Ultra sensitive psa

[APK3]

As my MO basically doesn't want to engage in conversation during my 5 min appointments as he feels it's an insult to his managing my case I was wondering after 7 rounds of docetaxil why he decided to do an Ultra sensitive PSA instead of just a good o PSA. I've not reached an undetectable number as of yet and have finished up with the Chemo, what would be the purpose of switching the test ? Thanks for any replies.

[mrscruffy]

5 minute appointment? My MO regularly spends 15-30 minutes with me and longer if necessary. May be time for new doctor

[APK3 in reply to mrscruffy]

It is time. My daughter has been on to me about coming to her clinic in Arkansas for a second opinion. She's a pharmacist at an oncology center and a stage 4 cancer survivor herself. My MO is 10 minutes from my house and has had me on triplet so I figured I'd finish up my infusions as they are one of only a couple in town that do them. He's not approachable. When I first started there and started asking questions he told me that when he takes his car into the mechanic he doesn't micromanage the guy fixing his car so I got the message real early on. He told me he's got my back.......for 5 minutes anyway.

[mrscruffy in reply to APK3]

The local guy here in smaller, rural town told me i would be dead in 3 years and was not treating me properly. I now travel 3 hours each way for great treatment. just hit the 8 year mark

[APK3 in reply to mrscruffy]

That's a nice run .Here's to 8 more ...It's definintly time for a road trip for another set of eyes for me.

[mrscruffy in reply to APK3]

Hope it goes well

[GeorgeGlass in reply to mrscruffy]

where do you travel too?

[mrscruffy in reply to GeorgeGlass]

from Lake Havasu City, AZ to Phoenix

[Teacherdude72 in reply to mrscruffy]

Send him a no thanks card.

[Bubasurf6 in reply to APK3]

tell your oncologist he’s not you’re not a fucking car. my oncologist spend 30 minutes with me minimum on my zoom calls that we do every three months while we’re waiting for the PSA to become detectable after hormone therapy and radiation for bone Mets. That was the second time they found Bow Mets the first time he didn’t want to do a zoom call he wanted my wife and my son to come in when they found the first bone met so they were in the loop on the plan the Treatment board was suggesting not just him but bored of a dozen people choosing SBRT radiation for me. Sounds like you’re oncologist has an extremely large ego.

Also don’t understand if you want the ultrasensitive which is what my oncologist wants me to have so he can watch the velocity when it does become detectable again.

I would get a different oncologist if my guy was treating me like I was at a drive-through window at McDonald’s

[Mgtd in reply to APK3]

Yeah and his car does not talk or have feelings of anxiety that an explanation could alleviate. What a jerk! Really time to move on.

[TomsD1 in reply to mrscruffy]

Hundred percent agree. Perth WA doctor treating my Dad was into 4 minute appointments - missed writing up blood tests so we changed oncologists....Dad was on wrong steroid and wasn't having enough blood tests. Not just a bad bedside manner.

[Derf4223]

@APK3

Do you exercise a lot? Talking 5-6 hours/week minimum, aerobic, cardio and resistance. Have you had a bone density test (aka DEXA)? ADT + ARPI/ARSI drugs and the resulting undetectable testosterone state result in accelerated muscle loss (sarcopenia) and bone loss (osteopenia/osteoporesis.) A healthy mediterranean-like diet also has proven benefits WRT heart and other cancers.

Good luck. Oh yeah, if you want to improve communications with your MO (regardless of who you end up with), become informed on trials and medication/treatment possibilities relevant to your case particulars. Come into MO meetings with 1-2 pages of notes/questions that use their language. Name-drop trials like CHAARTED, LATITUDE, PEACE-1, etc (these are examples.) We all walk into our first MO meeting at an information disadvantage and it takes hours for us to be educated enough on our own in order to not waste their time.

[dhccpa in reply to Derf4223]

I'm name dropping this trials more and more myself. It does seem to work!

[APK3]

Thank you for the reply Derf. I do get my workouts in 5 days a week. I've asked for a bone density test but was told it doesn't matter you need to be taking Xgeva shots since I was dx with mets to the spine. Of which I've had 2. I do eat Mediterranean as that's the food I've always preferred.As far as questions, he's made it clear he hasn't too much time for that. I'm done with Chemo for now so I'll be looking for another MO that has time for me. The clinic I go too is always packed to the brim. People of all ages so perhaps they suffer from not enough Doctors . I do appreciate you taking time out of your day to respond.

[NanoMRI]

As commonly expressed within this forum, there are (considerable) disparities about ultrasensitive testing and what PSA values to rely on for conclusions and decisions. I believe strongly in ultrasenstive testing and relying on <0.01 (post RP) as best indictor.

[APK3 in reply to NanoMRI]

.01 would be nice but at .61 might be a stretch.. Hopefully I'll continue to trend down. Thanks for your input.

[spencoid2]

I have one of the best gerontological urological oncologists in the country and he has all the time in the world for questions and answers. I do prepare and do not ask dumb questions. I imagine he has an extremely busy schedule but talking with him one would never know.

[APK3 in reply to spencoid2]

Sounds like my former Primary Physician. Spent as much time as needed during my appointment. Unfortunately he retired @age 62.I asked his nurse why and she stated he was just burnt out during COVID with patients coming in with their Facebook Medical degrees unwilling to listen.

[spencoid2 in reply to APK3]

My primary was great and I had high hopes because she is young enough to survive me. The practice just fired her and we do not know why yet but suspect that she was spending to much time with patients. We hope to find where she has moved to?

[Mgtd in reply to spencoid2]

Or she may have left because that is not how she wanted to practice medicine. Was reading recently that 30% of doctors retire early or move on from patient care due to burnout. Sad.

[MateoBeach]

Just guessing here since I am not inside his head. If The docetaxol has knocked the cancer down and hence the PSA to low levels such as 0.5 or less (or some similar level chosen), then it is better to defect small but significant changes in activity and growth of remaining cancer. It can indicate when it is time for further evaluation or changes in treatment. Nemo suppresses but doe not cure prostate cancer.

[APK3 in reply to MateoBeach]

Makes sense Mateo. Thanks for the input

[SteveTheJ]

Consider a different oncologist, one who takes the time and listens.

[APK3 in reply to SteveTheJ]

That is the plan Steve. Thanks

[leo2634]

Definitely switch doctors my doctor is like having my best friend treating me he's patient caring and kind. Never give up never surrender Leo

[APK3 in reply to leo2634]

Good to hear your comfortable with your MO. Thanks for your reply and continued success on your treatments.

[PCreading]

Sounds like time to switch Doctors

[4tunate1]

Sounds like switching docs is already you plan, so I won't say 'time to switch docs'. My MO has spent as much as an hour with me with things were getting started. Lots of questions and answers. Saw him again two weeks ago and we used 1/2 an hour. Things are calmer now and we know what we're dealing with but no Q&A? Absolutely not.

[EdBar]

Makes no sense to do ultra sensitive test if you’re not undetectable on a standard test IMO. And if I had a doctor unwilling to engage in conversation about my treatment I’d find another, ultimately we have to be our own best advocate in our treatment. Again, IMO.

Ed

[APK3 in reply to EdBar]

That was my line of thought about doing a ultra sensitive. I haven't talked to him about it as it was ordered after my last appointment. Scan next week and see him in a couple of weeks. Thxs for your time.

[Hawk56]

Throw the BS penalty flag on your oncologist. I had one like that, more or less fired him. The one I have now, active listener, good fit for my patient style.

My rules for my medical team:

Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, call me!

Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my x-rays; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time !

Respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you and I have shaped for me.

Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.

When it’s decision time, please decide! Care for me with a dogged determination to get me healthy

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.

Please 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?

And yes, the front desk is key, sets the tone, pleasant, efficient on check in and scheduling on the way out...a kind word, smile...and don't call me "honey." You have my records, I am ok with you calling me by my first name or Mr. ____

Of course, this requires that I have "rules" to follow as a patient...

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. Kind of like the "sunk cost" you learn about in business school. 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 made 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 make sense for me, with the focus on long life. 

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 my urologist and oncologist told me ADT monotherapy 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.

Don't blindly accept the opinion of a non-specialist – my cancer requires a team approach.

[Rolphs in reply to Hawk56]

Hawk, this is really helpful. I like the thoroughness of your approach to being treated for this challenging disease. From your history it looks like you've gone far and wide in seeking treatment options. Our medical teams have to top notch for us in this battle but as patients we also need to be responsible and fully engaged in this process. My history has been SOC( Palliative RAD., Doxi, Enzo and Orgo.) and now I realize I've been too passive (partially because I have a nadir with my PSA). You've motivated me to be better prepared and better educated in advance of progression of my PCa.

Many Thanks!

[Rolphs]

I asked my MO about a more sensitive PSA test and she said "why it won't change your treatment." I've been at a nadir at .2 for many months but I guess my thinking was I wanted to react quickly if my PSA starts rising. I've been on a long journey with PSA levels starting at 930 more than 3 years ago. I didn't have an answer for my MO as to why I need a more sensitive PSA, any ideas?

[Tommyj2]

imagine you’ll get any number of replies recommending changing MOs …….count me in that group. Even IF he is handling your case adequately leaving YOU out of the process is inexcusable…..move on!

[Teacherdude72]

I often tell people that You have to like your doctor. I say that in blogs and my book about my Cancer experience.

I strongly suggest that you find another doctor. My Oncologist spends a minimum of 30 minutes with me. I am on vacation from my Nubeqa,8 months now, and met with the NP just this week ro review my good very low psa numbers and we spoke for 35 minutes.

Just 5 minutes and the extreme arrogance of your doctor being insulted by you having questions is outlandish.

[j-o-h-n]

Next time you see that prick..... ask him if he would show you his balls.

If he asks why?

Tell him that you want to to make sure where they are cause you don't want to miss.

Good Luck, Good health and Good Humor.

j-o-h-n