#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!

#LCSM Chat Topic 4/24: Cost vs. Value with Expensive Cancer Treatments

Our topic for the upcoming #LCSM tweet chat on Thursday, April 24 at 8 PM Eastern, 5 PM Pacific is the question of “cost vs value” in cancer treatments. The moderator for this chat will be Dr. Jack West.

ASCO (American Society of Clinical Oncology) has recently announced an initiative to define value in cancer treatments and apply some expectations of which drugs should be used, given their remarkable cost. Newer medications are typically costing about $10,000 per month, and the price is rising rapidly.

Newer drugs have varying amounts of evidence to support their use in lung and other cancers. For some targeted drugs, the evidence is compelling: patients who have a specific driver mutation have response rates of 60-75%, profound tumor shrinkage, and a duration of response of a year or longer. But there are also pricey drugs that offer a marginally significant clinical benefit. Is six weeks of additional survival with no chance of a cure worth an extra $50,000 per patient? Is it fair to expect society to pay for those marginal benefits?

The increasing use and plummeting cost of genomic testing will catalyze this cost versus value discussion. A cancer tumor’s genomic profile may identify a mutation for which a targeted drug exists. Such a tantalizing lead is likely to encourage a patient or oncologist to a try new, expensive drug or other treatment when it hasn’t been tested on that patient’s type of cancer. For instance, a drug approved for BRAF in breast cancer may have little or no clinical evidence to indicate it will actually work on a lung cancer tumor. Whether such experimental treatments perform spectacularly or fail, they will certainly cost a lot, and some patients may expect their health insurance to cover it.

The FDA has been charged with making decisions about drug approvals without regard to cost vs value, Yet increasing use of newer, expensive cancer drugs could drive up the cost of healthcare insurance premiums for everyone. Escalation of premiums can be crippling for families. It’s difficult to justify the burden of increased premiums for all when the benefit of an approved cancer drug is underwhelming.

How can we provide the best opportunities for patients while being fiscally responsible with limited societal resources? And how can we ensure that if society is paying for experimental treatments, someone learns something from it that can lead to a greater understanding and improved treatment recommendations later?

With these broad ideas in mind, here are the 3 key questions in our upcoming tweet chat on Thursday:

T1: @ASCO is now evaluating “value” of cancer drugs, as new ones are now ~$10K/mo. Is it fair to potentially deem some not worth cost? #LCSM

T2: How can we address societal concerns around rising costs & unproven or marginal benefits of cancer drugs that aren’t curative? #LCSM

T3: Would it be fair & feasible to have unproven agents provided, covered by insurers, only if pts & their docs submit outcomes data? #LCSM

We hope you’ll join us. Please just add the hashtag #LCSM to your tweets at the appointed hour and follow the stream as best you can. More info on how to participate in #LCSM Chat is here.

Background Reading

At What Price? Discussing Cost of Care with Patients, in ASCO Connection

Lung cancer grant opportunity from The CHEST Foundation

Today #LCSM received the following information about a lung cancer grant opportunity from The CHEST Foundation (the philanthropic arm of the American College of Chest Physicians).  We’re sharing it here to encourage more participation in lung cancer research.


The CHEST Foundation has been supporting lung cancer research since 2002, and this award, established in 2011, funds much needed research that leads to improved treatment and/or a cure for lung cancer. The grant recipient will receive $100,000 in payments of $50,000 each year for 2 years. Eligibility criteria and the application are available online.

For patients and families, our foundation has free lung cancer patient education information available.

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