Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 4, 2021
(Apologies for the multiple confusions re. links and disappearing videos on YouTube! Thanks to RS for the heads-up and hopefully we have resolved and this works fine: rd)
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Lots of talk this week about switching docs and when to get a GU med onc involved.(rd)
Topics Discussed
Chemotherapy and mood swings; exercise duing chemo; can you avoid HT with advanced disease?; when’s the time to switch to a GU med onc?; Pylarify vs Ga68 PSMA R11; with advanced disease, is 0.298 a low enough nadir?; 2nd pembro dose after cytokine storm; pancreatic spot stable; 1st cabazitaxel tolerable; daily prednisone w. chemo???; GU med onc refuses to measure testosterone; using ibuprofen
Chat Log
Len Sierra (to Everyone): 5:37 PM: Genitourinary
Alan Moskowitz (to Everyone): 5:51 PM: Just an update on the availability of Pylarify PSMA scans, Mt Sinai Hospital in NYC has just received written confirmation (Wednesday Sept 29) that Medicare will cover the standard 80% of the cost. They are currently scheduling. You can find out more by calling their PET/CT Nuclear Medicine lab at 212-241-7775. I was also advised that Medicare supplement insurers legally must pay their share if Medicare covers their share.
Stephen Saft (to Everyone): 5:52 PM: That is great! Thanks for the information.
Stephen Saft (to Everyone): 6:16 PM: I agree that people with prostate cancer should go to a Medical Oncologist that specializes only in Prostate Cancer. They are conversant with all of the research and new developments. There are new developments every day.
Stephen Saft (to Everyone): 6:18 PM: What is an R11 Scan?
Alan Moskowitz (to Everyone): 6:23 PM: Rick said the R11 relates to the Gallium PSMA scan available only in 2 California sites.
Stephen Saft (to Everyone): 6:30 PM: I heard that. I believe that Gallium 68 is the more common name for that scan. (NB…. there are several different ligands married to Ga68 that seek out PSMA. R11 is the FDA approved one at UCSF and UCLA. There are other ligands like R617 still awaiting approval. rd)
Joe Gallo (to Everyone): 6:32 PM: PSMA PET PYL is/will be more available as compared to Gallium-68 which requires a radionuclide generator on site due to limited half-life.
Jake Hannam (to Everyone): 6:33 PM: Good point, Joe.
Ted Healy- Portland, OR. (to Everyone): 6:58 PM: Gotta go folks. Thank you be safe!
Rick Davis (to Everyone): 6:59 PM: tx for your advice to Christo Ted
Joe Gallo (to Everyone): 7:06 PM: Nick is Dr. Berengi’s admin. He will give you the details and schedule. He is a very easy going guy. Probaby easier to contact. However Dr B is also a very personable guy and willing to talk.
Herb Geller (to Everyone): 7:18 PM: I gotta go. See you next week.
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 28, 2021
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
…. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
…. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat .
Editor’s Pick:On a serious note, the discussion around how much HT with salvage radiation. On a fun note, Rusty’s experiecne at Reel Recovery and Jerry D’s fish take the bait! (rd)
Topics Discussed
Community cancer center provides sub-optimal advanced care; what’s the right duration for hormone therapy with salvage radiation; BAT and Xofigo whilst waiting for Lu177; switching docs … and will IHT be next?; wack-a-mole spot RT vs systemic treatment; Double J stents anyone? (let us know at info@ancan.org); visiting the military golf course; fun cancer retreats
Chat Log
Alan Moskowitz (to Everyone): 3:11 PM: This is the radiology lab that does Pylarify scans. https://www.woodburnmed.com/our-services. James Marshall, their coordinator said they have worked out the requirements and details to obtain Medicare coverage, and for major secondary insurers. They have done 70 Pylarify scans so far and consider themselves as leading edge. they are in Virginia, near the Washington DC area. They were the first to do Axumin scans in the DC area.
Herb Geller (to Everyone): 3:13 PM: I looked at their web site and they seem to be well prepared
Joe Gallo (to Organizer(s) Only): 3:26 PM: If Gary is a Vet he can still get the PSMA PET Pyl at no cost at the LA VA (UCLA)
Herb Geller (to Everyone): 3:29 PM: Gary could easily get to National Airport and then to the center in Annadale for a scan
Pat Martin (to Everyone): 3:34 PM: When I went off 2*5; I went cold turkey. Did not seem to cause any problems. Sometimes I just ignore side effects
AnCan – rick (to Everyone): 3:35 PM: Pat – you are very lucky. I had a friend who lost 30 lbs or more and lost his appetite for months.
Bruce Bocian (to Everyone): 3:40 PM: I got my G68 at U of M
Jake Hannam (to Everyone): 3:43 PM: Next meeting is Monday at 8:00 PM EST
Pat Martin (to Everyone): 3:46 PM: Dr. Lin is my Uro/Onc. I have the utmost regard for him.
Ben Nathanson (to Everyone): 3:50 PM: Assessing the Role and Optimal Duration of Hormonal Treatment in Association with Salvage Radiation Therapy After Radical Prostatectomy: Results from a Multi-Institutional Study https://www.europeanurology.com/article/S0302-2838(19)30112-5/fulltext (AnCan has full text – info@ancan.org)
Herb Geller (to Organizer(s) Only): 3:55 PM: Thanks, Ben. Very nice study.
David Muslin (to Everyone): 3:55 PM: Mark, I know how hard it is to be on ADT however, it’s great insurance not to have a recurrence.
Joe Gallo (to Organizer(s) Only): 3:56 PM: Off to the 50 Vets call. Goodnite.
Pat Martin (to Everyone): 3:59 PM: I have a similiar Dx with a Gl-9(5+4) in 2014, radiation. Was on ADT for 30 months. A vacation then PSA started rising. Now I’m back on ADT. Have Keytruda as a back up.
Herb Geller (to Organizer(s) Only): 4:00 PM: I’m on denosumab and bone density actually went up in a year.
AnCan – rick (to Everyone): 4:13 PM: Schweitzer is good, younger GU med onc. He knows AnCan – has done a seminar.
Pat Martin (to Everyone): 4:16 PM: I’ve mentioned AnCan to him a lot of the times I’ve seen him…4x a year for the last 7 years.
AnCan – rick (to Everyone): 4:23 PM: Gents …… we featured an article on agonist vs antagonist LHRH and their CVD impact back in 9/14/21 Reminder
John Ivory (to Everyone): 4:49 PM: I was asked to be an Orgovyx ambassador, but they wanted me to give access to my medical records for the agency that runs it; I decided to pull out. Didn’t want non-clinicians in my medical records
On September 30th, we had the absolute pleasure of spending the evening with Nancy Novack, founder of Nancy’s List. Nancy’s List is a comprehensive listing of integrative, financial and complementary listings to ease the burden for patients and caregivers navigating the cancer path.
In the 15 years Nancy Novack has been compiling numerous linked resources on Nancy’s List, no one has ever asked Nancy about her own personal favorites, until AnCan did! We had a wonderful evening of sharing resources (many of them free!), stories, and wait until you hear what Nancy thinks the oncology community needs more of.
On September 29th, we hosted the webinar “Prostate Cancer – Active Surveillance and More…Past, Present, and Future“.
Featuring Laurence Klotz, MD, a pioneer in developing active surveillance and other areas dealing with prostate cancer, told a webinar about his journey as a urology researcher at Sunnybrook Health Sciences Center in Toronto. With over diagnosis and overtreatment of prostate cancer in the 1990s with the introduction of screening PSA testing, he and his colleagues set out to develop a new strategy of close monitoring of men with low-risk Gleason 6 prostate cancer.
He sees rapid advance of introduction of highly accurate “liquid biopsies” that focus on DNA shed in urine by tumors. He sees great potential in focal therapy.
Watch it all here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We apologize, but slides are not available for this webinar.
For information on our peer-led video chat PROSTATE CANCER 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.
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 20, 2021
3 survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
….. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Changing your doc comes up multiple times this week – make sure you find one with whom you connect! One other takeaway – don’t test if it don’t make a difference! (rd)
Topics Discussed
Embr’s Wave – now and agin later; Testosterone returns quickl for man in 70’s; treating metastatic disease in N. Florida; Pylarify reimbursed by Medicare; Bipolar Androgen Therapy; ‘ABC’ man dives into cabazitaxel; chemo side effects; Amazon Smile pitch; more WAVE; any relationship between abi and highh clacium?; PSA fluctuatuing on abi; what’s next? – cabazitaxel or Radium 223; peripheroal neuropathy and Vit B6; switch docs to find a good fit with YOU!
Chat Log
Joe Gallo (to Everyone): 5:48 PM: Eleni Efstathiou, Houston Methodist; Paul Corn MD Anderson
Joe Gallo (to Organizer(s) Only): 6:09 PM: She could also do a preview interview via telemed Dr. E website says she will accept video visits
Rusty (to Everyone): 6:14 PM: Off to Fly Fish thanks to Reel Recovery. A dream trip to northern ME all comp. via Reel Recovery. Check it out. I believe this trip would cost $2,400 if paying your own way. 3 days and 2 nights, everything included, even a personal guide and instructor. All for guys living with cancer.
Len Sierra (to Everyone): 6:16 PM: I’ve heard of Reel Recovery, Rusty, and I’ve been wanting to do it, too. Sounds like a great program!
Herb Geller (to Everyone): 6:16 PM: Sounds great,
AnCan – rick (to Everyone): 6:21 PM: ABC Club …. Anything But Chemo
Maria Cintia (to Everyone): 6:26 PM: thanks for let me know, I call tomorrow
3 survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Loads of cutting edge this week – cytokine storms from pembro or just an infection??? Two men fare diferently with Lu177 PSMA. And heed the warning – don’t pussyfoot when PCa first recurs – it may return.(rd)
Topics Discussed
Caregiver discusses 50+ husband’s metastatic disease; slow moving recurrence requires RT a SECOND time; exercise via a PT???; cytokine storm or just an infection – be sure before more pembro; two experiences from different Lu177 trials; is Pylarify Medciare approved?; agonist ADT resumed after 12-mo holiday with no buffer; low testosterone/metastasis are formula to get Covid booster
Chat Log
Bruce Bocian : 3:21 PM: Berger is our friends Urologist
Jake Hannam : 3:30 PM: Provenge since PSA is low right now?
Stephen Saft (to Everyone): 3:54 PM: Didn’t someone say they have been tolerating 20 Docetaxel treatments because of physical exercise
Len Sierra (to Everyone): 3:55 PM: That would be Iron Man Ken Anderson
Herb Geller (to Everyone): 3:56 PM: Exercise Preserves Physical Function in Prostate Cancer Patients with Bone Metastases. Galvão DA, Taaffe DR, Spry N, Cormie P, Joseph D, Chambers SK, Chee R, Peddle-McIntyre CJ, Hart NH, Baumann FT, Denham J, Baker M, Newton RU. Med Sci Sports Exerc. 2018 Mar;50(3):393-399. doi: 10.1249/MSS.0000000000001454.
Richard G. (to Everyone): 3:58 PM: Is the value of exercise more for the cardio (running)or for the strength (weights)? Probably both but does one win out over the other? rg
Len Sierra (to Everyone): 3:59 PM: Both are very important/
Richard G. (to Everyone): 3:59 PM: Was John’s recurrence after 10 years after RP caught by having PSA test every 3 months for the 10 years? rg
Maria Anderzunas (to Everyone): 4:00 PM: I wonder that same thing as Richard G with the exercise, cardio or streghth , which is best, both would be optimal I’m sure.
John Vandenberg (to Everyone): 4:02 PM: yes, PSA test every 6 months for 10 years before recurrence; must leave – shared computer – thanks very much I’ll be calling in – John
Richard G. (to Everyone): 4:04 PM: tks Richard G. (to Everyone): 4:19 PM: what is the trial name? what is the term sidocan storm?
John Antonucci (to Everyone): 4:20 PM: cytokine
Len Sierra (to Everyone): 4:20 PM: cytokine storm
Richard G. (to Everyone): 4:20 PM: tks
Herb Geller (to Everyone): 4:21 PM: Cytokine storm is a result of a massive reaction of the immune system to an insult. Cytokines are hormones released from immune cells that signal to other immune cells, but also affect other cells.
John Antonucci (to Everyone): 4:22 PM: I don’t think it can account for the destrution of the platelets???
Peter Kafka (to Everyone): 4:28 PM: The Keytruda test: IMUDX swab test The resuts came from Soomi Fabian-Aguilar. Indicated I was “Low Risk” for Keytruda. Ordered by Dr. Mark Scholz of Prostate Oncology Specialists. ImuDX Testing – MiraDxhttps://miradx.com › imudx-testing This test predicts the risk of developing immune related adverse events in response to anti-PD1 or anti-PDL1 treatment. Already performing ImuDx Testing? ImuDx …
Stephen Saft (to Everyone): 4:32 PM: is there a possibility that Lu 617 will be approved soon?
Len Sierra (to Everyone): 4:33 PM: John Antonucci: Hematological Side Effects of Immune Checkpoint Inhibitors: The Example of Immune-Related Thrombocytopenia https://www.frontiersin.org/articles/10.3389/fphar.2019.00454/full
Herb Geller (to Everyone): 4:33 PM: All the information we have says that early next year.
Alan Moskowitz (to Everyone): 4:33 PM: Do we know when Medicare will cover Pylarify? (DCF-Pyl – Psma scan)
Len Sierra (to Everyone): 4:35 PM: Alan, I don’t think that is known.
John Antonucci (to Everyone): 4:35 PM: thanks Len got the article
Alan Moskowitz (to Everyone): 4:36 PM: Len – I had heard that possibly it could be covered now, in a private radiology setting vs in a hospital. But have not been able to confirm.
Len Sierra (to Everyone): 4:37 PM: Hmm, that’s seems odd, Alan. You’d think it would be the opposite.
Alan Moskowitz (to Everyone): 4:38 PM: Len – something about ‘pass through’ status is required for hospitals to bill it. I had talked to a rep from the company that makes it, Lantheus, and there was some vague comments that the company was possibly reimbursing radiology centers for the difference in cost for pylarify vs generic tracer. Again – not so clear.
Richard G. (to Everyone): 4:44 PM: Why not a psma pet scan for Alan M?What is the other name for PSMA petscan? “pilarafy”?
Len Sierra (to Everyone): 4:50 PM: 18F-DCFPyL
Alan Moskowitz (to Everyone): 4:53 PM: Richard G – I have also searched for clinical trials for psma scan – but having been in 2 of these already , i have not found any that is relevant.
ALFRED LATIMER (Private): 4:55 PM: I need to leave. See you next time. Thanks again for all your and groups help
AnCan – rick (to ALFRED LATIMER): 4:55 PM: pleasure – stay in touch
3 new survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=ancan
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomatitis/?r=ancan
Editor’s Pick: We discuss ‘compassionate use’ of Lu177 this week … and much more! (rd)
Topics Discussed
Complications around follow up after R2 Lu177 trial fails; Compassionate Use; Tx options after 12mo. drug holiday; Orgovyx Ambassador; rashes from both Lupron and Orgovyx; pushback on getting testosterone tests; post-RP hernia; Embr experience; peripheral neuropathy issues; doctor willing to push darolutamide; long term chemotherapy use; processing information on reports from pathologists and radiologists; BiTE AMG 509 experience; cytokine storm report
Chat Log
Jake Hannam (to Everyone): 7:39 PM: cyclophospamide with steroid
Jake Hannam (to Everyone): 8:11 PM: my oncologist recommended Viamin B6 for PIN
Jake Hannam (to Everyone): 8:46 PM: AMG 509 is a bispecific antibody that binds to two different proteins; one found on the surface of cancer cells and one on the surface of T cells in the immune system. Researchers think that AMG 509 may strengthen the immune system’s ability to fight cancer cells. It is given intravenously (by vein).
John Antonucci (to Everyone): 8:47 PM: thanks Jake
On September 1st, we had Aurora Esquela Kerscher, PhD (Associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center) offered strategies to help laypeople understand medical research articles.
Laypeople may want to read medical journals to find out the latest research in the media, including findings that might impact their care. Dr. Kerscher said it can be hard to track down and expensive to obtain papers. She said Google Scholar at https://scholar.google.com/ and PubMed.gov can lead to pertinent papers. ResearchGate.net can help link people to authors, who might be willing to send interested parties their papers.
In this presentation, Dr. Kerscher gave an anatomy of a research paper, focusing on a new study on how exercise can help prostate as well as cardiac health in men on active surveillance.
She also provided a step-by-step guide on how to quickly read/skim a research paper.
“Ask yourself – WHAT IS THE BIG QUESTION?”
–What problem is being addressed?
–Then ask yourself – Why should I care?
Her final helpful tips were:
• Read slowly, take notes as you read,
• Question assumptions, the importance of the problem.
• Write questions to track what you don’t understand. Write down and translate jargon in Google.
• Sometimes what is not in the paper is more important than what is in it.
• Is there something the authors have overlooked?
• Don’t let ideas or design details pass until you understand them.
• Do not assume the paper is correct, even if published in a prestigious peer-reviewed venue
Watch this extremely information presentation here:
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
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!
