We received this great email from AnCan community member Allen, with tips from a patient’s perspective on to best manage your medical team, as inspired by our webinar “Managing Your Medical Team“.
From Allen himself…
First, I live in Auburn, Alabama, which is a smaller college town with a population of about 68,000 residents, including about 30,000 students. Until recently, we only had 1 urologist for the entire county with 175,000 residents. I was diagnosed with PCa a year ago and started looking outside my community for more options.
I landed at Emory University last November, but was disappointed with the level of service and attention to detail. After they made several mistakes this spring, I fired my team at Emory in July and went with a private practice Urologist in Atlanta and Dr. John Sylvester, a prominent Radiation Oncologist in Sarasota, FL.
I am much happier with the team I have now, but I have found it a little challenging managing a team of doctors in 3 different states and various distances from my home. Following are some things I have learned:
1. Referrals are not as important as they used to be. Many doctors will accept new patients without a referral.
2. Choose the Doctor, not the Institution, to get a doctor you are comfortable with.
3. Insurance – make sure the doctor is in your insurance network and ask your insurer if procedures are covered so you are not blindsided.
4. Telehealth calls – ask if the Doctor can do them, especially across state lines.
5. Keep good notes! I found a notebook system has been a great help in organizing my notes, phone calls, and appointments.
6. HIPAA – If you are comfortable with emailing your records and questions, that is your decision. I would rather get my info into the right hands quickly than to worry about a lot of red tape. Doctors may be more restricted by HIPAA rules.
7. Patient Portals – Use them if you can. It is an excellent and secure way to access your health records.
8. List your questions for the Doctor prior to visits to make sure you cover your concerns. Be concise. (and always hand the doc a copy of your questions at the start of your consult – that way everything gets answered: AnCan)
9. Coordinate your Medical Team – Secure office and FAX numbers and other contact info and have that info available to other members of your team if needed. This can save a lot of time and prevent delays.
10. Insist on getting good Diagnostics Tests.
Thanks, Allen! And as we say here at AnCan…Be your OWN best advocate!
On August 31st, we had the utmost pleasure having an all-star line up of wonderful health care members of all different specialties to come together and discuss being part of a team, including how patients and care partners can work together!
On our panel we had Ladybird Morgan, RN, MSW (Mettle Health, executive director and co-founder Humane Prison Hospice Project), Dr. Aaron Boster (Neurologist, MS expert, The Boster Center for Multiple Sclerosis), Dr. Pamela Munster (Oncologist, UCSF Helen Diller Family Comprehensive Cancer Center), and Karen Schanche, LCSW (psychotherapist).
You’ll hear open and honest dialogue, and great answers to questions from our audience.
Watch this amazing webinar here:
Special thanks to Myovant Sciences – Pfizer and Foundation Medicine for sponsoring this webinar.
For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On August 25th, we had Shelby Hofer!
Shelby is an award-winning actress, writer and director, and the Co-director of Atlanta-based PushPush Arts (formerly PushPush Film & Theater) where she develops distinctive opportunities for artists to take risks, explore new ideas and collaborate. In addition to her noted stage and film work at PushPush, she has appeared on many stages locally, nationally, and internationally. In Atlanta, her many stage performances include seven productions at Horizon Theater, including the critically acclaimed solo comedy, Bad Dates by Theresa Rebeck. Her work also includes film, commercials, multimedia, teaching, writing, directing and stand up comedy. Her 2009-2011 performances of the solo show 101 Humiliating Stories garnered numerous awards including one of the Top 50 Shows of the Decade and a Best Actress award from Creative Loafing Atlanta in 2010.
She shared scenes from her one-woman show, High Risk, Baby! a comedy about the child within the mother, and Shelby’s personal voyage from infertility to motherhood, told from the perspective of both her 8-year-old and adult self. During the 75-minute autobiofictional ride, Lenora is on a mission, but her not-so-inner child is bursting with irreverent questions about DNA, ADD, quantum physics, boners & babies — where they come from, how they get here, and mostly, how she can get one. With hilarious and maddening advice from her sex-ed teacher, Elvis, Mr. Rogers, the mysterious Dr. Mark, and a bunch of ill-mannered “dolls,” Lenora and her Honey board a train for a wild adventure that leads to some unexpected destinations.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Here’s our latest proposal for AnCan supporters to raise a few bucks on our behalf ……. follow Brit Paul Taylor’s lead and raise money for us with a US Version Rude Names fundraiser . And to heck with a moped … we have a few bigger bikes in this Group.
For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=... if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
No meeting next week in the 5th week of the month, but we have two webinars:
Managing Your Medical Team – 8.00 pm Eastern, Tuesday, 8/31 Register at https://bit.ly/3jGNN1V
A Layman’s Guide to Medical Research Language, Wednesday, 9/1 at 8.00 pm Eastern at https://www.gotomeet.me/AnswerCancer ; no pre-registration required.
Editor’s Pick: Drug holiday suddenly becomes an option ….. yes or no?? (rd)
Topics Discussed
Low PSA, hi Gleason man goes through many treatments; who to see now Dr. Alicia Morgans has moved on; considering Intermittent Hormone Therapy; recurrence rears it’s head – Dr. M has moved on; “I’m mCRPC” – what does that open up?; Provenge; carcinoembryonic marker …. for PCa?? ; handling neuropathy; one of our regualars faces shoulder surgery
Chat Log
Dell (to Organizer(s) Only): 3:09 PM: Off Eligard since Dec 2020, PSA less than 0.1 and with a rising testosterone. Last week the TS was 369 and this was the first increase in PSA to 0.5. Just looking to know who is the new recommendation for Chicagoland (Northwestern) with Dr Morgans gone.
Joe Gallo (to Everyone): 3:12 PM: A drop-in presentation sponsored by the AS group. Open to all on a drop in basis at Barniskis. First Wednesday program scheduled for 8-9:30 p.m Eastern on September 1, 2021 is titled “A Layperson’s Guide to Reading Medical Research” Aurora Esquela Kerscher, PhD, is an associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center, Eastern Virginia Medical School in Norfolk, Virginia.
Larry Fish (to Everyone): 3:15 PM: where those spots all on Prostate – or had it already spread. So why radical prost…
Joe Gallo (to Everyone): 3:16 PM: Also a webinar Webinar: Managing Your Medical Team on Tuesday August 31st at 8:00-9:30 pm ET. Register now: https://bit.ly/3jGNN1V Larry Fish (to Everyone): 3:20 PM: chemo?
Herb Geller (to Everyone): 3:20 PM: Genetics?
Paul Freda (to Everyone): 3:20 PM: What was the name of that Firmagon oral substitute ? Anyone ?
Herb Geller (to Everyone): 3:20 PM: Orgovyx
John Antonucci (to Everyone): 3:21 PM: AKA relugolix
Joe Gallo (to Everyone): 3:21 PM: Daily pill
Stan Friedman (to Everyone): 3:21 PM: genetic testing?
Larry Fish (to Everyone): 3:23 PM: So what is he doing now – exaCTLY? what trials? chemos? ADL? exercise?
AnCan – rick (to Organizer(s) Only): 3:27 PM: Kelly may be good BUT how come no chemo???
Larry Fish (to Everyone): 3:28 PM: wow – pretty knowledgeable! how is his Quality of life now?
Pat Martin (to Everyone): 4:05 PM: Any doubling time
AnCan – rick (to Everyone): 4:07 PM: Pylarify 18F DcfPyl PSMA test. Made by Lantheus …. https://pylarify.com
Pat Martin (to Everyone): 4:12 PM: I’m sorry for my ignorance…in the Northwest we have a Tri-Cities but no Quad-Cities. What are they?
Herb Geller (to Everyone): 4:13 PM: I just looked it up. It is a group of cities on the Illinois-Iowa borde
Pat Martin (to Everyone): 4:14 PM: Thanks
Les Schjelderup (to Everyone): 4:15 PM: That is where I live also.
Pat Martin (to Everyone): 4:19 PM: My experience…25 months of ADT Lupron and Abiraterone. Had a vacation of several months. PSADT was 1.5 months and had an Axuminn scan to pinpoint the problems. Then went back to ADT, Eligard and Abi. Way fewer side effects and better energy.
John Ivory (to Everyone): 4:19 PM: Thanks Pat
Jake Hannam (to Organizer(s) Only): 4:35 PM: oral chemo? cyclophosphamide? not a taxane – mght work for him with lower PSA than mine
Jim Ward (to Everyone): 4:42 PM: Can someone spell the name of the report that was referenced, beginning with a “k”?
John Antonucci (to Everyone): 4:43 PM: caris
Jim Ward (to Everyone): 4:43 PM: Got it – thanks!
AnCan – rick (to Everyone): 4:43 PM: Caris ……. it’s a competitor to FMI
Paul Freda (to Everyone): 4:47 PM: How to spell lutecian ? Anyone ?
Len Sierra (to Everyone): 4:47 PM: Lutetium
Herb Geller (to Everyone): 5:04 PM: I gotta go soon
Stephen Saft (to Everyone): 5:07 PM: I am 6’5″ and 225lbs and ask about this all the time. It is mostly ignored by the Drs i have spoken to. Doesn’t make sense to me.
