More on The Language of Cancer …. The Language of Respect! Earlier this year AnCan ran a couple of webinars on The Language of Cancer – please search on this page under ‘Language’ and you’ll find links to the earlier webinars and articles.
We at AnCan think that the language used when the medical world interfaces with patients could certainly use some improvement – and not just w.r.t. to cancer. In preparing for our second webinar, I ran across an excellent discussion on Medscape. Dr. Tatiana Prowell was one of the participants, and she has just proposed guidelines for how the medical community should refer to patients – and to each other, for the upcoming 2020 ASCO sessions. Unfortunately I could not figure how to download other than in photo format that I am inserting below and hope you can download and enlarge! Failing that, read it on Twitter https://twitter.com/tmprowell/status/1197543809594351616 .
We at AnCan endorse Dr. T’s recommendations ….. patients don’t fail treatments; treatments fail patients!
We often speak about genomic testing to identify mutations! Why? – because identifying a mutation may open the possibility of using a ‘precision medicine’ that may come into play if you have difficult disease to treat …. for any type of cancer and other conditions.
Our Speaking Freely moderator, Rich Jackson, recently attended a support group meeting that received a presentation from INVITAE , a genomic testing lab that offers a comprehensive germ line or inherited genetic mutation test. Their tests may be offered at no cost depending on your disease and its demographics. For a full list of currently sponsored (free) tests, please visit https://www.invitae.com/en/sponsored-testing/ . You can also call Invitae at 800 436 3037.
Rich writes:
INVITAE is offering hereditary genetic (germ line) testing with a maximum out of pocket expense of $250.00 – and the cost could be $0.00. The genetic testing must be initiated by the patient who also names a doctor’s office that controls their Personal History Information. It is saliva based and tests for 47 specific markers including BRCA and Lynch Syndrome markers. Results are returned to the doctor to be communicated to the patient. INVITAE also provides access to genetic counseling.
Currently, prostate cancer patients qualify for free genetic testing provided they are Gleason 7 or greater at diagnoses (as may other conditions like pancreatic cancer and chronic kidney disease – see above for more information. rd).
INVITAE creates a ‘tag number’ to identify the sample that references back to the medical office, but for their purposes the information is anonymous. The company gathers large pools of patients for a given condition that they can then market to drug companies with the purpose of identifying prospects for clinical trials based on genetic markers.If a patient is a candidate, their doctor’s office will be contacted.
As explained by the regional manager w.r.t. prostate cancer:
‘A drug company would have a new drug to trial which they thought would work better with certain genetic markers. The company would contact INVITAE looking for men that matched. INVITAE would check their database, locate the identifiers of men that matched and contact the doctors office with the information. The doctor would contact you and pass on the information and how to contact INVITAE for additional information.’
One of my fellow Foundation Medicine Patient Community Council members, Karen Peterson, recently featured on the Today program speaking about how she self-advocated to receive genomic testing … that in turn led to very successful precision medicine treatment with an immuno-oncology drug. You can watch Karen here .
No matter what the chronic condition with which you live, this is a wonderful example of the value in informing yourself then advocating on your own behalf to your medical team. If AnCan’s tag line was not “Advocacy – Navigation – Support”, it would be “You Are Your Best Advocate!”
Btw, if you missed our recent webinar by Dr. Larry Fond on Immuno-Oncology, replay the recording and download the deck at https://ancan.org/5th-monday-webinar-dr-larry-fong-explains-immuno-oncology-mon-sept-30-8pm-edt/
AnCan’s good buddy and Advanced Prostate Cancer Virtual Group participant, Jerry Deans – who also happens to be Vice Chair of our partner UsTOO’s Board – has been using a wonderful service, Mercy Medical Angels for some time. He recently wrote to us:
I want people to know about a service that is being offered to those who qualify financially or are veterans. It’s called Mercy Medical Angels https://mercymedical.org/
They have transported me free of charge from Richmond, Virginia to NYC on two occasions.
One trip was for a clinical trial at NY Presbyterian for a Progenics 18F]DCFPyL PSMA PET scan and the second trip was to meet with Dr Charles Drake for discussion of next steps in my treatment. One of the pilots Royce Repka recorded this video.
Jerry recently published a book on his and his wife, Patsi’s struggle with disease and much more. The book is titled Lost But Not Forgotten – read the Customer Reviews and you’ll find this tome is full of hope!
Some of you may already know that AnCan is privileged to partner with the Male Breast Cancer Coalition to offer a men’s virtual breast cancer support group. While the incidence is much lower in men, all too often we forget that breast cancer hits men as well as women. If you heard our presentation on immuno-oncology this past week, you would have heard me remind our illustrious presenter that too!
My radar is now tuned to male breast cancer, so it is not too surprising I caught a report on Cancer Network today reporting a study that reveals that when compared to women men have significantly worse overall survival from breast cancer. And this is still true when disease demographics are matched up. Read the Cancer Network report here that links to the original study.
Buried in all of this is what I suspect to be the reason men fare worse than women ….. they are diagnosed later at a more advanced stage. That is through no fault of MBCC who strives to make us all aware of male breast cancer!
Some of you may already know that AnCan is privileged to partner with the