STEAM ROOM FOR ANGER
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I usual fast before my lab work but because I am a lazy bee I make my appt for around 10 am and tell them I had a tsp of sugar in my tea prior to the test. I doubt anyone notes this other than to say it was not fasting. Regarding portal info I have been trying to get an allergy to pediatric motrin off my chart. I never said that! Where that came from IDK. What they seem to be interested in is my hx of depression and anxiety. Yeah this is a crazy person so lets just disregard her feelings of SE etc. Also they have that I had a shingles vaccine. Wrong, no I didn't because it would cost me 300 some odd $. Taking my chances on that. Had shingles but was only on my upper lip midline. Left a scar but heck there are plenty of wrinkles to blend in. It doesn't seem to matter how many times you tell them the info is wrong, it just keeps showing up. What pisses me off is you can't change your OWN health hx when you go on these sites.
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Had labs and scans last week and phone visit w/MO 2 days later. Between that time I really studied my labs and brought some glaring issues to MOs attention. She passed it off as due to Ibrance but I complained of a number of symptoms. She ran a B12 test and guess who is severely anemic? And as I look back at my lab results, I probably have been for some time. Thankfully these results are available but I shouldn’t have to do my doctors job. And how many patients are able to advocate for themselves?
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No GoldensRbest you shouldn't have to. Good thing you did tho.
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I’m angry with myself. I have stage 4 cancer and could have prevented it if I wasn’t so vein and get implants. Cause God knows if I hadn’t gotten implants and felt that sore knot I wouldn’t have left it there so long. 😔 I don’t have a full clinical picture yet. So just let me vent and move on. Today while Halloween shopping with my kids, an old coworker said I looked tired. I wanted to tell her well I just found out one month ago I am dieing.
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BarbThe BCBarbie - NEVER blame yourself for your illness. You can come her and vent and spew expletives but do not bear that burden
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barb,
I also want to add that you are not dying!* Cancer in the axillary lymph nodes is not stage IV in almost every case I have heard of and does not meet the definition of metastatic breast cancer. I am not a doctor and understand that there may be circumstances in which it could be considered stage IV,possibly. You may see the words metastasis to axillary nodes on a path report but that is not the same as metastatic breast cancer. Take care and fill out that signature line so we can support you better!
* Although stage IV is not curable, neither is it an immediate death sentence. Many of us are living longer and new drugs continue to be trialed. I have lived with stage IV for 10 years. I am still living with it and won’t put my foot in the grave until I really have to. I am not typical, but not as atypical as I once was.
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Where we get lab work since DH has to do his early before his meds anyway since one of his tests measure levels that drug at the lowest point in his system we always go when they open up which is right after 6 in the morning. O dark ugly some days and cold outside but he has to get meds on schedule at a certain time too. We've learned they are not crowded then either and easy to get in and out at least. Of course we've always been fasting anyway at that point and not had anything yet so are covered no matter what. We have often found that another doctor has sent another lab test to done as well at the same requiring fasting we did not know about anyway so saves us a trip.
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I review the notes of every single doctor's visit. I send messages through the portal when I see something that is significantly incorrect. I want it all in writing.
My primary sent me to a sleep clinic because of my lifelong insomnia. The nurse practitioner I saw was arrogant, dismissive, and absolutely determined to sell me a very expensive sleep study so he could then sell me a very expensive CPAP machine. I don't have sleep apnea, I said. I don't need a sleep study and I don't need a CPAP machine.
After the less-than-great visit, his notes included "sleep difficulty began at menopause. Patient counseled to consult gynecologist for hormone replacement therapy." We had talked about my 100% estrogen-receptor positive breast cancer and the fact that I'll probably be on an aromatase inhibitor for life. We had NOT talked about HRT to relieve insomnia. My note of correction was polite but pointed.
I know our physicians and care providers are over-the-top busy. Managed care, referrals, pre-authorizations, forms, and a ridiculous amount of documentation are time consuming tasks, and accuracy suffers. Reality doesn't always match what's written down.
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sbelizabeth: I had a detailed history taken down by a resident and asked for a copy. It was full of mistakes, including IDC instead of DCIS, they may have also given me a successful pregnancy or two. I mailed in my corrections. Several years later I went to a cardiologist at the same hospital and was asked about my invasive breast cancer. I asked if this mistake could be corrected in my record and was told I would have to go back to the ob/gyn department where it originated - so these mistakes live on. (by that time I nolonger went to that ob/gyn practice due to the way they handled the diagnosis of my endometrial cancer) I haven't followed up as yet. Hopefully your mistake WAS corrected.
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My dermatologist charts that she does all this education on various things, but she doesn't. No one there has ever instructed me on the use of SPF, but it's there in my visit note.
I have a job where I write my own patient visit notes, and it's a lesson in what NOT to do.
Incidentally, we never have patients fast for a basal metabolic profile, or CMP, or LFTs. It might affect a glucose, but there are ranges for nonfasting levels, so you can still tell if there's a problem or if something needs further investigation. I would fast for a lipid panel though.
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The GTT is fasting for diabetics. Not for a1c
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I'll consider myself fortunate that the notes I see in my portal are consistent with my visits. There is some junk in there like hepatitis and other vaccines I've already had, and none of which any of my doctors ask me or recommend any of this stuff to me. There is a mistake with my covid vaccine not showing the date of my 2nd dose. I cannot fix it.
I do fast before labs.
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A few years ago when the cancer center computerized things, I was always given a print out of notes on my visit before I left which included remarks by the onc. Earlier this year I was going thru the MyChart stuff online and came upon additional notes I never knew were added to a different section. The big difference was that on numerous visits, it stated I was taking an anti-hormonal along with the Verzenio I was prescribed. False! I well remember asking the onc about it when I started taking V. But several anti-hormonals had failed so she was going with V alone.
The thing is, my onc retired this year, so I didn't address the matter with her before she left since I'm not longer on V anyway. But I felt kind of betrayed, I guess, that this false information was put in my chart.
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Primary and other specalists other than cancer doc are easy. MO uses a different system and their own. Much more confusing and harder to communicate and read things.
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I am new to this thread and it isn't about something that would seriously effect my health , but I need a rant.
I subscribe to MarthaStewarLiving emails ,here in UK. Today I recieved an email that had this in it:
9 Ways to Help Prevent Breast Cancer.
I don't need this kind of 'information' ,that almost implies I am responsible for getting cancer because of my lifestyle. As it happens I did all the 9 things most of the time and still got cancer!
I want to shout at whoever wrote this. I could unsubscribe but on the whole enjoy the emails get. AARRGGHHH!!!
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We should all go post a comment on it and add to their education. I tried but it's asking for my email and I don't want their junk - Need to get home and get my junk email address.
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How about, “9 Ways to Possibly Lower Your Breast Cancer Risk But There Are No Guarantees” ?
Somehow, I don’t think that will sell.
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Well for starters this piss__ me off "But nearly all cancer cases—90 percent or more—are linked to lifestyle, not genetics."
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That's like all the magazines which shout out a NEW weight loss plan on the cover along with a picture of a delicious dessert.
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“ Banish household dust" - I have always hated dusting. Mystery solved - now I know why I got breast cancer. /sarcas
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Cowgirl, yup, that line about 90% of cancers being linked to lifestyle has me seeing red too. Some idiot misunderstood the stats. While it is true that only about 10% of cancers are due to inherited genetic mutations, this does not mean that 90% are caused by lifestyle. There are genetic causes that are not inherited mutations, such as breast density and estrogen levels. According to the WHO, anywhere from 30% - 50% of cancers are preventable, i.e. due to causes that can be controlled/changed. According to Cancer Prevention Europe, 25% of breast cancers are preventable (click to the second page). That's far from 90%!
https://www.who.int/activities/preventing-cancer
https://cancerpreventioneurope.iarc.fr/preventable-cancers/
That is a serious enough error that it should be reported and corrected. But how?
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Harley,
I hate dusting too and I live in very dry Northern CA! Thank you for solving the mystery of why I got bc 🤣
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I was a bean pole and ate healthy due to issues in the house of other people for years before I got mine. It is what happens to some people no matter what and does not matter how much you do with exercise or diet or anything. It just happens. It sinks but to act like it was someone's fault is crazy.
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Ack, we've got new people here just in the last few days who are bending over backwards to blame themselves for having cancer! I HATE these type of articles. And where's the articles blaming men for giving themselves prostrate cancer?
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alice,
Here is my message to those folks, who have enough to deal with :
STOP IT, JUST STOP IT RIGHT NOW! YOU DID NOT CAUSE NOR ARE YOU PERSONALLY RESPONSIBLE FOR DEVELOPING CANCER, PERIOD.
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People are so inconsiderate and try to help by sending articles about cancer that are wrong. Sad thing is its from one of my parents who just doesnt get it.
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jinx27,
My father was always sending me articles and news clippings about all sorts of cancer tx. These were all conventional tx but for every type of cancer under the sun. After he sent me an article about tx for prostate cancer, I tried to explain to him that each type of cancer is most often treated differently. But cancer is cancer was all he could say. Cancer is much more complicated and nuanced than most people imagine unless they’ve been touched by it intimately.
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Exbrnxgrl, so Im not alone in this? Thank goodness, it just seems like people need a class on how to speak to someone you love who is diagnosed and or/ going through treatment.
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Not alone at all. My mother is a retired physician and sends me these stupid articles. I ignore all of them. My brother told me he just considers her emails as "proof of life". We all live far apart.
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Jinx, you’re definitely not alone in this. When I was first diagnosed, my mom sent me tons of stuff about lemons and alkaline water. I knew it was coming since she also bought me shoe inserts, which were to help me lose weight somehow, lol
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