Dr. Brian Helfand, (Head of Urology at NorthShore University HealthSystem) gave the second webinar in the four-part series called “Active Surveillance & Beyond” on September 29, 2020. His topic was genomics, genetics, and decision-making in active surveillance. He explains the pros and cons of the leading tests in the field and who may be a candidate for such testing. We want to thank Dr. Helfand for taking the time to answer several of our attendees’ questions at the end of his excellent presentation.
Also making an appearance, our AS Virtual Support Group moderators and community members, Joe Gallo, Elliot Kerman, Howard Wolinsky. Including special guests: Jim Schraidt (Chairman of Us TOO), and Beau Stubblefield-Tave (Executive Director at Us TOO).
Watch this fascinating and informative webinar here:
Our “Active Surveillance & Beyond” webinar series here at AnCan has been wildly popular. With top medical experts in AS giving incredible presentations and answering your questions, it’s a hit for a reason. We had the pleasure of having Dr. Peter Carroll (Department of Urology, UCSF), who is considered a pioneer in AS, start us off with a blast!
Hear his thoughts on biopsies, who best qualifies for AS, and how he uses AS in his own practice. We want to thank Dr. Carroll for answering so many of our attendees’ questions. You’ll also see our own AS Virtual Support Group moderators and community members, Joe Gallo, Mark Lichty, Elliot Kerman, Howard Wolinsky, and special guest: Jim Schraidt, Chairman of USTOO.
On our second edition of The TALK, a series of webinars addressing how parents and kids of every age speak to each other about their health conditions, we had the pleasure of having the ovarian cancer community share their perspectives with us.
On Wednesday July 29th, with an excellent discussion moderated by Dr. Pamela Munster (co-leader of the esteemed UCSF Center for BRCA Research), and top medical experts in the field Dr. Jocelyn Chapman (Board certified Gynecologic Oncologist at UCSF), and Beth Peshkin MS, CGC (Professor of Oncology and the Director of Genetic Counseling at Georgetown Lombardi Comprehensive Cancer Center).
We were so thrilled to have our own Ovarian Cancer Virtual Support Group moderator Ilana Feuchter (of NOCC) welcome our guests and attendees. Most important of all, we had wonderful family members of all kinds share vulnerable and honest conversations about their own “talks”. Maria Ciesla and her daughter, Alex Cornwell. Ni Guttenfelder, and her sister Leigha. Elena Solomon, and her daughter Liz Solomon. And the McConnell family, with Craig, Ross, and Corey.
There were many laughs, tears, and heartfelt moments. Including great answers to your questions by our experts. We want to thank our co-sponsors Sharsheret, NOCC (National Ovarian Cancer Coalition), FORCE (Facing Our Risk of Cancer Empowered), and UCSF Helen Diller Family Comprehensive Cancer Center.
Watch this incredible webinar, here:
For information on our peer-led video chat OVARIAN 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.
Peter Kafka’s musing this week, looks at how invention and innvation can be a two-dged sword.
Please bear with me on these thoughts, because I don’t know where I am going but I think it important to consider. Yesterday my son and I went out to change the brake pads on my Toyota. I am the middle man in a three-generation tradition of shade tree mechanics. The notion is that “if it was put together by a human then it can be fixed by one”. I believe that many men carry the DIY gene, and women too. This notion changed a bit when our creations became super complex and computerized and we had to seek expert help in certain repairs that were beyond the scope of a You Tube video. But still the tradition carries on. The DIY gene has not mutated.
When it comes to the break down of the human body, or the interruption of certain natural cycles in the world at large this “Do It Yourself” gene springs into action. As a result, truly amazing achievements have been made in the field of medicine and science in recent years and there seems at times to be no end in sight. The notion is that if we “put our minds to it” we can fix anything. This is currently being played out with great intensity to find a vaccine for Covid-19.
I know my life has benefitted from the many advancements of science and medicine. I am not complaining. My life has been extended, like many millions for whatever purpose. But like many things, it is a two-edged sword. The extended life expectancy and health of human beings on this planet has been at the expense of many other life forms in the plant and animal kingdoms. This thought should give anyone great pause. Perhaps I should leave it there. Make of this paradox what you will.
Eleni Efstathiou MD, PhD
Associate Professor, Department of Genitourinary
Medical Oncology, Division of Cancer Medicine,
The University of Texas MD Anderson Cancer Center
Tomasz Beer MD, FACP
Deputy Director, OHSU Knight Cancer Institute
Scott T. Tagawa MD, MS, FACP
Professor of Medicine and Urology, Weill Cornell
Medicine; Physician, NewYork-Presbyterian -Weill Cornell Medical Center
David VanderWeele MD, PhD
Assistant Professor of Medicine, Northwestern
University Feinberg School of Medicine; Medical
Oncologist, Lurie Cancer Center at Northwestern Memorial Hospital
Atish D. Choudhury MD, PhD
Co-Director of the Prostate Cancer Center,
Dana-Farber Cancer Center
Sometime over the past month, a man attended one of AnCan’s video chat, virtual support groups with a big problem on his mind. This man had been on hormone therapy – more precisely androgen deprivation therapy, for close to 12 months and he was suffering, physically and mentally from having little or no testosterone in his body. He was fatigued, had “Lupron Brain” – brain fog, and was emotionally on the edge … all the time. Moreover, & understandably, he didn’t want to let his employer and workmates know he lived with advanced cancer. Result ….. he unintentionally upset colleagues, couldn’t complete his work tasks and …. received an offiicial employment warning.
This fellow came to us for support, and the best we could do was to suggest he speak to Human Resources under confidentialty; and/or seek an employment lawyer. What we didn’t know is that there is a non-profit out there to assist … and in their own words, this situation is their bread and butter.
Cancer & Careers is dedicated to tackling cancer-related problems in the workplace. Whether involving healthcare, employment, job seeking, employment law, Covid, or working through treatment – Cancer and Careers will help you resolve any of these issues and more, both one on one and through webinars, handouts, and other educational supplements. Check out their website and don’t hesitate to reach out to them if you have a question that needs answering.
What’s more, Brian Morvant, a senior program coordinator at Cancer & Careers told us just today in a presentation for our Male Breast Cancer Virtual Support Group that Cancer & Careers still offers a maximum grant of $500 per family experiencing financial challenges … apply now!
Make sure you’ve signed up for our upcoming Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions. Register by clicking on the selected link below.
Editor’s Pick: This week’s group is dominated by U-60 men diagnosed denovo metastatic – we speak to FIVE (5)!!!!! USPSTF HEAR THAT!!! A good discussion on abi side effects … AND A HYPERACTIVE CHAT LOG!!
Topics Discussed
Misdiagnosed 1st time leads to denovo Mx Dx for U-60 man 2nd time; post-RP spread managed for 10 yrs w/o HT; 25+ yrs living with G9 advanced PCa!; Keytruda trial for MSI stable man post-olaparib; Rusty’s 1st Football game post-HT!; abiraterone side effects; blood pressure issues from 2nd lin anti-androgens; glucocosticorteroid + enz trial; enz + LHRH for another U-60 denovo Mx man; yet another U-60 denovo Mx man starts RT; enz preferred with heart disease; cancer or sarcoidosis?
Chat Log
scott (to Everyone): 5:03 PM: Sylvester how are you doing?
David Muslin (to Everyone): 5:21 PM: Nicklas Robert Pfanzelter, M.D. (89 ratings) NorthShore Medical Group 847.503.1000 Conditions Adrenal Cancer, Basal Cell Cancer (BCC), Bladder Cancer, Genitourinary Cancer, Kidney Cancer, Lung Cancer, Melanoma, Merkel Cell Cancer, Prostate Cancer, Testicular Cancer, Transitional Cell Carcinoma, Urinary Tract Cancer Procedures Chemotherapy
John I (to Everyone): 5:26 PM: genitourinary
Len Sierra (to Everyone): 5:26 PM: GU = Genitourinary Oncologist
John I (to Everyone): 5:26 PM: (GU) medical oncologist (GU Med Onc)
Joel Blanchette (to Everyone): 5:27 PM: He is close to Alicia Morgans, GU Medical Oncologist
Mark Perloe (to Everyone): 5:27 PM: Alicia is great.
AnCan – rick (to Everyone): 5:28 PM: We are getting there gents …..
John I (to Everyone): 5:28 PM: She’s my doc. very good doc, good at answering questions, taking her time
Mark Perloe (to Everyone): 5:28 PM: I’d also consider OncocyteDX liquid biopsy as up to 50% of the mutations are limited to the tumor and are not inherited.
Jerry Pelfrey (to Everyone): 5:28 PM: do not forget Proton pencil beam as a choice
Ken A (Private): 5:29 PM: advise please on under 60 group
Len Sierra (to Everyone): 5:29 PM: Lynch Syndrome
Mark Perloe (to Everyone): 5:30 PM: SBRT with ViewRay, a device which marries MRI and Linear Accelerator can get treatment for five times. Visit ViewRay.com
Ken Doyle (to Everyone): 5:31 PM: Ken Doyle Info. Age 75, mPC after prostate removal in 2010
Herb Geller (to Everyone): 5:34 PM: BRCA1 or BRCA2
Jake Hannam (to Everyone): 5:34 PM: BRCA mutation
John I (to Everyone): 5:36 PM: I also had a good experience with Russell Szmulewitz at UChicago too–had to change because of insurance network changes
Carl Forman (to Everyone): 5:41 PM: In case I don’t have a chance to speak tonite, I wanted to throw out to the group if anyone has had experience with Keytruda, which has been dicussed by my Oncologist as a clinical trial treatment option for me.
AnCan – rick (to Everyone): 5:41 PM: Big subject Carl – should be discussed.
Ken A (to Everyone): 5:42 PM: Carl – Paul has advise me that it was in my future…
John I (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:47 PM: Axumin
Jake Hannam (to Everyone): 5:49 PM: PSMA
scott (to Everyone): 5:52 PM: gentlemen: I have to go at 6 pm to make dinner….see you on another call
Ken A (to Everyone): 5:53 PM: hey Scott lets try that lunch once again.
Peter Kafka (to Organizer(s) Only): 6:00 PM: Wow! A 30 year journey as a GL-9 with BRCA +, A poster man! I hope I get half that kind of run.
Ken A (to Everyone): 6:02 PM: Dang I agree 100 percent…..
Peter Kafka (to Organizer(s) Only): 6:34 PM: Just letting you all know that I spent 2 hours on the phone with my buddy Mr. Sharma in Delhi, India the other day. This was my 2nd round with Del Service from India. I think we got my sound problems resolved this time. I now have a 1-year service contract and Sharma recommended that I check in at least every 2 months if not every month for a “tune up”.
AnCan – rick (to Everyone): 6:40 PM: Theraworks
John I (to Everyone): 6:42 PM: spelled theraworx
AnCan – rick (to Everyone): 6:42 PM: tx John
Jeffrey Bates (Private): 6:43 PM: Thanks John
Jeffrey Bates (Private): 6:54 PM: who is the balding man with glasses an grey/black goatee. he is sitting on couch with blue blanket behind him and a window
AnCan – rick (to Jeffrey Bates): 7:02 PM: John Ivory also young like you; in Chicago.
John I (to Everyone): 7:02 PM: Yes–you saw it?
AnCan – rick (to John I): 7:03 PM: Please connect with Jeff B
Dr. Michael Morris is a world-renowned medical oncologist and section head of Memorial Sloan Kettering’s GU Oncology department. In this hour long webinar, sponsored by the National Alliance of State Prostate Cancer Coalitions, Dr. Morris clearly explains the great advance in scanning technology that PSMA PET imaging represents. He compares it to other scanning technologies in a way that will finally make sense to you. He states that he expects PSMA agents to be approved by the FDA for the detection of prostate cancer recurrences before the end of this year.
When you click on the link, you may be required to register yourself in order to view the webinar. This simply requires you to enter your name and email address. Enjoy and be informed!
Editor’s Pick: Brain fog is a familiar subject to many who follow our group … today we pick it apart!
Topics Duscussed
Clinical trial ins & outs; lymphedema, edema and acupuncture; PSMA scan availability; germline mutations; colonoscopies and anaesthetic; mangaing progression with spot SBRT; combating brain fog; port installation; SBRT radiation to the gland; PSA nadir; abi, enz and hypertension..
Chat Log
John I (to Everyone): 3:35 PM: Haha, thanks–it’s the sweatshirt for the cold Chicago winter 🙂
John I (to Everyone): 3:37 PM: It’s FANTASTIC right now. Sitting outside because there will be few days (or hours?) left that are warm
John I (to Everyone): 3:38 PM: Nice fall colors too–will probably peak in the next week
Len Sierra (to Everyone): 3:38 PM: I have the sweatshirt, too. Very warm and soft. Nice job, Peter and Jeffrey, his son.
Lou (to Everyone): 3:55 PM: going to conference on ui and ed @7
Peter Kafka (to Everyone): 4:03 PM: I have two sweatshirts in my closet and have to wait until February before the weather is cold enough to wear them here on Maui.
Rusty (to Everyone): 4:39 PM: Complete Fall in NH, peak colors this weekend. Snow in the mountains later this week. Our 8 weeks of summer were nice though.
