Most important issues to discuss with new MO in 1st appointment?

[SpencerBoy11]

My 1st MO left 9/20 to do cancer research. Because of lack of concern, I no longer wanted to use that cancer center. Getting a new MO has been a challenge. I thought I should have a blood panel done for my 1st visit. Not until after the initial interview. This would also be the time for my 4 mo Eligard shot. How often should you have your PSA checked? I am a person who wants action and no sugar coating. I need to be able to take care of my wife for as long as I can.

[Hidden]

Your new MO should get a baseline involving, blood work and CT & bone scans. That would be a good start.

[SpencerBoy11]

Did the gene test back in 6/20. It never showed up. My 9/20 last appt. With my xMO. I ask about the results. Couldn't find on his computer. Finally got it located. It had been mailed to them. Guess they didn't know how to read from a page--that is one of the reason I didn't trust them in what is left of mt life. UR did get bone scan and PET with no mets apparent.

With the little time I have been on this forum, I can see how fast everything can change.

[Tall_Allen]

So you do not have advanced prostate cancer, is that right? No metastases - neither lymph node nor bone. You had radiation + adjuvant ADT for localized high risk PC, right? If so, you will have 18 months of ADT. After that, ADT ends and you let your testosterone normalize. If there is no progression, you are cured. They usually give a PSA test and testosterone checked every time you get your Eligard shot. But your PSA was likely remain undetectable or very low as long as you are getting Eligard.

[SpencerBoy11 in reply to Tall_Allen]

I have assumed since the biopsy said that it had migrated to my bladder and the results said that it was stage 4, G 4+4 .

When the UR did the biopsy from my bladder, he was very sure he got it all. While it didn't wander far, I guess there could be bad guys looking for a place to roost. It has taken me a long time to gather as much info as I can. With the exception of a couple of places, Prostate Cancer Foundation and Prostate Cancer Research Institute, I have found more current and specific info here. Sometimes it is like trying to take a drink out of a firehose.

[Tall_Allen in reply to SpencerBoy11]

When prostate cancer invades surrounding organs, like the bladder or rectum, it is stage T4, but it is not a metastasis. It is only a metastasis if it travels away from the main tumor in the prostate gland into lymph nodes (N1 or M1a), bones (M1b), or visceral organs (M1c). Even though T4, N1 and M1 are all stage IV (note roman numeral), they are very different. T4 cancers may not be able to travel systemically the way N1 and M1 cancer can.

[timotur in reply to Tall_Allen]

" Even though T4, N1 and M1 are all stage IV (note roman numeral), they are very different".

N1 with mets to "local" LN's-- T3b.

N1 with mets to "distal" LN's-- T4.

[Tall_Allen in reply to timotur]

I know this terminology is confusing.

N1 = metastases to pelvic lymph nodes.

M1a = metastases to distant lymph nodes.

Stage T3b = the cancer has spread to the seminal vesicles

Stage T4 = the cancer has spread to surrounding organs (bladder, rectum, pelvic floor)

prostatecancer.news/2017/03....

[rscic]

IF you are NOT getting a blood test BEFORE the appointment, when you are at the 1st appointment ask if subsequent appointments could be made with a blood test BEFORE the appointment so you have current information to talk about.

[Shooter1 in reply to rscic]

Agree, I always get blood test between a day and a week before MOP meetings. Everything current and useful.

[SpencerBoy11 in reply to rscic]

Over the years I have had to talk drs. into doing tests before I saw them, not after.

[j-o-h-n]

Would you be kind enough to give us more info?

Please tell us your bio. Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond, copy and paste it in your home page for your use and for other members’ reference.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/07/2021 9:45 PM EST- All Greeks named John today is their nameday

[SpencerBoy11 in reply to j-o-h-n]

Hi j-o-h-n. I have been trying enter the info on my profile, but getting no where. I am in Benson AZ and except for my local GP, everything has been done Tucson. With increasing PSAs I was referred to Urological Associates of So. AZ, Dr. "G", Gherezghiher. PSA 19.9. 1/20 started to have internment blood in urine. I had just turned 82. 4/20 PSA 9.9. BX results cancer stage 4, T1a, NX, MX. GS 4+4=8. Bladder tumor, prostatic adenocarcinoma. Prostate, BPH. URO also did TURP in conjunction with BX.

Referred to AZ Oncology, Dr. DiSimone 5/20. Pressed him to do something now and was Rx bicalutamide for 28 days. Also referred to RO in house at Urological Ass., Dr. Skrepnik. 6/20 Dr. D. Rx Eligard 4 mos. 7/20 had Spac-OR and later started 28 IMRT radiation.

9/20 PSA 0.04. 2nd Eligard shot. 12/20 PSA <0.1.

Hot flashes are getting better, but it is getting colder here. Fatigue is a factor, more like being lazy. Brain fog is the most bothersome.

Thank you for your thoughts.

[j-o-h-n]

Hello SpencerBoy11, Thank you for your response!!!

Please don't knock yourself out updating your homepage. You have given us enough "meat to chew on". Just keep posting here and asking questions. I too am suffering with brain fog. In addition I am losing my balance. At 82 years old I would expect fatigue factor... so just take it easy.... Rome wasn't built in a day.

As I mentioned above "KEEP POSTING AND ASKING QUESTIONS".... Lots of smart guys here -excluding me......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/11/2021 11:45 PM EST

[SpencerBoy11 in reply to j-o-h-n]

Had my 1st appointment with Dr. Schwartz, Blood and Cancer Specialists, yesterday. Pleasant surprise. They had split off from Arizona Oncology years ago because of the way patients were treated. Everyone I had contact with were friendly, polite and caring. Only fly in the ointment was lack of reports being transferred Az Oncology. I had copies of most pertinent tests. While there I heard or saw many caring conversations Dr. Schwartz had with various patients.

A blood test was taken in their office with results promised next week via a call from the Dr. Tests will be done the next b4 my appointment. Was sure that my treatment won't be changed and it wasn't, however, there is still shortages of Lupron and Eligard. Had to settle for a 3 mo. vice a 4 mo. shot.

Want to say I feel like a MaleCare junkie.

I end up here 2 or 3 times a day. Always learning something valuable to me.

[j-o-h-n in reply to SpencerBoy11]

Good News....for you...... We just love MaleCare junkies.......At 82 you're a whiz......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/14/2021 5:32 PM EST