Misdiagnosed?: Met with my Radiation... - Advanced Prostate...

Advanced Prostate Cancer

12,737 members15,438 posts

Misdiagnosed?

Dad1963
Dad1963

Met with my Radiation Oncologist to discuss treatment plan. He showed me a graph of my Psa numbers since 2011. My primary was running Psa every 4 years because of the family history of prostate cancer. Last one was in 2015. The Psa was 8.2 I was never informed of the results. Only knew about my high cholesterol count. Thoughts in my head about what if I had gotten treatment then. Would I have been non metastasized? What I had nerve sparing? Would I even needed a radical prostatectomy? Very saddened and depressed over this.

26 Replies

My experience is that after a while this kind of sadness, anger, and/or "shoulda/woulda/coulda" ruminating about the Past started to fade away after I had some time to acknowledge the feelings and then get my thoughts beyond them and more into the Present moment.

(I had a normal PSA around 2.0 at age 52, and there was a lack of testing until I was 65 years old 4 1/2 years ago and had become very metastatic and symptomatic and had a PSA of 5,006, with ultimately incurable Stage IV prostate cancer.)

Our life is lived in the Present. That's where we allow the love and happiness to occur, sometimes even despite our old habitual selves, ... at least in my experience.

Hope things feel better tomorrow.

Charles

Dad1963
Dad1963 in reply to ctarleton

Thanks. I’m processing all now. My wife is very supportive. Though she was dealing with the news herself.

I understand the sick feeling of potential opportunities lost. As ctarleton wrote, it is generally more productive to live in the moment and plan for the future; what's done is done.

But there's more. There aren't a lot of treatment options for this disease, and none of them work all that well. The results of the 10-year ProtecT trial, published in October 2016, showed that

"27 men would need to be treated with prostatectomy rather than receive active monitoring to avoid 1 patient having metastatic disease, and 33 men would need to be treated with radiotherapy rather than receive active monitoring to avoid 1 patient having metastatic disease. "

nejm.org/doi/full/10.1056/N...

Put another way, if success is measured by RP or RT preventing metastatic disease after 10 years, the odds of either treatment helping are less than 4% for RP and 3% for RT.

That study also showed a significant decrease in quality of life for men who had RP or RT compared to those on surveillance.

So your lack of treatment 4 years ago is unlikely to have changed the course of the diseases (96+% unlikely). But you had 4 or more years of a good quality of life. That's a very good thing.

Good luck!

Hi, 4 extra years without the ravages of ADT. chemo etc i would not sweat it. If i was told i could quit all these treatments and have 4 years with the quality of life before treatments. I would do it in a heartbeat.

Thomas

“Yesterday is history. Tomorrow is a mystery. Today is a gift. ThT’s why they call it the present.” Eleanor Roosevelt.

I disagree with the attitudes being presented and, yes, I went through the same. The doctor's job is to provide the patient with information. Then you, together with one or more doctors of YOUR choice, can evaluate different options. Withholding the information with "oh, it's ok" is criminal and worthy of a lawsuit in my opinion. Such god attitudes on the part of physicians must be eradicated.

sdnb
sdnb in reply to herb1

Thank you, thank you, thank you, "herb1". That happened with my late husband, but it was too late for a medical malpractice case to be brought before a judge. Yes, withholding information, or ignoring red flags as a rapid rise in PSA in a short amount of time definitely was criminal.

Kevinski65
Kevinski65 in reply to sdnb

Some PCP docs won't do a PSA. Recent articles claim it's reeking havoc on patients who may have sought treatment.

I too was furious when I was dx with Gleason 9 in 2013 when Psa was 6.6 but actually double (13.2) since I had been on finasteride for ten years for BPH.

Why didn’t my HCP know that? At least he knew that quick doubling of PSA was a red flag and send me to a urologist for bx.

I considered a law suit but no one thought the case was worth it.

Anyway I’ve been over that for years and have moved on with the treatments noted in my profile.

My PSA is up again to .31, I’m going off ADT3, and waiting to see what happens while planning another ct pet scan to find the location of recurrence.

All we can do is live in the present . I thank the Lord for my blessings.

Bob

Thanking the lord for your blessings doesn't do much to prevent gross incompetence. Don't feel ashamed about being angry. I'm pretty sure Eleanor Roosevelt would tell you that if your doctor screwed up he should be held accountable.

Break60
Break60 in reply to CaCruiser

I agree but since I had annual tests and my PCP asked for another test when my psajumped from 2.7 to 5.4 and then to 6.0 and referred me for a bx , Attorneys said I had no case.

sdnb
sdnb in reply to CaCruiser

AMEN! AMEN! Thank you ever so much for your understanding of "gross incompetence" by a medical professional. As mentioned above, my late husband's primary care physician "screwed up" big time . . . his error caused my husband to not receive early treatment which could possibly have saved his life, and I would not be living as a widow. This topic makes my blood boil, and we have had other conversations about this on here. The mere thought that some people can not see the injustice is mind-boggling, to say the least.

So sad! However, I had mine done every year and it was not enough. Metastatic at roughly 10 months after primary treatment.

Gourd Dancer

I think your oncologist was irresponsible. In fact it may be malpractice to have left you in the dark.

Dad1963
Dad1963 in reply to Stelle

It was my primary Doctor. She was all over my cholesterol levels but didn’t say a word about my Psa. That was two years before I was diagnosed. When I went in for some pain in groin area she immediately had blood work done. A clear sign that she knew she screwed up.

sdnb
sdnb in reply to Dad1963

Yes! And my late husband's primary care physician refused to acknowledge any wrong-doing, which made the situation worse. If it wasn't that physician's fault, then whose was it?!!

Kevinski65
Kevinski65 in reply to Dad1963

Woman physicians seldom want to do a DRE. At least not the ones I had. Now that the PSA test has been trashed on there's many missed opportunities for treatment.

sdnb
sdnb in reply to Stelle

Any of these incompetent acts constitute medical malpractice. Thank you speaking up.

I have a similar story DD1963. Back in 2012 in was asked by my family doctor on a routine checkup if there was anything bothering me that he should know about. I said that I've been having the sudden urge to urinate. I asked if I should get a test. Being I was only 45 I didn't know anything about prostate cancer. He says you're to young for that being the standard is wait til your 50 and the insurance won't pay for that. Fast forward 2 yrs and I'm back in getting testosterone shots because of having ED problems (wife's urging). Of course he failed to test my PSA until after the 2nd shot which finds it at 22. So occasionally I wonder if I would of had metatastic PC if they would of found it 2 yrs prior. But on the other side I thank God that I got those testosterone shots and they found it when they did. I found dwelling on it just depressed me so now I just concentrate on the positive part that I'm still here 4yrs after diagnosis!

you would easily win a lawsuit.

Dad1963
Dad1963 in reply to BigM62

I have thought about it. Not sure what that would accomplish. It wouldn’t give me my life back. It won’t change anything I’m going through. Thanks in trying to stay positive and live for today and tomorrow.

BigM62
BigM62 in reply to Dad1963

so it doesnt happen to someone else at this doctor. And if you dont need the money, donate it to other PCa victims' kids. I am only 55 and will leave behind two kids under 6 because my doctor ignored results until suddenly my bone mets impacted my ability to walk. How else to pay for my lost income to take care of them when I am gone? It would make me feel even worse if i found out later that the doctor had done this to someone else.

Dad1963
Dad1963 in reply to BigM62

I went and confronted her yesterday. I ask for my complete medical records. I have been in touch with a lawyer. I am going to proceed when I have the copy of my records. I have a wife who will need the money and 4 kids. You are right I need to do something.

sdnb
sdnb in reply to Dad1963

Good for you!!! You still have time to do something about it. We didn't. But as "BigM62" expressed it, you wouldn't want to learn that she repeated this error with someone else who in turn lost his life. Thank you for following up on this matter. If you win, then a lot of us "win", in essence. We, spouses, still must live without our mate, but it might create some changes in the terminology of "PSAs of under 4 are not a problem. . . . begin to worry when it is 4 or higher", as we were told. It didn't take a rocket scientist to know that an increase from 2.0 to 3.5 in eleven months meant that something is very, very wrong.

sdnb
sdnb in reply to BigM62

Yes, absolutely !!!

As a caregiver for my late husband, I can definitely relate to your dreadful situation, Dad 1963. My husband's primary care physician's assistant handled his PSA results, and she felt "it was alright" because it was 3.5, up from 2.0 within eleven months! This crazy notion of PSA scores of being 4.0 or higher and then you look into the severity of it makes me angry!!! I've written here before about the situation that occurred in 2010. If only the primary care physician had looked at his assistant's results, which he should have known to do, then my husband would probably have been sent to a urologist for further testing. Dad1963, believe me, you have every right to be darn-right furious, as should your wife. The reply written by the following gentleman, ctarleton, remarks that "after a while this kind of sadness, anger, and/or "shoulda/woulda/could/" ruminating about the Past start to fade away", blah, blah, blah. . . . . personally for my late husband and me, that remark is total bull sh _ _! We were beyond angry, and if time had not lapsed, I was ready and armed to fight that primary care physician and his assistant toe and nail in a medical malpractice case. I'm so, so, so sorry that you and your wife have found yourselves in this horrible circumstance.

(I have taken time to read passed ctarleton's reply, and I'm shocked to see several other men agree with his reply to you. Thank God, there were more people who stood up and agreed with Dad1963 and his right to be angry enough to file for medical incompetency. I am a Christian, and I understand all about forgiveness, but in some situations, even Jesus, himself, and Eleanor Roosevelt, who was quoted, would have been hard pressed to "just let it go and leave it in the past". Obviously someone should be held accountable for the gross errors.)

You may also like...