Doctor didn't do routine PSA. Now we're screwed.
Posted , 10 users are following.
Guidelines came out in 2012 that recommended that it was better that a relative few men died of prostate cancer than more men suffer avoidable impotency or incontinence.
The medical system had the knowledge and ability to detect PC and save the lives of men but it knowlngly abondoned them. My husband is one of the victims.
He had physicals in 2012 and 2015 but doctor didn't offer or mention PSA testing. He believed he was healthy. Then in 2016, he developed symptoms and finally, when PSA was done it was 28 and he was found to have a Gleason of 4+5 with all 12 cores with cancer.
As his wife, I know I should support him but I'm so angry that he's been screwed by the medical system that I can't function. I'm of no use to anyone because I'm so angry. I understand that most family doctors in USA didn't follow the guidelines but here in Canada I guess the system will do anything to save money. Maybe they made a deal with pharmas. Just think of the revenue from boomers getting mets cancer and needing drugs.
Is anyone else in this boat or are we all alone?
0 likes, 25 replies
ES28567 barbara93762
Posted
So sorry for your husbands diagnosis. I don't blame you for being angry. But your husband needs your support so very much right now. You both have some hard decisions to make. But there is hope and options available. I don't know your financial situation but check into proton (not photon) therapy. (Call Loma Linda in USA and request their information which comes with a great book (even if you don't intend to go to them). Also, a prostatectomy will let him live and with all the advances they have made, (although the road is tough) with a variety of post treatment options, some in combination, he can be very close to back to normal within 6 months. The MOST important thing (critical) is regardless of the option the two of you chose, is the skill and success rate of the physician.
barbara93762 ES28567
Posted
thank you. We are still waiting for bone scan so we don't know if surgery is an option yet. There might be no options at all. I know my husband needs support but I can't get past my anger. This could have been avoided. As long as nobody speaks out nothing will change. In Canada, you don't have much choice of anything. How could they make a guideline knowing that it will kill people?
gale10132 barbara93762
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barbara93762 gale10132
Posted
Thank you. I will look into proton therapy. We would have to pay out of pocket but I don't care. I know anger will not help but I don't know how to stop being angry. The government of course knows that not doing PSA testing saves a great deal of money. No screening program begins or is withdrawn unless the business case supports it.
Roger2Dodger barbara93762
Posted
So sorry about the cancer. I don't live in Canada, but My opinion the fault is your Doctor. It doesn't cost that much for a PSA test. What is the age of your husband? I am wondering about the guidelines you mention that came out in 2012.
barbara93762 Roger2Dodger
Posted
I'll bet every male doctor,his brothers and friends have all done PSA tests. Here, if you know about it (and here I am at fault for not knowing) you can demand the test, but you have to pay $50 for it. The doctors who don't even mention PSA testing are supported by the guideline so they will not get in trouble. The guidelines first came out in the USA and Canada soon followed. The difference was that most American family doctors (being doctors first and not agents of the government) ignored them. Here is an article about it. https://www.ncbi.nlm.nih.gov/pubmed/27527411
ES28567 barbara93762
Posted
Barbara,
Don't beat yourself up. I am 57 (now) and did not know anything about the PSA test. I only found out because I was having urinary issues associated with BPH. My GP had retired so I had no one to go to. My GP gave all his patients medical records to a female nurse practitioner (talk about an awkward "first visit"
.
After being diagnosed with cancer, I went from barely knowing I had a prostate to something just shy of a non-medical expert. Even in the USA,and all over the world, every man (and partner) must be be their own best advocate.
The PSA is only a tool and at one time it was relied on too heavily and many men were getting unnecessary biopsies and being unnecessarily worried. Just an FYI...Men can have a high PSA score and not have cancer and men can have a low PSA score and still have cancer. It is just a tool. So as I said, don't beat yourself up over this.
If your husband is like most, he will go through many, many emotions which may include depression, anger, and even mourning the loss of his health. It's ok for you to feel those same emotions (and others) but focus your energy on finding the best plan of attack. Question everything (especially the doctors as they will recommend the treatment they perform and tend to downplay other options. Don't let any doctor tell you a procedure (that they don't perform) won't work. Research ALL your options and then decide what is best for your situation based on what is important to the two of you. No choice is perfect and no one choice is a one size fits all solution. Ultimately, it will still need to be his choice and I hope you can support him with his decision.
Having said that, he should take your feeling and how his choice will impact you in HIGH regard.
Use your energy to relentlessly research and find the best option.
ONE LAST THING...don't panic. You need to act soon but don't think the first recommendation or the first thing you read is the right solution. Read up on ALL the options, then decide.
geoff90305 barbara93762
Posted
In Australia, the PSA and PSA/Free are paid for by the gov't. Despite my general doctors disagreement, (he thought if you get PCa, then so be it, so why bother !!!) I have had the PSA tested for the last 15 years, always 2.2-2.5. (I am now 67) Suddenly, after a bad UTI, my PSA went to 7.4, a month later to 8.5, and 2 months later to 12. I had a mpMRI on a 3T machine, as I refused to have the blind biopsy. The MRI results were good, no areas of concern and a PIRAD score of 2, which for guys of my age is normal.
I see a urologist next week to try and sort out why my PSA still rising and if the prostate is infected and how we remedy it.
The interesting thing is my general doctor said today he has a much higher PSA than mine and is worried but one of those things...and seems to be avoiding getting an MRI...sort of like sticking your head in the sand. I think the sooner you confirm you have PCa of any size, the sooner you remove it, and move on.
So Barbara, get over your anger and get researching. Have you husband get a mpMRI, and it will quickly indicate if he has PCa, where it is and the spread, if any. I read a paper last month that said even if the cancer has spread, still get the prostate removed/zapped etc, so the source is gone, then go after the bits that got away.
Geoff
dbcriss barbara93762
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barbara93762 dbcriss
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rennie77 barbara93762
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Dear barbara93762,
You are not alone. My 58 year-old husband would not be fighting for his life right now had his PSA been routinely tested. We live in the US. Upon joining an HMO in 2011, he was given a baseline PSA test which was fine. It wasn’t until August 2015 that his PSA was tested again due to some minor urinary complaints. PSA was 54, then 137 just one month later. He was diagnosed with stage 4 prostate cancer, metastatic to the bone. Had it been caught earlier, he may well have been cured. Now, it’s too late, and a nearly a year after diagnosis there is no hope for a cure, only hope that we can manage his symptoms to keep him as comfortable as possible until he leaves me and our 12 year old son behind.
Can I relate to your anger?—hell, yes… Anger is a very appropriate and understandable emotion. I personally find anger an easier emotion to feel than grief and fear. My husband is deeply hurt that his illness is causing his loved ones to suffer. I had to find somewhere else to express my anger so I wouldn’t hurt him more. I now pay a counselor regularly so I have a place express my rage—which then ebbs and flows into a variety of other emotions that all come and go, then come and go again...
I can’t change the medical system, but I do tell every man I know and woman who loves him to get a PSA, and demand one if you have to. I pray that your husbands bone scan comes back okay. Even if it doesn’t, there truly are treatments that can help and extend life for a very long time. It was just not so for us. If I have learned anything on this journey, it’s that no two cancer cases are the same, outcomes differ for each patient, and there is no crystal ball.
Also, keep talking about it--here, support groups, friend, shrink, wherever. Just keep talking about your feelings.
barbara93762 rennie77
Posted
I'm so sorry to read about your husband. Bad things happen but it's so hard to accept when you know they could have been avoided. Have you confronted the family doctor?
Legally, the doctor is protected by the guidelines of the task force that recommended no routine PSA testing. What a financial windfall for the HMO.
Incredibly, my husband's bone scan was fine but we need to move fast. Now we are facing wait times.
I wish you the very best. Some hope is that new treatments are being developed all the time and so survival rates etc relate to the treatments in existence in the past.
miss_sue barbara93762
Posted
+Barbara ;
I know you mentioned you live in Canada. What province to live in? The reason i ask is because the same exact thing happened to my husband Dave . I couldnt even begin to tell you how angry I am because I lost Dave to prostate Cancer Aug 29 2015. Our situation was exactly like yours but I had booked Dave a complete physical in 2009 with the clinic in the town we had just moved to. I had talked to Dave and he left here knowing that he was to have a Dre exam as well as Psa testing . All we could get for medical was a nurse practioner who told Dave at 57 he was to young to worry about PC and she doesn't reccomend PSA testing because of false readings. In 2010 Ed problems had started at that physical (if you can even call it that ) . She told Dave all men have THOSE problems again nothing to do with prostate checks of any kind. He requested to see the clinic Dr but was denied acess. In 2011 he wouldn't go for an appointment for a physical again and in Nov of 2012 he had no other choice but go there as the urinary problems where so bad . Dec 5 Psa results come back at 80. She doesnt even know how to read that tells him his psa is 8 . Royally screwed up request to urologist that didnt get put in for a week even though she said she was going to do that ASAP. Biopsey had to be prosponed due to blood clot caused by the cancer. May 5 2013 after a biopsey result from April 4 . Stage 4 to late for prostectomy to late for radiation . Firmagon injections months of researching ...begging ...pleading for treatments anything to keep the man I loved more than life itself here. Chemotherapy didn't work , xtandi and zytiga didnt work , radium 223 didnt work. They wouldn't do a ARV 7 test and had they treated cancer as a individual case they could have probably put Dave on parb inhibitors and just maybe he would be here . There is genetic cancer in Daves family his mother had breast cancer so did his mothers sister his grandfather died of prostate cancer on his mothers side,...by why would any one screen for prostate cancer ?? I ask myself that question all the time . When Dave passed last August it was the most horrific day of my life . His Psa when he died was 10,300. He suffered with bone marrow supression from May of 2015 .He wasn't producing any red blood cells .I have taken my complaints about the discusting lack of screening by the nurse practitioner as high as I can go .It is nothing short of murder to not follow psa in a man . The final report sits for over a month for me read on that complaint process and you are absolutely right they have everything covered so they can get away shoddy medical care that causes death .
geoff90305 miss_sue
Posted
As a man, we have to accept, prostate cancer awaits most of us.
For the medical profession to refuse you the PSA test is criminal. So, a PSA test may cause you some concern...so what....better to have the information you have a prostate issue of some kind, that needs resolving, than have no information at all....until it is too late.
I think every male should get a PSA test at 40, 45, and 50, then yearly from then on. If it causes you to need to follow up why it is high, so be it. BUT, it is your choice, not some one else who really has no skin in the game.
Geoff
barbara93762 miss_sue
Posted
Miss Sue, I share your anger and I'm so very sorry for your heartbreaking loss. Your Nurse-practicioner's ignorance is inexcusable. However, in our case, it was the family doctor that was ignorant (ON). With a PSA of 28 and free ratio of 7% as well as a prostate that was barely enlarged and very dense, she did not suspect cancer and forewarded a non-urgent referral. After 2 weeks of waiting for an appointment we went back to the family doctor. I told her we were very, very anxious and if wait times for cancer were so bad we would go to the USA and pay. She looked at me like I had 2 heads and said, "Who said anything about cancer?" It was not even on her radar.
I will always regret that I had no knowledge of PSA screening. I read newspapers and have a good education but nothing about PSA screening ever crossed my path. I was aware that prostate cancer is a leading cancer for men but I made the foolish assumption that the family doctor ordered the necessary tests etc when my husband had full physicals in 2012 and 2015.
I believe that you can make a difference. Is it possible to send a PM?
miss_sue geoff90305
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Geoff you are right a base line PSA test at age 40 should be done . I think if genetoriol cancers like breast or prostate run on any side of you gene pool than screening should be followed from that age on a regular basis. They always talk about what goes on in men if your brother gets PC or Dad but in Daves case the cancer was all on his mothers side. Had Dave been a woman with breast cancer showing up as it did with his mother and aunt you can bet the threat of cancer would have been taken far more seriously. In Daves case he was a only child his fraternal family history realy was not known . All the more reason to screen..When I booked Daves physical I specifically requested all the mens tests and screening be done . Why would you be told that you are to young at 57 to worry about PC. Had that screening been done maybe at that moment Dave might have been stage 2 .Treatable and curable . When we quit the nurse practitioner in May of 2013and I asked her why at his physicals she never did the screening her reply was ""Dave Looked Healthy""" The poorest excuse in the world! ,
geoff90305 miss_sue
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miss sue,
When I read your post, I am not sure if my sadness was greater than my anger emotion.""Dave Looked Healthy"""...what sort of a statement is that. So, do we do away with blood tests and xrays etc for young people who all seem to look very well, but some have some terrible things wrong with them.
Did you live in some mining town in the middle of know where? Amazed Dave could not talk to a real doctor when this all began..
It is up to our selves to manage our health. I do not rely on the MD for his/her decision or government guidelines for treatment or tests. A doctor is simply an auto mechanic for people. I research what I want and arrange it. If the Gov't wont pay, then I pay for the test. I was advised that the Government will not subsidise my recent MRI, as the technology was not "proved"...I paid the $500, but got a easy to read and understand radiologists report. Apparently, I do not have gleason 4/5 but maybe lower grade, but nothing found, so all conjecture. If lower grade, I have heaps of time to work out what's next..well, at 67, not that much time.
I was reading a report from the states saying maybe, just maybe they got the ruling wrong, as now, due to no earlier screening, many more men are presenting with stage 4 prostate cancer, and this is sucking away far more resources, than PSA testing and a few biopsies. Is what is more amazing, it is men who made this decision.
Anyway dear, I hope you manage to get "them" to agree, more could and should have been done for Dave; though, they cover their tracks and it is just another statistic.
Geoff
miss_sue geoff90305
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I totally agree with you about health care .Right now here in Ontario Canada the decision has been made that a physical exam should only be done every 3 yrs. That includes screening for cervical cancer in women . Its a total scam ! If medical gets so negligent about preventive care of course cancers that if caught early will go undetected until they are uncurable stage4 diagnosis. When the system is over run with people requiring hopitilisation and put stress on the resources then will the light come on and they then rethink screening.
I couldn't even begin to tell you how utterly angry I was about alot of Daves so called medical care. We had one Dr tell us he didn't want Dave as a patient he was only doing RA223 as a favour.Even though Daves health care card was scanned before the procedure. He didn't want to awnser my questions? ?? 2 days before Dave passed away the Dr we had as a GP told home care nurse he wanted to see Dave . He came to our home and the first question out of his mouth was refresh my memory what kind of cancer does Dave have? We had been to his office In July at that time he sat and read what was going on he didn't read one single test result or know one single thing about Dave even though every single test result including Psa that was at over 6,000.As we left his office I knew we we were totally screwed of health care that even resembled the lowest of care.