Living with Prostate Cancer: Meet others & introduce yourself

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).

Ugh, GHS 10, ok, pity party is over, time to get down to work.

Before your meeting, I would consider some heavy reading.

Start with the NCCN guidelines. These are the baseline treatments for you and your medical team to discuss. For example, you say Bomne and CT scans, depending on the results, a newer PSMA scan may be part of collecting clinical data to inform your decision. I've attached them to this message.

Next up, do some reading on doublet or triplet therapy - with the clinical data you provide so far, monotherapy is not a recommended treatment decision. Here's one article to get you started, there are others - https://pubmed.ncbi.nlm.nih.gov/36058809/

You are going to have to set some priorities and parameters for you and your medical team such as, how aggressive do you want treatment to be, that is a mix of quality and quantity of life, are you open to clinical trials...

You want a team - oncologist, radiologist and urologist, preferrable ones who focus on prostate cancer and are experienced. You also want a GP or Primary Care physician, cardiologist and if needed, nutritionist.

You must be your own advocate and the quarterback and play caller for your medical team. When I was doing ADT and Chemotherapy team I made sure the Urologist's office did not try and schedule my next Lupron shot on the day I was sitting in the infusion room. If you expect the doctors and staffs to do that kind of scheduling coordination, well...

Ask for and keep all labs, visit notes, imaging results, etc. Build yourself a chart, I've attached mine. When I brought a new oncologist on boards, I used it to bring him up to speed. I also keep a MS EXcel File with all labs, CBC, Metabolic...procedures, imaging, surgeries, vaccinations...For my blood tests, I graph those...trends are important, single results no so much. When it comes to medical history, a picture is worth...

My doctors know that I am an advocate for shared decision making and their job is to support me with their expertise and capabilities in ensuring I do not die of PCa, rather with it!

If any doctor's ego gets in the way of him or her helping you find the best possible solutions, fire them. My last urologist had his feelings hurt when I went outside his practice to develop and implement a plan. He said, I can't help you....I said no, the correct answer is, how can I help you...? Needless to say, he's no longer on my medical team.,.

Like most things, prostate cancer has its own language. Starting learning the terminology, definitions...

I've posted these before, may be useful as you start your journey:

1. Please know your stuff. a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack.

2. Please do your homework.I expect you to have reviewed my medical records prior to my appointment. looked at my x-rays; you have my pathology report; you know how many children I have. In the world of cancer care, every scrap of data must be scrutinized for its significance.

3. Respect my point. of view. Leaders listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I am sure you can help me to feel confident plan you have shaped for me.

4. Be curious. Do not close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Please rid yourself of the temptation to make your day easier by delivering perfunctory care.

5. When it’s decision time, decide! If you think treating my cancer is not worth it; if you think I am at the point where I should stop chemotherapy; if I have veered of fthe path you have cleared for me—then speak up! Care for me with a dogged determination to get me healthy and do not keep any secrets that might lead to regret. I want an oncologist who knows what is best for me and doesn’t chicken out in difficult times.

6. Be responsible. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.

7. Talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions? Leaders welcome scrutiny of their communication skills. No one cares if a flunky is curt.

Rules for ME:

Don’t walk in cold to an appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself. * Knowledge will empower my BS detector. When Dr. Thrasher and Dr. Emmott told me ADT is what I need and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith. *

Walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects. *

I won’t blindly accept the opinion of a non-specialist– I know that my cancer requires a team approach.

Once I make an informed decision and carry it out, I never look back. Well, that is not entirely true, I look for lessons learned from that decision. The path is always forward: I continue to learn about PCa and always look ahead. What counts is today and what lies in the future. Yesterday is gone, so forget it, well, learn from it.

I educate myself as completely as possible and take the time I need, I always know that no matter the outcome of a particular choice, I make the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.

I am in charge. Not my doctor. They need to be consulted and their opinions and ideas should carry weight as I make my decisions. But I never forget: it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus on long life.

Hang in there, the GS 10 is a tough one but the outcome is not necessarily inevitable.

Ok, probably enough for now, others will chime in.

Kevin