Panicking - pancreatic cancer fear

[ckelley116]

I hope that you hear back at some point. It's worrying having to wait, but at least you will have answers soon.

Thank you 😊

So, good news and bad news. The good news is that my doctor’s office finally contacted my insurance company. The bad news is that my insurance company is refusing to authorize the CT scan without additional notes from my doctor, which she doesn’t have because I haven’t actually seen her - this has all been going through the patient portal’s messaging system. So now I have to wait until May 16, which is when I have my appointment, at which point she’ll either get the information they say they need and they’ll let me get it, or they’ll say no again. If they say no again, the only real option is an ultrasound, which doesn’t require their authorization but also isn’t the best option, visually.

So 12 more days until I’ll know anything at all. I’m getting tired.

[ckelley116]

I had an okay week. I'm working through The Health Anxiety Workbook by Taylor M. Ham and I'm at a part where the "assignment" is to track your anxious thoughts for a week, which I started doing last Sunday, along with their triggers, the emotions they cause, and the intensity/certainty. Earlier in the week I was writing down a lot more thoughts than I was by the end of the week. I wasn't any less anxious about my situation in general, but I felt like it gradually stopped consuming every waking thought. I also found a website that teaches HA coping techniques and learned about reframing my anxious thoughts into less-catastrophic versions.

Last night I went to a graduation party with my sister and some friends and had a good time - I thought very little about what was going on.

Today is Mother's Day in the US. My sister and my dad took my mom out to lunch. No one in my family is aware of what's happening, and I feel like I did a good job not thinking too much about it. I admit there were a few points where I wondered where I would be next Mother's Day, but didn't let it consume me.

When I got home, I spent a little time on social media. I have triggering keywords blocked but unfortunately those videos which don't use certain keywords in their descriptions but still might involve the topics get through. I ended up landing on one of those videos that asks a question and then goes through a slideshow of answers from Reddit. The topic was "crazy things about the human body". I should've scrolled past but I thought it might be just interesting but innocent things. Nope - the third slide started with "pancreatic cancer can grow for years..." I shut the app down before reading the rest of the slide, but the damage was done. Whatever this thing is that was seen on CT has had two years to get bigger, worse, more sinister. I'm feeling physically sick (not "is this a symptom of PC" sick, anxiety sick) and like there's no hope for me.

[mellmay]

Thinking if you 🌺 - so sorry you are going through all this worry - once you have had the CT scan you will relax as I am sure there is nothing to worry about - but its your HA taking over - keeping doing those HA workbook exercises!

[ckelley116]

Thinking if you 🌺 - so sorry you are going through all this worry - once you have had the CT scan you will relax as I am sure there is nothing to worry about - but its your HA taking over - keeping doing those HA workbook exercises!

Thank you 😊

Was doing all right today, even feeling a little optimistic…until I decided to pass some time scrolling through TikTok and saw a video of a girl who was obviously younger than me, maybe in her mid-20s (I didn’t hang around long enough to make sure) who put in the video caption that she’d had been diagnosed with PC. I immediately scrolled away and didn’t watch any of it, and I definitely haven’t been searching or engaging with those kinds of videos so I’m not sure why the algorithm decided to show it to me, but all that optimism is totally gone now. This is so awful; I don’t know how much more wondering I can take.

[ckelley116]

Not sure if anyone's still paying attention to this but I figured I'd update!

I saw my doctor today, finally. She's so great and spent nearly an hour with me (not typical in the US healthcare system, where they try to have you in and out in 15 minutes). We talked about the issue, and she told me a few things that made me feel a lot better.

First, she said that medical professionals are seeing a lot more instances of pancreatic cysts, due to more scans being offered as screening purposes for other issues. Since the instances of pancreatic cancer aren't really going up, this suggests that many people have them and just never know because they aren't getting scans that might uncover them. She shared her own experience of going for a chest scan for a routine heart-related screening which turned up lung and thyroid nodules. After more tests and lots of worrying, both turned out to be of no concern. She told me that while incidental findings are common (which I knew), 99% of them are nothing to worry about. And that if this cyst had been of clinical concern 2 years ago, it would be showing it now.

Then, she assured me that my family history and risk factors, along with the demographic into which I fall (non-Hispanic white woman younger than 50, in case anyone in the same demographic stumbles upon this thread in the future) all work in my favor.

She didn't tell me it was nothing to worry about, which obviously she can't, and she still wants me to get the CT scan, but she was so understanding and sympathetic and reassuring (in a way I think is okay even for HA sufferers) that I came out feeling so much better. And fortunately everything else she checked looked good!

The bad news, unfortunately, is that I came home so excited to share the information with my husband but all he heard was that I felt better before he went off on a tirade about how my health anxiety "drags him down". Never mind that this is the first real episode I've had in 6 years (I've had blips, none of which I told him about or lasted long enough to really get me down) - I had to listen to him go on and on about how annoying he finds it when I have health worries. But god forbid I ever mention the self-diagnosed PTSD he refuses to treat, or the ADHD he seems to think is humorous, or the victim complex he has for reasons I still haven't figured out. So that was deflating. I wish they had a health anxiety version of those pregnant bellies or period cramp stimulators men can wear, so that people who don't know what it's like can feel, just for a few minutes, how horrible it can be.

[.Poppy.]

I’m glad you got good news! I’m sure the CT will confirm, hopefully you can get that scheduled soon. It sounds like you’ve got a great doctor - those are hard to come by now!

I’m sorry about your husband, that was uncalled for. I think it’s hard to really know the feeling, but some people just don’t even try or can’t see beyond themselves.

I remember when I first went to the doctor for depression, I had my mom come with me to one of the appointments and when we got out, I had to sit and comfort her because she was crying saying it was “so hard to see her daughter like that.” Which I’m sure it was, but having to push my own pain aside to comfort her at a time that should have been about me was a yucky feeling. I love my mom, but I haven’t told her anything about my mental health since then.

[ckelley116]

Thanks, Poppy! If you lived in southeastern Pennsylvania, I'd recommend my doctor in a second. I dread the day she retires, and I know she's pushing 60, so that day might come sooner than I want it to.

I did hear back from the office today; unfortunately my insurance company still seems disinclined to authorize the CT scan even with the notes. They told me it might be a good idea to get on the phone to them myself and harass them. I don't know what I'm going to do if they keep denying it (they officially haven't yet, but apparently the conversation didn't go well).

I'm sorry you had that experience. It can be really difficult and frustrating trying to get our loved ones to understand what's going on inside our heads. I don't really talk about it with my family either, but my husband lives with me, so I can't hide it from him that well. We did end up talking it out last night and I think he understands that it goes a lot deeper than just "worrying too much". He still doesn't understand what it feels like, but I don't get his PTSD either (though I still wouldn't yell at him for having an episode).

[jojo2316]

This is great news… and i am sure the eventual outcome will be a simple incidental finding. Like your doctor, i also have nodules in my lungs and a cyst in my kidney and liver- all found because of (way!) too much imaging!
Good luck for the scan and please do keep us updated

[ckelley116]

Thanks, Jojo! I hope you're right

[ckelley116]

So my insurance company came through and approved the scan. It’s scheduled for Tuesday, a week from today. At that point it’ll have been 6 weeks of constant worrying about this. I’m ready to be done with it!