Not happy with doctors or with treatment received.

Is it my imagination or do men like my self just get mistreated by a urologist.. for example ; i had a psa of 550 and metastatic prostate cancer stage 4 with bone and lymph involvement and this idiot is treating me for bph... i spent my winters in Florida and summers at my home in Louisville so i had a problem with insurance, medicare, and doctors.. but i saw several doctors in the last 10 years as this cancer is growing in my body... one doctor told me after 70 you don't have to be concernd about the prostate, another ssid you die with prostate not off prostate.. sorry I'm bitter.. I'll have one shot , one beer , and one ---- ...

Gave your thread a subject line. -- PeterDisAbelard

Post Edited By Moderator (PeterDisAbelard.) : 2/9/2018 8:17:42 AM (GMT-7)

The problem may be that you are seeing a urologist rather than a medical oncologist. Medical oncologists are the ones with the knowledge and expertise to help you prolong your life and quality of life. What part of Florida? There are a number of tertiary care institutions with excellent medical oncologists who specialize in prostate cancer.

You didn't say what you are taking or what your comorbidities are. If you are otherwise healthy, you should be taking Lupron (or similar) and either Taxotere or Zytiga to start. There are also several clinical trials of new drugs you might qualify for. A urologist might not have any reason to know about such things, but a medical oncologist would.

If you have Medicare (A&B), a supplemental plan (part F), and a drug plan (part D) you should be about as covered as you can be, and able to pick a doctor of your choosing.

Sorry my stats seem to come and go.. I'm on zytiga with prednisone with lupron and xgeva. Psa is 24.5... I'm happy with my treatment, and my doctor and his group talking to dattoria so im in good shape for the shape im in ... imcomplaining about the doctors that were so stupid as to knot know what was happening to me...

Chuck, all I can say is, it happens. Guys like you and me trust our doctors to level with us, to educate us and at least let us know what they're thinking is going on inside our body. But in many cases, they just don't. I'm fifteen years younger than you, my PSA was doubling every year and all my Urologist told me was that all my tests were negative. He never mentioned anything about cancer, and when I asked him what we should do next his only response was to repeat the tests. I had no idea what was going on.

So five years later I'm coming to forums like this and find out that guys are getting oncotypes and Polaris and all kinds of tests with strange names I can't remember, and I wonder why didn't my doctor know about any of this? I didn't even get an MRI until we moved to Florida and my new doctor asked me if I'd had one before the biopsy. By then it was almost "too late", and I was hearing words like advanced and high risk.

So of course I was bitter and cynical. I even complained over a year ago that it seemed everyone else was getting better treatment than I did. Heck, even the AUS, which I was told would be a simple procedure, had all kinds of problems. But coming here and reading the stories of other guys who have it much worse off than I am has given me a sense of camaraderie. Even when I got my first zero PSA results, I found myself wondering what's wrong, what's going on that I'm not being told?

Anyway, I know there are other guys who are bitter and cynical about their condition, about what happened to them, that their surgery left them with side effects, or that the HT is worse than they had been told... it just happens. I suggest that if you want answers to your questions that you organize your thoughts, put together a history that you can save to you profile and try to come up a few direct questions that you would like to ask of the other members of the forum. And good luck, Chuck!

Let me tell you my story, not to bash doctors who thought they were doing the right thing, but so newbies can be on the lookout. Also, I think my case is a little unusual but aren't they all?

My first sign of trouble was from a GP 11 years ago who saw a high PSA at only 4.1 but with a free PSA that indicated there might be an issue. So she referred me to a urologist, and said I may need a biopsy. I went to the urologist who did a DRE, didn't feel anything, but said I should have a biopsy. I was afraid of someone sticking a stapler up my butt so I asked him if it was painful. He proceeded to tell me the story of one patient who cried out with pain so loud that he emptied out the waiting room. So, no biopsy for me, I was outta there.

I then saw a different GP and told him that story, and he said yeah, he had a patient who got an infection after a biopsy and spent a year in the hospital to cure it. Double no biopsy for me.

Two years later I see a different urologist and my PSA is now like 4.6 or something, but the DRE is negative and he doesn't think I have cancer. He gives me an antibiotic and the PSA comes down to 2.6, so I forget about it.

A year later I return to the urologist and my PSA has risen to about 5.6. He still doesn't think I have cancer, but he does a DRE and feels a bump. He thinks the bump is just from an old infection but recommends a biopsy. This time I agree and feel absolutely no pain from the biopsy because he had injected me with some kind of novocaine first. Why in hell didn't the first uro do that, or tell me he was going to do that? I lost two years while my cancer grew.

My biopsy came back as Gleason 3+4 with large volume, and after surgery it was upgraded to 4+3 with tertiary 4+4. Still, the urologist who did the surgery didn't touch the lymph nodes and said he thought I'd be cured. My post surgery PSA was really low, 0.014 so I forgot about it.

Four years later my PSA comes back and I have SRT. My RO radiates the prostate bed, leaves the lymph nodes untouched, and says he thinks it will never come back. My post radiation PSA also is very low, 0.010, so again I figured I dodged a bullet.

Now it's back again maybe, who knows, and my uro says I may need ADT but most men handle it fine. Yeah right, I don't know who or what to believe any more.

Ak123 said...
A question please: do they all have to radiate the nodes at times of SRT?
I can’t even imagine he missed that. It was in a great very well known hospital

No, they don't. When there's no hard evidence that the PCa has escaped the prostate bed, it's a judgment call whether to radiate the whole pelvis (WPRT), including the pelvic LNs, or limit tx to the prostate bed (PBRT). There's some retrospective-study evidence that WPRT significantly improves biochemical relapse-free survival (bRFS), but it's not been confirmed by a randomized trial. (TA: please correct me if my info on this isn't correct/up-to-date.)

Rob I guess that's why we always try to tell the new guys to do their research be your own advocate then find a good team to work with. I just talked to a guy yesterday that had his prostate removed asked him what his post stage was he looked at me like I was talking a foreign language. I then asked him what his gleason score was no idea he thot his psa was at a 5 before surgery. This guy is a very intelligent systems repair person can get deep into a logic program and tell you what's wrong with the program. Thankfully his psa has been undetectable since surgery well at least that's what he thinks his uro just tells him he fine come back in 6 months for a test. It's sad that big money has influenced our medical system so bad!

Larry

I have a good friend who was diagnosed with Gleason 9 about 10 years ago. I asked him about his PSA and he has no idea, he figures the surgery cured him. I hope it did. He has some other health issues and is about 80 now. Sometimes it's not a bad approach, just enjoy life for as long as you can. If he had been as inquiring as me he might be crippled by radiation and ADT and might have had a sucky 10 years.

I must add regarding this: I have no life and totally devastated since I got my .2 psa results. I can’t even sleep at night

I very much relate to that SP. we probably would have the same survival if we never went to a doctor’s office after the surgery. Even the experts can tell you that off records.

Ak123 said...
...we probably would have the same survival if we never went to a doctor’s office after the surgery.

Hmmm, not exactly. By how much does tx improve the chances for cure (if you’re not Stage IV)? Enough to make it worth bearing the morbidities of tx?
Four scenarios to consider post-RP with aggressive PCa:
1. Tx, cure: “Well, I guess that was worth it.”
2. No tx, cure: “La la la la la. Life is just a bowl of cherries.”
3. Tx, no cure: “That sucked big time. darned ROs just wanna take my money. Why didn’t I listen to my saintly surgeon? I could have spared myself debilitating SEs and gone on a cruise. It wasn’t worth it.”
4. No tx, no cure: “That sucked big time. darned surgeon couldn’t admit he failed. Why didn’t I listen to the saintly ROs? I could have been cured.”
For me, it comes down to this: If my PCa is doomed to progress no matter what choice I make, which regret can I best live with: “It wasn’t worth it” or “I could have been cured”? And I get the same answer every time.

Larry, your posts from Hope Lodge have been thought-provoking and inspiring. I've very grateful to you for them.
The best therapy when I'm feeling down is for someone who hadn't known I have PCa to tell me they're so sorry to hear it. I always just say Thank you, but I'm thinking, You have no idea how lucky I am. Other than PCa, I have my health. I have an wonderfully supportive family and friends. Although the cancer's on the aggressive side, we found it early enough that I have a fighting chance to beat it. I could be much much much worse off.

RobLee said...
Chuck, all I can say is, it happens. Guys like you and me trust our doctors to level with us, to educate us and at least let us know what they're thinking is going on inside our body. But in many cases, they just don't. I'm fifteen years younger than you, my PSA was doubling every year and all my Urologist told me was that all my tests were negative. He never mentioned anything about cancer,.......................

Ak123 said...


With all due respect to my urology, I don’t think he knows anything about anything. Since my surgery I went to 5 urologists and was not happy about any of them I think it’s more they don’t care more than they don’t know...........

Wow, we are getting some honest opinions put forth about the medical professionals we have to deal with. I didn't realize there were others as cynical as I was. My cynicism existed before I got PC as a result of over 40 years working with these guys(and oddly I actually feel OK about my personal URO, whi did not do RP(open only) and amazingly did not refer me to his partners who did, but who were not vastly experienced. Then again, I had worked with him in surgery and knew a lot coming in and I can't know for sure he didn't treat me different than he would the average Joe off the street.

And I have just deleted a couple of paragraphs I had written, because it was just too much. But just consider 2 things that say a lot about doctors in general(with many notable exceptions I personally know of):
1: If you show up in their office with a very low risk case of PC, won't the majority of these UROs, after telling you you have cancer, offer you surgery and a cure? Even if they don't push it, won't most of them readily agree to perform the surgery if the patient- who has just been told he has cancer- insists upon it? They are not running their URO offices with the intent of doing as few surgeries as possible. Now IMHO, they know that the risk of death from cancer is very low for a lot(most?) of their patients even if they do nothing but watch. But how many tell all of their patients that? We have had other threads discussing how many of us were told all of the not uncommon- but really bad- SEs we could end up with if we have this surgery. These docs know all of this, but more than a few very low risk guys here this from their docs: you have cancer, but don't worry, I can cure you with surgery.(not a word about you probably don't really have to take that chance on the horrible SEs that a certain % are guaranteed to come down with. Now what does that say about most of these guys? What is it they really care about?

2: There has been much in the news lately about the projected lack of effectiveness of the flu shot, followed by what a bad flu season it has been and how many children and adults have died from it. So indeed, as projected, the effectiveness of the shot was very low. I also recently had a thread discussing this subject, with a poll asking how many people's docs had suggested that- in addition to insisting on us getting the flu shot despite it's lack of effectiveness - that they make sure their blood levels of Vitamin D were at least adequate? Considering that this year there were 2 different randomized trials showing that a very high dose of vitamin D cut the risk and symptoms of flu another 50% compared to what was simply a high dose of vitamin D, were our medical doctors recommending what other health care professionals(and a few MDs) have been recommending for years? Only 14 people responded, but 93% said there docs had not mentioned it! And I ask every one I know locally, many of whom have had the flu this year, and they have never heard a word about it. Not one!

Every time I see another news item about a child or adult dying from the flu, I have to wonder if any one ever mentioned to these folks something as cheap and simple and apparently safe as vitamin D? If not, what does that say about our medical profession? Do they not know? If not, why not? If they know, and don't mention it? Shaking my head.