John 61, Dx 57, Stage 4 60....I was telling the P.A. at my oncologist office about something I had read about on this website/chat group/support group. She said she had never heard of it. This is a doctor's office(part of University of Miami Sylvester Cancer Institute) that specializes in Medical Oncology for prostate cancer. I gave her the link. The next time I went in ...I asked if she had checked it out. She hadn't. I went through 6 sessions of chemo...and now two more months after that...and I asked if she had had a chance to check out "HealthUnlocked"....and she hadn't. Yesterday, while repeating this story to my healthcare insurance coordinator...it suddenly dawned on me...and I was "Fu#@king mad as hell". I shouldn't have had to mention a support group to her and the doctor...THE M#&*therF(#kers should have mentioned several support groups TO ME ...when they gave me my Stage 4 diagnosis. The office has several things on the wall about breast cancer support groups...but, again, NOTHING, about prostate cancer. I had to "search" and dig on the internet to come up with this group. Does that sound "okay"...WTF...and I would say "pardon my French", but I am being too polite and not spelling the "French" words correctly for the "dainty" people on here who can not handle words. I can't handle uncaring, incompetence...and I am seeing a F*3king hell of a lot of it...at ever turn in this journey. The first Chemo I did..they put the "Neulasta" Onpro onto me....on the Friday of treatment. When they called me to "see how I was doing" on Monday...I was doubled over in pain...wishing I could find my "plug" so I could pull it. "Oh, they didn't tell you to take Claritin?" to which I replied WTF...I don't have sinus congestion....to which he insisted it would help...we got it and my unbearable pain went down from a 10 to a 2 in just an hour. I couldn't believe that ignorant, stupid, uncaring incompetence could have allowed me (or anyone) that whole morning of really BAD pain. Do these A3swipes who are doctors, nurses, etc...pay any attention to the fact that the patients are NOT numbers, but actual "humans". It's probably the "Lupron" which I prefer to call by it's REAL name...C A S T R A T I O N ....that is talking here...but It makes me angry! I feel better already (I actually don't)...but just in case any of you have the same feelings...do NOT feel like you're alone. ~~John
Interesting Thought....maybe it's the... - Advanced Prostate...
Interesting Thought....maybe it's the Lupron.
Gj
The medical establishment doesn't give a shit about you...they do care if you live or die..they want you to live as long as possible...because you are a walking $
Gus
greatjohn,
As one of our ex-presidents used to say, "I feel your pain." I've experienced similar things in my journey. It is a long, long list. I could literally write a book about it.
The casual, intentional, systematic mis-treatment of patients in general and prostate cancer patients in particular is infuriating.
It starts with wasting the patient's time: I've waited over 2 hours for an appointment made months ago - when I was the second patient of the day. I make it a point to talk to the receptionists and nurses - they can make a huge difference, positive or negative, in your treatment. What I find is that these delays are built into the system. They are not due to "unscheduled emergencies" or "the doctor taking all the time he needs with every patient." These are conveyor belts, we patients are sides of beef, and it costs the system nothing to waste hundreds of patient man-hours every single day.
Ignoring patient's modesty is another one. This is deliberate and aimed disproportionately at males, although women get plenty of needless abuse. It's part of stripping away the patient's identify and humanity, making him feel helpless and unable to exert control over any part of his treatment. It costs nothing to show a little compassion and decency while subjecting men to these procedures, but it is very rarely done.
The lack of information is another one. Informed consent begins with being informed. As has been discussed here many times, patients are rarely given complete and accurate information about the nearly inevitable effects of most treatments. How many men were counseled about penis shortening before undergoing RP or RT? How many are still wearing pads 3, 4, 5+ years later? How many understood that they might need viagra, a pump, maybe a needle, perhaps an implant if they ever wanted to have intercourse again? The list of things we are not told is very long.
The lack of support is equally infuriating, but what is even worse is the pathetic quality of support when it is offered.
I attended a prostate cancer support group at a major medical center. It began with a speech by a patient that will chock full of incredible misinformation. Stuff like "Tour de France riders have a PSA of 2,000!" (tl;dr version - that has been checked. Not true.)
The next step was an interrogation, in public, of all the new people. I thought it wildly inappropriate to pressure men still reeling from the shock of diagnosis to reveal all to a bunch of strangers. If in time they developed enough trust, and wanted to do that, fine. But this was a full-on interrogation, replete with all kinds of medical advice from this same patient and his buddies.
Finally there was a presentation by a doctor. I had come to hear this, he had promised to talk about something that interested me.
I read a lot of medical papers. I get that most people don't get medical jargon and need a bit of help. But this guy dumbed down his speech so much, while being incredibly patronizing and smug, that it literally took me a week of searching the literature to figure out what the hell he had been talking about.
As for getting them to look at any kind of literature or information at all, forget about it. As they say in Boston, "You can tell a Harvard man, but you can't tell him much."
My insurance company offers a patient care nurse. She calls to check in on me every month. She's great at making sympathetic noises, but I've learned that she has no power to do anything, and doesn't know enough to send me to the right people or useful information. It's a show, a farce, put on to signal that they care, when in fact they don't give a damn.
Far too many, perhaps even most doctors and nurses train themselves not to view patients as people. It is a defense mechanism against all the pain and anguish they see every day.
It's also a way to avoid admitting to the fact that they are the cause of a great deal of needless suffering. Nearly all of my current medical team have 30+ years in the practice of medicine. All of them realized one day that they were hurting most of their patients. and they didn't like that. They went out, learned some things, and changed their practice.
That kind of self awareness, and the courage to face those damning facts, are quite rare.
So it is up to each of us. We can help one another as best we can, but when we are one-on-one with some fire-breathing ass who tells you that you will most certainly die if you don't do exactly as he says RIGHT NOW, you and only you have to summon the courage to tell him to shove it, that you are going to get a second and third opinion, and that based on how he has treated you so far you wouldn't leave him alone in a room with your dog.
And I don't own a dog.
Wow...well said...and I guess "I am NOT alone" in my anger at the "care" givers... Thanks!
You are correct - there is a lack of disclosure by medical staffs. I hear absolutely nothing about penis shortening with a RP. I am now damn near an "innie" not an "outie". I doub teven a magic blue pill could "restore" any type of functionality due to "shortness issues". But .... am alive!
This is why we need support groups like this as well as physical support groups. Only the people who are going through it can truly understand what we are going through with this disease. I think the attitude many MOs have is that since advanced PCa can not be cured, we are a low priority.
I feel your pain John as I have stated I have been in the hospital business for 28 years and have seen it all when it comes to caregivers, I can tell you stories that would make you run as fast as you can from the healthcare circus, also my wife suffered from chronic migraines for over 20 years, physician after physician with most just winging it or a personal agenda and giving it their best guess as she continued to suffer, so many are there because they are compassionate people many are not! Dad or mom were doctors or nurses so I went into the family business, most of these types suck, not all but most, many work their butts off to get into these positions and once in they lose interest, get married, have kids and now they just have a job, I have seen surgeons that are all thumbs and turn a standard 45 min procedure into a 4 hour ordeal every time, and go figure just like any other fraternity they protect these people and relocate them to a new hunting grounds. Now on the positive side there are many competent caregivers out there that do great things but they to are human and are not perfect, as I am sure you have learned in your journey it is our responsibility to take care of ourselves and fight for everything we can get to help our situation, so Greatjohn get this out of your system however you can and then put your head down and keep pushing, arguing, and insisting our caregivers help us to LIVE, I personally will give them the data, abstract or whatever I feel I need to help myself not feel like a cow being led to slaughter. you have helped me in my short time here so I hope to return the favor if I can.
the fraise I try to remember is that the healthcare system and people in it are (Practicing Medicine) could not be a truer statement, and most or these people are as F**ked up as we are.
Keep up the fight John
as I was reading your reply at Costco....a man asked to join me at the table as I waited for my partner to bring us our hotdogs ! ! ! weeeee ~~one of my life pleasures still. He started talking about how cold it was in the store...(he was a lot older)...but then I told him about always having been hot...but that now I was on Lupron and had hotflashes that made me even hotter MOST of the time...he then said he was on Lupron. His friend came and joined him...and it turns out HE has prostate cancer also. My partner came with our hotdogs...and I said...what are the chances....a table for 4 and all 4 of us have or in the case of my partner...had...prostate cancer. It turns out the first man I was talking to was 92 years old ( he looked amazing for his age...and was EATING AN ITALIAN SAUSAGE WITH ALL THE TRIMMINGS)...AND HIS FRIEND WAS 81. It's really so common. It was great to get to talk with some people...face to face...who knew what I was talking about ! ! ! Life is Beautiful!
Same story over and over...follow the Warren Buffett Protocol...Double Cheeseburgers, Large Fries, Milk Shake DQ Blizzard....Warren 87 and partner Charlie Munger 93...now we can add Italian Sausage and Hotdogs...I just threw away my salad and ate a 1/2 lb Gator Burger
Bottom line, we are nothing more than numbers. Numbers that never end. Unless your wealthy enough to retain your own personal oncologist, It appears that treatment comes "pre packaged". Sad part is that we are forced into the same hypocrisy that Big Pharma created.
I mentioned Metformin to my oncologist...and he dismissed it. I talked with my GP...and mentioned it...and told her to check that my glucose levels have been over 100 for the past few months...(primarily from Lupron and Chemo)...and I got her to prescribe it for me. However, I told her I wanted it for the benefits it was appearing to have for prostate cancer. She had never heard of that...I asked her to google and see what she thinks...I am HOPING against all odds that she will call me within the week....to give me her opinion. It would make me feel like more than just "a number". ~~we'll see.
You should just print the reports and put them in front of the drs. You know they’re not going to search the internet, even if you send the links. Just highlight the conclusions.
What snoraste said. After 11 years I have surrounded myself with doctors who at least don't dismiss my ideas out of hand. If I put papers in their hands, some of them actually read those papers, and are willing to talk to me about it. But none of them will go to "Dr. Google" on their own.
Right on, brother!!! Couldn’t agree more. Amen to Gus, too. I shudder to think of what level of care (if any) I would get without Medicare and Blue Cross. Even with it, their reimbursement decisions are based in large part to FDA decisions. FCoffey adds a lot of other reasons to be angry. Prostate cancer has never received the “respect,” the research, or funding that other cancers, such as breast cancer have. Not to diminish their plight. It is horrendous. But how many ribbons and fund raising 10K runs or half marathons do you see for prostate cancer? Not that many. We seem to be the red headed step child of cancers. Only lately have any meaningful Clinical trials, and research studies been initiated. As Gregg57 said, we are (unfortunately) a low priority. My MO told me he couldn’t prescribe Metformin for me in spite of glucose always over 100. He told me to check with my family doctor, who had done a few a1c’s on me (always over the line for Type II), and glucose levels pretty much always over 100. I told him that research has shown that it also has benefits for my prostate cancer. He was more than agreeable to giving me an Rx for Metformin. That was 2 years ago. Told my MO about it. He was good with it. Still on it. 😎
it is a crazy journey...and I'm afraid it's been a quiet one...because men are supposed to "man up" and not complain....and "be strong and silent"....but...If you don't complain...nothing happens. (i.e. the noisy wheel gets the grease)...my urologist told me once that "if women got prostate cancer, we'd already have a cure". That said...How have you been doing on the Metformin?...my glucose levels were like yours...just slightly over 100...I started yesterday and I am hoping it helps get my PSA down....grasping straws, but anticipating a miracle! Life is Beautiful!
There aren't any large studies, but I've talked with several oncologists who prescribe metformin, and Snuffy Myers has written about it.
Few people see PSA drops. What they do see is people who live longer. Lower chances of metastases, general lower aggressiveness. Myers believed that the benefits grow the longer you take it.
So don't get discouraged. It will probably help with the glucose, although Lupron is a bitch that way. Like immunotherapy, the benefits are measured in years and not in PSA.
awesome blog, couldn't agree more, re incompetent uncaring assholes in every aspect of healthcare and goes ten-fold for the "industry" that never belonged in the healthcare mix: the "health" insurance bean-counting cretins!
but checking the NIH for metformin and PCa, i'm finding several studies which i predict will be targeting men whose pc has already gotten outta the barn or are now CR or have seen other tx fail. all i've gotten was a biopsy and less-than-definitive bone scan, but i've been researching the living shit outta this horror of a disease for over 7 months. i reversed my T2Diabetes by eliminating almost ALL processed garbage, and 4 forms of carbs: white rice and potatoes, bread and pasta. acceptable subs are brown rice (sparingly), sweet potatoes (odd, right?), fresh veggie "pasta" (made from squiggly-cut squashes of any kind, there are others, sold in some high-end supermarkets) but that's it. NO bread or pasta made with ANY kind of flour, be it whole grain, sprouts, etc will have less carb-content. the 2 "diets" that work for me are LCHF and Ketogenic. Low Carb High Fat is great if you can't to the intermittent fasting involved in ketogenics.
thnx again for the info on metformin - have an appt with hematologist tomorrow - you guys are a God-send, truly! stay strong! Live long!
yours,
richard
I am so, so sorry to hear what you’re going through! My husband (who is also Stage 4) & I are appalled at the callousness and lack of compassion/understanding he has experienced from the Drs he has consulted in his search for the right treatment. They continue to prescribe Lupron without any concern for the damage it wreaks to overall health status as well as quality of life. It’s a killer drug & should be banned and the doctors all know this! My husband has refused both Chemo & Lupron & is now considering Casodex & Radiation as alternatives. I pray that you will get through this.
Sadly, I agree with your opinion. Thank you for your honesty.
It is a great vent and I share a lot of your thoughts.
This is not just cancer, for a man this is humiliating cancer, but you need to just keep moving along.
It sucks, my primary surgery put me in diapers and pads for 12 weeks (and I was lucky to be that short). At 44, in the bedroom, there was little to nothing. Yes, you can do/did alternative things to make each other happy, but straight up sex did not happen to 13 months after the surgery. Right in time for a BCR.
Then I got introduced to ADT, which is the euphemism for medical castration (which I had only heard about for sex offenders before all this). Finishing SRT, which has ended with a pain in the rear (literally, small bout of acute proctitis), so getting creams, etc. Was just on a daddy/daughter camping trip (was great outing), but had to sneak around for 'bathroom duties'. It's not like you can say "Hold on guys, I need to put on my rectal cream" LOL LOL
But in any case, this is working and I am very lucky side effects are prob on the minimal side.
In terms of compassion, my urologist is a guy, not compassionate at all, nice, great surgeon, but in and out. My oncologist is women, her and her nurses are very compassionate. Interested in all side effects, and have ideas around QoL.
The Neulasta kicked my ass as well they suggested Benadryl to help with the swelling. My doctor didn’t know about the site either, said he had checked out several but most were pushing some kind of drugs. Forgot to ask him if he had checked it out. Great group of guys here Welcome
It is such a great release to scream at the universe. ...been there, done that... Nothing tests one's true manhood more than the treatments for prostate cancer. Doctors tend not to think beyond the clinical applications of what they can do to slow down this cancer. They give us odds that we demand to hear and send us home. As genders go, females tend to be more nurturing, but there is always a sharp division between a professional and a caring professional no matter the gender. I have often thought male doctors in their 40's (the ones I have seen) don't share an honest truth about the side effects of treatment. The reasons vary from not knowing, being overwhelmed by the volume of patients they see or lacking the social graces to discuss mortality and male sexuality. Prostate cancer would seem to be a textbook condition with textbook treatments; but in reality, it is a unique and very personal journey that changes course often without warning. What we, as its victims, do have is hope: hope that we will find the courage to fight this condition, hope that there are those who will understand and support us, and hope that somewhere in this war against a disease that bids to defeat our lives and our sexuality we will find purpose and meaning in our existence.
GreatJohn,
When I have brought up the subject of a natural supplement (esp., IP6 and Dr. Shamsuddin) with my urologists, both in AZ and FL, and with a medical oncologist summer of "17, you would think I was suddenly speaking in Albanian. They stare at me and change the subject. We are for most physicians a large bag of cells that can generate revenue: "Next patient, nurse, yada yada...
As you know, I facilitate an open (community) prostate cancer support group which I started mainly because our church had a breast cancer support group but nothing for men. The men in the group are hugely relieved to have empathic men to share their experiences with. The health care system is deeply flawed and will not soon change. I spent 30 years in the health care system before I became a patient and these issues embarrass me.
Sorry you have to endure these people.
CalBear74
Wow. I am sorry you have/had such a dick of an oncologist. Hope you get a better onc for future treatment. I was diagnosed with stage 4 in 2016 and have been in the care of a great oncologist and staff. Hope you find a caring doc and staff to work with you.
I read the little bit you have posted about yourself... Don't see an age...but your cancer sounds like mine...aggressive. Actually they called it "moderately aggressive"...maybe that was to make it "sound" better.
I was diagnosed with Gleason 6 at 57 (just 4 years ago) Did Radiation..then HIFU, ...then PSA never went below 2...so more biopsies...prostate was clear, but PET Scan (aximun) showed bone mets and lymph node involvement in groin area. That was in April 2017
with this new develope,tn.I did Lupron right away(May '17)...and within a few months did Taxotere(Nov '17)...and my PSA still is not under 1. it's only gone down as low as 1.33 and it's back to 1.83 as of last test.
Just curious...since you say your doctors are really good. Have they put you on a special diet...? are you overweight? how old are you? have they approved any supplements you have suggested? have THEY suggested any supplements? My experience with doctors is ...as long as you don't ask too many questions...OR bring up new protocols ...or talk about "supplements"....they are nice as long as you just keep doing "what they say" in the order they say it. Thanks in advance for any insight your answers to the above might bring.
~~John
John, I am 69 years old, and I was diagnosed with aggressive prostate cancer, Gleason 9, in September 2015. My onc immediately put me on Lupron, and wanted me to start chemo. I have to say that since it was all new to me, I sought a second opinion. I live in Colorado and the doctor I received the second opinion from was in Florida while we were on vacation. I went thru 6 rounds of chemo when I returned from vacation. My PSA dropped from 78 to 4 in one month. Subsequently I had Provenge, in August of 2017, and my PSA has stayed below 1 until just a couple months ago. When my PSA passed 2, I started Zytiga and prednisone. So far, through all of this, my onc made suggestion for courses of action and asked me what I wanted to do. Both my wife and I asked and still ask many questions. Initially, he offered oriechtomy, but I chose Lupron. In hindsight I should have done the oriechtomy, mainly because I don't like chemicals being injected into my body. My onc has approved all supplements I take. I am 6'3" and weigh 230, which technically is overweight, which may be due to the Lupron. I work out daily, either on the total gym and elliptical or working in my vegetable garden. Bottom line is my onc offers suggestions for treatment and asks me what I want to do. My PSA has slowly risen from .80 in Feb 2018 to 1.43 as of last week. Just to keep an eye on it and hope it levels off. I will be happy if it stays below 2. My Onc has not referred me to any websites or support groups either, but my wife and I do lots of research on the internet and ask him many questions about things we read. In the beginning of treatment he did let me know that they have support groups if I wanted to get involved.
Hope things are getting better for you. Hope this wasn't too long winded.
You would fire a carpenter if he did a bad job. You have to treat your medical practitioners the same way. Use this site and support groups to help you find someone you are comfortable with. Good luck!
Exactly. I think of doctors the same as car mechanics. If they know their stuff and do their job well, I come back. If not, I fire them and find someone else. Being a dick to your customer is grounds for firing any technician - and doctors are technicians, like it or not.
An old one but here goes... What's the difference between a brain surgeon and God? God doesn't think he's a brain surgeon...
Good Luck and Good Health.
j-o-h-n Wednesday 05/09/2018 10:20 PM EDT
LOL
I feel sorry for all you poor bastards, my doctors and nurses are doing the best they can and I appreciate it.
I so share with you the nonchalance I experience from professionals and even friends. “ Don’t worry most men live for years with it,” “Castration is just a side effect.” All men get it eventually.”
I am not a sexist but it does seem that a much bigger fuss is made of breast cancer and as for support groups — forget it. “It’s so terrible to lose a breast but what about losing you balls. I am pissed that I have to inevitably decline.
Screw pink ribbons - how many prostate cancer survivers do you know.
I'm sorry John. I know exactly what you're talking about. You best believe I go with my Dad and Mom to all the MO appointments just for that very reason. IMO for all the reasons you stated above, as well as, others who have posted here, that is why so many men give up instead of fighting (I know of 2). From reading so many posts of experiences on this site and from witnessing my Dad's battle, this fight is hard enough to endure, our healthcare team should treat each patient as a human being first and not just a (PSA) number. Where is the compassion and concern about the male patient in the medical world?. I have a Father, 3 brothers, a husband and 3 sons. I am very concerned for them all...Over emphasis should be put on PCa just. like. Breast cancer.
I will keep demanding the very best for my Dad who is battling 'CRAP'Ca. I too mentioned this chat group to the nurse at Dad's last appointment. She said I was a good daughter:/ I found this group from surfing the web...I'm so glad I did. I am able to share all these stories of strength, trial and error and triumph to my Dad and he is eager to hear them. Thank you John. I am praying for you my friend. Kimberly
This was a fairly old post of mine...thank you Kimberly for bringing it back to my attention.
Big hugs,
John
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