Doesn't seem right

My husband was diagnosed with his cancer on 3/9. The dr. didn't tell us a lot. He said he felt it was caught early. I asked him what type and he told us it was a Gleason 8 without much explanation. So he said my husband had to wait a month after the biopsy to get his MRI. The gal at the front desk made our next appt for May 11!!! I said it seems too long to wait but she kept it there. We made the MRI appt for 3/29 and got another PSA on 3/30.
In the meantime, we got several recommendations to see Dr. Ahlering out of UCI. One of them being from an attorney friend who only does medical malpractice and represents doctors and hospitals. He knows all the good bad and ugly in So. Cal. He said Dr. Ahlering is the guy to go to hands down. We were able to get in to see him tomorrow. We also have an appt with Dr. Jeffrey Yoshida out of Hoag on 4/26. So we have been able to make 2 other appts with other drs. before the original dr is going to see us.
The thing that has me upset is I went in to the lab on 3/30 to give them a release form to send the MRI results to Dr. Ahlering. Obviously we are so anxious to know if the MRI shows if the cancer has spread. They sent the results right over which means the original dr should have them. We have not heard boo from him. Tomorrow will be a week. He should have the PSA results as well. We aren't interested in continuing treatment with him but it sure doesn't seem like good patient care. Is it normal for him not to update us and just wait for the May appt? The Gleason 8 has us really concerned even though there was only one positive core and it only had cancer in 5%.
Is it normal to have so long for these appts? We are in Southern California with lots of good hospitals and doctors and yet it seems people have to wait. It is excruciating waiting of the tests and appts with that cancer growing.

the first thing to do is get your slides re-read by a pathology dept that interprets the slides of Pca all the time...Sticky notes at the top of the thread page should help you with that... 1 core with a gleason 8 at 5% is suspect...tho I am no expert...I just have never seen that before...since I have said it tho...I also suspect you will be getting advice from original doctor to have surgery asap...Ive quit trying to not be cynical...but its better than maniacal...Do get that second opinion on the biopsy slides...Not another biopsy...your original slides are kept and copies sent for the 2nd opinion...

First of all, you need to get a copy of the biopsy pathology report. In most large practices, it is available in 2-3 working days, and often viewable from an online patient portal. Posting as much of that report on here would be very helpful to us for our responses.

As others have said, PCa is slow growing, so the delays are OK.

With a G8, you are at a cusp where surgery may or may not be the best solution. Certainly, you will need to do a lot of research and asking. The SBRT variant of radiation is currently getting very high reviews for both cure rates and low side effects.

Catch your breath, take a break, and then come back and keep reading and asking.

That lack of urgency/concern expressed by your first doctor will likely not improve. The office is obviously full already so there is no reason for them to change.
It is up to you to move on and find a uro you are comfortable with. It seems you have done that already. Great!
Yes, PCa is generally slow growing and a few weeks probably won't make a difference in treatment. But it makes a huge difference in your spiritual and mental health. Go with the doc who is responsive to your needs. You will likely be dealing with that office at least a couple of times per year - for many years to come.

I'll share a personal anecdote. After I have blood drawn for my PSA, I can't help worrying about the result. The first office had me come in a week later to get the result. I suffered from "PSA anxiety" for that week. That was unacceptable for me. After that first test I changed to another doc and started getting my results mailed to me directly. Now I get them the next day from my primary care physician's office electronic records portal. My PCP orders the test for me. I no longer go to Uro/Surgeon.

Jeff

Hi up4thefight-

We are also in Orange County. My husband was diagnosed 2/2 with Gleason 9, and we've had some similar issues getting in with some docs, while others have been more accommodating (although through Hoag, he had his MRI and his Bone Scan within a week of diagnosis...I'm not sure why they're making you wait so long just for the MRI). For us, from the date of diagnosis to starting Hormone Therapy was 5 and a half weeks (we delayed it a bit due to waiting for a PET scan approval). Felt like an eternity, but everything we've discovered since is that a wait of a month or two isn't a big deal, even with a higher Gleason score (and it seems that it's best to get all scans/MRI/bone) completed prior to beginning any hormone therapy, as that will hinder a correct reading.

Both Drs Ahlering and Yoshida are urologists (surgeons)...are you meeting with a radiation oncologist as well? Be warned that a urologist is most likely going to tell you that surgery is your best option (in your husband's case, that might be true), but it's prudent to discuss your radiation options as well. We've met with 2 RO's at UCLA, as well as Dr. Lin at Hoag and Dr. Ash at St. Joes. Let me know if you need any information with respect to those referrals.

East Tennessee is bad about appointments as well. And it is frustrating.

It was the results of my 1st PSA test (I think it was). I had called for them several times and could not get a call back. So...one day...I just decided to pay him a visit.

I walked in. The waiting room was (mostly) empty. I gave the receptionist my name. I told her I was there for my PSA results. She looked at her computer screen. She said, "Yes, we have them but, we cannot give them to you." Something .... I don't know what it was, just snapped. This man had operated on me. The only mistake he hadn't made was I was living. Now, they wouldn't give me my PSA.

I told the receptionist "I want to speak with a nurse". In her best annoyed and authoritative voice, she asked, "Why?". I said, "I'm not leaving this office without those results". She rolled her eyes and got the nurse. Then the nurse asked, "May I help you?" I told her what I wanted. The nurse typed on the computer. She said, "Yes, we have them but the doctor has to sign off". "So, you are telling me, those results are in front of you, but you won't give them to me?" She said "That's correct. I'm looking at them right here. But, the doctor is not here. He's at the hospital.". I told her, "Take this down". "Get a message to the doctor, at the hospital. Tell him I am here. Tell him I want my PSA results. Tell him I am not leaving until I have them. Those results are critical to my well-being. You have them. I want them, and you are refusing to give them to me. Tell him, 'I'm coming to the hospital. And however long it takes, however long I have to wait if he's in surgery, I'm going to wait till he's out. He's somewhere. And I'm going to find out where. And I'm going to have him sign this release in person. I want those PSA results".

By now, there were about 5 women in the little cubical. The nurse left the room. In 10 seconds she returned. She had my PSA results. They were printed on a sheet of paper. She handed them to me. She was very polite. She said, "Here they are".

I genuinely smiled at her. And said, "Thank you so much". Then left.

Life's too short.

Hey gang, I really appreciate all of your responses. Today was action filled. I was getting madder than a hatter that doc #1 had not called. As we had an appt. with Dr Ahlering in the afternoon I knew he had the MRI results but we wanted the new PSA result so my husband called him. He finally got back to him in the afternoon and He told him that the MRI showed the tumor had not spread and it was medium size. The new PSA was 11.something. He recommended seeing a RO, Dr. Ash at St Joes. We love St. Joes as they saved my son's life and he has had 2 heart surgeries there. The dr. said we would have an appt the beginning of May instead of the original middle of May.
We met with Dr. Ahlering this afternoon and were incredibly impressed. He felt my husband's case was a bit unusual in that his biopsy said Gleason 8 but only one core was positive with just 5% involvement.. Before I said anything he suggested the biopsy slides be sent to Dr. Epstein at JH. Check, he said it before I even had to. He read the MRI report and was concerned because he said that there should be a measurement listed for the tumor. This is where I need some help. He said that there should be a measurement, something that starts with a P. He said he would expect my husband's to be a 4 or a 5. What is this P word? What does it measure?
So we are going to get the slides reread. Then he said he would probably have the MRI redone because he didn't feel the report on the original was very good. If the Gleason is dropped to a 4+3 then he would still recommend surgery. If it gets dropped to a 3+4 or lower then we would talk about AS. He said many men aren't always comfortable with that if the PSA is on the upward track. He said many men would rather get the surgery done instead of waiting and have the cancer OUT especially if they are younger and healthier like my husband. If we do the surgery w/ Dr. Ahlering he does it at UCI or else this really nice surgery center.
We are not hot on radiation for numerous reasons but we will probably meet with a RO just in case. I want to say thank you for all I have learned on this site from all of you. I asked most of the questions and the Dr. asked if I had a medical background. I felt well prepared for our meeting. Maybe it is based on my son's illness and all we went through. I had to get an education on the heart real fast and I was a warrior. I plan to do the same for my husband.

Ditto on the self advocate thing. You have to push for what you feel is right. I'm just saying... that is what I did. Take the advice you get here from the knowledgeable ones and try to take a deep breath, not easy to do I know. You asked about the adjuvant chemo on a post of mine. The only reason I did it was because I couldn't get Brachytherapy. I did research and had noticed that a few others here had the same treatment. One of the NCCN recommendations for High risk PCa gleason(8-10) is 2 yrs HT+IMRT+Docetaxel 6 cycles. The key is that I was Dx as prostate confined and realizing or learning here from others that a high risk PCa has a good chance of micro metastic. Many MO's believe that 4 cycles is enough.

Anyway, I took it upon myself to talk to my MO and to show him what I found out through my study. He agreed and the rest is history.

Good luck and press on!

Mark

P.S ... TA is correct that the best treatment for high risk PSc confinded is HT+IMRT+BRACHY