There was an immense amount of information given to us patients and caregivers yesterday. Well delivered and useful information. One cannot begin to list everything we heard. For that, you should watch the conference stream that is available on YouTube here:
This will be available for a long time, I think. There will be individual videos of the sessions as soon as they can be properly edited.
NETRF has initiated a podcast. If you like/listen to podcasts, it is available here: netrf/podcast and will soon be available at all of the normal podcast sources.
Bearing in mind that I have been to a number of conferences and seen many videos, much was not really new for me. Some things on my mind from the conference:
Most of us know that there is a familial connection for some NET patients. And, it seems there must be some genetic connection between tumors in a patient and tumors in another patient. Dr. Fishbein’s presentation clarified those thoughts for me, educated me more on genetics and especially brought home these points about whether to be tested for inherited genetic causes of NETs.
- PNETs (up to 15% inherited)
only test if multiple primary tumors in the patient or if another feature of a syndrome is present.
- Lung NETs and Small-Intestine-NETs (rarely inherited)
Only if another feature of a syndrome is present
- Pheo/Para (35-40% inherited)
Testing recommended for everyone with these NETs
- Medulary Thyroid Cancer (25% or more inherited)
Testing recommended for everyone with these NETs
Josh Mailman brought up the desirability of having a medical ID. He said the he wore his all the time. We have discussed this in our support group in the past but it bears repeating. Having readily available Medical Information may be very important in the case of an accident or crisis.
- Josh uses ROAD iD. It looks good to me.
There are many other companies offering Medical ID
American Medical ID
Creative Medical I.D.
of course, Amazon.com
and many others.
- For myself, I do not wear an ID bracelet, but, I do have an “In Case of Emergency” app on my smart phone which is with me most of the time. On my Android phone, I use Medical ID(Free): In Case of Emergency.
It can be set to show whether you are an organ donor, height, weight, medical conditions, allergies and reactions (“Epinephine only in Emergencies”), current medications and notes (here I list emergency contacts family, PCP, Oncologist, Health Insurance Plan and number, and pacemaker model.) This can be set to appear on your home screen even if it is locked, so that emergency people can access the info.
There are many of these apps available for both Android and iPhone.Always download only from Google or Apple stores.
Josh also led a great discussion on communication between patients and doctors. A very important point to me was how important the caregiver can be in the discussions.
It was a wonderful conference and I may add to these points later. If you went to the conference, don’t hesitate to add your take-aways in the comments below.
Thanks so much to Elyse Gellerman and Laran Hyder of the Neuroendocrine Tumor Research Foundation for providing such an informative and useful conference.
Thanks to the speakers for their wonderful presentations:
- Lauren Fishbein MD PhD, Endrocrinology
University of Colorado
- John Gerhold MD, Diagnostic Radiology
- Mark Lewis MD, Medical Oncology
- Eric Liu MD, Surgical Oncology
Rocky Mountain Cancer Centers
- Josh Mailman MBA, Cancer Patient Advocacy
- Charles Nutting DO FSIR, Interventional Radiology
Minimally Invasive Procedure Specialists
- Heloisa Soares MD PhD, Oncology
University of New Mexico
The conference videos will be available on the NETRF YouTube channel after they have been edited.
We had strong attendance and people stayed for the whole 8 hours!
Many people find it easier to watch video presentation than to read all of the technical things on the internet about neuroendocrine tumor and try to winnow out the fluff and nonsense.
We have added a video page always available from the main menu above, with youtube video playlists from a number of trusted sources. Our intent is to keep this up to date, so that the information is now and not stale.
We will certainly post the videos from the NETRF 2019 Patient and Caregiver Conference on August 10, 2019 as soon as they are available.
May we all have the best possible outcomes.
This from our friend and member Annie Farrell:
A subject to let our fellow NET travelers know about. I haven’t had tissue taken in a long time. Don’t think the biopsy two years ago of the golf ball sized tumor near my thyroid counts since they probably just biopsied it, saw it was NET and threw away the remains.
Donate Tumor Tissue to Help Research
Patients can donate tumor tissue through Pattern.org. Pattern.
Make sure to talk to your doctor several weeks in advance of your procedure about your plan to donate excess tumor tissue.
If you donate a portion of your tumor tissue to the NETRF Cell Line Project, you can also choose to donate tissue to the institution where you undergo your procedure.