Newly Diagnosed In AZ, Need A Little Help

Hi Everyone, wife here. My husband, age 69, was referred to a urologist in Feb of 2018 due to an out of range PSA. Here is his PSA history: (2-7-18) 5.0, (10-4-18) 5.8, (4-24-19) 7.3, (8-5-19) 7.3 (2-27-20) 8.2, (10-20-20) 12.0.

A biopsy was done in the urologist's office on 4-11-18 and the results were benign. Even though the PSA continued to climb, the urologist advised us that he was certain there was no cancer and he didn't feel an MRI was necessary. After the last PSA of 12.0 he recommended an MRI. The MRI indicated a larger nodule that was over 2.7 cm, nodule abutting the capsule and additional lobulation of 1cm indicating extracapsular extension. Overall PHRADS=5. There is a lot more on the report. Of course we aren't exactly sure what it all means.

The urologist told us there was just one small spot and recommended a targeted biopsy that another doctor in the practice could do. When we saw the other doctor prior to the targeted biopsy he informed us that there were 2 nodules, one was quite large at over 2cm and may have broken through the capsule. He said it looked ominous.

The targeted biopsy was done on 1-22-2021. Results show adenocarcinoma with a composite Gleason Score of 4=5=9.

My husband had a CT scan yesterday and is scheduled for a bone scan next week.

We don't wish to continue with the current urologist. We may be wrong in feeling this way, but we feel he let this situation get out of hand and should have recommended an MRI much earlier since the PSA continued to rise.

We would like to get him in with a doctor who we are comfortable with. We live in the Glendale/Peoria area in Arizona. One urologist was highly recommended by our dermatologist, but he doesn't have any openings until the middle of March. I think my husband needs to see someone sooner.

I'm wondering, and I hope this question is allowed, if there is anyone here who lives in our area, who has a urologist they like and trust. We are kind of lost right now and not sure how to move forward.

Post Edited (Dwight & Kay) : 3/5/2021 9:47:44 AM (GMT-7)

Thanks for replying so quickly. We would prefer not to travel. We do have a Mayo Clinic here, although I have heard it takes months to get into them. I wonder also if they accept Medicare. There is an MD Anderson branch in Gilbert AZ and there is a Cancer Treatment Center of America here also. Those are the bigger ones that I am aware of.

You need to see a urological oncologist...basic urologists deal in all aspects of the urinary tract and components thereof...they are notoriosly/anecdotedly weak on the cancer protocols...google Urological oncologist (deal only with cancers) and follow links...that would be my advice...welcome and thanks for sharing your family concerns with healingwell...as with all internet sites...and gently said...caveat emptor

Thanks for the replies so far, will definitely check out urological oncologists and radiation oncologists.

I can’t add much to the excellent advice and comments thus far. My only caveat would be that if you’re uncomfortable with your urologist, get another (and another and another) until you all find the right one. Confidence in your medical team is important.

I agree it’s time for a specialist or two.

Welcome to HW.

I would not recommend my urologist as the surgery wasn't successful. However I did go to the Mayo Clinic in Phoenix for my radiation and the experience was outstanding. However, I don't know about wait times (no wait for me back in 2017) or whether they take Medicare.

Greetings from another G9 patient. (Who's doing quite well, for the record.) While I don't know specific providers in Phoenix, I would recommend that you aim for the top experts there. Certainly, by reputation I would think that the Mayo Clinic would be on the short list if not the very top of any list.

As background, I was diagnosed by a local uro and initially saw a local RO, but I received a much higher level of expertise when shifting to a top prostate oncology practice (Prostate Oncology Specialists) and receiving my radiation treatment at UCLA. I'm sure you'll get the same benefits from a top medical center.

BTW, I'm so glad you're advocating for your husband here. The support I received from my wife during my journey was so very important. And I hope your husband is doing okay...I pretty much shut down the first week after my diagnosis and I see that it's only been a couple of days for him since diagnosis. It's a crazy time, but it gets better.

Thank you to everyone for their replies and continued replies are very welcomed. As you all know, unexpectedly hearing this news for the first time leaves you shell shocked. There is so much information to try to comprehend, and when you don't have trust in your existing doctor anymore that makes it harder. You feel like you are on your own. We are so glad we found the Healing Well forum and the replies we have received already are amazing. Continued replies are welcomed.
I plan on calling Mayo Clinic first thing in the morning to see when we can get him in. Does anyone know anything about Cancer Treatment Centers of America? We have one here, but I know nothing about them.

Post Edited (OnTheGreen) : 1/24/2021 11:14:18 AM (GMT-7)

Hello, OnTheGreen ~~~

Diagnosed in my 40s, I needed immediate treatment. My health history is revealed beneath my signature, at the bottom of this post.

In time, I benched my original urologist --- because he saw "closed doors" when I needed doctors who could show me open doors.

My oncologist opened many new doors --- I met him one Monday and we started new treatments that SAME WEEK.

I eventually added a radiation oncologist, and a urology oncologist from Mayo Clinic in Rochester, Minnesota.

My local medical team watches over my case with precision and compassion --- but my case is co-managed with Dr. Kwon at Mayo Clinic, and I usually visit him every 6 months.

It's an extra level of expertise --- with scans available at Mayo Clinic which aren't available at the local hospitals here.

It's an example of coordinated care, and there's communication between my local doctors and Dr. Kwon, and vice versa.

I mention this, because it's essential to form a TRUSTED local medical team you can depend upon. You and your husband deserve the best!

Seek them out --- and soon enough, you will have assembled your medical TEAM. That feeling of trust is essential. A bond will emerge, in time.

Meanwhile, you can get the ball rolling with additional expertise -- and it sounds like you have interest in getting a consultation booked with Mayo Clinic.

Call them right away on Monday morning --- be assertive, and ask what's possible.

If you're willing - they might offer you a priority option, if a cancellation occurs.

Meanwhile ...

Check out the current threads on your computer screen. Scroll down and you'll see a thread entitled LETTERS TO THE NEWLY DIAGNOSED. It was recently updated, so you will see it on your computer screen, if you scroll down a bit.

Click on the "Letters" thread --- print it off --- and hand the pages from that thread to your husband.

Trust me --- the letters on the thread will help him, as he reads through them. After he has read them, then read through the letters, too --- you are in this fight TOGETHER!

This website is tremendous. Read, peruse, and post whenever you wish.

We're all in this together --- and we're here to help.

We stand alongside each other - and we now stand alongside you and your husband.

With all my best, from the great Midwest ~~~
CYCLONE TEAM FAN ~~~ # Iowa State University

With all due respect and concern - drop this Urologist without delay. And, yes, time is of the essence. If that means you have to travel to timely get the diagnosis and treatment that will help your hubby - just get it done. Need often necessitates some inconvenience. A positive outcome makes it all worth it.

As others have opined, PCa is not an absolute fast track to the graveyard - - unless you dawdle and place convenience ahead of necessity.

I am not out to be hard on you, my good lady. I pray you and your hubby have many healthy and happy years ahead of you.

Godspeed.

NJ Fred

I went to Mayo Clinic in Phoenix. Dr. Paul Andrews or Dr. Scott Cheney. I live in New Mexico and drive to Phoenix.

Hello Cyclone,

Thank you for checking in on Dwight. It's very much appreciated and very kind of you. I hope I am replying correctly. For some reason this website confuses me a little and that is why I haven't done a follow-up post.

Dwight ended up going to Mayo Clinic in Phoenix and we have been very happy with Dr. Ferrigni and his team. He had surgery 8 days ago on 4/2/2021 to have his prostate removed. Here are the results of the pathology:

FINAL DIAGNOSIS
A. Bilateral pelvic lymph nodes:
Metastatic adenocarcinoma involving one of 11 lymph
nodes. The metastasis measures 7 mm in diameter, and there
is extranodal extension.
B. Prostate gland, radical prostatectomy:
Adenocarcinoma of the prostate, Gleason score 4+5=9,
grade group 5.
The margins are negative for carcinoma.
There is extraprostatic extension into periprostatic
connective tissue at the left posterior base.
The left seminal vesicle is involved by
adenocarcinoma;
the right seminal vesicle is negative for carcinoma.
Two lymph nodes accompanying this specimen are
negative
for carcinoma.
SYNOPTIC REPORT
Procedure: Radical prostatectomy, pelvic lymph node
dissection.
Prostate Size: 37 grams; 4.5 x 4.3 x 4.3 cm.
Histologic Type: Adenocarcinoma, acinar type
Histologic Grade
Grade Group and Gleason Score: Grade group 5,
Gleason score 4+5=9.
Tumor Quantitation: Carcinoma involves the posterior and
left
prostate in the mid-prostate and base. The apex is
spared.
Extraprostatic Extension: In the left base soft tissue.
Extraprostatic extension in the left base can be seen in
several slides (B25, B28, B37, B30) ranging in size from 4
to 10 mms measured on these slides.
Urinary Bladder Neck Invasion: Absent.
Seminal Vesicle Invasion: The left seminal vesicle is
involved by carcinoma; the right seminal vesicle is
negative
for carcinoma. Adenocarcinoma in the left seminal vesicle
measures at least 9 mms in diameter and also involves
tissue
adjacent to the left seminal vesicle.
Margins: Negative.
Treatment Effect: Not applicable.
Regional Lymph Nodes
Number of Lymph Nodes Involved: 1.
Number of Lymph Nodes Examined: 13.
Pathologic Staging (AJCC, 8th edition)
TNM Descriptors: None.
Primary Tumor: pT3b
Regional lymph nodes: pN1.
Distant Metastasis: Not applicable.
Additional Pathologic Findings: Immunohistochemical stains
were performed
on blocks B25, B28 and B30 to characterize
the adenocarcinoma; the immunohistochemical results are
consistent with acinar type prostatic adenocarcinoma. The
paucity of neuro-endocrine staining and the cell type do
not
support a diagnosis of neuroendocrine type small cell
carcinoma.
Triple PIN stain: All three blocks show a similar
result
with negative p63, negative high molecular weight
cytokeratin, and weakly positive racemase stains in the
carcinoma.
P63 stain is negative in carcinoma in all three blocks.
Prostate specific antigen: Variably positive in
carcinoma in all three blocks.
Chromogranin: Focally positive in a minority of the
carcinoma, less than 10% in all blocks.
Synaptophysin: Focally positive in a minority of the
carcinoma, less than 10% in all blocks.

We saw the doctor yesterday for follow-up and the plan for now is: Receive hormone injections for the next 6 months (the first injection was done at his first visit on 2/8/2021 along with a 10 day course of Casodex) and track his PSA. Of course, we are hoping for an undetectable psa. Going forward, if and when the psa becomes detectable I'm not sure what will be recommended. Dwight will see Dr. Ferrigni again in 6 weeks. I am wondering if it might be beneficial to follow-up with radiation. I think I read somewhere that following-up with radiation can be beneficial with metastasis to the lymph nodes. I forgot to ask the doctor yesterday, but I assume if one of the 11 lymph nodes has cancer whether or not it is likely that other lymph nodes have cancer. I am assuming that would be the case.

A bone scan and CT scan prior to the surgery were negative.

The catheter was removed yesterday and he is having total incontinence. It sounds like that is normal and,hopefully, will get better with time. He is doing the kegel exercises as instructed twice a day.

I think he was up about every hour and a half and in the bathroom last night and is, of course, very tired and feeling a little down today.

Again, thank you for asking about Dwight. I hope you are doing well.

Kay

Thank you Halbert. Yes, the long haul has begun. We do feel like he is in good hands finally.