-american-wife-being-kicked-out-of-the-uk/story-30053450-detail/story.html
This is a good friend of mine.
She has married a UK citizen and moved to the UK.
She needs treatment for her heart.
But they are trying to make her leave. :(
Here in Texas, she will not receive the treatment she needs. :(
Unfortunately that's how our visa system works. You can simply walk into the country from the EU but if you come through the non EU immigration route, it's tougher.
Whilst she is here the NHS will treat her the same as if she was born here. Doctors don't care about the money side and the NHS is well known to be behind in claiming money from other countries.
Are the NHS being put on hold in treating her in any way due to the ruling if the treatment would overlap the leaving date?
Please don't get upset over any reader comments on that site, it's only a local paper. It's largely morons & trolls posting. Immigration is an emotive subject here, and it's in this city (she lives in my city) largely caused by the EU FOM issue.
Here's a little trick that will help tons! Anytime you do a google search type:
"-cancer" after what your googling. This will eliminate any search results that have the word cancer in them. Enjoy.
MyNameIsTerry
26-01-17, 05:04
Here's a little trick that will help tons! Anytime you do a google search type:
"-cancer" after what your googling. This will eliminate any search results that have the word cancer in them. Enjoy.
If I typed "cancer -cancer" into Google, will I break the Internet? :yesyes:
If I typed "cancer -cancer" into Google, will I break the Internet? :yesyes:
haha, now I got to try that!!
You are not.
I've done it too, many times, and personally I don't give two tiddlywinks what anybody here thinks of me because of it.
When I'm worried, I'll read any publicly accessible information I come across on the topic I'm worried about.
Not sure how it's "disrespectful" to read what cancer survivors publicly put out there. It's not private, it's public. And anyway, how would they ever even know who reads it?
A lot of it seems intended to be read by the undiagnosed. A lot of it has the tone of a cautionary tale. "My doctor kept assuring me it was nothing, and if I hadn't kept pushing for further testing, it wouldn't have been caught in time....ect". Or, "These were my symptoms. They are atypical. I didn't have the usual symptoms of this particular cancer, so even if you don't have those signs, you should press for further testing."
That said, is it HELPFUL to read this kind of stuff if you have health anxiety?
Not in the slightest. It's also not helpful to read scientific studies about your fear du jour on JAMA.
Does it make you an unethical, disrespectful person? I don't see how.
Are you even seeking reassurance per se, or are you only seeking knowledge and information, from any source possible?
Because that's pretty much what I'm doing, when I read cancer information online, from whatever source.
This probably doesnt apply to others here, but I personally am American, uninsured, and poor, and cannot go to any doctor, ever. And haven't been able to for years, and probably never will be able to, at least not in the foreseeable future. I have no access to medical care, something that a number of the non-American posters here seem not to even be able to comprehend.
So yes, I've read JAMA articles, I've read health boards, I've read cancer sites, I've read scientific articles and personal stories alike... and I no doubt will again. And again.
Will it help? Probably not. Will anything? Again; probably not.
But honestly, I will not sit here silently and allow people with the PRIVILEGE of access to medical care chide me, scold me, or insult me for perusing public information when I cannot and never will be able to see "a flesh and blood doctor", as someone on here called it. The obvious question, in my case, is "Why even bother learning about cancer, then? If you'd never be able to get treatment for it anyway, why would you even want to know if you had it? Why not just crawl into a hole and die quietly, like poor people are supposed to do in your country?"
Well, I guess it's because my own mind refuses to accept that my life is worthless, just because my society says it is.
Even though my country provides me- ME! A single parent who works 50 hours per week!- with no access to treatment or even diagnosis, for ANYTHING, from cancer to health anxiety- that does not stop me from seeking answers to the question of why I am suffering this much and whether anything can be done to alleviate it.
Hang in there, Mav.
God bless you, hang in there too.
When I went in for my blood test a few weeks ago, and older lady sat next to me and she spent most of the wait complaining about the wait and how inadequate the NHS is. At first, I just nodded my head because I didn't feel like it was very respectful to tell her that she should appreciate what she has, since she was older than my own mother and my parents have told me to respect my elders.
But then eventually I got tired of hearing her moan, and it certainly wasn't helping my anxiety so I simply told her that "the wait doesn't bother me because I always know there is someone who has it worse than me or needs this more than me and yet here I am recieving this free health care" to which she agreed and it stopped her moaning for the next half an hour I was there.
Most of us here don't appreciate what we have and how much of a blessing it is to have top notch free health care and you really are a reminder of that. However, I do hope some of you health issues are resolved in the near future.
But anyway, thankyou and I know reading is definately not helping the health anxiety but I just have good days and bad. A good day was yesterday when for somereason I didn't feel the need for too much reassurance, today is not so good, hence why I am here right now.
---------- Post added at 15:51 ---------- Previous post was at 15:41 ----------
As I said, for every one story you read about a missed or delayed diagnosis, there are literally millions of stories of people who had "swollen" nodes that were confirmed fine without biopsy. I personally had a blocked lymph node in my neck about ten years ago, the doctor told me what it was, I listened, and ten years later I'm still here.
The point is, if you indulge yourself in constant tales of these types of things being the absolute worst, which of course is exactly what you'll get on a cancer forum, then it only reaffirms the idea that this type of thing happens all the time. It really doesn't, it's a very rare thing, in actual fact.
I understand the need to get information, but what I cannot understand is that you clearly know that visiting these forums is detrimental to you, yet you keep doing it. The whole "I'm looking for information" thing really doesn't wash with me I'm afraid.
It's funny how you seem to be looking constantly at examples of the worst case scenario under the guise of "seeking information", yet you don't seem to be "seeking information" from people who have had the exact same as you and it turned out to be nothing. There's a lot of those stories, hell, there's probably thousands of them on this very site.
The question you posed is "how can you possibly calm down when cancer forums exist?" It's a strange question, really, because it implies that by them simply existing it's enough for you to be there. It's a bit like me asking "how can I remain calm when great white sharks exist?" Great white sharks are scary, they can eat you. That's terrifying really, but so long as I don't go for a swim with them I really don't need to worry about them.
I guess if I was to think rationally, the cancer is rare and therefore the chance of misdiagnosis would be even rarer but it's tough when you have anxiety.
I don't really understand why I can't put all my faith into my Dr, probably because she "thinks" it's a reactive node isn't very reassuring for me. I'd rather she "knew" it was.
I'm going back on monday for the blood and cheast X-Ray reports so I'll wait and see what she tells me but I really hope to God it will put an end to some of the anxiety.
What I meant by "when cancer forums exist" isn't their actual existence that upsets me, but rather those horrid stories about having "a node pop up and it actually was malignant". Those stories with people who had no symptoms or very similar stories to myself. Those scare the life out of me. What if I'm incredibly unlucky and I have exactly that?
It's that thought process that lands me in turmoil. But I agree with what you've said, for some reason my brain has made me feel like a sufferer of that illness too and almost feel like I can "relate". I live like I'm ill already, taking everyday one by one and wondering if I will actually be here when people around me talk about their future plans. I live in fear tbh and it's worsened when I look in the mirror, twist my head and see that thing poke out. It's as if it reminds me I am and will be diagnosed as ill soon.
rather those horrid stories about having "a node pop up and it actually was malignant".
I'm one of those people Mav. The thing is, there was no mistaking it. It was a bit of a waiting game as we ruled out infection with unsuccessful antibiotic treatment but again, there was no mistaking it. It grew. You didn't have to feel for it or look for it. When I went to the ENT he flat out said before even doing the FNAB (fine needle aspiration biopsy) that it was cancer. He didn't know what type but he'd seen enough of it to know that it was.
What's happening with you is the polar opposite. There are no alarms going off (except the one you head due to anxiety). If I had gotten the all clears you have, I would have been jumping for joy! You really don't realize how fortunate you are.
Good luck and as always...
Positive thoughts
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