Hi. My father, G9 recurrent since May 2020 with bone mets, told me today that he can’t get over how he has been mistreated by the health system. Wanting help for years since he has PCa in the family, doctors saying not to worry etc. When they clearly should have been taking him seriously. I know a lot of you have been going through the same. How did you manage?
Bitterness: Hi. My father, G9 recurrent... - Advanced Prostate...
Bitterness
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TheTopBanana
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42 Replies
•
My husband was, basically, told the same thing by his doctor and it is something we wish he could go back and change. It has been over 2 years (when he was 58) since he found out he is metastatic so I would say time has helped. It is such a bummer and I wish we could turn back the clock. I do want his GP to know that he needs to be more proactive for other men in the future.
Thank you for sharing, and also saying time will help. I completely agree, I feel the same with my father’s doctor.
My husband's PSA kept creeping up over several years, but his dr said not to worry, etc... if only....
That is truly horrible...
• in reply toHope59
Our doctor did the same- he had a PSA of 6.9 then a year and half later 29. We have to let it go or we would waste valuable time on regrets. They were doing too many biopsies and then not enough follow ups.
Patients need an advocate, preferably someone with enough knowledge about the patient's condition or they can do it themselves if able.
I learned this from taking care of my father, I would often have to make noise and push for things. It's kind of sad, but that's often the way it is. My own lack of knowlege cost me when I was first diagnosed, but I'm doing my best to make sure it doesn't happen again.
• in reply to
Me too !
That feeling is real. My PCP said the PSA test wasn't a good choice. I had to sign a paper explaining that the test could be a misdiagnosis. Basically had to make them give me the blood test. Showed a high score and the biopsy followed with a 4+3.
Radical Prostatectomy followed and now facing radiation and ADT.
The reason I made them give me the PSA test, my brother had PSA tests over the past decade. PCP stopped giving him the test. 4 years later he has Prostate cancer metastasized to arm, leg and shoulder. Chemo for him, and shots of bicalutamide when the PSA moves.
So early diagnosis seems to have been shelved by the over-diagnosed. Insurance doesn't want to pay for unneeded biopsies? I don't know. Treatments for advanced prostate cancer are pretty expensive. The feeling that we've been let down by the medical world has some validation in my mind. Feel it, express it. Then help him live to his best, every day. Life has always been a challenge, here is one more. There are groups for relatives of cancer patients.
Good luck on this journey. He is fortunate to have you involved, there is a lot of good experience here.
If I recall you are in Sweden? Not being familiar with the health care there, isn't it universal health care?
Yes universal health care (minus dental)
I learned to be my own advocate - a process, I know, you are going through. It is perhaps (I'm just guessing) less of an issue in America than Sweden because "shared decision-making" is drummed into medical students in the US. It is practiced at the top medical centers, but probably less so in community practice. I don't know about Sweden, perhaps doctors are more paternalistic there, and patients expect that? On the patient side, there is probably a more cowboy mentality (individualistic, self-reliant) in the US and less respect for authority. Also, with private health care, we are free to pick and choose (for better or for worse).
Yes, I would say that is can be more paternalistic here, perhaps a more inferiority to doctors by some patients? Even though it is free health care for everyone, which I think is HIGHLY positive. But less options to pick and choose, which I would like now.
I think in the Netherlands, they get excellent free healthcare, but they can pay for private healthcare too. That seems to be the best of both worlds. Hopefully, the US will get out of the Dark Ages and get something like that.
Australia has that too. I'd like to see that here.
Amen. My surgeon was a top stream urologist who was head of robotic surgery at Piedmont, Atlanta. Still, post RP pathology showed .5mm focal margin.
I am my own best health advocate. Where I live in Doha, the socialized medicine for prostate disease is good.
Others in my surgical cohort used to question my proactively with this disease and tease me for reading so much about PCa. When we talked about our common disease post RP, they knew little about the role of a rising PSA, etc. My point is simple! Stay on top of your health. Put the time in because no one else will most probably.
I have been through this w my mother's and brother's doctors. I filed a complaint with the state against my brother's doctor. I called my mother's doctor and blasted him in detail. In both cases, I wrote a review and outlined my grievances on popular websites that review doctors (vitals, etc). I believe my actions were warranted and I believe that others will benefit for my doing it. Having a doctor fail you is not just life-changing but psychologically devastating. This site will be very helpful and healing. Good luck.
I agree with the previous comments as I too have had similar experiences with health professionals. I have posted previously that we need to be the drivers of our own treatment plans. Unfortunately, I have come to expect that some health care providers will not be not as helpful and empathetic as I would like. I therefore practice "Expectation Management" and try to be clinical in what I want, such as a script or a referral. I guess I don't expect too much any more. For me, this forum is essential in understanding APCa and preparing for the next step in my treatment plan. If its meant to be, it's up to me..... 😎DD.
I’ve seen some Other guys that had inattentive Doctors allowing them to fall into #4 APC . In my case I waited almost until I was done to even go to a doctor . My dad had this. I knew that needed to check someday . At 53 I got taken down with k failure. I was under a Uro’s care for 5 weeks and I don’t think that they should have allowed that to happen to me . But I should have been in a uro years before I did . I keep telling the PA that I felt like I was dieing. It was Friday . She told me “ This isn’t our doing, this isn’t urological . Go to your GP on Monday. But just incase, go to lab core to check kidnies. So I did . We drove an hour home . Another hour later I got the call “ Go yo the E R , you’re in kidney failure. “! So we did. Most painful trip of my life. We felt mal practice . I was messed up with a foley and tubes then stents for two years total . Thanks dr. A lot of us have met a dr like these.
Good luck to you and your father. 🌵
Docs like these exist because the majority of patients are comfortable with the idea "I have confidence in my doc, won't hear anything". This was what one former co-worker of my wife's was telling her each time she raised the subject of his PCa treatment. He is now RIP. Another former co-worker of mine with a PSA of 11, a PIRADS 4 and a negative fusion biopsy is very comfortable because his doc told him that the negative biopsy is all that counts. Whatever I advised him to do, even the simplest like a quarterly PSA test, his response is. "I can't do anything of my own. Doc said see you next year, this is what I am going to do". The old cliché applies here: "I takes two to tango".
TheTopBanana• in reply to
In my fathers case he searched for help over and over again without trusting the doctors, but got declined since he got a low PSA. He even got the surgery in private health care (where they found out he was G9 with low psa) and the PSA remained undetectable for 3 years. His main regret now is that he should have looked abroad right away in his 50’s. In my fathers case, and many others, I feel the doctors never listened to his (valid) consern and I don’t think it would be helpful telling him “it takes two to tango” since he already is clinically depressed.
I feel that in the US doctors tend to overtreat, because they have an incentive to do that. Versus some places, with free health care, they need to keep costs down, thus perhaps undertreat, at least initially. Also in the US we can sue doctors for mistreatment. Of course I've also learned from my own health issues that not all docs are equal and just because some are practicing medicine doesn't mean they graduated at top of their class or even have a real aptitude for medicine. Like anything else, one can get a degree in something and just not be real good at it. And so over the years I have learned to push more and be my own advocate.
As for your dad, I understand his bitterness one hundred percent. Hopefully he can move past it just a little and try and enjoy the time he has left. I think it's human nature to look to blame someone though when things go wrong. Or even blame ourselves.
The past is past. Yes the system failed many of us. I suffered excruciating metastatic pain for 6mos and 55lb weight loss before my GP got around to ordering PSA and Alkaline Phosphatase test when my records showed PSA at 7.5 a couple years before.
Sometimes they just don't get it.
It was too late for anything other than SOC Lupron.
I've tried to quit dwelling on it, (how am I doing?), and focused on education, getting a better team together and judging treatment choices.
Support Groups have been invaluable. Questions get answered and real experience shared.
2Dee
In 2012, I had a normal PSA test and the GP advised me that it was not a good idea to have PSA tests regularly because of the possibility of false positive results leading to unnecessary treatment. Unfortunately I took him at his word and didn't have another PSA test for six years. That was when I discovered by chance that not only did I have PC, but it had already metastasised.
Wow! Big shock, then disbelief, then anger at the bad advice I'd received. But before too long, I made a very conscious decision to accept the situation. It was, what it was, and dwelling on what could have or should have been, was not going to help me at all. I decided that having a positive attitude, and looking forward not back, was going to be a lot better for my mental and physical health. It was going to help me fight the cancer. Stress does the opposite.
I know it may not be the easiest thing for everyone to do, but I believe you have to try. Please encourage your father to savour the precious time he has, not waste it on things that can't be changed. Try and help him to find joy in the people he loves and the things around him that give him pleasure, and just as importantly to laugh at the absurd. It's good for the soul. I try and do these things every day ...... and I also advise every male friend, and even sometimes casual unsuspecting acquaintances, to get their PSA checked regularly ; )
I wish your father well.
• in reply tohansjd
So true !
• in reply tohansjd
There is a medical advisory board, the name of which escapes me now, which has pushed US doctors in this direction. My GP is a doctor at a clinic associated with a local medical school and he refused to give me a PSA test. I had just switched to this doctor when I signed up to a Medicare insurance plan. I had to push him to administer a DRE test (at age 66) -- something I had gotten for PC screening for many years prior. The DRE was abnormal and I got sent to a urologist. The urologist was baffled that I had no current PSA results to show him so he ordered that. It turns out that it was only 2.7 so it alone would not have flagged my cancer. My biopsy result was Gleason 8 in one core, 6 in another and 7 in the remaining 3 cores that came back positive. I believe that advisory board is responsible for the sad situation that too many men are already metastatic when first diagnosed. I consider it very foolish to not apply universal screening for prostate cancer to men starting in their 40's.
ctarleton• in reply to
WSO, that advisory body is the U.S. Preventative Services Task Force. For a while in the USA their general recommendation for normal, low risk men for wide-spread PSA screening among the the general population was "D", which in essence was taken by many doctors and HMOs to mean "Don't".
The current USPSTF Guidelines for Prostate Cancer are here:
uspreventiveservicestaskfor...
The more recent Guidelines recommend more exceptions for some men who are younger, and who insist, or who have family histories, etc., but they still do not recommend that millions of men below and above certain ages receive frequent PSA tests for general population screening tests, considering their interpretations of the statistical risks and side effects (costs, infections, deaths, urinary incontinence, erectile dysfunction, etc.) of possible "over treatment" involving surgeries or radiation treatments.
Anecdotally, in my case, I was with a large HMO and had a normal DRE and a normal PSA test in my mid-50s, and was told, "Looks good. See you again in 10 years." Imagine my emotions to learn in 2013 at age 65 that I had severe pain due to numerous spinal bone mets and other mets, incurable Stage IV prostate cancer, and a ridiculous PSA of 5,006.
I can empathize with the "shoulda, woulda, coulda" ruminations and all the negative emotions when such things happen, whether in the USA or in another country's health care system. Anger. Regret. Sadness. Second-guessing. "If only." In my experience, it has taken some time to try to keep my focus in the precious Present Moments, rather than in an unchangeable Past, or in an anxiety-ridden, speculative Future which may or may not happen in ways I might fear or imagine.
Often easier to say than to do, of course.
• in reply toctarleton
Sorry to hear of your experience. Crazy that a doctor would suggest a 10 year interval for prostate cancer screening. After my diagnosis I talked to some of my buddies about getting screened. One guy in his 50's thought a 10 year interval for testing was OK. Nope. That interval is accepted for colon cancer screening, not prostate cancer screening. PC screening (PSA test and DRE) is so much easier and cheaper than a colonoscopy. As far as the 'over-treatment ' objection to annual screening goes -- that just makes no sense. You screen for information. What happens after that info is collected is a separate issue but men like you shouldn't have to endure the risk of cancer progression because some with non-aggressive cancer or high PSA due to other causes are over-treated.
I went through stages of "hope". First that it was curable and supposedly it was with G9 T3b. Then I just hoped I never heard the word "metastasised" but I did. I can't help thinking that at 53 I don't have much chance of reaching 60 sadly.
Right there with you.
• in reply tokonichiwa12
Please don't give up hope konichiwa12.
Perhaps you might look into complementary supplements that might help, even if there's no scientific evidence showing them to be effective.
Best wishes
Dave
As others have said: educate yourself and learn to be a polite --but firm --self-advocate.
I had an excellent experience so far with medical professionals all along. I appreciate my good fortune.
I live in Canada where we have a public health care with a parallel private system.
My first line GP, Dr Dionne who practice in a private clinic, was very diligent and I had repeated PSA testing each year. ,When crossing
PSA 4 in a continuous upward trend, he referred me to a public clinic urologist Dr Aaron who was equally diligent , who im turn performed tests and biopsies . When it appeared that things were amiss , I asked to be taken up by Dr Fred Saad a renowned uro-oncologist at a large public cancer center. Dr Saad has been my oncologist since Dx in 2012. He has been an excellent guide in my decision making process, providing information and having empathic open conversation.
It is so hard. Things can change so fast with your health. My husbands PSA was normal in 2018. In 2019 when he went in to have it checked, it was now 17.9 and already into his bones. I was diagnosed with breast cancer 8 months after my mammogram. I found the lump. The went back and reviewed all the pictures, nothing was there. It is so hard not to play the what if game. Now the goal is to stay alive!
It is hard for the medical professions due to insurance, my PSA took 10 years to creep up to the stage where it was noticed. I had to have the major symptoms before I found out it was not good but got to a euologist that was great. He did the biopsy, saw the fear in my eyes and said this is not a death sentence. Those words followed me through chemo and encourages me today. My oncologist is terrific, good bedside manor and works with me not against me, the last rise was small but let him know it did go up and kept him in the loop. There was no cancer in the family but I got prostate cancer, sister passed from lung cancer, brother has had bladder cancer twice and now colon cancer. I blame the environment, food additives and some like smoking, alcohol problem as in my brothers case. He has 2 stents, an aneurism and 3 strokes with the loss of vision in one eye. Luckily my insurance company is good and denied nothing as far as scans due to my cancer. The last scans were good, no progression but that will change down the road. Recently I had to go up to the ER for bladder retention, they drained 2 liter of pee from it. The euologist thinks it was caused by a medication and the liquid stuff you drink from the cat scan. So now i have the cath until weds when they take it out, he does have a sense of humor. He said one of 3 things would happen, not pee, put out a forest fire or be normal, told him I like the last two, he also doubled up on the flomax. The guy knows his stuff and he hooked me up with the super oncologist so I have been lucky so far. We are fighting the insurance company's and their regulations, they think they are doctors.
I haven’t had problems with healthcare . Sorry to hear ur story!
I killed my Son of a Bitch G.P. ................ (His widow and I are best friends now)....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 08/21/2020 1:04 PM DST
Every week it is a new set of challenges. I started a process to get a 2nd opinion from Dr Epstein at John Hopkins on my pathology tissue samples at the start of the month. I was told they were sent...never heard anything more. Monday I asked what status was ...Tues I was told they were not sent .....just the 1st pathology report, so contacted JH (3 calls)...no record of anything...so Wed pressured staff here for tissue submittal ...then told on Thurs it was submitted 2 days after my original request...then asked for current status of review..THEN today I was told the report had been sitting in my file for a week and no one contacted me! AND NOW I HAVE TO WAIT TO HAVE IT MAILED TO ME! When I lost it...they told me I needed to be more patient!!!
Just a typical week with APC!
Now in a battle over getting Genomic testing....which was refused once before.
Thank you all Very much for your replies and sharing, I’ll show this to my father! My long term plan (he refuses now) is for him get his own account on Healthunlocked, I think there is something healing in hearing other stories.
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