Living with Prostate Cancer: Meet others & introduce yourself
Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.
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Let's start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Ava11: I was put out for my biopsy and was glad that I was. On this website, and personally with a couple of friends, staying awake for the biopsy can be uncomfortable. If your insurance and budget allows, you might want to consider being put under.
I would not take any short cuts and that means following the conservative advise of your physician and a complete biopsy. A biopsy does not hurt and you need to know everything possible about your cancer so that you can make the right next decision. Good luck.
I am scheduled for Transperineal biopsy on March 5th. MRI found 2 lesions one with PIRADS score of 5 and the other with a score of 4. Should I get a targeted biopsy at those 2 locations only or also additional 12 core random biopsies also or just go along with whatever my urologist recommends?
Keep on working on this Roger, it is worth it. Have you had surgery or radiation? I am Gl 9, CR, 77, locally advanced. 30 months ago my UCLA doctors started me on a triple therapy of ADT and Erleada for 6 months, then Robo surgery, then 6 more months of these meds. I have been off of all meds for 15 months and I have good numbers. You might explore with your doctors an aggressive treatment at an early stage of your cancer treatment. If and when my PSA increases I will discuss with my UCLA doctors a new triple therapy with might include docetaxel ( chemo). They are the experts and I try to be a good listener, but I try to be a knowledgeable layman Best of luck to you!
Hi, I’m Roger. Diagnosed a year ago with PSA of 682 and difficulty urinating. Gleason 4+5. Started monthly Firmagon injections right away, followed by Xtandi pills a month later. My latest PSA is 0.3 and I have side effects of fatigue, hot flashes, loss of muscle mass, and 15 lb. weight gain after one year. Waiting on results of PSMA Pet Scan just done yesterday.
It is difficult sometimes but I’m still here and working hard.
Your biopsies seem a lot like mine, but with a PSA of 7 at age 79. The next step for me was a PSMA PET scan looking for extra-prostatic spread. None was found, so the disease may be localized to the prostate, which would allow a potentially curative radical prostatectomy or radiation. I chose radiation. Now, there is no sugar coating this: you have a brutally high PSA level. My first reaction is: has that been repeated (mistakes can be made). If yes, I would expect a PSMA PET would be next. However, the urologist may be looking at your general health versus the potential health risks of treatment options, and also quality of life issues, in treating what may well be castration-resistant disease. Good luck on Friday.
hello, im george, age 74, diagnosed feb 12th 24, gleason 7s and two 8s, psa 1600.
urologist seems in no hurry which makes me crazy. iv
weve had biobsy results since the 19th but hes waiting till march 1st to explain them to me.
the 1600 psa seems to indicate castration resistant spread.
i understand the need for data, but i fear hes going to test me to death
age 74, psa 1600, all 12 cores at least gleason 3plus 4 with two 8s,
I had an AUS implanted in 2019 and it was not functioning correctly September 2023. It had caused a tear in the urethra and the whole area was filled with bacteria. It was removed. Shortly after the surgery I had chills and SOB and was taken, by ambulance to T he hospital where I was diagnosed with septis. The hospital staff was able to kill the bacteria and I am recovering.
Erkbiz,
Welcome to Mayo Connect. There is lots to learn here. Your post was a bit non specific about some things and I think others here can present a clearer response with more clarity from you. For example:
What's your age? - QOL - What we consider Quality of Life is different at 75 than it might be with a PCa diagnosis at 55.
"..tests confirmed his belief". What tests were those? there are a variety of scans, some which are more diagnostic than others. Some docs may be limiting themselves to what the tools that are readily available in their facility. There are also genetic tests, some of which 'measure' the aggressiveness of the cancer. Some also measure whether the cancer is hormone sensitive.
"He did say that he discovered some Gleason 9 tumors" Sounds to me like a prostate biopsy? but biopsies come in a variety of 'flavors'. Traditional urologists would do ultrasound guided biopsies. Dr. Mark Scholz of the Prostate Cancer Research Institute (pcri.org) like to call these random biopsies. There are also "fusion biopsies" which use high quality MRI data merged with active ultrasound data. There are suggestions that these are much more precise.
I strongly encourage you to explore this website to understand radiation options. Traditional radiation (photons) can be delivered in a variety of ways (SBRT, etc) and yet some facilities may not be doing that. PBT (Proton Beam Radiation) is considered by some to be more precise and less damaging to other tissues. (lots on this at PCRI).
Also be familiar with SpaceOar (Organs at Risk) - an 'agent' that is inserted internally separating the bowel and the prostate - helping to minimize injury to other tissues. (I was surprised to learn that in my community of 100,000 people that the urologists here only do SpaceOar insertions quarterly when enough patients are on the list and when a rep from the SpaceOar company can come)
Also a comment in general about ADT (Androgen Deprivation Therapy) into which I think Firmagon and Eligard fit. watch: https://youtu.be/E_zZ-lG6eeY Strongly suggest that ADT should be accompanied by an active strengthening regime. Your weight loss might not be so positively seen if it represents some muscle loss.
Also, below this comment and your intro etc see the comments of kujhawk1978. He really offers a lot of overall wisdom. Bottom line, get educated, ask your doctors what they know about other treatments than what they may offer and that may not be available in their facility.
I have posted lots of details elsewhere about my journey. But in the briefest synopsis: PSA 8.3 August 2019. Better quality MRI showing tumor. fusion guided biopsy Mayo/Rochester November 2019. Proton Beam Treatment (5 sessions) Mayo/Rochester Jan/Feb 2020 followed by 4 months of ADT. Since late 2020 my PSA has been measuring >.10 which is considered undetectable. Self labeled not as 'cured' but in remission, and I hope it lasts the rest of my life (age 73 now).
PS: pcri.org is a great reference with many videos on Youtube. Prostate Cancer Foundation is another resource with a downloadable guide. (however, be careful, as they have what I think is an unwarranted prejudice against PBT (proton beam radiation).