Doctors say stupid things
Doctors say stupid things
For example:
“You don’t need full anesthesia for this(uro lyft) Old men don’t feel pain “
And
( during ED consult) “What’s the matter, your girlfriend doesn’t do it for you anymore?”
Please share your “doctors say stupid things “ in replies below
My uro told us. And he was pissed “ I can’t make any money off of you “ because I was beyond surgery ..He was giddy a year later when I let him chop off my nuts . Thought I could throw him a bone .. some docs are jaded and show no compassion ....The problem is that some of us mere mortals put so much weight to every word spoken to us by our docs.. I take everything said to me by doctors with a grain of salt ..
I had a MO that was just itching to give me chemotherapy. I stayed on casodex for 5 years. He used to get so frustrated.
You made the right move . Great job . Mine also told me six months chemo . Then my Pc specialist changed me to RT . I was thankful .
I must be lucky, in my 5+ years talking to oncologists, all my conversations with my medical team seem to guide me towards an intelligent, thoughtful discussion. Luck of the draw I guess. Oh Wait, there is one. Approximately 4.5 years ago I asked an oncology fellow who was nearly finished with his fellowship what he thought of Provenge. He replied " stay away from it, it's voodoo". He is currently employed at a top ten cancer center specializing in prostate cancer.
Some doctors say stupid things because some doctors are stupid.
These are actual quotes from urologists:
"If you don't do exactly as I tell you, you will die!!!" (spittle spraying)
"Prostate cancer is no big deal if you catch it early."
"We don't talk about losing an inch of length after radical prostatectomy, because if we did, no man would do it."
"Sex isn't that important for a man of your age." (I was 50)
"You can't trust any study performed in Europe."
"I have 35 years of experience..." while his demeanor suggests he has 1 year of experience and hasn't learned a damned thing in 34 years.
"I have never regretted performing a radical prostatectomy." Yeah, but his patients did!
"Stop thinking about the statistics and do what I tell you."
I've noticed in software that years of experience don't matter if those years are spent doing the same thing over and over. You have to be trying and learning new things all the time. I assume the same applies to medicine.
I think he was being honest when he said, "We don't talk about losing an inch of length after radical prostatectomy, because if we did, no man would do it." I like that doc!
He is a liar and a criminal, intentionally withholding crucial information from his victims. Informed consent is impossible if the patient is not informed. He's performing a surgery with 3-4% chance of benefiting the patient, 100% chance of grievous harm, and lying about all of it so that he can line his pocket and make his next boat payment.
If I did anything like that I would expect to go to prison, and I would accept that punishment as just.
He was being honest with 'you' when he made that statement! I personally think that the "chance of benefiting the patient" with an RP is better than "3-4%". My dad, uncles, brother and I must be in the 3-4%.
If you believe that having your doctor lie to you and not tell you vital information is good medicine, knock yourself out. There are certainly plenty of urologists willing to accommodate you.
As for the stats, of course you don't believe them. They are too terrible and would force you to confront some extremely unpleasant truths.
They are from the PROTECT trial, thousands of men followed for 10+ years, the most recent, accurate, comprehensive study available. NO difference in mortality. 30-odd men must get RP or RT to have one man avoid metastatic disease. That's the benefit.
But if YOU are the one man who avoids metastatic disease, well, isn't that all that matters? Fine, thousands of men studied, one in 30, etc etc etc, should not boil down to "You have one chance in 30 of avoiding metastatic disease," or "you'll be dead in 5 years," or whatever, because that's simply not true. Statistics are valuable for research and development of new treatments, but not for treating individuals, unless the stats are truly overwhelming, like the odds are that black mamba bite will kill you if you don't get antivenom immediately. Individuals are unique - that's the point of being an individual. YOU are the only YOU who has ever existed and who will ever exist in the 13+ billion years of this universe. In reality, RP or RT is either going to work for YOU or it isn't, so it seems to me that, regardless of what statistics proclaim, YOUR chances are actually 50-50.
re: radical prostatectomy. My uncle had a radical and lived to be 90 with no issues. His younger brother chose not to and 10 years later he is on chemo as it has spread. My friend had a radical: no issues. My conclusion is it is something to consider, and as always, try to get to a top-notch medical center.
👏
Dam funny ,if it wasn’t true eh?
As an invalid, my Dr's said "I didn't know it could do that" I found out the hard way and then showed them the Dr's portion of the info sheet as opposed to the patient portion and VIOLA all my sever side effects were listed. Their other patents hadn't had them. I cut my own dosage until l could have a life. But at the time Xtandi was just out on market and I was probably their first on it. My urologist had read about it and advised it over Zytiga as early results of studies were showing promise.
Consulted with a RO regarding a patient whom he'd treated with radiation to the head and neck for a salivary gland tumor. I asked him about the patient.
"HE'S STILL ALIVE??!!" was the response.
I have taken 10 fractions of radiation to the skull from the 22nd of July to the 2nd of August, 2019 and I am STILL ALIVE and kicking !!! 
Though, how long I will kick is a moot point
To the skull,shit man ,, whoa ..keep kickin that mule in the ass friend ... Have you had any epiphanies along the way ?. Advice ,what not to do?.
The radiation has killed the pain in the skull 100%. I have been lucky.
Advice on what not to do ??? Zilch. Enjoy life to the maximum.
When the time comes, all of us have to go. At least, one has lived
It’s amazing what you’re doing in order to get extend your stay . None of us know “ how long” ?? I’ll take your advice..and enjoy what I can... we played ride with APC to the end of the line . If you like music please listen to this my favorite song right now” ain’t much of me left “ by BlackBerry smoke. My favorite line is . “ I thought I hit rock bottom, but i ain’t there yet , you’d be surprised by how low a man can get ..” let me know if you like that song ? We all are going to ride APC to our demise.. no cure for #4 ... keep your spirits up man.. Take care 😂
I am just leaving to meet my RO.
As soon as I get back, I will listen to your favorite song and comment
Thanks , Lulu700.
👏😂
The song is good, the lyrics even better
I met my main RO (radiation oncologist) and he gave me a lot of hope.
In about 15 days (I am taking a holiday with my wife) I am going to get
the tumors in my back radiated and the RO said there was no reason
why it would not be as successful as the radiation to my skull.
I am happy, very very happy.
Cheers, Lulu700. Enjoy life.
Great to hear .. you need some good news after the hell...That you’ve been in .Also great that the Ro is giving you hope . I like it ... Enjoy holiday .. make it a great one too. Hearing you are happy happy brings joy to me brother . Thank for sharing good news and attitude . Thank you thank you thank you ...🥳🥳🥳🥳🥳🙏
Thank you, Lulu700.
All the very best to you and your wife.
Same to and yours and enjoy the vacation . 💪
Lyrics hit home baby ..
youtube.com/watch?v=88lEWTE...
Ain't Much Left Of Me
Blackberry Smoke
Well my fall from grace was a sight to see
Good turned to bad and bad turned to misery
I found out what it is and what it's not
And all I ask for sure ain't what I got, no
Well I've been rained on, rode hard and put up wet
Danced with the devil 'till I'm in debt
Took all I got and there ain't much left of me
I've been knocked down, drug out and left for dead
Barely held together by a few old threads
And I'm still here there ain't much left to see, no
Well I'm still holding on and there ain't much left of me
Thought that I hit bottom but I ain't there yet
'Cause you'd be surprised of how low a man can get
I watched stolen dreams slip through my hands
And now I'm getting out of here still while I still can
Well I've been rained on, rode hard and put up wet
Danced with the devil 'till I'm in debt
Took all I got and there ain't much left of me
I've been knocked down, drug out and left for dead
Barely held together by a few old threads
And I'm still here there ain't much left to see, no
Well I'm still holding on and there ain't much left of me
That's right
Well my fall from grace was a sight to see
Nobody even cared what became of me
Do I have to get down on my knees
And ask the Lord ,Lord have mercy on me
Well I've been rained on, rode hard and put up wet
Danced with the devil 'till I'm in debt
Took all I got and there ain't much left of me
I've been knocked down, drug out and left for dead
Barely held together by a few old threads
And I'm still here there ain't much left to see, no
Well I'm still holding on and there ain't much left of me
There ain't much left of me
I said there ain't much left of me, no
Yeah well there ain't much left of me
Source: LyricFind
Songwriters: Charles Turner / Charles Webb Grey / Charlie Starr / David Lee Murphy / Paul Jackson / Richard Turner
Hey Cisco! I posted this video a few months prior. The lyrics sure hit home for me. “ one horse town “ is also great . Be well.😎
In 2006 after failing Lupron -- a Medical Oncoligist at Kaiser "Dont worry Kaiser pays for Hospice."
That's what I call a kick in the nuts.
More than a decade ago . Wow!
2019 - 2006 = 13 years ago. Many in this group have gone more than a decade surviving advanced prostate cancer. Good doctors and the right information, such as the information I see on this forum, will make a big difference in survival. Many doctors I met, like the one at Kaiser who said that stupid comment about hospice, are total idiots. I will celebrate my 18th year in November.
You inspire me . Thank you sir . God Bless
CUAL FUE TU DIAGNOSTICO CUANDO SE TE DETECTÓ? YA ERA METASTÁSICO?
Diagnosis of Prostate Cancer November 2001 Gleason=8. Surgery Feb 2002. Metastatic PSA rise in November 2002. Various hormone drugs failed after a short use. Various treatments continued and failed, except 1 treatment using Leukine, Ketoconazole, and Estrodiol patches, which lasted 3 years. Metastatic on a pelvic bone in 2008. Did Provenge. Various radiations. Did some Chemo. Did a clinical trial with LU177. Today various metastatic pelvic bone and lower spine/sacrum mets. See profile.
Gracias por responder. mi pareja fue diagnosticado hace un año con ca en grado IV con metástasis en pelvis y femur. Hoy está con terapia hormonal e hizo quimio. Sólo quería saber si tu caso es como el de él. saludos.
Mida y sigue este grupo de Advanced Prostate Cancer. Hay un tronco de ideas aqui. Mi esposa habla espanol. Dios te bendiga. Buen suerte.
Muchas gracias, es difícil a veces para mí, tenemos 48 años y ha sido un camino difícil este año. Ahora está controlado, su PSA es menor a 1 pero tiene dolores en su pierna y eso hace que no pueda dormir y tenga pensamientos muy negativos. Algún consejo para su dolor o su insomnio? gracias!!!
Fantastic, I am approaching year 5, hope I’m as fortunate as you
Don't take that guy's stock picks, will ya?
Go Kaiser!! My doc say “ you’re cured” after four years no signs of pc . There is no cure for stage #-4.. I’m still on adt . I wake reeling with nausea and dizziness each more. But , and it’s a big But, I wake each day , I’m still here in an altered form . APC makes the good that we receive in life ten times more valuable . Everything is enhanced once we pass thru the treatments door . My friends son is a top boss at Kaiser . He’s a fine human being . I liked Kaiser as a kid. They repaired my broken elbow at 15 years old . Hospice is in the cards for most of us . Not something anyone is looking forward too . But good when nothing is left . 2006 to 2020 , I’d say that onco was talking out of his coolo.
One doc grabbed my husband's breast and pinched it saying, you don't want these.
Another, If you don't take the dosage I'm recommending you will die.
Another was, when my husband needed a hip replacement. The doc said (it was one of the top 7 research institutions) Insurance probably won't consider it worth because of your diagnosis. Needless to say we went for quality of life and he had it done in 2009. It went perfectly!!! We left that institution.
Docs are people, they come in all sizes, shapes and personalities.. It's up to us to decide if they are a fit. Unfortunately, often we are in a desperate situation- causing a lot of stress and sadness. It takes guts to leave and trust there we will find a better fit.
Well said .
When considering various treatments I went to Loma Linda to discuss their proton beam therapy. It almost seemed like a cult. The message was that if you didn’t use their hundred million dollar machine you would die. After going to their consult and a number of meetings and hearing all the reasons I had to do the proton beam therapy, my wife asked the doctor one last question. She asked if it were you, what would you do? Amazingly the doctor told us he would do seeds as opposed to their hundred million dollar machine. He told me that very few doctors trained in seeds anymore tho, not because it didn’t work but because it had the lowest reimbursement from insurance companies and Medicare LOL
Wow!
Exactly.. we found the same situation with the older drugs...
WOW is right.. honest doc.. kudos..
one of our docs at a prestigious institution said.. clinical trials all funded by pharma..that was 2007-2010- this is why chemo was attached to them at the time..
Their hands were tied.. we were new to all of this..we've been very lucky to be able to navigate the system..
You’ve got that right Bluebird11! Luck is a factor in surviving the BS out there . Medical errors kill 1/3 of Americans ..
The Most agonizing thing I ever had happen to me was to get a biopsy where the urologist poked a needle firing gun up my rectum to obtain PG tissue samples. It was a Saturday morning, and he'd promised I'd have an anesthetic, but I was given none, and after about 3 shots it began to feel like he was using a nail gun to fasten my rectum to my spine. He wanted 12 samples, but I said NO after 9, and would have got him to taste a knuckle breakfast if he went any further. That's when he backed off, and he said "9 will do".
All 9 samples turned out to be positive. I recovered OK, but getting somewhere, or anywhere to get such small procedures done at the hospital at that time was very difficult because there were few theatres available 24/7 and loads of patients in a queue, so to treat me in a timely fashion, he broke some rules.
I later met a couple of men who had had biopsies through rectum and they'd spent 3 weeks very sick due to infection, so I was very lucky.
Another doc said that "you are not trying to have a family so you don't need to have a working Rodger".
I was 61 then, very fit, able to cycle 150km in a day, keep it up for hours if need be, but no, I was not interested in sex to make kids, but I knew once Rodger was dismissed by ADT, shielas who wanted "closeness" would try the next man along for closeness, ie, for temporary pussy destruction to brighten up their dull lives.
But most doctors since 2008-9 have been really good, and have more understanding. By the time I was 60, virtually all the extremely few ladies I ever met who were not married were mentally deranged, sexually dysfunctional, allergic to blokes, bitter, angry about the broken marriage and they had paused from men for previous 10 years because of hormonal changes.
I settled for riding bicycles instead of trying to ride a shiela :-).
Patrick Turner.
So that's what those dangly bits are for! I'll tell my wife....
Hi Patrick, This is Anna, Howard's wife. You met Howard in Sydney in January at the MacQuarrie University. Just wondered how the Lutetitium worked for you. Unfortunately Howard had to cancel his next appointment, due to mets in the bones causing too much pain to travel
in and out of hospital for urgent radiation, which delayed chemo, now failed chemo and in our local hospital bedridden, can no longer walk, stand, shower or toilet independently. MO said no further treatment, just pain management. I hate this disease!
Hi Anna,
Yes, I remember Howard visiting Macquarie Park Uni where the first outlet for Lu177 was based. He had come over from New Zealand.
I recall he had pain in both hips and a high Psa and seemed doubtful about getting any benefit from Lu177.
I'm very sad to hear Howard has not got much benefit from treatments, and now appears to be having palliative care.
I think I just happened to be lucky because I went on to have the full 4 shots of Lu177 by mid May, and Psa went from 25 before I began Lu177 to 0.41 now, and all the pains I had in my bones has gone and the last PsMa Ga68 scan report shows significant healing of bone lesions so the docs say I have had a very good result. But they do not know how long this will last before the trend to a lower Psa stops, and trend reverses to upward and more treatment is required.
I recall that in 2015, Theranostics Australia was granted licence to supply Lu177 without full approval in Australia. The Aust law permits ppl to buy treatments not yet fully approved where all other standard treatments have failed, ie, all forms of hormone manipulation with ADT, Cosadex, Zytiga, Xtandi, then chemo. TA knew all about German innovations with Lu177 and
so were able to offer a benefit to 70% of men who qualified to get it - if their PsMa scans indicated they would likely get a benefit.
In 2016, an official Australian trial of Lu177 was first done with 31 end stage patients at Peter Mac in Melbourne, and a few are still alive. One man had 7 infusions. There is continuing trials going on in Aust for Lu177 combined with other things, and Ac225 is being increasingly used because it works on bone mets earlier than Lu177. But this nuclide treatment is not yet widely available and not here in my city Canberra, the National Capitol of 440,000 ppl.
I am still able to travel, and ride a bicycle, and live independently in my own house, but I know that could change any time soon.
I hope Howard has some good pain management. The best thing I heard about was sub-cutaneous pellets to give slow release of Fentannyl in small amounts. It is thought to be many times more effective than morphine, but is addictive, something that may not matter. When one of my sisters died from ovarian cancer in 2005 at 60yo, nothing worked and mets stopped her eating anything, so she went to a palliative care hospice overlooking Sydney Harbour, a nice place, they gave her sufficient morphine and she was happy enough on the day before she died, walking around chatting with me and others in the gardens there. But at night her pain increased, and they gave her button to press that increased her morphine intake via an IV drip, and as pain increased she pressed the button more and more, then lost consciousness her heart failed at 6am. She was alone, but didn't mind, her time had come. She had one 17yo daughter who did not seem to cope very well with her mother's illness. But who ever does? I lost my dad when he was 60 and I was 25yo to melanoma and I remember being told at work he was going, and by the time I got there he'd just gone, and my mum and I had a big long cry. Mum took longer than I did to recover, and I was able to move back home to live with her for 6 months until she gained strength to be fully independent. She lived on to 98, and her group of friends much increased so that by 80, there were 80 Christmas cards, but then they all began to pass away so there were few friends left when she departed.
Its nice to hear from you, I cannot be dry eyed about this, and I guess all you can do is care, and wait for what will be a relief, and then try to rebuild a life for yourself. I don't fully know how to do this because I never had a wife who wanted to stay long, so I'll depart and be very alone, and just be grateful for being with whoever is around at my end. I sure cannot live forever. I have met women who have lost a man, and most get over it.
You'll probably dampen the shoulders of quite a few ppl, but that's fine, let that happen, its natural. I hope your strength surfaces.
My Best Regards,
Patrick Turner.
Thanks Patrick,
Sorry this is so short, but very tired as going up to the hospital about three times a day. We have three adult children and one grandchild. We are doing all we can to get Howard back in his own home, but I that seems to be a process that can not be rushed. The kids are being very supportive even though they don't live locally.
I do hope that you have a strong network of friends, all you need are a few really good friends. I am lucky in that respect, but on saying that I feel Howard has been ripped off, he always kept himself fit, didn't smoke etc. Just doesn't seem fair, but life isn't always fair. My father was also 60 when he died of cancer, so I know the grief my own children feel....very difficult.
I am however very happy that Lu177 worked for you and gave you such good results. I hope one day it will be frontline treatment, followed by Actinium. Still a lot of research to be done. Thankfully Lu is now available in NZ for men this side of the ditch.
Regards and best wishes
Anna
Hi Anna,
I think many men and their families feel "ripped off" when there is a diagnosis of a fatal cancer despite the practice of living a healthy life, and having regular yearly health checks including tests for presence of cancer, such as the Psa test. I had Psa tests yearly, and expected to get the disease.
We all begin lives where cancer is the least of our concerns, something only old ppl get, and we won't get it because we are all going to live forever, or to 105, which ever comes first, with good health.
I gave up smoking at 34, when I was up to about 1/2 a packet a day, and a GF said "Patrick, you need to give up smoking because you smell when we go to bed together..." and I replied, "Veronica, tomorrow I give up completely". Then she said "Ah, you men, you make promises you cannot keep..."
Well, tomorrow came, and I did give up, cold turkey, and never smoked a cigarette again. Veronica better enjoyed her 10 months with me, and might have made a nice wife, I hoped she would, but like all those I dated and who lived awhile with me, they could not resist the urge to do more travel OS, and "try out" other men.
So her love turned into a distracting panic as commitment threatened, and off she fled. I stayed put, I had customers to please in my business, and a house loan to repay, so no OS trips for me. So even when we are young, we often just don't get what we want, or when we do, it does not last.
Men need to get their PG removed when Psa creeps up to about 2.5. When treatment is arranged, it might then be 3.0, and an RP usually then might prevent the spread that happens when the RP is a bit late, and with my Psa at just over 5.0 in 2009, I had advanced Pca, inoperable, and spread to many places that could not be seen in scans.
I don't have many close friends I could rely upon for any support when I need palliative care, and no family, so I'll cope as a loner when the time comes, just like I have with everything else for 90% of my adult life. But here there is some palliative support for ppl wanting to die at home surrounded by family, or maybe without family, because I saw how the man next door died over about 3 months after an 18mth battle with lung cancer.
An unmarked white van used to arrive daily and a nurse lady would attend him, probably to give increasing pain relief with opioids.
I have seen other friends die in hospices, because they had nobody to care for them at home, similar to me, and when my time comes, I'll go with a smile, no use being angry about anything.
But right now I am back on my bicycle, and feeling better each day, and I have a follow up appointment with a radiation doc at hospital tomorrow that involves about 40km cycle ride, and I really like Dr Klieven, a beautiful lady doctor, but this time there is nothing to arrange for me, and maybe she just gives me a few good words of advice.
I'm glad Lu177 has come to NZ. Theranostics Australia was looking to establish a branch in NZ, but maybe there are other medical companies who might have done it. Many "baby-boomers" like myself are getting Pca so business is booming.
Try to look after your own health, and if there's any sign of something not right, get it treated early, make sure you have preventative scans.
My sister who died from Oa had doctors tell her for a year she had bad indigestion but it was advanced Oa. Then after the hysterectomy she was told by surgeon "we got 80% of it, and chemo will get the other 20%" and nothing could have been further from the truth. AFAIK, there is no theranostic treatment for women's cancers yet, but there should be, and no doubt research is continuing. I first heard about theranostics when our ABC TV had article about a 72yo lady who had multiple mets in her liver, but docs at Peter Mac in Melbourne had a theranostic fix for her and her scans looked like mine, same sort of thing, and docs were confident to give her many more years of life.
But nearly all treatments for cancers are temporary fixes, like applying weed killers or mowing or using a hoe to stop the weeds, which tend to grow back again.
Must research is being done to get our immune systems to recognise our cancers and deal with them, but cancer is clever to hide from the IS and be seen as healthy cells. Immune therapy, IT, is somewhat very unpredictable and unreliable so far, but a few ppl have had excellent response with Provenge, and this works best when a person's altered white cells keep passing on the alteration to future generations of white cells so the cancer killing continues, and last longer than for the action by treated white cells for only one life cycle of such cells.
I might last long enough to get a benefit from IT, but at present it has immense cost in US.
So take care Anna, seek support from others who have a similar loss. Enjoy your family, and make the best of life you have left. What else can anyone do? I don't have all the answers, but was lucky to cope well so far,
and maybe lucky I have not had to cope with a partner's problem. I would never have minded that if I had had a partner who led to two of us enjoying love for the many years.
Being my age at 72, and while posting here, and while visiting hospitals as often as I do, I am well reminded that life is fragile, many have a worse problem than mine, so I have to try to be cheerful with all I meet.
Its a very nice spring day here of 18C but was -3C last night.
We could do with some rain.
Patrick Turner.
I’m so sorry ... we all hate APC ..🙏
I'm sorry you both are going through this awful disease. My husband is in Hospice now and fast approaching this same scenario. 😥
In May of 2014 my oncologist said I would be dead in 5 years. Do the math...
Keep rockin Cumpadre! 65 was a good year . Mine was 61 .. kids from the 60’s what the hell happened? I was told in 15 that I’d be gone by 18 . Se la ve . Can’t listen to everything though we ..here ..Scott ✌️
Stay strong 😊
PCP said an I quote " I went broke in private practice so I came here to the VA to work". I now see a PCP on the outside.
Maybe he had malpractice...
During my initial diagnosis with a very prominent NYC Urologist I was told I should have an RP; he ( the Dr) gave me a prep package and told me to see his assistant to schedule a time. I replied that I thought it reasonable to seek another opinion, his response was:
“ if you think you can find better, go ahead”
Smug son of a bitch; I found better.
Did you decide on an RP?
I was diagnosed 2 years ago with a 4.2 PSA and a Gleason of 7 (3+4). I resisted the RP and radiation ( wary of ALL associated side effects. I had genetic testing done (PROLARIS) which told me I had a 7% chance metastasis over the next 10 years. Good odd; in my favor.
Armed with that info I went back to same urologist who scoffed at it and still said surgery was his advice, he was a surgeon; and in hindsight, a vet pompous ass.
I have seen 9 urologists until I found one who agreed to monitor me every 3 months with an MRI and PSA test for
“ active surveillance”.
2 years later (2019) ; the PSA and MRI have remained stable.
😉😁👍
I suppose I may be fortunate, however I belong to 2 support groups aside from this website and have encountered too many men who are permantly scarred ( both mentally and physically) from trusting their doctor)
I am 63 ( and in excellent health and physical shape) and wager I need to keep this boat afloat for anther 25 years max; I made a calculated decision and threw the dice...
My quality of life; my decision.
Most doctors do not seem to understand that.
Great story Frank! Keep doing whatever you're doing!
I was on AS for a while; however, my PSA continued to increase so I decided on a radical...that was 15 years ago and so far I have no regrets.
Thank you Rob, for the encouragement
What is your story?
Frank
I am using tE2 gel as my only form of ADT and my last PSA was 0.004. No side effects other than man boobs...no big deal.
If that works for you; that is good.
The “ man boobs” can easily be resolved with exercise or minor cosmetic surgery
Your mental perspective is as important as your physical health.
Your profile says “ Thailand”; are you an expat? If yes, what is the state of medicine and treatment over there? I have visited Bangkok and Pattaya; beautiful country and gentle people.
Frank,
I moved to Thailand 14 years ago, shortly after my RP. I have a nice condo on the beach just north of Pattaya in Banglamung. Medical care facilities are very good if you can afford to go to private hospitals which are still far less expensive than in America. Actually the government hospitals are not bad if you don't mind spending a half day there. All Thais are treated for only 30 baht (one US dollar)...foreigners pay much more, but still a bargain. HIV drugs for example which I understand are quite expensive in most countries, are only 30 baht for a 90 day supply for Thais...I think foreigners pay about $100. For anything major I go back to the States since Medicare does a good job of paying there; however, pays nothing out of the country. I can buy most pharmaceuticals here...many without a prescription.
🌵
That is great . Good for you .👏
Seven years ago my doctor, a urologist, told me that I would be dead in five years. Darrell I just can’t match your examples of stupidity.
I have to take exception to this posting Darryl. There are good and poor doctors as is in any field. Some are just ignorant, some arrogant, some poorly brought up. That said, for those of us thankful enough to still be alive, it is ONLY because of the very hard work and dedication of many in the science and medical field!!!!!!!!
Maybe we need to do a second post of appreciation and good stories. The doc who started with me and has since passed away himself with cancer, gave his entire life to helping those with cancer, nonstop for 40 years!!!!! I am only here today because of his extra, over the top work on my behalf, and did not make a single penny more for the many hours he spent with me and others inflicted with PC. Nicholas Bruchowski was a great man in this field. He lost his wife to cancer and it became his nonstop mission to do everything he could in his live to help tho had this lethal enemy enter into their lives.
I have four PCa doctors that I have the utmost respect for! They all answer my emails in a timely and detailed manner, and have never given me the slightest impression that they are only about money. My urologist at UCI which I hadn't seen in 11 years even called me in Thailand and spent 35 minutes on the phone at no charge.
I fired mine after the diagnose, I saw that I had a cyist in both kidneys. He wanted to do an option of putting a camera up there to see what it was. He knew what it was so why the invasion, the oncologist said they are common in older people and it was nothing to worry about unless they caused problems. I get the lupron from him and dropped the euologist , did thank him for his help and if there are any future problems I will contact him. He wanted more tests to get the money in my opinion and if there was a problems my oncologist would be the lead doctor. We have to question every meds and tests to be our own advocate.
Sometimes it's what they do or don't do rather than what they say. Why did my urologist make me wait over a half hour in the exam room to give me my gleason 8 prostate cancer diagnosis?
I waited 5 weeks under a urologist care with a foley for a biopsy . We had to wait for him to get back from spring break with his kids ..I didn’t make it went into kidney failure . We cried malpractice but no one else would take me in that mess. He also told us “ I never promised you rainbows and butterflies ....
My husband had to wait 4 months with a Foley due lack of insurance. The Foley was placed in the ER where the Urologist said no cancer just big prostate. A PSA was not drawn until 4 months later either and well the rest is history. Husband in hospice with advanced aggressive Castrate resistant Metz to bones prostate cancer.
That is a horror story .. I’m sorry that happened .. modern medicine can do some wondrous things.... but with egos and human error its a miracle that any of us are still here. I suffered through many side effects of APC and didn’t go to a dr until it was almost too late. Then the uro almost killed me by Letting me go into kidney failure while under his care . Then he stated to me and my wife that he was pissed off because he couldn’t make money off of me because I wasn’t a candidate for surgery. I pray that you both find peace in this struggle. May his pain be taken care of by hospice. Please stay strong yourself .. 🙏🙏🕊
I'm so sorry for your suffering. Prayers for you and your wife.
Thank you . we all suffer . Keep the faith ! 🙏
I saw an obese urologist who told me that I had to lose weight before he would perform a RPD and repair my two hernias. I weighed 210 lbs (6' 1") at the time and he must have weighed 350 lbs (approx 5' 8") so I said "don't call me I'll call you" as I left...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 12:33 PM DST
Was he sucking on a chili dog as he dispensed advice?
😊
He may have been, but it would have been difficult to see through his many jowls...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 7:04 PM DST
Many chins..
😂
That CS! I asked my uro upon dx . “Any diet recommended?” Nah , he basically said eat whatever you want ..like youre done anyway...More ice cream !
Now ya talking.............Bring it on...........Scoop after Scoop...
youtube.com/watch?v=yURRmWt...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 10:19 PM DST
MJ’s estate has rebounded since he’s not spending it all at will. Musical genius ,troubled soul ..
Yep except he copied the moonwalk from me..... I should have sued him.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 10:25 PM DST
I want video prof of you moonwalking?
"I want video prof of you moonwalking?" from you
HERE IT IS:
youtube.com/watch?v=uvcD6xm...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 09/10/2019 8:58 PM DST
All time great video .. thank you j-o-h-n ..
Don't mention it... I enjoyed it too.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 10:26 PM DST
I never thought of you as a backward guy.🍸🍸🤠
I learned that on military maneuvers in the Polish army.... 1 step forward 4 back.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/20/2020 12:24 PM EST
Just had the UroLift procedure this morning under full general anesthesia (doing very well -just a few minor side affects)..Have been with my Urologist 4 years since the initial diagnosis of PC. When I got a second opinion the Urologist concurred that active surviellance is the correct option to choose, but he did make the comment that "we can't make any money off of you" (in a jokingly manner).....My Urologist tells it like it is (good or bad), and I appreciate his honesty. He is a very talented and skillfull professional-I am very satisfied with him.....
They ain’t joking . The big bucks are in surgery for urologist ..
No question about that-My Urologist has been doing the DiVinci Robotic TP for the last 6 or 7 years....also teaches other urologists to do the procedure......
Somewhere I heard that the top dog Divinci doc in the U.S. does two at the same time . That’s capitalism!
Where did you have the Urolift performed? I have had a number of Urologists tell me for 25 years to have one of their primitive/barbaric Turps. I have always declined as I learned many years ago if I avoid acidic or spicy foodstuffs that urinating issues are a very minor issue for me. Unfortunately this is evidently not taught in medical school,,,as all men with a urination problem obviously have a bph problem. With the ladies of course they must search further for cause.
Incidentally there are several tests that can confirm causes of voiding problems,,,I have found that urologists in general do not administer them unless you demand they do so.
Lookup Interstitial Cystitis for additional information.
I fully realize that I may too have a prostate issue coincident to my overactive bladder caused by above mention food stuffs and of course my PCa. However diet controls it 100 percent, when I do go off the wagon from time to time,,I do accept that it is my fault and I will have a price to pay,,,albeit usually very minor compared to the permanent misery of a turp. I am certain that many of you know of what I speak
I have read much on urolift, set in on a talk at recent PCRI conference where a urologist from Utah spoke. Sounded very interesting and have considered.
Dr. Michael Rittenberg, Kingston, Pa. (Riverview Urological Associates). Glad I had the procedure (HAVE 7 IMPLANTS INSERTED IN MY PROSTATE)-it certainly changed my life for the better. (Have not had any problems whatsoever, and my sex life has improved tremendously ( don't need the Viagra anymore)..Yes, diet is extremely important, particularly with an enlarged prostate. I say go for the procedure, but find a qualified Urologist who has extensive experience with the procedure (mine has done close to 300)..Now my bladder empties almost 100%, and I dont have to worry about using a catheter for the rest of my life..(.I'm on Flomax, but it's a lot better than the 2 medications he had me on before the procedure)...about 50% of the time I have a retrograde ejaculation, but I'm not complaining....Best of luck!!! MAX
Had a MO (not my current MO) tell me "Provenge is nothing more than an expensive placebo."
I was trying to get a dr note to allow me to telework, my MO (via nurse) said "if pursuing androgen deprivation therapy, symptoms are more tolerable and shouldn't preclude being at work. If you were undergoing chemotherapy, he would expect more symptoms and typically writes a letter stating symptoms more severe and telecommuting may be warranted."
My urologist who gives the ADT shot said, "very reasonable given all you are going through. Would be happy to sign anything."
I have been a registered practicing registered nurse for over thi
I have been a practicing registered nurse for over thirty years, and could write a book about things I have heard Drs say.
It beggars belief at times, but I’m old enough and experienced enough to call them out !!!
Inappropriate, cruel, dishonest, are just a few adjectives.
On that same note, I have witnessed the kindness of angels also .
This site does not discriminate
It is not unkind
It does not dash all hope
Yes, we need our medical specialist, but our souls need people who understand the pain and torment and worry, and who offer great advice for lots of side effects
When we leave that medical office, our diagnosis remains the same
Our anxieties don’t change
We need to share and care
And that’s why I’m here
I gain so much from every level here, and can then sit with my husband and say “ hey look at this “
Thank you all
Thanks for those over thirty years.. We need more like you 😎
Kudos to you... I ❤ nurses.....
Do you want to talk to the doctor in charge or the nurse who knows what's going on?
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 10:37 PM DST
To your adjectives of cruel, cruel, dishonest,,,as a 40 year member as a patient of our broken medical system,,,might I add another,,,,”Inept”.
I could write a book on the mis-diagnosis’s that I have endured over these years, by purported the best of the best practitioners in their specialities practicing in some of our finest institutions.
If my auto mechanic,,,,!!!!??,
Of course I have also met many that are at the top of their game. There are many, likely most of them know who those are that should have never made the cut.
Nothing anyone said .....but after RP at MD Anderson the doctor who surgically inserted my pump was named Dr. Wang....
😂😂😂😂
Thank goodness nothing turned out Wong.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 10:39 PM DST
Your wite .
This will get you banned from most social media these day,,,particularly twitter. 😂
It could have been wong dong and done.🍸🍸🤠
now long dong gone.............
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/20/2020 7:43 PM EST
I do have another one.. This was our introduction to PCa. It was traumatic. We went for a biopsy. Well known doc. We knew nothing. I really didn't know anyone with PCa. He did the biopsy, using a color doplar at the time. Seeing his recent high PSA and Alk Phos, he handed us a prescription for Lupron and Casodex. I asked kind of stupidly, will these be hard on his liver. He was washing his hands and said, we'll test him in about 3 weeks to check. He walked out of the room. He never said prostate cancer, nothing.
We were sitting in the waiting room to make an appt when the nurse who assisted us walked by. I stopped her and asked can you tell me about these drugs. Her response was these are chemical castration drugs. My husband turned white, we had to help him into a private room where he cried. That was our introduction into ADT. This was 2007, leading research and teaching center.
Though, through it ALL.. actually it helped us to get strong and make our own decisions. So, in a back handed way it was a gift for us to not depend on the medical system without our complete congruence. We are GRATEFUL.... we found very early as in life.. look for the silver lining.. it is there, we may not like it or want it.. but this is life.. and we trust it...
youtube.com/watch?v=ILAqjcP...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 10:44 PM DST
oh WOW J-o-h-n THANK YOU SO MUCH... so much love to you. we listened, we smiled, we know the Truth of Jimmy's song.. and yes, Bluebirds.. I love them.. all birds.. I'm a bird !!! I have raw peanuts in the shell.. I put them out my 3rd story window and the Jays come and swoop down not stopping and then every so often .. one comes who is brave and stands at my window talking to me.. it makes me smile...
YOU are so kind.. YOU know how to touch people.. thank you.. with all my heart...
Bluebird 11
ole Jimmy Durante.. I remember him well..
We have a beautiful Blue jay living off of porch .
I'm also trying to ID the difference between a crow and a raven.. I know the tail.. and the ravens travel in pairs.. they are also beautiful and huge... little joys big moments...
In the spring at our place in the desert we have mating rituals of the crows . Sometimes 10 of them flirting and playing in the thermals above . They chase each for days on end .. Once in a dark wood at 7800 ft near our cabin we were walking lulu and there in the darkest part of overgrowth there as a stump . On this stump the master f ceremonies giving his directive and all around him were 100 others listen to every word . It was amazing . Ravens are bigger ,travel in pairs and diamond shaped tail.. It’s difficult to tell sometimes .The Navajo believe that the crow is the messenger to the other side .. They are one of the most intelligent birds. Having their own language and facial recognition of good or bad humans .. We love the magpies in Colorado . Better paint job ..still basically a crow ... But only one Bluebird11 on HU .. Take care bird lover, we are also fans ..
You're so kind, Thank you. My wise Mother used to tell me "if you feed the birds you'll never go hungry". I have a bird bath in my backyard and sometimes I look up at the sky and say to myself "Mama does it mean if I give the birds a drink that I'll never go thirsty?" At that point I duck cause normally she would have smacked me.. Tough lady but still wonderful....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 09/10/2019 12:50 PM DST
Taught you right from wrong ..
See, J-o-h-n, I don't need to say more. KUDOS.🍸🍸🤠
Darryl, thank you for posting this. I think this has given some of the members the courage to question their doctors.
Doctors are not gods, they say stupid things and don't always do what is best.
Hey that's my line..... I used to work with two people whose last name is Chin. I used to refer to them as the double Chins.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 09/10/2019 12:55 PM DST
I was unable to see my doctor one day. So they sent me to his associate. She was a pretty young thing and very energetic. She sat down and told me with a very serious face that if I was to get cancer prostate cancer was the one I wanted. She begin to explain to me how they could cure prostate cancer. She told me how they were going to make me better. My doctor had told me that they were just buying me time and they would do the best job they could. I guess you should’ve read my record.
Two different perspectives .. nice water behind you there .. take care
My URO said that once you are past your life expectancy age theres no need to do treatment.Another said if we damage your ability to pee with an RP we can fix it.
Its amazing that Mr x is doing so well on Lupron. Dont know why....You wont die from prostate cancer..no good reason for the comment...just sounded good at the time.
A MO told me in 2015 after reading my file that I’d be dead in three years. I walked out and am doing well.
Keep smacking that ball down the course ..
Hello to all
Any input on bad dreams
My husband quick history
Diagnosed Feb2018
Gleeson 10 adenocarcenoma
Stage 4
Extensive Mets
Heavy lymph involvement
Commenced cosudex
Soon after docetaxal
Was on zoladex third monthly
Recently changed to eliguard due to excerise program it promoted and helped with
Only two treatments Docetaxal as became neutropenic and hospitalised
many times
Resistant to cosudex within few months
Now on enzalutamide and xtiva injections monthly for bone
Bone pain managed with low dose Targin (opiate slow release) twice per day
On Effexor which has greatly reduced the hot flushes ( Aussie)
And....general outlook improved as that drug primary use is antidepressant
Long story short
Lately he has been having terrible dreams
No recall but wakes feeling terrible and feels like he is done something wrong
Looks tired
Worries about the severity of the dreaming
But pushes through daily
Goes in to work for three to four hours
( after that becomes foggy tired and of no use he says)
Any thoughts ??
My dad complains repeatedly to his GP about intermittent bone pain in his hip and upper thigh, Doc says, “gee it’s kind of hard to fix an intermittent problem.” Hello, stage 4 cancer in dad’s hip...
(Oops I meant this to go in the “docs say the stupidest things” file...)
“you’ll be dead in three years” five years ago.
My Doc called me a "Million Dollar Man Patient" He said with the forthcoming Surgery, Radiation, ADT Therapy, Salvage Radiation, Xtandi, then likely Immunotherapy the cost would be a Million Dollars. I said F**k him..
My Doc told me 7 years ago in front of my wife to get my affairs in order as it would only be about 3 years until I was gone. Well, I've gotten 4 more so #@%&* him....
Prominent doctor did the Same to us! Screw him!!! Good for you! Keep up the great work and maybe send him an anniversary card lol.
I had four Docs almost 10 years ago tell me I would have to accept a "Lesser Quality of Life" in my journey. I said NO. and regained all my functions despite 6 months of Lupron, some Radiation 9 Years ago. If I only knew then what I know now.
How are you doing? Please tell me more about your journey (intermittent protocol). and radiation. I could get a sort of PCPES here in Switzerland.
“You have about 6 months”,” “you are qualified for hospice”
“ prostate cancer is the good cancer”
“ it won’t kill you”
You're 75; why do you need sex?
I'm a married man. We forgot about that (sex) a long time ago.
So here’s one:
The nurse yesterday when describing the procedure for placement of beacons/space OAR said:
“The best way to describe it is they are like long skewers... you know, like the ones they use for Shish Kebabs.”
I said, “that’s the best way to describe it?”
After I tell Kaiser GP that I am having to pee often, He says"Welcome to old age" A year later I finally get a PSA test after none for 6 years Stage 4 mets throughout my abdomen.
The Kaiser Urologist comes starts making jokes about divorce and alimony. Then sits down rolls me over and starts screaming at the nurse that this isn't his favorite probe. The nurse says those have all ready been used today and all we have is plan B. The Dr. shoves it up there and starts twisting and rotating then starts screaming again for the head Urologist to come in and show him how to get the image up on the monitor. Now I have both Dr.s shoving and twisting until they find the camera
There is a joke mixed in here somewhere
So I get a second opinion after 6 months of, Lupron and Zitiga, from the most prominent Urology Dr. at the local teaching hospital. He says extent of heavy bone mets doesn't make sense with only 12 PSA at diagnosis. I was so happy when he sent my Dr. a request for an MRI(I never had one). I wait for a week and Kaiser Dr responds because of the CV crisis let's set up a telephone appt.
I tell a friend about my struggles and this latest update. His response " when did they start doing MRI's over the phone." ...............
You can guess how the phone appt went, Definitely no MRI
The oncologist knows better than the best Urologist
Following RP with PSA rising my surgeon said ADT was my only therapy option.
I asked what I should to prepare for any side effects of ADT drugs.
He said " Get really fit, as you will most likely die from a heart attack"
I moved from that caner centre and found a sympathetic Oncologist with great success.
The doc to my husband, "You have, two weeks of survival time at most, I'm sorry." That @#$% statement set my husband's brain on overload! He began acting out. Its all on this website. Well? With love, pain (on my part too, I know he had his own), diet and many alternative treatments, he lasted 3.5 years. Docs need a muzzle sometimes!
We’re glad that your husband found a source of sanity on our Malecare community
Doctor walks in "You have 5-8 years and you won't last a day past 8 and there's nothing Dr Kwon or anyone else can do about it." He had not even sat down and introduced himself. What a disappointment and waste of our time. Who in their right mind would be treated by a doctor that would be pissed off if he was wrong? I should write him and thank him for the anxiety. This information was useless to us.
Mine said“Your pSA was 5.2 in 1/17 and we never rechecked it. Oops. Diagnosed in 4/20 with PSA at 77 and bone mets. I hate that MF
I think the only Drs. That should treat you should have cancer themselves.
Dr “Oh Hi. I’m surprised to SEE you” Me - “well I got a third opinion”
After I tried to tell my urologist that there were different treatments offered in different countries, he replied: The Standard Of Care of surgery/chemo/radiation is the same all over the world.
his spine have not responded to radiation. Our doctor recommended treatment in Heidelberg which may...
This is doctor to doctor advice...I still like the one from The Mayo Clinic best..if you live long...
After 18 months of ADT, his RO took him off ADT, saying that this is SOC. His psa remained at .008...
life on your terms.
Enjoying the things you enjoy.
Don’t worry about the pain.
We've got you...
advice. People saying you should be productive or promoting ways on how you should be living your...
Never heard anything that stupid.