New to Prostate Cancer with a boatload of questions, but who to ask?

I noticed this when I changed the hospital and doctor. This kind of scared me because I saw the PSA before the doctor. Many things that you do or take can affect the lab results.
Doctor said if you have 3 successive tests where the result is rising is when they are concerned.

When I was treated at UFPTI their research showed that PSA should be done at the same lab each time PSA are taken. The researched showed there can be difference in PSA test from one test tube to the next even from same lab. Different labs even more.

I have not had PSA taken since my treatments as have to wait 3 months. I questioned the PSA being such a gold marker and not subsequent biopsies or MRI, etc. I was told in past PSA was being discouraged but changed when higher diagnozes of cancer started happening. PSA is only present from prostrate. If it is rising means either irritation or cancer. Thus monitoring it after treatment helps determine if cancer is recurring as it will raise the PSA.

I agree I wish there was a more specific test that could be done for the cancer. Because PSA rising could be irritation and not cancer. A normal PSA level does not mean you don't have cancer nor a high one meaning you do have it. But I guess it helps guide medical providers. I wonder why PET scans are not used after treatments as was told cancer can be seen as different from normal tissues and organs with the PET scan with added injection will show.

I am just lucky I have a very good and through endocrinologist who caught my cancer before it had spread from my prostate. My three-month PSA after my five proton radiation treatments was undetectable. So I am hopeful it stays there for a long time. At 74 it appears the PC will not kill me, and it will be something else.

That is good news and glad to read it they caught mind 2 years ago when I was 74 and mine was locally contained Gleason 9, CR aggressive . I am doing great and high hope for both of us

Hi I’m Marcel: I have found out the hard way that being diagnosed with cancer makes you a doctors personal ATM. I went for over two years with severe lower back pain that know doctor would address, even when I told them that suicide has become my only option. All that was said was, you try to hang in there and left me. Then while looking on the internet I saw that lower back pain in an older man is a red flag for prostate cancer.? I told the doctor to check my prostate and biopsy came back as Gleason nine. Once that was found doctors came out of the woodwork because now they could make money off me. My cancer by the time of diagnosis had already spread so I refused treatment. I asked why no one would help for over two years and now they all want to help? It comes down to money and that’s very sad that life is measured by how much can they make off of a patient’s suffering. I know how you feel about having to pay for answers to all the questions. Best wishes to you and God bless.

Even a gleason 9 that has spread can be treated to reduce pain and to prolong life ( I am gleason 9 CR advanced PC) you need a medical team at an excellent facility in an urban area. Good luck to you, you have a future that is worth living!

I would recommend going to a center of excellence (such as Mayo-Rochester). Rural doctors just don't have the experience that is needed. Before I retired, I went to my local doctor (Davenport, IA) every year to have a physical. One of the tests they performed was PSA level. I was busy traveling for my job, so believed what they told me (everything looks good with your tests, good to go). After retiring, I wanted to more closely manage my health. Went to a cardiovascular team to change my diet so I could get off the statin I had been taking for a decade. The nurse practitioner was a friend of our, so she reviewed my entire medical file. At the end of my first meeting, she asked me if I was addressing my prostate problem. I asked, what prostate problem. She let me know that my PSA had been rising for over 6 years, doubling three time, with an increasing velocity. At that point, I went to Mayo-Rochester, was diagnosed with PC (Gleason 7-4/3). Being 56, I went with a radical prostatectomy and doing well now (10 months later).

Bottom line, these mid-sized practice doctors cannot be trusted. You must do your own research, manage your own health, and get to a center of excellence when there is a problem.

Best of luck,

Jim

Thanks Jim: What really got me is that no doctor in the two years I was in trouble knew that lower back pain in an older man is a red flag for prostate cancer. None ever brought up my prostate? I diagnosed myself. It just infuriates me that I have been put in this situation because of doctors who failed at their job in every way. I’ve come to terms with this now so I’m okay. Thanks again. All the best to you.

Fuzzy123
You might want to check out this Prostate Cancer Research Research Institute presentation:

A good doctor at an excellent facility should give you the tests that they need ( PSA, MRI, pet scan, bone scan etc) to be able to give you a well thought out recommendation for your care. It appears that you did not get the quality medical care that we all deserve. Select the quality facility and be a very good listener
Best of Luck