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what does metastatic mean in the context of scleroderma?


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#1 Eos

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Posted 17 February 2010 - 12:52 PM

Hi,
I received a copy of a Dr.'s letter/notes and there is the statement: Systemic sclerosis with metastatic disease and RP. To me metastatic means cancer that formed a met, but I am 110% sure this is not meant here.... somewhat bothersome though.... anybody can make sense out of this? Does this just mean the scleroderma is affecting more than just (yeah what?) .....like my fingers... but that would be already implied by systemic... :blink:

#2 Jeannie McClelland

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Posted 17 February 2010 - 01:49 PM

Hi Eos,

I did a google and the Wikipedia had this to say:


"Metastasis, or metastatic disease, sometimes abbreviated mets, is the spread of a disease from one organ or part to another non-adjacent organ or part. It had been previously thought that only malignant tumor cells and infections have the capacity to metastasize; however, this is being reconsidered due to new research."

Another possibility is that the person who transcribed the doctor's notes didn't hear correctly (or couldn't read the doctor's writing!) and used 'metastatic' in place of 'metabolic'.

Are you going to follow up on this? It's the kind of thing that would drive me nuts.

Best wishes,
Jeannie McClelland
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#3 Eos

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Posted 17 February 2010 - 02:04 PM

I may call them and ask.... I somewhat do not want this on my record. I could also ask my coworker, an oncology MD,... but then she would ask for the context and yeah I'd have to lie and make something up that probably would make less sense than the original. :o . I am just puzzled as RP is my ONLY symptom and has been for years (yeah ok. fatigue, malaise, and joint pain/stiffness and GERD)... but nothing that can be considered 'metastasizing' or 'systemic' as in bad or taking over my body like a met..... :blink:
metabolic... I am fine metabolically.... :happy1-by-lisa-volz:

#4 judyt

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Posted 17 February 2010 - 05:18 PM

Hi Eos,

I know just what you mean, I received a copy of a report from my Cardiologist and discovered that the at the top of my problem list was - wait for it - Depression! No mention of Scleroderma, or CREST just Depression and then Sjogrens'!

I called his office and talked to the receptionist who assured me that they only transcribe what the Dr. said!! I asked for it to be changed nevertheless, but when I got to see the next Cardio Man up the ladder he still didn't know that I have Scleroderma - tried to tell me that Sjogrens is not Sclero! :emoticon-bang-head:

I know that the only thing to do is to write to the first Dr. and express my concern, and I will do that, but when everything is an effort we don't need more things to worry about.

Hope you manage to get it sorted without too much trouble.

Still sending HOT hugs from New Zealand.

Judy T

#5 Shelley Ensz

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Posted 18 February 2010 - 04:29 AM

Hi Eos,

Sometimes they get really mixed up, either by perceiving things wrong, saying things wrong while dictating, meaning something other than what we interpret, or confusing us with other patients.

I've had some truly off-the-wall oddities in my medical records. But my all-time favorite is the one where it was reported that I was a "heart transplant patient". I've never had a heart transplant nor even the slightest question of needing one. All I can figure is that the doctor heard me saying that we were waiting for my husband to have a lung transplant, and somehow things got very muddied in their memory.

Anyway, when I discovered the error, I asked to have the passage removed. And they refused. They said they could only add a new entry to the chart, to the effect that I did not have a heart transplant, as previously stated! I figured I would pass on that idea, as the redaction would make it sound as though I had lied in the first place.

So there was just no winning, except for me to have to point out to all subsequent doctors at that clinic that I had never had a heart transplant nor had I ever claimed to <sigh>.

Let us all know what you find out regarding this, will you?
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 lizzie

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Posted 18 February 2010 - 08:10 AM

Hi Eos,

I share an office with a medical secretary. She frequently has problems deciphering what the doctor says on his dictation tapes and often asks me and other colleagues to listen to a certain section and see if we can tell what the doctor is saying. Sometimes she just types what she thinks! I just wonder if the doctor had actually said static disease - I.e not progressing?

Shelley - love your story!


Lizzie

#7 Amanda Thorpe

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Posted 18 February 2010 - 11:16 AM

Hello Eos, I hope you are able to get the answer soon. I had been hoping to get an answer this month to a query I have after seeing a letter from the rheumatologist, unfortunately I'm not now back until April. These things may be small issues but they really can grate on you! :emoticon-hug:

Shelley in the Scleroderma Hall of Fame you get the lifetime achievement award for most bizarre entry into a medical record. :flowers:

Take care.
Amanda Thorpe
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#8 Eos

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Posted 18 February 2010 - 04:10 PM

Lizzie... static makes sense!!! :emoticons-yes:

#9 enjoytheride

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Posted 18 February 2010 - 04:12 PM

Ah, Shelley-- things may be getting easier in the "removal of misinformation" department. On one of my first visits to my internist, he asked about the documentation on my Barrett's esophagus. I explained that the doctor who did the scope thought that I had it but my regular doctor said the lab reports that came did not support this. So the internist said "Let's get rid of that- it's confusing." And he simply deleted it off the practice's computer record. Bop-a-da-boom- no more Barrett's. :)

Maybe doctors can do it while others in the office would not.

#10 Shelley Ensz

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Posted 19 February 2010 - 03:44 AM

Hi Enjoytheride,

I'm delighted you got un-Barrett's so easily! I think it varies by clinic. One of my old clinics had me down as having Sleep Apnea, whereas I had only been tested for Sleep Apnea and the results were inconclusive on apnea, because due to my (already diagnosed) severe insomnia I didn't sleep enough or deep enough for them to be able to assess sleep apnea.

Anyway, they had computerized records. I asked my doctor to delete it, and she was able to delete it in one section of the records, but not in another, so it remained as a Current Health Issue (or something like that). I know it's stupid but it did bug me because I have enough wrong as it is, without having untrue things wrong with me. So I took great care when I changed clinics, to be sure that the mistake wouldn't simply be copied over, ad infinitum.

This should also be a wake up call for those among us who have not ever requested copies of their medical records. To keep our medical care on track, we all need to know whether or not there are inaccuracies in the record. Some doctors appear to be great but are miserable at documenting things; other doctors who I did not particularly care for turned out to be absolutely fabulous when it came to documenting various ailments and illnesses in my medical record. So really we don't get the entire picture of our medical care (or lack of it) until we see what ends up in our chart.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 kaykay

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Posted 19 February 2010 - 05:38 AM

My GI dictates while still in the exam room. I love it because I can question any points in real time. It can be surprising to leave a visit then later see that the doctor saw things differently. I have Raynaud's in my record and didn't really know that, though this past period it has gotten more obvious. In this case I'm not challenging it.

Maybe the GERD is a sign of 'metatasizing' - or some other innocent explanation. I'm hoping it isn't serious.

Take care

#12 Eos

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Posted 22 February 2010 - 03:21 PM

Hi,
so I broke down and called the doctor's office. Talked to the PA. I guess they mean by metastatic disease that the scleroderma manifested as RP... so to say the sclerosis went in my fingers.... akin to a primary tumor causing a met somewehere else in the body... just still not so sure where my sclero equivalent of primary tumor would be? Blood work markers? :blink:
I somehow dislike this whole cancer analogy.... makes things seems so.... terminal.

#13 Jeannie McClelland

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Posted 22 February 2010 - 03:28 PM

Hmmm, I'd be inclined to ask that the report be re-written to avoid the use of 'metastatic'. It seem like calling a couple of inches of snow here in the Rockies as 'severe winter weather'. Mind you, I love to argue!

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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