Diagnosed with prostate cancer recently.

@myboo2u
They don’t do a biopsy during the surgery. After the surgery is done, they will biopsy the full prostate to find out what the exact diagnosis is of the whole thing. You will get a report of the complete biopsy of the prostate.

How many lymph nodes are they going to remove? Are any of the lymph nodes showing they’re having an issue?. Taking out too many lymph nodes can be a problem over time. Did the PSMA scan give you any SUV numbers on the lymph nodes? That tells you If any cancer was found in them. Removing a lot of them when no SUV numbers were reported in the scan would not be productive.

The biopsy was done by a urologist, not a surgeon, right? You can contact the urologist to get more information about the details of the biopsy. Not sure if you can get ahold of the pathologist that actually looked at the biopsy and made the diagnosis of what was found in it. The urologist would have to contact The pathologist to actually find out more details.

Hopefully, you can get a second opinion from Epstein and will know exactly what’s going on.

One thing you want to ask the surgeon is how many surgeries has he done? Also, how many lymph nodes he expects to remove.

@myboo2u
That is physically impossible. 2.54 cm to an inch. That would mean the cribriform Which would be unusual at around .3 mm would have to be an inch and a third in size. They may meant millimeters and if it is millimeters, then it is still way too big. Cribriform is measured in tenths of a millimeter.

Something is very wrong with this number. When you consider that a needle was used to get the biopsy, it’s pretty impossible to come up with such huge numbers.

@jeffmarc
Hi Jeff.
Thank you for the information.
I have to say this is really scary. I will reach out to the pathologist you suggested.

My partner has chronic kidney stones and his urologist based his symptoms on that. He's rather casual.
And seems inexperienced. But we've been seeing him for years.
He did not do the biopsy.
He referred us to the surgeon in the same office.
The surgeon quickly did a biopsy.
I begged for a PSMA PET Scan and scheduled it w/o the surgeons referral.

We then met with surgeon for 15minutes and he basically said that removal is best, and a lymphectomy.
He said, don't worry, you won't die from prostate cancer.
No information about lympnodes other than removing SOME, or anything else.

Just no bone spread via PSMA PET SCAN.

Very casual.

I had to find his scheduler to get a meeting with him prior to surgery. He has given us 15minutes to talk. I know everyone is busy but this is all new.

He's a well known surgeon here and has done thousands of procedures.
(DaVinci robotic surgeries)
His reviews are good. His bedside manor-not as good.

My partners symptoms are worrisome.
Flank pain, blood in semen, urinary issues, back pain, groin pain - due to the fact that he has chronic kidney stones, the doctors have said this is the cause of all of these symptoms.??

I've tried many times to discuss more with his urologist but no luck. And I've tried to reach the pathology office but no response-I'd like to discuss the results in detail.

With the cribriform area, I will reach out to the pathology office that you recommended.
I'm worried the surgeon will be upset by this-but this is life altering.

I really appreciate your time and thank you for all of the helpful information.

Melinda

@myboo2u After being told that I had prostate cancer - which in hindsight he could’ve done a bit more eloquently - my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, it was about self-advocacy and shared decision-making.

If you (he) can’t talk with the doctor/surgeon, are you sure he’s the right one for the job? You can be sure that after the procedure, you’ll have even more (serious/deeper) questions to ask than you have now. What will you do then?

Please try to get a hold of the prostate biopsy regarding the cores and Gleason grades and share that. This will help for others to understand why the surgery is happening. This seems to have moved quickly. Any second opinions?

@brianjarvis
Hi Brian,
I will try very hard to have the right conversations with the surgeon. I'm hoping that he will schedule additional time to speak with us.
Fear of being dismissed by the doctor is really driving the situation.
I believe the prostate removal is the right thing but I know there is so much more.
Thank you for responding and helping me with this.
I'm sure I will be asking more questions down the road.
Melinda

@wheel1
Hi.
I will try to get the biopsy.
It's overwhelming.
I will post it when I have more than the surgeon notes of the biopsy.
Thank you.

@myboo2u
Melinda, if his surgery is in a month, possibly this is moving to quickly. With his highest Gleason a 7 and PSA 4.6 depending when he was actually diagnosed all studies indicate patients have a six month generally accepted window to begin treatment with no differences seen in patient outcomes from treatment between beginning the treatment sooner or within the six months. The studies determined this as it often takes a lengthy time from the actual biopsy date and determination of cancer to getting the results of the biopsy and actual follow up visit with the Doctor can stretch two to three weeks, then a decision is made for a Pet scan, might take another two to three weeks to get that scheduled, then awaiting results, follow up with Doctor , decipher testing, referral to a specialist Radiation Oncologist and a Surgical oncologist, several weeks in to see the specialist’s where they will take the time to spend with you. Once decided maybe a second opinion if surgery is your choice, several more weeks, decision say with surgeon, might be another 6 weeks until he can schedule you. The point is this all takes time and it does not matter that someone will say I did it in two months, great, but the other point is that is the exception and that is why they have the studies and lay out the 6 month time period. If you have time, possibly step back. Is everyone part of the same group. It is helpful to step outside the group for a second opinion and even getting your surgery done where you feel more comfortable.You can take all your records to another cancer center and get your surgery done there.

Hi,
Thank you for the information. I'm currently working on getting a second opinion on the biopsy. The gribriform morphology is scary-biopsy states approx 3.5 cm or 1.4 inches-lesion inside prostate-lower left & midline area.

My partner and I feel very in the dark, but with some of the responses that I have received here-which I greatly appreciate, I have started the process of looking for a doctor for at least an additional consult-even a Telemed would be helpful, and trying to get biopsy to the recommended lab.
I'm trying to post the biopsy results here. Hopefully, this will also help with additional insight.

Melinda

@myboo2u

Lots to learn. 3.5 cm is a large lesion.

I have not had treatment and working thru all the information myself.

My thoughts:

1. Make sure you are working with a Center of Excellence or a Facility that specializes in Cancer. There are always some great Doctors at General Hospitals, but those that just deal with Cancer are preferred.

2. You will want to also be consulting with a radiation oncologist, along with a surgeon.

3. 2nd opinions are so valuable.

4. Do not wait for someone to make a referral or next appointment. Call different Centers and ask for appointments for 2nd opinions, etc..

5. After my initial biopsy results, I started asking friends and friends of friends who they recommended (Doctors). Then I called and asked to see those Doctors. It turned out to be very easy process. It is not always the case, but calling and asking can start the process.

Best Wishes.