PSA and awareness
I'm Co-President of the New Prostate Cancer Coalition. We go out into the communities in NH to encourage men to be aware of the signs that indicate they need their prostate checked. We do encourage them to have their PSA checked annually during their wellness exam.
We also encourage men who have experienced prostate cancer to speak about it.
In May were are having a panel discussion on our community TV station about prostate cancer. My urologist will be the medical guest.
We recommend that men who are dealing with the collateral damage cause my the removal of the prostate gland to join a support group so they share their story and hear what other are going through, or have over come the same problems.
My Co-President is a women who lost her husband to prostate cancer because he refused to have his PSA checked. When they diagnosed him with prostate cancer it had matastasized throughout hus body. He died 3 years later. This has made us realize that we also need to encourage the women in men's lives to insist that they have their PSA checked annually. Women are much more proactive then men about their health.
We also have literature explaining signs, statistics on, and treatments for PC. We also explain that genetic links and family history are important to understand. If men in your family have had PC, or if women in your family have had breast cancer younger men have a much greater likelihood of developing PC. African-American males are also at a higher risk factor for developing PC.
This is a battle NHPCC has been engaged in for 25 years. Personally I have been involved for eight years. I am more encouraged at every public event that men and the women in their lives are more aware and more proactive about prostate cancer.
Hi
. Thank you for sharing your story and your advocacy on behalf of prostate cancer awareness and those with PCa. You mention you work and the stories of other. How are you currently doing? Hope all is well. Best, Richard (Team Member) Thank you for the kind words. I am well, and ready to speak out for early detection for all cancers.
I have two friends of over 55 years that the Stage Four PC. Both have been fighting successfully for 3 years. Their attitude and courage are truly inspirational. One is at Massachusetts General and the other at Dana Farber.
I am also very concerned that federal cuts in cancer research can be reversed. We need to fund the highest quality medical care, and that seems to have become a minor concern for our political leaders.
My Congressman and my two Senators hear from me, asking them to fight for making healthcare a national priority.Hi
. We have a number of patient leaders who have been stage four for a while (For example: see Tony's bio here: https://prostatecancer.net/community-advocates/tony-collier). Hoping your friends are doing well. Best, Richard (Team Member)
I would add that genetic testing is also important and the knowledge that goes along with the results. 20 years ago my mom was diagnosed with the BRCA2 genetic defect. She had my 2 sisters and I tested (we were adults with kids) and all of us are positive. When we had genetic counciling (at the same time) they spoke mostly to my sisters about their increased risk of breast cancer but only casually mentioned to me that I have a higher risk of prostate cancer. My PSA has always been in the normal range meaning under 4. what i didnt know is the normal PSA blood panel range is NOT normal for me. I later learned that I should be under 1 but since none of my docs knew that fact, and since my PSA was always under 4 so they thought it was OK. When I found blood in my semen and pushed my GP to do something and he recommended a urlogist. My previous PSA test was 3.5 and the urologist gave me a antibotic which cleared up the blood in the semen problem - he did another PSA which came back at 5. At that point he scheduled an ultrasound (found nothing), then MRI which showed cancer, followed by a PSMA PET Scan and biopsy which confirmed the MRI and gleason of 9 which was all contained in the prostate. I went to UPenn and am currently in the NePtune trial. UPenn is a BRCA expert center and I learned a lot from the docs there - like anything over a PSA of 1 should have put me into monitoring. Luckily the trial drugs have lowered my PSA from a high of 7 (right before the trial started) to now 0.5 so the drugs are working. As the docs at Penn have told me - Prostate Cancer awareneess, knowledge, and treatements are 20 years behind breast cancer. We have to change that ! I will have RP Surgery at the end of July 2025 but I have this feeling in the next 5 to 10 years that there will be other options rather than removing the prostate. I won't have that option but hopefully trials like NePtune will help find alternative treatments for others.
thanks Richard. my experience with the docs i visited was most had very little knowledge of the affects of BRCA on prostate cancer. UPenn has a BRCA center and they seemed to have a focused understanding of my personal PC and more importantly they had options that others did not present. Hi
. I don't know how many men here have said what a difference it made to go to a comprehensive cancer center or major university hospital. Best, Richard (Team Member)
Anyone at Stage Four PC should look into the changes for qualifying for the drug PLUVICTO. According to my friend who is having his last infusion in May, the new qualifying standards would have saved him two years of unsuccessful chemo.
Hi
. Thank you for sharing. For anyone interested in more information this page describes the expanded indication for Pluvicto: https://www.fda.gov/drugs/resources-information-approved-drugs/fda-expands-pluvictos-metastatic-castration-resistant-prostate-cancer-indication. Best, Richard (Team Member)
