Please bear with me but I am so scared [Archive]

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paranoid-viking

22-05-17, 17:35

Yes, I know. Those of you who knows me in here knows what fear is biting me and keeped me trap in cycle of horror and fear: the fear of pancreatic cancer.
I know, that I hear that I have had something so long now that if it was PC I would be dead by now or much worse. But then, I am googling...yes I know I must not, but I can not and then....on websites promoting "awareness" I read the stories of patients telleing that they had symptoms, more or less mild who came and went for years before they were diagnosed like that woman who says that she had a repeating neck pain 10 months before diagnosis but had normal apetite and felt healthy when the diagnosis came. Or the one woth recurring pain under left rib for two years who came and went. And then I google discussion forums for patients and their families/friends; I am not posting just reading FYI and there is someone there telling how his mother had indegestion problems for 20 years - YES 20 YEARS - and was then diagnosed 20 years later and died three months later. WHAT AM I SUPPOSE TO BELIEVE???? It scares the hell out of me and I sit here in the dark crying fear that discomfort that I have had one and off is a sign of the dreaded PC, ant today my skin feels a bit burnde, I have a mild neck pain(I have been carrying a laptop a lot this weekend)and I feel a slight itching here and there, mostly in the eye. I am so scared. Crying and fearing that I have "silent symptoms" of the dreaded cancer equvalent to the plague.
So scary - can these stories be true? Is there a hope?

ktdid2000

22-05-17, 17:59

Fishmanpa

22-05-17, 18:19

But then, I am googling...yes I know I must not, but I can not and then....

If you were standing on a cliff and you knew you would get hurt by jumping, would you? The same thing applies concerning Google. I'm sorry but the excuse "I can't help it" concerning this just doesn't fly with me. There has to be a point where you just say no to the compulsion. I get you can't help the way you're feeling and your fears as that's what anxiety does to you. I also get that there's an element of OCD here, but you actually can help this particular impulse. This isn't checking the light switch multiple times or some other ritual like behavior. This is literally several actions that have to take place in order to Google (log on, type in the search field, look at links, click a link and the read until your heart is beating out of your chest and you're in tears).

What are you currently doing to treat your anxiety?

Positive thoughts

ChildOfTheKing

22-05-17, 18:35

I know those stories are out there but the fact that somebody experienced a certain symptoms for x amount of years doesn't mean that it was cancer all along.

paranoid-viking

22-05-17, 18:58

When I read stories like that I always wonder if what they felt was an actual symptom of the cancer or just a coincidence. If it was an actual symptom then it seems like everyone that had it would have the same symptoms and doctors would be more alert to them and get it checked out when people presented with them, right?

I'm pretty sure a doctor can't do much about a vague symptom like "indigestion". He can test but it doesn't mean he'll find anything. I know how you feel though - it's confusing to read these stories. Also, statistically 99.9% of "indigestion" cases are just going to be indigestion which means the stats are on the doctors making that decision. They just don't look for the 0.1% of times it might be something else - not without a lot of other symptoms presenting at the same time or getting worse over time or something. There has to be a reason to look further.

Yes, I am thinking that too. I mean; it is not like if people who gets cancer were never ill BEFORE they had cancer. I mean; it is far from unlikely or quite likely that some of these patients are mentioning ilnesses or not even ilness, but minor conditions that existed before the cancer and which is completely or 100% irrelevant to the cancer. Especially the case of the guy who claimed his mum had untreated pancreatic cancer for 20 long years - I just dont add up to anything I have read or heard in real life. Indigiestion problem is not really an ilness with a name and something people can detect, for all we know this woman had IBS or something in those 20 years before they diagnoes cancer. And sometimes chronic conditions can make people mor vulnerable to cancer althoug in the vast majority of cases these conditions does not lead to cancer. Me, myself for exemple; I have acid reflux and because of that I have a higher chance; I know that; to get gastric cancer than those without acid reflux. But that does not mean that if I get that diagnosed 20 years from now meant I have had that all the time and not just reflux? I also try to think rational; but it is out there on the net and I dont se many or anyone protesting these claims. So what am I to think?

---------- Post added at 19:58 ---------- Previous post was at 19:41 ----------

If you were standing on a cliff and you knew you would get hurt by jumping, would you? The same thing applies concerning Google. I'm sorry but the excuse "I can't help it" concerning this just doesn't fly with me. There has to be a point where you just say no to the compulsion. I get you can't help the way you're feeling and your fears as that's what anxiety does to you. I also get that there's an element of OCD here, but you actually can help this particular impulse. This isn't checking the light switch multiple times or some other ritual like behavior. This is literally several actions that have to take place in order to Google (log on, type in the search field, look at links, click a link and the read until your heart is beating out of your chest and you're in tears).

What are you currently doing to treat your anxiety?

Positive thoughts

Well, I am trying now to see a cognitive therapis. General psychologists are mostly not qualified to deal with severe cases of health anxiety. I ent to one and it did no go very well.

But, by the way; having symptoms coming and going from 3 to 20 years and it turning out to be cancer is not normal is it?

Fishmanpa

22-05-17, 19:04

But, by the way; having symptoms coming and going from 3 to 20 years and it turning out to be cancer is not normal is it?

You know full well the answer to that question ;)

Positive thoughts

paranoid-viking

22-05-17, 19:11

I know those stories are out there but the fact that somebody experienced a certain symptoms for x amount of years doesn't mean that it was cancer all along.

Yes, that is what I have been thinking too. But I see these claims especially on victims tales on "awareness" sites; I call them scaremonger sites. I mean; it is not the words of their doctors or those who diagnosed them; it is their own; "I think I had a pain here and there for four or five years"; these comments proves nothing though.
I am looking at one of these horror stories again(and dont worry I am not going to provide a link to anyone, thats for sure)about the woman saying she had a right side shoulder pain 9 months before diagnosis. Read that she is carrying around a laptop from place to place. Well, unless one is lefthanded laptop bags are carried on the right shoulder which can give you pain.

But anyway, if the interwievers are asking questions like "did you have any signs before diagnois" to scare people reading it I guess it serves its purpose. I am suspecting that certain cancer campaings are purposely trying to scare people with the attitude of "better safe than sorry" and scare(or as they call it "aware")as many people as possible to go and screen themself for certain cancers even though they may only have a mild ache. I have seen someone used the word "disease mongering" to refer to how normal feelings in the body should be a sign of a near coming death. I see a lot of distrusts to the health system and encouragement of doctor shopping in these "awareness campaigns" aswell. Well, if they are intending to scare people they have succeeded with me. My fear bought it.
I hope I am right in my theory. But having read claims of symptoms of something dreadful and horryfying as pancreatic cancer coming and going for years scares me and fills me woith worrying if any unpleasant feeling the last 5-10 years could be a sign of....you, know it frightens the hell out of me.
And 20 years?? Come on, please tell me that is not possible! It cant be!

---------- Post added at 20:11 ---------- Previous post was at 20:10 ----------

You know full well the answer to that question ;)

Positive thoughts

According to patients stories on awareness sites it is normal. Or according to a post I read in a cancer forum(the one wtth the mum who according to himself suffered PC undiagnosed for 20 years).

StephA

22-05-17, 19:23

paranoid-viking

22-05-17, 19:25

I have never understood why people who DON'T have cancer go to cancer forums and read!! I've had breast cancer and I don't even read the forum that I used to be active on, or post on it very much because it only increases my anxiety!
STOP doing that! That's like seeing a bear trap and sticking your foot in it!

I know! I know! But it is an obsession. I know I should not and I know I would have had a much better life if I never even heard of pancreatic cancer.
I want to avoiding googling but it is an obsession. And it leads me into a darkness of fear.
I see hypocondriacs posting questions there, which is disgraceful and something I would never sink to; but I am guilty of reading and hoping he will be replied with "it is very unlikely that you have that cancer"; sometimes it is, other times it is confirmation bias but I think hypocondriacs should leave the cancer victims alone and not invade their forums with our paranoia. I am just reading it so I am not trespassing like those hypocondriacs posting there.

Fishmanpa

22-05-17, 19:57

I have never understood why people who DON'T have cancer go to cancer forums and read!! I've had breast cancer and I don't even read the forum that I used to be active on, or post on it very much because it only increases my anxiety!
STOP doing that! That's like seeing a bear trap and sticking your foot in it!

Exactly! Every once in a while I drop in to see about some old virtual friends but it brings back too many bad memories to read about the new sufferers.

And for someone who doesn't have it? It's like you said and what really gets my goat are the HA sufferers posting for reassurance on the disease forums. I see them on all the boards and many from this site! It's just plain disrespectful! :mad:

Positive thoughts

---------- Post added at 14:57 ---------- Previous post was at 14:54 ----------

According to patients stories on awareness sites it is normal. Or according to a post I read in a cancer forum(the one woth the mum who suffered PC undiagnosed for 20 years).

Cancer is an UNCONTROLLED GROWTH of abnormal cells. It doesn't come and go nor does it stop once it starts.

There will always be an exception to the rule and Dr. Google will be happy to show you those if you go looking but you're not going to be one of them.

Positive thoughts

paranoid-viking

22-05-17, 20:00

Exactly! Every once in a while I drop in to see about some old virtual friends but it brings back too many bad memories to read about the new sufferers.

And for someone who doesn't have it? It's like you said and what really gets my goat are the HA sufferers posting for reassurance on the disease forums. I see them on all the boards and many from this site! It's just plain disrespectful! :mad:

Positive thoughts

I agree 100% with you on that, and believe me, I have not and I never will post on these forums! It is disgraceful behaviur and any HA sufferers posting there should be banned. I witnesed on the PanCan forum one guy with much milder symptoms than mine kept coming back whining "bowhow my little girl may grew up without her daddy" suspecting that real cancer victims and their family should show HIM symphaty. Dont worry, I did not post, just read it. Disgusting.
Have you witnessed regulars from this board on the cancer forums? Shame on them!

Fishmanpa

22-05-17, 20:03

Have you witnessed regulars from this board on the cancer forums? Shame on them!

I followed a couple of posters from the cancer forum I was part of. It's what brought me here in the first place and I ended up sticking around to try and help. I also see members here posting on the ALS forums and heart disease forums at the same time they're posting here with nearly identical threads :lac:

Positive thoughts

ktdid2000

22-05-17, 20:32

That's like seeing a bear trap and sticking your foot in it!

Haha! I've often thought the exact same thing. Cancer forums are the worst, just because it becomes a place for speculation, what-ifs, and confusion - for both the sideliners and the actual people with real diseases!

paranoid-viking

22-05-17, 22:50

Haha! I've often thought the exact same thing. Cancer forums are the worst, just because it becomes a place for speculation, what-ifs, and confusion - for both the sideliners and the actual people with real diseases!

Speculations indeed. The one who claimed his mum had undiagnosed untreated pancreatic cancer for 20 years did not confirm that this was the word of the doctor - that she have had untreated PC without treatment for almost a quarter century when most of what you read tells us that once symptoms apear the disease is terminal and if untreated death wil occur within very few months. If that is true we are talking about an extremley rare and unusual sort of PC which should be of interest to any doctor or scientist in the world.

Fishmanpa

22-05-17, 23:35

Speculations indeed. The one who claimed his mum had undiagnosed untreated pancreatic cancer for 20 years did not confirm that this was the word of the doctor - that she have had untreated PC without treatment for almost a quarter century when most of what you read tells us that once symptoms apear the disease is terminal and if untreated death wil occur within very few months. If that is true we are talking about an extremley rare and unusual sort of PC which should be of interest to any doctor or scientist in the world.

Ok... wait... I read this twice. You're "allowing" your anxiety to rile you up over an unconfirmed post about a supposed incredible variation of pancreatic cancer that doesn't show itself for 20 years to control you? I get that anxiety can make you go some interesting mental places but even anxiety itself would be reading this and thinking "Nahhh... I take the next train". ;)

Positive thoughts

paranoid-viking

23-05-17, 00:07

Ok... wait... I read this twice. You're "allowing" your anxiety to rile you up over an unconfirmed post about a supposed incredible variation of pancreatic cancer that doesn't show itself for 20 years to control you? I get that anxiety can make you go some interesting mental places but even anxiety itself would be reading this and thinking "Nahhh... I take the next train". ;)

Positive thoughts

Well, as in your signature positive thoughts
Both my ways of being hopeful and my sense of critical thinking says that this seems uncredible unlikely and is probably wrong. I mean, if severe pain as a result of cancer shows up it must mean that it is progressive and that there is no possible chance that this woman could be alive 20 years later if it was cancer back then let alone 2 years or even one year:if it was lef UNTREATED! How on Gods earth could THAT be possible; especially with something as extreme as pancreatic cancer? Then again; I hope there are more than me who view such a claim as impossible and unlikely.

Fishmanpa

23-05-17, 01:07

Then again; I hope there are more than me who view such a claim as impossible and unlikely.

There's 4 that do so far ;)

Positive thoughts

MyNameIsTerry

23-05-17, 04:35

paranoid-viking

24-05-17, 00:13

PK,

You've answered your own questions. You've called it out for BS and shown good reasoning. But you are missing a conclusion and continuing to reassurance seek.

If you use a technique where you use Thought Records you do what you have here but re frame it with a conclusion. That's what you need to be doing. Then you read it again when you need to. You don't keep asking because that is just feeding the need for the obsession.

20 years? Rubbish. Like you say, why hasn't this miracle been reported in the media? Why isn't it recorded in medical journals? And for all anyone ever knows, it could be a troll because you never know if anyone in forums is legit.

Yeah, such a out-of-the-ordinary claim could be a troll. But giving the benefit of doubt it seems like the one posted it was quite bitter - bitter at the health services of course for not diagnosing earlier. It does not have to be a troll, but rather someone not proparly educated about basic cancer facts. I have come across people in real lige whose completely clueless about medicine but knows sooo mush more about ilnesses than those stupid doctors and surgeouns and excperts. And I would guess such people also could find their ways to health forums. Could be he/she is insisting to the docs his/her mum had terminal PC for 20 long years; the doctor is trying to explain that this is impossible but that they refuse to listen because they with no medical training whatsoever knows so much better.

But then again I read claims out there which contradicts information I have been told. For excample I have read anxious people posting questions to online doctors fearing they had PC but the docs explain that it would have shown up in tests when symptoms come and if untreated for over a year they would be very ill or most likely dead. And that symptoms dont come and go. And yet, a google search and some MD on his blog writes that symptoms of PC are mild and may be present for three long years before diagnosis.:scared11:

WHY AM I SEEING ALL THIS CONTRADICTIONS? Why does online doctors gives reasurrances that someone else contradicts? All this scares the hell out of me.
Whose right? I pray to God the online docs and my GP is right and that blogging doctor is completely wrong.

Fishmanpa

24-05-17, 00:36

Let's say this is true and there are documented cases of pancreatic cancer that take 20 years to reach lethal levels. That logically means that if you're that 1 in a billion, you'll have plenty of time for detection. The key is live without this fear. PC can kill you but you're letting it do the same thing to you and you don't even have it!

Positive thoughts

MyNameIsTerry

24-05-17, 02:12

Yeah, such a out-of-the-ordinary claim could be a troll. But giving the benefit of doubt it seems like the one posted it was quite bitter - bitter at the health services of course for not diagnosing earlier. It does not have to be a troll, but rather someone not proparly educated about basic cancer facts. I have come across people in real lige whose completely clueless about medicine but knows sooo mush more about ilnesses than those stupid doctors and surgeouns and excperts. And I would guess such people also could find their ways to health forums. Could be he/she is insisting to the docs his/her mum had terminal PC for 20 long years; the doctor is trying to explain that this is impossible but that they refuse to listen because they with no medical training whatsoever knows so much better.

But then again I read claims out there which contradicts information I have been told. For excample I have read anxious people posting questions to online doctors fearing they had PC but the docs explain that it would have shown up in tests when symptoms come and if untreated for over a year they would be very ill or most likely dead. And that symptoms dont come and go. And yet, a google search and some MD on his blog writes that symptoms of PC are mild and may be present for three long years before diagnosis.:scared11:

WHY AM I SEEING ALL THIS CONTRADICTIONS? Why does online doctors gives reasurrances that someone else contradicts? All this scares the hell out of me.
Whose right? I pray to God the online docs and my GP is right and that blogging doctor is completely wrong.

Have you got a link to the doctor? Not everyone who calls themselves a doctor actually is or they aren't a MD but have a doctorate that doesn't allow them to claim they are.

And if a doctor says this, it must have some peer review. If not, I would question why they are not updating the medical community, something that is very important to doctors if for their careers alone.

Layman anecdotes are meaningless when they contradict medical science. There are so many false claims out there in the anxiety treatment sector and some of these people employ qualified psychologists, trust me because I've looking into a few of these to find that are breaching their own code of ethics... Cash is king.

paranoid-viking

25-05-17, 13:08

Have you got a link to the doctor? Not everyone who calls themselves a doctor actually is or they aren't a MD but have a doctorate that doesn't allow them to claim they are.

And if a doctor says this, it must have some peer review. If not, I would question why they are not updating the medical community, something that is very important to doctors if for their careers alone.

Layman anecdotes are meaningless when they contradict medical science. There are so many false claims out there in the anxiety treatment sector and some of these people employ qualified psychologists, trust me because I've looking into a few of these to find that are breaching their own code of ethics... Cash is king.

Link? OK, here it goes:
http://www.readthehook.com/86221/dr-hook-bad-business-pancreatic-cancer-one-worst

According to this doc, who seems like a real MD it goes like this:
"Symptoms are usually pretty mild, beginning perhaps three years before diagnosis is made."
Not really reasurring is it?

Anyway, I came across this by googlling pancreatic cancer+hypocondria to find reasurrance about others with they same fear and then this comes up which just contribute even worse to my fear.
Then again I see some contradictions here: lost of apatite with anorexia and fatty stools aare not excactly what I would call "pretty mild symptoms"; I would call that hard core symptoms. And such things are dismissed by doctors for three years? And they reamain alive without treatment for three years? Thsi contradicts from what I read elsewhere though. Or hear from my own doc. Or the doc who did the abdominal ultrasound scan on me; he was about 70 and have a lifetime excperience on such I would guess.

Then there are the horror stories from publicly funded awarness sites; notably British NHS funded sites(I think). I will not provide any links out of respect for other hypocondriacs who post here as this is REALLY REALLY scary and horryfying; there are tales of victoims claiming to have pain that came and went for years before diagnosis. Not 20, of course, that would be TOO DUMB to post on a publicly funded awareness site, but two and three yes. The strange thing is that the interviews are some years old and no mentioning of them being dead, which is suspicious because if people were going on for so long without treatment I higly doubt they would be alive much longer after diagnosis - suspicious. Here in Norway, a newspaper series about a controversial clinic in Germany tells that they use patients whose allready dided from the cancer in their advertisement - withiut telling that they are allready dead. Seems to me that some people are doing scaremongering and giving people false hope at the same time. Maybe I am cynical, but I smell someones desire for economical profit from all this.

BazB44

25-05-17, 18:30

I just have to cut in. This is an anxiety forum, saying things like "I read an article about a patient who..." scares some people.

Fishmanpa

25-05-17, 19:18

I just have to cut in. This is an anxiety forum, saying things like "I read an article about a patient who..." scares some people.

Unfortunately, a very large majority of threads here contain the words "I read...", I Googled..." etc. It's part of the negative cycle of feeding the dragon, doubting medical professionals, scientific medical tests and trying desperately to validate their irrationality.

Positive thoughts

kraster

25-05-17, 19:43

You are looking for something to confirm your own suspicions.

You are not looking objectively at this. You are looking at the stakes vs the odds. The odds are very much in your favour.

The objective facts are that PC is highly correlated with older age, very aggressive and presents at a very advanced stage. Most PC diagnoses are made in admissions to Accident & Emergency which should tell you a lot about symptoms.

These are the objective facts about PC. Anecdotal evidence or one person's opinion on a blog (regardless of medical training) don't change the objective facts.

You are statistically more likely to die from being in any form of transport than PC particularly if you are younger than 50.

What you are really suffering from is Health Anxiety. Next time you feel the urge to google PC google articles about CBT and Hypochondria because that's what you really are suffering from.

MyNameIsTerry

26-05-17, 05:58

Link? OK, here it goes:
http://www.readthehook.com/86221/dr-hook-bad-business-pancreatic-cancer-one-worst

According to this doc, who seems like a real MD it goes like this:
"Symptoms are usually pretty mild, beginning perhaps three years before diagnosis is made."
Not really reasurring is it?

Anyway, I came across this by googlling pancreatic cancer+hypocondria to find reasurrance about others with they same fear and then this comes up which just contribute even worse to my fear.
Then again I see some contradictions here: lost of apatite with anorexia and fatty stools aare not excactly what I would call "pretty mild symptoms"; I would call that hard core symptoms. And such things are dismissed by doctors for three years? And they reamain alive without treatment for three years? Thsi contradicts from what I read elsewhere though. Or hear from my own doc. Or the doc who did the abdominal ultrasound scan on me; he was about 70 and have a lifetime excperience on such I would guess.

Then there are the horror stories from publicly funded awarness sites; notably British NHS funded sites(I think). I will not provide any links out of respect for other hypocondriacs who post here as this is REALLY REALLY scary and horryfying; there are tales of victoims claiming to have pain that came and went for years before diagnosis. Not 20, of course, that would be TOO DUMB to post on a publicly funded awareness site, but two and three yes. The strange thing is that the interviews are some years old and no mentioning of them being dead, which is suspicious because if people were going on for so long without treatment I higly doubt they would be alive much longer after diagnosis - suspicious. Here in Norway, a newspaper series about a controversial clinic in Germany tells that they use patients whose allready dided from the cancer in their advertisement - withiut telling that they are allready dead. Seems to me that some people are doing scaremongering and giving people false hope at the same time. Maybe I am cynical, but I smell someones desire for economical profit from all this.

He appears to be a real doctor. But that article is not on his own website, it's perhaps too old, and the site you posted is more a journalist site.

20 years would be recorded in medical literature. It's double what various studies have found in PC before it spreads or grows enough.

The thing is, reading about PC shows they have changed their views on it over years and much of this I think post dates that doctor. But what they still state is that once it moves to an advanced stage, decline is rapid. But initially it is slow growing and this presents the opportunity to develop new tests to pick this up and treat it before it reaches severe levels. This is good news.

As the poster above says, it's about likelihood. You concentrate on PC but what you don't seem to worry about are other forms of cancer and their likelihood so if your odds are the same with the others, doesn't that point to irrational thinking because of the skew?

Part of your worry is the fact PC is currently picked up when it's too late. But lung cancer is most commonly picked up at two late stages, the later being terminal, and symptoms are uncommon until these stages. Isn't that quite similar to the PC worry? So, what are the odds of this? Are they equally so unlikely?

I agree with you about that doctor trivialising what sound like more worrying symptoms.

Toto123

26-05-17, 10:24

I see that the cancer fear is the main reason for health anxiety for most of the people even me.
I really hope we reach the point that the cancer will become treatable and not a life threatening disease anymore [emoji53]

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