Richard Maye lives with Gleason 3+4 prostate cancer and participates in AnCan’s Active Surveillance and Low/Intermediate Video Chat Groups. In communications with AnCan, Richard had thoughts on how he responds to QoL issues surrounding his diagnosis, that we encouraged him to blog. (rd)
AnCan Participant Richard Maye Muses on Quality of Life
I have Prostate Cancer! Now what do I do? After receiving my diagnosis in November 2018, a month prior to turning age 71, I knew that it was imperative for me to come to terms with not only understanding this disease, but what did this mean for how I had previously viewed living out my life.
While I had talked about Quality of Life, the ideas that I included in that term were vague and general. Terms such as: Travel (where, when?); Continue to Work at least part time (doing what? for how long?); Help other People in need (Who, Where, How?); …. you get the point. I also used the term when I looked back at my Father’s end days. My Father had lung cancer and advanced metastatic prostate cancer. His end days were not filled what we would call a Quality of Life. Twenty years ago, the treatment option for his prostate cancer was chemo therapy, an option that he made clear would not be considered. I respected him all of my life including in this life decision, and watched how he lived his days with determination and without complaint.
Now, this is different, this is me. The diagnosis, while generally favorable, caused a sense of urgency for me to decide how I would live my days. Given my long-term PSA history I had researched prostate cancer, some of the treatments, side effects and related issues. I started with the question – did I believe the diagnosis? To answer this important starting point, I had a Genomic Test and also a second opinion. From there I spoke with the Urologist, Medical Oncologist, Radiation Oncologist, and two family practitioners. Research led me to the Prostate Cancer Foundation, to AnCan, UsToo and other invaluable resources. It was very important to include my wife in every step of this process. As a man of faith, I knew I had to put this in God’s hands and trust Him for guidance.
So here I was with all of this information and consultation, but it still came down to how am I going to live with this? During my administrative career as a senior administrator in healthcare to make important decisions I used this analytical process: Identify the problem; Make it a priority; Evaluate its scope; Assess the potential impact; Develop a solution; Make the decision; and, Implement it. That process is the hinge upon which the gate of my success rested.
Using that approach forced me to decide what would become my operational parameters for the term Quality of Life going forward. It ended when I told my wife and physicians that I was going to respect this cancer BUT not fear it. This means that I was not going to rush into treatment, I would go on Active Surveillance, modify my living standards but not live in fear. Here is a small example of an area included in my Quality of Life Guide. Nutrition and Diet are important to all of us no matter our health status and it plays a big role in the prevention and fighting cancer. If I want to have a piece of my grandchildren’s birthday cake, have a cocktail with our son, share a bottle of wine with my wife, I will do so and not stay awake at night wondering if I just promoted my cancer to grow. Yes, I have reduced the intake of sugar, alcohol, red meat and consumed an ocean of decaffeinated green tea, eat more vegetables than ever in my life, vigorously exercise every day and laugh.
The risk and side effects of the various treatments that are available today along with the potential for the cancer to return were weighed heavily in my decision process. Understanding the risk and consequences, I decided to wait, but wait watchfully in Active Surveilance. With regular monitoring of my PSA, I have postponed having another biopsy and glad that I did, given the trend toward using the Transperineal procedure. New diagnosis and treatments are being announced frequently.
Understandably there are men in different stages of their cancer than I, but the point is this. Define what Quality of Life means to you. Look at your life as it is currently, your life expectancy, family, career and then determine what will be your ROL (Return on Life) for the remainder of your days.
According the Social Security actuarial tables, my life expectancy is another 12 years. That’s about 4,400 days. For now, I can go about the business of living instead of being plagued by anxiety, depression and roller coaster emotions.
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 11, 2021
Editor’s Pick:Great discussions this week – trials vs chemo, absurdly high T on LHRH + abi, sweet smelling urine – but the prize goes to Being Your Own Best Advocate … someone’s listeing to us!(rd)
Topics Discussed
Another trial or finally try the the SoC – chemo?; cyclophosphamide; PSA doubling times; post-AUS surgery – and more incontinence issues; testosterone returns; Dr. Morgans on the move … and Dr. Antonarakis!; brachy+IMGT+HT is the gold standard; abiraterone and liver effects suggests switch to darolutamide and DUDE program; hormone therapy prematurely ages us; when it comes to Axumin and MSKCC, Be Your Own Best Advocate; what’s that sweet urine smell – pre-diabetes?; neuropathy; Frank finishes chemo; Testosterone supplementation; T of 750ng/ml on ADT + abi?? – sure that’s your sample?
Chat Log
Jerry Pelfrey (to Organizer(s) Only): 3:06 PM: Rick what is the name of AnCan on facebook? I have looked and can not find it anywhere.
Herb Geller (to Everyone): 3:30 PM: Doubling time is the time it takes for PSA level to double. So if it goes from 8 to 16 in one month, then doubling time is a month.
Ravi (to Organizer(s) Only): 3:48 PM: so if T varies so much, what is the best time to test?
AnCan Barniskis Room (to Organizer(s) Only): 3:49 PM: not sure Ravi …… but maybe best to test always at the same time???
Herb Geller (to Everyone): 3:59 PM: Van Veldhuizen at Rochester
AnCan Barniskis Room (to Peter Kafka): 4:08 PM: switch out of abi to enz
Joe Murgia (to Everyone): 4:45 PM: After about 18 months on bicalutamide my A1c went up to 7.8. I’ve been on metformin to control my blood sugar for almost 3 months and I’ll be getting an A1c in 2 weeks. My AM fasting blood sugars have improved. Any help it may give in fighting the PCa would be welcome.
Ravi (to Organizer(s) Only): 4:46 PM: Thanks, Joe
Joe Gallo (to Everyone): 4:47 PM: Get the basic Lipid (panel current levels)as well as A1C (3 months average). Both are valuable.
AnCan Barniskis Room (to Everyone): 4:47 PM: From Ravi …. Thanks, Joe
John Ivory (to Everyone): 4:57 PM: I’ve got to run to another Zoom. Good to see everyone! Aloha, Peter!
Jeff Marchi (to Everyone): 4:59 PM: took biclutamide for a year but A1C nverwent above 5. I keep weight down, weigh daily. I almost never eat sugar, and am very careful with carbohydrates, that really helped. last test was 5.3. have to really monitor diet. never above 5.6
Pat Martin (to Everyone): 5:02 PM: I appreciate this group…300 years of experience and still has a sense of humor.
Herb Geller (to Everyone): 5:07 PM: I gotta go, guys. Dinner’s on the table. Sorry.
Aloha, friends! We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. We love you, Peter!
THE LEARNING CURVE
Yesterday I made the leap and upgraded my smart phone from my old Samsung android which was not functioning or charging very well to a new I-phone. I was warned that there would be a learning curve to navigate, and I feel I am up for the challenge. Of course, I have mentors close at hand like my son and daughter-in-law and grandchildren, but their fingers fly so fast over the keys and apps that my brain just can’t keep up and I get lost. I suspect you know the feeling well.
I bring this experience up because it reminds me of the steep learning curve that most of us face when diagnosed with prostate cancer at any level. There is a hell of a lot to learn to say the least! Our AnCan motto for our support groups is; “Be Your Own Best Advocate”. This admonition can be quite an ambitious goal for many of us. I noticed my own over eager attempt to “educate” a recently diagnosed man who found his way to my phone number the other day, not unlike my grand daughter’s attempt to furiously try to teach me the secrets of all the apps on my new phone. How quickly the mind can zone out.
Then there are the numerous inherent “handicaps” (if that is still a politically correct choice of words) that we face including;
Age: Prostate cancer seems to strike most of us in our 60’s when our mental capacity and acumen is not in its prime. (Go ahead and say; “speak for yourself!”, just saying….
Medical Terminology: Few if any of us are trained as medical professionals and acquiring understanding in the field of cancer can be quite daunting.
Advancements: The field of medicine is changing and progressing rapidly. “Warp Speed” is no longer a science fiction term.
Brain Fog: The treatments that many of us endure certainly don’t help the cause.
Add your own: Be my guest…
If you have attended any of our live online AnCan support group meetings you will have noticed that many of us are “regulars”. We are not GROUPIES following bands like The Grateful Dead around the country, but rather just guys trying to wrap our heads around this strange disease and better understand what our options are going forward. The light doesn’t come on with a flip of the switch, at least that has been my experience.
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.
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 03, 2021
Editor’s Pick: An 80 yr old man tolerating docetaxel is an inspiration to all. Later on, practically ,do you stop treatment to allow PSA rise for screening purposes? (rd)
Topics Discussed
80+ yr old man undergoes chemo, but rash stops it; reluctant patient faces recurrence; Grade 4 Radiation Cystitis; more recurrence w. pelvic girdle RT; NGS reveals MSI-H; getting an Axumin scan thru MSKCC; In Memory of Scott Hogan; ARV110 trial fails BRCA2 patient; swollen legs leads to coming off abi; melanoma Dx to add to PCa; continuing Tx vs allowing PSA rise to see source of recurrence; bowel and bladder maintenance during salvage RT
Chat Log \
John Ivory (Private): 5:22 PM: https://www.dignityhealth.org/ourdoctors/1699772210-russell-gollard
Carlos Huerta (to Everyone): 5:25 PM: Extravasation is when a medication gets out of the vein and under your skin.
Jake Hannam (to Everyone): 5:26 PM: Extravasation is the leakage of a fluid out of its container into the surrounding area, especially blood or blood cells from vessels. In the case of inflammation, it refers to the movement of white blood cells from the capillaries to the tissues surrounding them (leukocyte extravasation, also known as diapedesis). Extravasation injury is defined as the damage caused by the efflux of solutions from a vessel into surrounding tissue spaces during intravenous infusion. The damage can extend to involve nerves, tendons, and joints and can continue for months after the initial insult.
Bruce Bocian (to Everyone): 5:37 PM: Try lavender oil
Eileen Murphy (to Everyone): 5:37 PM: How about Sarna lotion with menthol or Aveeno products?
Bruce Bocian (to Everyone): 5:38 PM: I got the lavender oil tip from the essential oil book
Bob McHugh (to Everyone): 5:57 PM: A shrink or social worker for this guy?
Herb Geller (to Organizer(s) Only): 6:03 PM: I just searched his hospital and there are no GU oncologists
William Franklin (to Everyone): 6:27 PM: I don’t want to take up time we can use to talk to you guys so I’ll put my plug in here. If you feel like ANCAN has helped you and you’d like to say something nice about us, please hop over to greatnonprofits.org, search for ANCAN, and make a comment. We would greatly appreciate it.
Rick Davis (to Everyone): 6:31 PM: You can go ot our website and just click on Testimonials too
Bruce Bocian (to Everyone): 6:42 PM: Bill, just posted my review!
Frank Fabish (to Everyone): 7:15 PM: need to sign off. Thank you all.
Carlos Huerta (to Everyone): 7:17 PM: Dont forget the old standard. Castor Oil.
Joe Gallo (to Everyone): 7:20 PM: Senakot is brand of Sena
On April 29th, we had the utmost pleasure of having the highly esteemed Dr. Lawrence Fong (Efim Guzik Distinguished Professor in Cancer Biology, UCSF. Leader, Cancer Immunotherapy Program, and Co-Leader, Cancer Immunology & Immunotherapy Program, UCSF Helen Diller Family Comprehensive Cancer Center) lead a presentation about immunotherapy for prostate cancer, from active surveillance to advanced disease.
What is immunotherapy?
“Our immune system is designed to defend us from foreign attacks, such as viruses and bacteria. Immunotherapy for cancer takes advantage of the immune system to kill cancer cells by directing immune cells to recognize cancer cells by specific proteins on their surface.”
We want to sincerely thank Dr. Fong for the excellent presentation and education he provided!
Watch this fascinating presentation here:
Special thanks to Myovant Sciences for sponsoring this webinar.
Special thanks to Myovant Sciences for sponsoring this webinar.