#LCSM Chat Topic 05/08: “Lung Cancer Medical Records: What You Need to Know”

Please join us for the next #LCSM chat on Thursday, May 8, 2014, at 8 PM ET (5 PM Pacific).  Our topic will be “Lung Cancer Medical Records: What You Need to Know.” This chat will be moderated by lung cancer patient advocate Janet Freeman-Daily.

Once a person is diagnosed with lung cancer, they quickly begin accumulating medical records in the offices of their healthcare providers.  For patients in early stages receiving curative treatments, medical records may not seem interesting. For those with a diagnosis of advanced or metastatic lung cancer, however, medical records are quite valuable.  Information in the records is essential for obtaining second opinions, enrolling in clinical trials, discussing treatment options online in lung cancer forums, or voluntarily sharing data in research databases.

Examples of key medical records include pathology reports (which state the specific type of lung cancer the patient has), molecular testing results, and scan reports (which may indicate response to treatment and/or possible progression) as well as scan images on CDs.  Records also include biopsy slides and tissues stored in clinics, hospitals, or other facilities.  Knowing where one’s slides are and how many are still available is useful if one wishes to pursue molecular or genomic testing somewhere other than one’s home clinic (e.g., for a clinical trial).

Reviewing one’s records before sending them to a second opinion site, clinical trial, or elsewhere is a good idea–sometimes errors occur due to transcription or communication between multiple medical offices.

Patients, advocates, healthcare providers, and researchers all have good information to share on this subject. Our discussion will focus on these topic questions:

T1: Which medical records do lung cancer patients need for second opinion or other purposes?  How does one access them?

T2:  Tissue banking–where are biopsy tissue and slides kept, and for how long?  What are they used for?

T3: What patient data might patients or others share in research databanks, and what concerns does this generate?

For more information about how to participate in an #LCSM chat, check out our primer at https://lcsmchat.wordpress.com/lcsm-chat/  Hope to see you on Twitter!

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