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Old 10-27-2020, 10:03 AM   #1
Nguyen
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Join Date: Nov 2005
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Letter to a friend who was recently diagnosed with BC.

For a long time, I kept debating in my head about posting this (long read and not written by anyone with any significant credential), anyway I hope this (see attached pdf) helps someone.

Nguyen
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File Type: pdf bcinforafriend2.pdf (249.1 KB, 9 views)
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Old 10-29-2020, 08:23 PM   #2
Nguyen
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Re: Letter to a friend who was recently diagnosed with BC.

Knock on wood a thousand time as I write this and the previous post in this thread.

Attached is a sample of a document that I mentioned in the pdf of the previous posting in this thread. As you can see, the attached doc is full of info and did not follow any page margins convention. If you use WORD (or similar) to create your, you can adjust all margins to fit your info in one page. The main goal is to make all relevant information visible and easily review and refer to during a meeting with oncologist. This is helpful when one switches oncologist, insurance, 2nd opinion, etc. Particularly if one is looking for 2nd-3rd opinion from afar, if this document is up-to-date and concise, I could not see a reason (especially during this covid area) to physically be in another state for consultation. This summary saves a physician lots of time of going through your whole “standard” medical record to form a complete picture of you and your health, AND reiterate/confirm those detail with you during a meeting. That “time saved” could be used to discuss in-depth the next treatment, or ???

Not related to this summary, in keeping track of treatment history, make note on why a regimen was stopped, perhaps 90% of the time, the implied reason is progression. But if it’s due to tolerability, perhaps in the near future, that same treatment can be reused when new discovery enables way to minimize its side effects. With your detail (particularly monthly marker data), perhaps you and your oncologist can get a sense of the growth speed of the tumor. If it’s not fast and/or life threatening, perhaps a previous regimen can be retried if there has been multiple years since its last use.

Lastly, in the “letter to a friend” of the previous post, I wrote about the psychology of “minimize” (perhaps afraid) scan, particularly full body scan. As rigorous as I have been, I couldn’t push this through. Though we have been doing chest CT scan regularly enough, for almost 10 years, we did not do a full body scan of any type. This I believe led to the very late discovery of multiple bone met locations. This has led to quite a number of negative effects to treatment options and quality of life.

Feel free to comment.

Nguyen
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File Type: pdf bcsummary.pdf (379.3 KB, 7 views)
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Old 10-30-2020, 09:46 AM   #3
lk1
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Re: Letter to a friend who was recently diagnosed with BC.

Wow what you have written is so great. I will try to follow your prescription.


thank you sooooo much
Laura
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