We (Colorado NETs Support Group) had our quarterly meeting yesterday. There were twelve attendees. Two of the attendees were new to our meetings.
We had no speaker, so we all spoke. It was a sharing meeting. Each person shared their history and experiences with the disease as much as they cared to share. There was an amazing amount of information about the disease, the treatments, the patient’s experience.
The value of such meetings is immense! Each of us could comment on how hard it is to experience a disease when no one believes you nor can medical people properly diagnose it for years. Even after a proper diagnosis, it can be years before you meet someone with the disease and a shared experience. Because the tumors often secrete hormones that cause us to look well externally, it can be difficult to convince others that we feel terrible internally.
A sharing meeting allows us to understand that all of us go through these problems…
And we survive! One of our members yesterday was diagnosed 40 years ago! The sharing allows us to talk to people with shared problems and I find it to be cathartic.
At the end of the meeting, we had veggie snacks, brownies, pumpkin pie and drinks. Many thanks to those who provided these refreshments. Also, thanks to Presbyterian/St. Luke’s Hospital for providing a conference room for the meeting. That is quite important because we are not an official non-profit and we do not collect dues.
Again. thanks to all and
May we all have the best possible outcomes.
Between Oct 1, Rare Cancer (Awareness) Day and Nov 10, NET Cancer (Awareness) Day, The Colorado NETs Support Group is asking for support for Healing NET Foundation in our mission to optimize care for the NET community.
This fundraiser originated from an idea Lela had based on a recent school band fundraiser that she saw. Her idea is: 20 reasons to support Healing NET with a $20 donation between now and November 10.
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.
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.
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.
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
Consenting to donate excess tumor tissue, from a biopsy or surgical procedure, helps advance our knowledge of NETs by providing researchers with an essential resource. See our FAQs about tumor tissue donation. (MORE)
Patients can donate tumor tissue through Pattern.org.Pattern.org links to an electronic consent form where patients can learn more about contributing. Should a patient decide to provide consent, Pattern.org arranges for excess tumor tissue to be shipped from a patient’s institution to the NETRF cell line research laboratory.
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.
Thanks Annie for valuable information in the fight against NETS!