A very interesting but challenging and thought provoking article came to AnCan’s attention last week published by ASCO’s Journal of Clincial Oncology. The AnCan prostate cancer moderators thought carefully about whether we should reblog it Ultimately we decided it was worthwile for all our prostate cancer community, and maybe others too.
Please let us know your thoughts via info@ancan.org – we will add them to this page. Your editor has already taken the liberty of including some moderator responses:
Just one editorial comment on A Dozen Eggs, especially with men in mind using estrogen patches. AnCan is not aware of any clinical evidence that increased levels of estrogen promote prostate cancer progression.
…. it is an excellent and thought provoking article. If presented in the right context and sensitivity it could be quite instructive and inspirational.
It is really a great piece.
I think it’s fine, although I’m a little concerned about the oncologist telling Evelyn that estrogen might make her prostate cancer worse. I’m not aware of evidence supporting that concern
Quite interesting and not something I even thought about. I’d say the majority of our “customers” are squarely in the heterosexual male category but I wouldn’t doubt that many of them may know someone similar to Evelyn. I have a work association with a transgender woman that I’ve known for 15+ years, well before the transition. I know from past conversations that she has not had reassignment surgery. It might be something she faces in the future. Now you have me wondering if they take the prostate out for reassignment surgery.
I have attended workshops discussing transgender issues in the medical world. The system mistreats and misunderstands transgender patients. Medical staffs humiliate them and ask for their birth names and to show their driver’s licenses.
If these patients undergo transformative surgery, they retain their prostates. So ironically, as much as they wish to change their identities, they need to undergo digital rectal exams and PSAs as part of routine care.
Change is coming slowly to accept these people in medicine and in the larger society.
On July 22nd, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) lead our appropriately titled…”Art With Hannah Garrison“! It has a Saturday Night Live ring to it, don’t you think? She was requested to teach something relaxing and summer-y, and did she deliver!
We created an absolutely beautiful dusk beach setting, that is begging for a pineapple drink with a little umbrella in your hand. Last time we had an event to celebrate MS Awareness Month, but this time all were welcome. We saw members from our Blood Cancers, Prostate Cancer, Thyroid Cancer, MS Group, and more!
I promise this is SO easy and relaxing, so grab some supplies and have an hour of creative relaxation.
Supplies:
Acrylic paint or watercolor paint. (It will be watered down, so it doesn’t matter!) Colors – blue or aqua / dark blue / orange/ pink / purple. (colored pencils were also successfully used in this art project!)
Paint brush – round or flat.
Black crayon, but any dark color will be ok!
Water
Napkins
If you have any suggestions, or would like your art featured in the AnCan Art Gallery, please email me at alexa (at) ancan.org!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
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.
Have you checked out our page “All the Faces of AnCan” lately? We are always growing, and you might see some new faces! While we’ve discussed Dr. Herbert Geller (researcher and AnCan Advisory Board Member) previously on the blog, we have a special treat today. Dr. Geller was part of an esteemed panel explaining the science behind mRNA Covid-19 vaccines with CureTalks.
I find this description of what mRNA means and brief explanation from CureTalks to be extremely helpful.
Messenger RNA vaccines, also called mRNA vaccines, are some of the first COVID-19 vaccines authorized for use in the United States. mRNA vaccines are a new type of vaccine to protect against infectious diseases. They teach the cells of our body to make a protein that triggers an immune response. This immune response leads to the production of antibodies which protects us from getting infected if the real virus enters our body.
Be sure to check out this informative presentation, here!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
If Medicine Doesn’t Come to you, Go to the Medicine!
You know what they say about Mohammed and the Mountain …… if the mountain will not go to Mohammed, Mohammed must go to the mountain! Well it’s often like that today with cutting edge medicine – and even not so cutting edge if you live in out of the way places like Maui, HI where our Board President, Peter Kafka, resides. It’s all part of Being Your Own Best Advocate…… (rd) PS Peter has asked me to clarify, he wrote what follows – not me. But I guess most of you can figure that out!
Back in 2014 when I was first diagnosed with advanced prostate cancer, my younger son who was 38 years old at the time was in the urologist’s office with me getting the news. As I was seated on the exam table, he was standing in the corner leafing through the booklets and pamphlets about prostate cancer while we waited for the doctor to deliver the bad news. My son, holding up a booklet exclaimed to me; “Dad, this literature is older than me!” Right away we both knew we were in the WRONG place.
Unfortunately, so many men and women reside or walk into the “wrong” place when it comes to getting access to the most up to date technology in terms of treatment or diagnostic tools. Little did I know back then. I lived at that time under the illusion that the “Doctor” knew everything and would of course be up to date with the latest and greatest. Not so, as I quickly learned.
One of the great values that I have found in participating regularly in our AnCan prostate cancer support groups is the experiential reporting on all the new cutting-edge treatments and diagnostic tools that are emerging and available. Recently one of our number took advantage of the new technology of Micro Ultrasound to guide a biopsy. Apparently, this is found to be even better than the 3T multi-parametric MRI in determining just where to poke the needle and take a tissue sample, leading to a far more accurate diagnosis. It can detect small, but significant lesions within the prostate that might otherwise be missed.
The rub however, like any new advancement is that not every facility or doctor will be in the “know” or have access to such tools or treatments. Don’t I know this well, living here on the Island of Maui in the middle of the Pacific Ocean. The lesson for all of us is that we should carry a business card stating; “Have Suspicion Will Travel”. Please don’t wait for technology to come to your doorstep or for enlightenment to come to your doctor. Your life is way too important to me.
Support comes in many forms, and here at AnCan, we are so blessed to have Hannah Garrison, a fantastic MS activist, moderator for our MS Virtual Support Group, and artist.
In honor of MS Awareness Month (March) we had a phenomenal time with adaptable art of all skill levels. We used paint and old gift cards to create masterpieces. We even had adorable kids join for a family night!
Feel free to create this art project anytime (no matter what community you belong to) with the video below: (Scroll down for supply list)
Supply list:
1. Acrylic paint
2. paper plate or palette
3. old, empty gift card or old credit card – the paint will ruin it, so make sure they know it can’t be usable
4. napkins – lots!! things will get messy
5. paper – any sturdy paper – cardstock, watercolor paper, acrylic paper
6. brush – optional, for mixing colors on your paper plate/ palette
We will be offering more art related support soon, including an AnCan art gallery. If you’d like more information or have any suggestions, please email me at alexa (at) ancan.org!
For information on our peer-led video chat MULTIPLE SCLEROSIS 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.
