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Drs do have all sorts of code words in their clinic notes to indicate their personal opinion of you as a human, and to serve as an advance warning to themselves for future visits, and to others.
Which is why a clinic note might state where you work and what you do, if they want to remember that. I call it the 'connect the dots' game.
I had a wonderful visit once with a new dr who, after, in his clinic note kindly referred to me as ',somewhat obese.' Lol, I was obese by all standards.
Also, because Americans seem to travel in 'packs' now, they have started to eliminate smaller sub-wait areas after check-in and not allow the 'pack' to go in the exam room with you-usually only one person can accompany you.
I do believe a spouse/parent/child can make the visit worse, because they are emotionally involved.
You want someone who looks, behaves, and speaks 'classy' to be with you at all times, but not verbally interact during the appointment. That person should just sit there to serve as a reminder to all to not treat YOU like cattle. It also helps for you to be clean, well-groomed, and nicely dressed. Many of you will protest my opinion, but I have spent the last 40yrs observing all sides of the situation.
America has collapsed, and healthcare providers are probably not as enthused about their careers as they once were. We literally are seeing human excrement everywhere. I personally have recently seen it on the sidewalk where the bus pulls up, on bus seats, in shopping carts (baby diapers), and slowly darkening the pants and polluting the air of a well-dressed alchoholic. Beer cans, cigarettes, etc in bathroom stalls in the hospital. (I live in semi-rural America, not places like New York or Chicago.)
More and more health systems are combining/linking their medical records systems today. That is good for us, in that factual data can be easily accessed, but it is bad for us when every provider reads every provider's notes, whether they contain fair, or prejudicial, comments. Anonymity, like privacy, is precious and disappearing fast.
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I've noticed the decline, for sure. In lots of places--not just healthcare. I try to dress well, but comfortably, and put on my make up. What I find disgusting is the way people treat me slightly better because of the weight loss. They still don't treat me in a way that I would call "well" in many cases, but every visit isn't one long chiding for being "fat". I get it, maintaining a healthy weight can have health benefits, but that's not the ONLY measure of health. And thin people can be quite unhealthy, too.
I think it has at least something to do with appearances. But, I will say, once I wasn't "too fat", then I was accused of "anxiety" and/or losing the weight in an unhealthy fashion.
Also, as of yesterday, at the age of approximately 38, I'm now "likely just aging". Which, I guess is a nice change of pace because previously I was too young to have any issues, so surely it was just the "fat" that was the problem...
I will say extreme vitamin deficiencies were giving me all kinds of weird symptoms, neurological ones in particular very nasty migraines that caused temporary vision loss and strokelike symptoms, which, those are gone now. At one point they were checking me for MS the vitamin D situation had gotten so out of hand (along with vitamin b and potassium). I got the vitamin issue fixed (would've been nice if someone had figure that out sooner). I will note, the quantity of our food supply is there but the nutritional value is suspect--at best.
For all I know, this could be something simple, an allergy, an infection, something I'm causing myself injury with without realizing... I'm open to any of those possible answers. I just want these yahoos to do what they're paid for and help with some detective work to rule things out and get things on track.
But the US medical system has had too many people interested in big bucks over interest in fellow human beings. It's truly shameful. I agree with you regarding collapse.
Also, some doctors seem to hold themselves out as something more worthy and special than their fellow travelers. That's kind of odious, as well. Being a doctor may mean you have talent and are quite smart...it can also mean you come from money and have just enough work ethic to pass through the system...it can mean you have lots of heart and a strong desire to help others...it can mean you wanted to make money, are smart/talented but also evil enough to Machiavelli blush.... I just don't see this status many doctors have assumed and the feeling of this weird righteous ability to pass judgement on others as good.
I see doctors, at this point, as almost a necessary evil rather than a great benefit to humanity. And I'd sure as @#$@# rather not bother with them whenever possible. It's amazing to me they don't manage to kill more people with pure negligence.
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Just updating. Well, the mammogram came back ok they said. I guess. This is a loose transcript of the exchange I had...
Me: Hi, I noticed I missed a call from your office and I was just calling back...
Squeaky 12-year-old-girl-voice: "Hi, um, yeah, like what's your name?
Me: Dr. Slappy (name redacted, obviously)
Squeaky 12-year-old-girl-voice: Oh okay, um, have you like had any tests done lately?
Me: Yes, a mammogram.
Squeaky 12-year-old-girl-voice: I don't know why we would have called. There's nothing here about you or your mammogram.
Me: Okay...
Squeaky 12-year-old-girl-voice: Oh! Wait! Duh! I'm like so blind today! It's right here. It says you're fine and just get another one in a year or something.
Me: okay thanks -_-
Squeaky 12-year-old-girl-voice: Did you have any other questions?
Me Mentaly: WTH is wrong with people lately...is there lead in the water? Am I going crazy?
Me Actually: No, thank you.
Squeaky 12-year-old-girl-voice: Have a GREAT day! *click*
So, I guess everything is fine? I give up. Words can't express how much I hate dealing with these people. I don't know if I should be relieved or disgusted. Frankly, I'm just tired. Getting old, new normal, my not fat self just feels poorly for no reason other than being over 35. Maybe this is just an allergic reaction to a crappy medical system? I guess I'm fine. Wish I felt fine. Whatever the case, I think I'll feel better not seeing these jokers again any time soon.
The clown college really needs to stop awarding medical degrees, though.
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I am, regrettably, reviving this post. It is now July of 2022 (4 years later). My right breast (same as before) has a 5-6cm mass in it now. I have been to the doctor. I have had breast exams. My last check-up was in October of 2021. I had been ignoring it for a while because I'd had so many people tell me so many times that it was my "new normal" and a "result of aging." My arm started to hurt, and the mass bothers me enough that it's hard to wear a seatbelt over it when I need to drive. So I finally gave up and called any OBGYN in the area who could take me same-day or ASAP.
The doctor felt the lump and wanted me to get in for a mammogram and ultrasound immediately, plus she set me up with an appointment to speak with a surgeon even before those were complete.
Flash forward to today, I have a biopsy in the afternoon because the radiologist suspects cancer (not sure if she's right or just jumping the gun to let me know what I'm in for...I have mixed feelings about her reaction). The ultrasound showed there may be one or two lymph nodes involved.
I've honestly avoided really pressing for answers until now. Every doctor I met made me feel like a hypochondriac for asking anything or insisting I didn't feel well. If I'm honest, my family said I'm fine, too. I didn't feel especially fine.
Now I'm really worried I'm going to be too late to do anything at all. I'm so sad and frustrated and angry. They say "catch it early" but when you try to catch things ...they don't care??
Maybe this will be another false alarm. Maybe this thing that's been growing for 4 years now will be some obnoxious, benign thing that needs to go but won't end in chemo or me being dead. I'm terrified. I'm wondering what it was about me, that in trying to advocate for myself people thought I was just an idiot not worth listening to? Why did I have to have a 5-6cm, painful, hard lump in my chest before anyone wanted to say anything but "new normal" and "process of aging"????!
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oh cbnimh, we are so sorry to hear this update. It is so frustrating that you have been advocating for yourself for so long only to end up with getting a biopsy (finally!). But please remain optimistic that there will be benign results. We are sending good thoughts to you for the same. Please keep us posted with what you find out!
Hugs,
—The Mod
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Thank you. I'm trying to remain optimistic, but I'm obviously not doing a great job. I'm really grateful this board exists. I honestly forgot about this post until I was trying to search for all of the information from 2018 in my old emails and records. My record of venting on this board is actually helping me assemble some puzzle pieces that, I hope, will prove useful. I haven't felt great, but I also would think, if it had been cancer all this time, I'd feel exponentially worse. But, I don't know what I don't know. Whatever happens, I'll update here (and on the UK board I ended up posting to recently having forgotten all about this) in the event this story is instructive/helpful to others who have had similar experiences.
I really do hate our medical system here. I can't tell you how afraid I am of bleeding my family dry trying to figure out what is going on only to get no answers or only very bad results in the end. For just the ultrasound/mammo appointment alone SimonMed was wanting about $500 up front...and that's WITH INSURANCE that we pay through the nose for and is supposed to be a premium plan. I went with a different company in the end, but I'm still not looking forward to the bills on this. I keep saying, I'm too poor to pay up, I'm too dumb to break bad and I'm not cute or talented enough for GoFundMe. All of this feels less like healthcare and more like extortion by a cartel.
My hugs, thoughts, prayers, sympathies and well wishes to everyone trying to wade through this bog. I hope the future will see better systems and outcomes.
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cdnimh--so sorry for all you have had to go through, and for the anxiety you are feeling right now. Believe me, we ALL get it, here. I am hoping for the best possible outcome for you but if it turns out to be cancer, head for the best facility you have access to for treatment. Ask for their financial assistance advisor or whatever they call them, and see what options are available to you. Most of the large cancer centers have financial aid solutions and can help you with that so you'd have one less thing to worry about.
That said, if you don't qualify for assistance, let them get what your insurance will pay and pay them $10 a month forever. You need to focus on your best care right now and being stressed over finances is another thing you don't need. I send positive thoughts and a prayer for you. Hang in there and let us know how it goes. Hugs.
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Hi lw422,
There are a couple cancer treatment places I know of. The hematologist I saw was at Ironwood. MD Anderson (?) is also somewhere around here. I don't know much about either.
I chatted quite a bit with the radiologist during the biopsies. Seems like there's only ONE *possibly* suspicious lymph node. So it's not 2 and it's not obviously problematic, just slightly thickened. I take this as a good sign?? The mass is still pretty big. The radiologist said all its features are indicative of cancer, but she can't say definitively without lab results. She did say, from her experience, 95% chance of cancer. Which, I don't know, 5% chance of nothing is better than 0%.
She said I will know by Thursday or Friday what it is. Tuesday is the surgeon appointment. So, not a prolonged wait, really. I still hate this. I still wish something was done sooner. I tried. At least for a few years I did. And I didn't entirely give up taking care of myself, so I really still feel responsibility rests with a slipshod medical system that cares more about money than people.
At least the people I'm dealing with now seem to care. If that luck holds, I may very well be ok.
As an aside, but not an aside in my mind, my daughter is having issues as well, so I've been putting energy into figuring out her mystery abdominal lump and significant weight gain/pain. Odds are good it's a hemorrhagic cyst that's been resolving but she seems to have hormonal issues like I've had. One thing about it, we're all learning the fight isn't over until it is over and "new normal" can kiss our collective rumps.
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Hi again, CB. I'll be thinking about you and waiting to hear the outcome of the biopsies. I know waiting for results is hard. I'm in the Houston TX area and I was treated at MD Anderson; I highly recommend them if you are diagnosed with cancer. Unfortunately, there are many stories on the forum of patients being misdiagnosed or having shoddy treatment from doctors or treatment facilities; very sad but it happens.
I'm so sorry that you have the additional stress and anxiety around your daughter's condition. Bless you both; I hope for the best possible outcomes for both of you.
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Thank you lw422. I've been reading about the best places to go. I guess my state is actually pretty good for cancer treatment. We have Mayo, Ironwood, MD Anderson and at least one university hospital nearby.
Unfortunately, I will need them. The first round of results is back. It's an invasive ductal carcinoma. It's 3cm according to the radiologist, so the estimate from the original doctor was off. The lymph node that was biopsied was actually ok with no signs of cancer.
I feel a little better, but until I know all of the facts and the treatment plan I'll probably be at least a little on edge. I'm having a hard time wrapping my head around having cancer.
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Thank you lw422. I've been reading about the best places to go. I guess my state is actually pretty good for cancer treatment. We have Mayo, Ironwood, MD Anderson and at least one university hospital nearby.
Unfortunately, I will need them. The first round of results is back. It's an invasive ductal carcinoma. It's 3cm according to the radiologist, so the estimate from the original doctor was off. The lymph node that was biopsied was actually ok with no signs of cancer.
I feel a little better, but until I know all of the facts and the treatment plan I'll probably be at least a little on edge. I'm having a hard time wrapping my head around having cancer.
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CB--I'm so sorry to hear that your worst fears have been confirmed. I know it's a punch in the gut and you'll have many days of anxiety, disbelief and fear. Thankfully most of us calm down and "get a grip" once a treatment plan is in place and the ball gets rolling. Cancer will be your full time job for a while but hopefully your treatment will be doable and you'll put this crap in your rearview mirror. I hope you will find a team of doctors that you have trust and confidence in. Take care and let me know when you have more info about your treatment options. Big hugs to you.
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I was a little bit scared, right off the bat I was called by the wrong OBGYN's office. They received my information instead of my actual OBGYN or even the surgeon. I looked up the surgeon and he's part of the same medical group with the doctor that ignored the lump and told me to get a mammogram at 45 -- a whole five years beyond the well-check back in October 2021. He also had some really unsettling reviews. I swapped him out for one of the surgeons a friend told me about and I'm still on track for Tuesday. Before, I had called my insurance and a bunch of places like Mayo and MD Anderson were out of network for the plan. Mayo wanted $5000 up front and that's with them being contracted with our insurance but not "in network." I can only imagine out of pocket costs!
I called up my godmother because I knew she had health issues and knew other people who have had need of a surgeon and oncologist. She and the other church ladies rounded up names and I found doctors I trust. I was supposed to have more information about the type of cancer today, but the wrong office called after receiving some results. The woman said they didn't really have anything and it just said "intermediate stage invasive ductal cancer" ...to be honest, the woman I spoke with sounded annoyed when I pressed for more information (considering she had the results in front of her). I'll give her credit for at least calling to see why she got them, but I don't see how pressing for answers was so irritating. I was told someone would call with more information about the cancer cells/info today and so she was kind of "it" ...but then the new doctor's office called and told me they had everything so *whew* and they're very nice and supportive, as is the OBGYN that got me in same day last Friday. So oncologist and surgeon are all lined up for next week and I'm still moving fast which I'm happy about all in all.
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Oh good grief; I'm so sorry you are having to deal with more screw-ups and I hope everything is straightened out now. I'm glad you have appointments set up next week; you'll feel a bit more relaxed once you know exactly what you're facing treatment-wise.
I'd like to suggest that you start a new "just diagnosed" thread in the IDC section of the forum. I believe you'll get a lot more input and support from others who share a similar diagnosis. It's been pretty slow around here and not a lot of posters check out the "not diagnosed" section. My diagnosis was IDC/IBC Stage 3 and it was so helpful to hear from others in the same boat! Try to keep busy and enjoy your weekend if you can. I hope your daughter is doing OK. Take care and I'll be looking to hear what you learn next week. Hugs.
ETA--I forgot to ask if you have a patient portal online such as MyChart? If so, all your test results should be there including imaging so you can access them anytime. If you don't have access, inquire about it.
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Thank you! I'm glad to hear it is slow if that means less people are worried or waiting to be diagnosed.
I don't have anything in MyChart, but I'm sure there is a patient portal for Ironwood.
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It's usually slow around here on weekends, but also they have been working on the forum for a couple of months now and have things messed up. Seems like we have lost a lot of our posters due to the mess so I hope they get things fixed soon.
Take care and enjoy the rest of your weekend.
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