Having a rough time

[beth0277]

I'm having a rough time. The thoughts about this "mass" are creeping into my brain again. I had myself to a point where I was 50/50 about getting another CT in 3 months. But now, after talking to some friends who seem to think this is urgent, I sort of feel like I need to get one sooner. I am so scared of the radiation. This will be like my 6th CT scan. I just want to cry.

[floridaguy65]

Hi Beth:) I know it's tough.

I wrote you a longer post yesterday of what my advice would be. To me, there simply is no other alternative. As I said yesterday, I don't have all the answers, certainly. But, what I do know about seeking out a longerterm healing path for HA involves moving away from medical intervention, ultimately. There is likely always gonna be some doubts (some more driving than others), but we just cannot continue to embrace counterproductive measures in our overall well-being protocol. The fear isn't gonna go away, overwhelmingly, until you take a leap of faith and move away from medical intervention. It will be a leap of faith as we just will not find the ultimate reassurance we are looking for. We will not find it as it does not exist for anxiety peeps. What does exist is the hope from continuing to seek out a healing path for our mental health challenges.

Your CT scan that you just had is clean. This is wonderful. Why would your friends input dictate further action on your part? The reason is that we have HA / ADs and we feel compelled to seek out reassurances that we are gonna be OK in life and we feel compelled to seek out reassurances that what we are doing (or what we are not doing) is OK. This is why we can feel so dramatically helpless. The reassurance seeking removes our ability to feel we have some control over our lives. We feel as if we are just flailing in the wind being drifted around, aimlessly, by our HA / ADs...being taken wherever our anxiety issues wanna take us. It sucks, I know. It is widly rotten. But, there has to be a time where you feel the fear - feel the compulsions - feel as if you are 'risking' your life - feel as though you are being callous to the well-being of your loving family, but you do not fall back into repeat patterns of behavior (actions and habits). Is this a risk? Well, we sure as hell feel it is. But, so much history and so much of our own experience has shown us that it is, actually, not a risk. And, it is definitely not a risk when it is compared to the true a proven risk of keeping ourselves locked up in fear cycles.

I feel ya' Beth:) Lots have been where you are at today:)

Peace and Feel Well:)

[beth0277]

Your CT scan that you just had is clean. This is wonderful. Why would your friends input dictate further action on your part?

That is the thing...It wasn't clean. There was a large mass shown on/in my bladder. The doctor, before looking in my bladder with a scope, said if I had come in with blood in my urine and that same scan he had just reviewed, he would diagnose me with cancer before even looking. He said, even without blood in my urine, he was pretty confident what he saw was cancer. But then he looked, and said my bladder looked perfect. Said he couldn't explain it, maybe it was a blood clot (though not likely given the fact that I had no blood in my urine) or maybe something digestive pushing in on my bladder, but he had no explanation. He said "if I want" to repeat CT in 3 months I can. So, if I had a clean CT, I would feel okay about it, but based on the CT report from 2 weeks ago, there is/was something on my bladder.

[pb]

sorry wrong post!

[beth0277]

Brain tumor?

[sixpack]

pb just misread your post.


and beth.. the test you had yesterday is the more important one, imo.

i mean do what you want---get that ctscan in 3 months and then get a few more....  then once that fear has been reassured through all those tests, you can start dealing with the NEW fears that weren't relieved by the previous tests.   That may be a bit snarky to say.  but I think you need to start dealing with your fears more effectively than spending all of your time in dr's offices and under diagnostic machines.

beth all you will do is further entrench your disorder getting more and more tests....   HONESTLY can you say ONE good thing ANY of these tests have done for you?  HAVE they diagnosed anything that will lead to the end

[beth0277]

I'm not especially worried that I have bladder cancer. Nor am I worried that there is anything going on with my bladder. I do feel comfortable with the test the other day that there was nothing found on my bladder. However, that doesn't explain the "mass". Maybe it was on another organ? Maybe it was who knows what? I am trying...really, really trying. I did cancel all of my fecal fat stuff for the time being. I was really confident about not getting the CT scan, but talking to others who are like "Of course you need to get it again" has me waivering.

[SighNoMore]

Beth talking to others is a double-edged sword. Do they know your history? Do they know what the doctor recommended? Will having another scan really make a believer out of you that everything is ok or as Sixpack said will it make this better and then question other things?

Did the hospital respond to the possible mixup? Did the scan specifically said the mass was on the bladder?

[beth0277]

When I called the hospital, the girl I spoke to in radiology said she had never heard of that happening before, but she guessed anything was possible. She looked and saw that my CT was read around 8:00 pm on the evening that I had it done. I was done probably around 7:15 pm. She said they are usually read pretty closely to the time they are done, depending on how busy they are, how busy the ER is, etc. So, the timeline sounds believable. She said the actual radiologist that read my report was out until Monday, but she was going to ask him to review things. I told her I have no question as to whether the report for me shows a problem, because I took a copy of the disc to my urologist and I know my name was on it. Though I am concerned that possibly someone else could have been mixed up with my results. So, like the actual CT image is not my body, but has my name on it, if that makes sense.

The scan did specifically say that there was a "possible filling defect" in the bladder, which is, from the explanation of the urologist, basically the same thing as a "mass". It means there is "something" in your bladder stopping it from filling up. Like if you would picture a water balloon and put a marshmallow in it. You would see the area where the marshmallow is as a "filling defect" because there would be no water there, make sense?

[SighNoMore]

That makes sense. The reason why I was asking is because if the urologist did not see anything with the cysto that is the gold standard for looking for tumors then I was wondering if the next scan was absolutely necessary.

It just seems crazy that there was something that noticeable this go round and nothing six months ago, and now the urologist didn't see anything. Will it give you peace if you have another scan?

[beth0277]

I agree, and so did the urologist. It doesn't make sense. For there to have been something that size, he agreed that something would have been visible in June. And when he did the cysto, he said it looked perfect. So...I guess it could have been something completely random that "disappeared" but I don't know. And yes, a CT would ease my mind, but I want to move away from testing for reassurance sake, particularly if that testing includes radiation. I'm stuck.

[SighNoMore]

If you want the test what about a u/s or MRI? I hate the radiation too. I have had one CT scan, doctor demanded, and I hate that I even had to have that!

[marc]

I have had three scans of my abdomen and one of my brain, all by MRI. I would suggest an
MRI next time and this is what my doctors have recommended when a scan needed to be done.

[floridaguy65]

Your CT scan that you just had is clean. This is wonderful. Why would your friends input dictate further action on your part?

That is the thing...It wasn't clean. There was a large mass shown on/in my bladder.

Sorry B, I meant to say cytoscopy not CT. Hard keeping up sometimes:) Isn't a cytoscopy the definitive test for bladder cancer?

I understand HA peeps have health issues...I speak of this often. And, actually health issues tend be dealt with pretty darn well by HA - when push comes to shove. This 'mass' that was found was discovered as you were having testing relating to a fecal fat test correct? Nothing else was found elsewhere, and likely would have never been found otherwise. Now a chain of events has transpired where you feel that you are locked into getting further med testing. You express over and over that you're tired of testing, exhausted....sick of where HA has led you, etc. So there still has to be determinations of what is actually needed by you medically....medically NECESSARY. This is one of the toughest situations an HA person can find themselves in - deciding whether or not to get med testing. I have been there, I assure you. I can't tell you what to do Beth. This is your life...this is your body. We have to determine - somehow / someway - what is best for all considering all the known facts and overwhelming likelihoods. Nobody here is a Doc....but everybody here is an anxiety peep:) All I know is that HA repeats itself over and over and over until we make changes. Longterm commitments and changes. I know you're trying Beth - I do. I've been replying to your posts since you came here:) Peace be with you and I hope you can find your way to some resolutions and to some lasting solace:)

Peace and Feel Well:)

[LindaRK]

My mom's bladder cancer was determined by a cytoscopy she was having for something else.  I think you're right floridaguy.  By the way ..... she just turned 92 on the 29th of January and still going strong. :-)

[beth0277]

So, I spoke to the hospital today (where I had the CT). The head of radiology looked over everything, and confirmed the results did belong to me (and my bladder  ). They said specifically that it DID NOT look like an "artifact" (which is a blip on the image) and that *something* was definitely there, but whatever it was, the only follow up would be cystoscopy so if it was gone, it was gone. It just worries me because *what* was it? They said maybe blood clot? So that doesn't sound too good. Aren't blood clots super dangerous in and of themselves? Maybe something else? Who knows...I am just having a hard time with it. I hate the unknown.

[LindaRK]

So, why not have the cytoscopy if that's what they're recommending?  Then you can put this whole thing to rest.

[beth0277]

I did have the cystoscopy, on Tuesday. It was completely, 100% clear and normal. The doctor came in before it and said based on the image alone he was confident it was cancer, but it didn't make sense to have grown to that size since I had a CT last June and it wasn't there. He was surprise but when he looked in my bladder he saw nothing but a perfectly normal bladder. My concern is the unknown. The *what* was it?

[trainwreck]

I am sure the unknown is horrible.

From the outside, here is how I would view it. 

Somewhere someone is in error.  But your doctor looked at film, said he knew what it was from the film and did a cystoscopy.
Don't you think HE double and triple checked what he was doing when he didnt get the result he was expecting? 
There is no way your doctor was going to let you leave if he thought there was an issue.  It would be negligent on his part.  I would only go with the one thing you know for sure, and that is that your doctor told that your bladder was fine.  Everything else is pointless speculation. 

[laura124]

Beth,
I can totally understand feeling uncertain about what just happened to you!! My advice would be to gather all your medical records, tests, scans, whatever and get a second opinion.  If that scan was definitely yours, than you deserve an answer to what was on your scan.  Perhaps the hospital or doctor is trying to cover up a mistake to avoid a suit.  Who knows now days? It sounds like the scan was mixed up with another patient's to me.  I worked for doctors for many of my younger years and I know what happens, how they talk behind closed doors and how they try to protect themselves at any cost.  I'm not suggesting suing, I just think you deserve an answer for your own peace of mind.

After this is over try to remember that having all of these tests and scans because of your HA is what got you into this mess in the first place. The more tests you insist on having for reassurance, the higher risk of false alarms or even physician or hospital slip ups.  Now you have had all these scans and you may or may not need another follow up scan to clear up if this last one was yours at all!

I saw an episode on Dr. Oz on what tests are recommended and which are excessive.  It was on Mon. or Tues. -check the website for the episode, it's very insightful.

Keep us updated on the results of this mishap with your bladder!

[beth0277]

Laura, I think that is part of the issue. Whatever it was isn't there anymore. So there is no way to know for sure what it was. The radiologist basically said "Consider yourself lucky, you are fine". I just hate the unknown.

It also doesn't help that for the last month or so I have had intermittent low pelvic pain on the left side. It has flared up again, so that bothers me. I *think* it is menstrual related/endometriosis, but it is pretty painful so it is in the forefront of my mind.

I'm honestly at a loss of what to do. I don't think the hospital is necessarily trying to cover anything. They were more than helpful and immediately reviewed my images when I was concerned. They said *something* was there, it looked like cancer, but the gold standard test is the cysto, which I had. I trust the doctor that did the cysto, he is very experienced and I am confident that he looked very well, especially given the circumstances.

Maybe this is my punishment. I probably didn't need that CT to begin with and now I am dealing with all this extra stress because of it. The fact is, my bladder looked okay, 8-9 out of 10 bladder cancer patients have blood in their urine, which I have never had. I had a clean CT last June. And I have a history of asymptomatic UTI's, which could explain some blood or mucus in there. Who knows? I left a message for my doctor yesterday asking for his opinion, again. We'll see what he says.

[floridaguy65]

Maybe this is my punishment. I probably didn't need that CT to begin with and now I am dealing with all this extra stress because of it.

HI B:) Don't think of it as 'punishment'...be compassionate to yourself. But, this CAN be an HA learning experience and you can use this whole process to help you frame future anxiety interractions. There will always be the "should I?" or "shouldn't I?" questions in an HA mind. You are always gonna have an HA mind. That's OK...I will, too. That doesn't mean that we cannot gather all the information we need and make the best possible decision. And, sometimes, that decision might be med testing. Overwhelmingly, though, it has been shown, time and time again, that HA peeps seek out medical intervention FAR too much. And, that the 'fall out' from being in front of Med Docs, too much to begin with, is that we can get caught up in a chain of events where we seem to have no choice but to have further med testing. Most often, we DO have options and other choices. And, if we have an overall OK health report (which most of us do), then a very viable option could be to wait things out a bit. Wait things out a bit WHILE embracing all the good actions and habits that can influence our mindsets and can help us, perhaps, not build up into hyper-panic mode. 'Regular panic mode' just might be OK....and we can work our way through things with 'normal anxiety', hopefully:)

Keep telling yourself that the goal is a regular, normal health protocol. Keep telling yourself that we sure can learn how to live WELL alongside our mental health challenges:)

Peace and Feel Well:)

[beth0277]

I've been sort of MIA for a few days. I took a few days off work and just spent some time with my son and really enjoyed being a mom, without the constant fear of my health on my mind. It was really nice.

I struggled a lot with what decision to make regarding this. In talking to my PCP, she agrees that most people, even without especially high health anxiety, might feel uneasy given the circumstances. She thinks a repeat CT in 3 months is reasonable, so that is what I am sticking with for now. Things could change and I always have the option to cancel it. I just have to make a decision, and that is what it is, for now.

[Allochka]

Hi, I have not responded to your posts before, but I've read this CT scan story. I've been in a similar situation with my MS scare. my MRI wasn't perfect - the first neuro I saw advised to repeat the scan in 6 months, if no changes- to relax. Of course, being a hypochondriac, I had to go to another doc for second opinion. And she ordered to go for a repeat MRI much sooner, perform and MRI of the neck too, use more powerfull machine, etc... So I had to make a decision whose advise to follow - first neuro or the second. So I understand how hard making a decision is. Believe me - when you make a decision to repeat a scan or not, you'll feel much better. My advise would be to book the scan, and then during these 3 months you'll have enough time to calm down and to rethink it rationally. And most probably your rational mind will take over and you'll cancel the scan. This will be a huge step towards HA recovery. If you don't book it now- you could blame yourself for not being prudent, afraid of making mistake... But if you book to feel safe, and then cancel after you truly believe you don't need it, with no regrets - this will be a victory. i did exactly that - booked, calmed down after a month, cancelled, felt great I must admit I did repeat the scan after 7 months, but it was made in much calmer way. To repeat in 3 months would be more hysterical, would be a bigger surrender to my HA. Right now - book, it will give you a feeling of made decision, which will calm you down. And then you'll act rationally and most probably won't need it at all.
My follow up MRI was fine. I'm sure you are OK too - huge bladder cancer can't pop up in 6 months. Good luck!

[Allochka]

Just wanted to add - Floridaguy was absolutely right about far too much med testing causing more stress. In my case I insisted on MRI, forced a neuro to do this. As a result I've got 7 months of unnecessary MS scare and desperate waiting for a follow up. Same with you - unnecessary CT scan had led to this. Perhaps we should keep this in mind for the future