Help! Tell me I am not going crazy

Posted by johnny99 @johnny99, 7 hours ago

Hi All,
Thanks to all that replied to my "Biochemical Recurrence" post. You are all appreciated.

I reached out to my PCP about a referral to a medical oncologist. Here is my two most recent (9/24 and 4/26) lab results for my PSA. Remember, I had a prostatectomy in September 2015 and sRT in Jan/Feb 2017. My Gleason Score was a G9 with small positive margins (< 1.00 ng/ml)

4/26 0.327 ng/ml Reference Range < = 4.00 ng/ml
9/24 0.064 ng/ml Reference Range < = 4.00 ng/ml

Here is my PCP's response:
"PSA is normal. I am not concerned"
He does know that I had prostate cancer, surgery and radiation.

I requested him to send a referral to a medical oncologist as I think he has forgotten my situation. I am not going out of mind, right? This is a serious situation, right?

Thanks All.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

wheel1 | @wheel1 | 6 hours ago

You are not going out of your mind, certainly something to cause concern and a referral to a medical oncologist. This is out of expertise of a primary care doctor.

jim18 | @jim18 | 6 hours ago

That is not unusual at all. PCPs have lots of patients and often emails are not even answered by the doctor. In any note you need to explain that you have had a RP and therefore that your PSA should be undetectable, and I would add that the standard of a BCR is 0.2 PSA or higher (do not assume they know that). It is what it is.

lag | @lag | 6 hours ago

Find a GU (genitourological) medical oncologist if you can, but at the very least find a medical oncologist. If you are lucky, you won't need to see a regular urologist first, but do that if you have to. Most primary care physicians are not equipped to advise you properly.

mjp0512 | @mjp0512 | 5 hours ago

"He does know that I had prostate cancer, surgery and radiation."

Yea, but he obviously doesn't know what a 0.327 ng/ml means afterwards. Get yourself to a GUO. I don't think your situation is serious yet, but may become so if not addressed.

Jeff Marchi | @jeffmarc | 4 hours ago

Sure, wish you had included some information on where in the country you live. I might’ve been able to recommend an oncologist in that area.

Today at 3 PM Pacific time ancan.org Is holding their weekly advanced prostate cancer meeting. They will be able to tell you about good doctors in your area. You can attend it for free you just have to install GoTo meeting On your device, It’s free for any type of device. If you plan to attend the meeting, get there 10 minutes early and they will talk to you first, Give you at least a half hour to explain options you have. They’ve been helping people for 17 years and there’s usually at least three doctors in the meeting.. To join the meeting just put in answercancer For the name of the meeting.

A lot of people come to the meetings with your situation. They’ve gone 10, 15 20 years And all of a sudden they have a reoccurrence.

johnny99 | @johnny99 | 4 hours ago

In reply to @jeffmarc "Sure, wish you had included some information on where in the country you live. I might’ve..." + (show)

Hey,
Thanks for the info. I live in Vermont.

Jeff Marchi | @jeffmarc | 2 hours ago

In reply to @johnny99 "Hey, Thanks for the info. I live in Vermont." + (show)

@johnny99
I have looked at both the NCI and NCCN list of medical centers and there is nothing in Vermont.

Memorial Sloan Kettering In NYC
Dana Farber Boston
Roswell Park Comprehensive Cancer Center Buffalo NY

If you come to that meeting tonight at 6pm eastern or next week on Monday at 8 PM eastern time You can probably get Information on doctors closer than that.