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Afraid again
Posts: 7
Joined: Sep 2013

Hello to anyone out there who may be up to tackling this verbose post that has to do with diagnosing prostate cancer. 

My husband, almost 58 years old, was diagnosed with BPH in 2004.  He was having the usual, bothersome/degrading symptoms associated with an enlarged prostate at the age of 49 . . . too young, in our opinion, for a man to be sentenced to years of the same symptoms progressing to the level of what most men experience at a much older age.  Our fears at that time that it could be cancer were dismissed with the explanation that his total PSA was too low for the possibility of cancer (at about 2.0).  After first measured, it fluctuated a little but it has only risen year after year to just over 3.5 this past January, then a few weeks later it was 4.0 and then when sampled again this past July, it had gone up to 4.85.  In January, the urologist also ran a "free" PSA that came back at only 14.0 and when measured again this past July, it dropped to 11.0.  He had a TRUS biopsy about 2 1/2 weeks ago, that (of course) came back negative.  He has, unfortunately, a very significant health history that I shall reserve for later discussion.  Suffice to say, he was misdiagnosed with a serious kidney disease that actually was due to Hepatitis C that they had missed.  He almost lost his life on at least three occasions, one of which was due to a rectus sheath hematoma only one week before our youngest daughter's wedding.  He suffered a PE in 2008, and another in 2009, just before the hematoma.  Misdiagnoses and underestimations that equate to the doctors playing Russian Roulette with his life. 

History seems to be repeating itself in that they expect us to dismiss his symptoms and his blood tests that indicate there may very well be something more serious going on.  All we are asking for them to do is to run monthly blood tests to monitor him during the six months they are asking us to sit back and just wait for things to change.  We feel our request is not unreasonable, given his history and the way were treated.  They're telling us to simply repeat everything in six months and live life as though nothing were hanging over our heads again, which is not only irresponsible but heartless.  We've read that the limits of a TRUS biopsy can (in a large number of cases) miss malignancy, especially if it is early.  If after six months the blood tests don't show a significant change, we could live with their suggestion to only check them once or twice a year.  We're just fearful that if these results aren't monitored more closely so soon after the drop from 14 to 11 in free PSA, they will be dismissing the possibility that he could have something very serious, based on the negative result from the TRUS.

We've read, recently, about a newer more thorough biopsy that uses MRI mapping.  Has anyone ever had one of these and what sort of dog and pony show did you have to go through to get it?  We live just outside Madison, WI but are under the limits of an HMO. 

We wouldn't be as concerned if he weren't experiencing symptoms and if his health hadn't been as compromised in the past.  We're only all too familiar with the doctors in this area sticking up for each other and denying even the smallest of things (like the monthly blood draws we're hoping for) to alleviate this watch and do nothing approach that we have first-hand experience with that led to some extremely deadly consequences. 

Sorry this post is as long as it is, but I believe in pouring out my heart to anyone/everyone who will listen; since, that was what saved him from the gamble they took the last time, waiting for him to cross whatever threshhold they were waiting for before actually seriously trying to figure out what was wrong.

Can anyone help in trying to get us ANYTHING that would support our concerns in asking for a more thorough biopsy than the TRUS and/or anything that would support our suspicions that a steadily decreasing level of the free PSA can indicate a more aggressive type of cancer?

 

hopeful and opt...
Posts: 1357
Joined: Apr 2009

I am sorry for the stress that you are feeling.

I'ver read that having a PSA every six months is appropriate. At first I felt the same as you, but the docs told me 6 months is OK. Nows I am tell you the same. Remember that PSA  it is a guideline only, the results of the biopsy is the critical information. I did not read what your husbands PSA(s) is. What is it? There is a nomogram that Sloan Ketering has on their website so you can determine the doubling time of the PSA. This is important to know.

As far as an MRI guided biopsy; they are available. I am in a research program that does this. This is cutting edge technology. Maybe 1/2 percent of biopsies are done this way. You will have to do research to determine where this is done in your area. Be cautioned that since this is new some performing MRI's are not proficient as yet, so you have to find a facility with experience.

There are two ways of the MRI guided; one with an MRI machine and high power magnet and then a three dimensional ultrasound machine targeting the suspicious lessions, and the other also using an MRI, then targeting the suspicious lesions using technology for the MRI machine.

hopeful and opt...
Posts: 1357
Joined: Apr 2009

PCA3 test is an indicator for the necessity of  a biopsy, and may bring you peace of mind

This test is a new investigational ( only an indicator) urine gene test that is available. The test is a molecular biologic assay. This test has a specificity of 75% and a sensitivity of 57%. (What that means is that among 100 bad tumors, for example, they only can identify 75 of them. And among 100 good tumors, they identify them as bad in 57). The test is done by a doctor who does a DRE and vigorously massages(the fun part...my doc is very experienced, has muscles on his finger, and can make a grown man cry) the prostate; the patient gives urine and the results are sent to Bostwick Laboratories(the only laboratory that does this) for analysis.

So the way the results work, 35 is the magic number, so the less one score is below 35 the better. Mine was 8.3 "Prostatic cells are present but do not over express the PCA3 gene", "value of 35 or greater suggests a high likelihood of prostate cancer"

It is also stated that only a prostate biopsy can diagnose prostate cancer. The test's preformance has been established by Bostwick Laboratories. It should not be used as the sole evidence for or against the diagnosis of prstate cancer. Clinicco-patholological correlation is indicated.

..........................................

 

 

 

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

 

Unfortunately not all doctors are 100% proficient in their duties and when it “touches” cancer none of them are 100% sure of what it must be done. They follow the “guidelines” of their trades and these are mostly based on past experiences that were obtained from guessing methods.
This is why we as the patients should have at least a small “clue” of what is happening and to know sufficiently about all the things and the steps that lead to the diagnosis and later to solve the problem. I awaken to that reality when my doctor asked me to decide on a treatment after been diagnosed. I had to sign an agreement before the surgery relieving him and the hospital of any wrong doings.
We got used to believe that doctors solve all maladies and never give it a though that they also have limitations. They are as “good” professionals as anyone of us. We try to do the best we can under the circumstances. We all need good “tools” and most important the knowledge and the experience.

Your husband needs to do more researches and educate himself about the prostatic issues that have been afflicting him in the past ten years. Such will help him and you to understand better what is occurring and when in consultation with the physicians. It will also help you when it is needed to decide on the best.

I think that you are wise enough to “question” about the negative results of the biopsy. The systematic and constant rise of the PSA and the low fee PSA are positive markers for prostate cancer. A 10% fPSA (free PSA) is 56% true to positive diagnosis, while above 25% fPSA got much lesser probabilities of a positive PCa. His doctors may also be puzzled but the BPH issue along the years may be obscuring the reality.  Foot in Mouth

You have not shared the number of needles or about what has been found in the needles, or what have they felt in the DRE. Moreover, what was found in the ultrasound or in the scans (CT/MRI). Large prostates make it difficult to find any suspicious areas or bumps.
In any case, you need to realise that a common TRUS (12 needles) analyses only a tiny portion (1/thousands) of the prostate which easily misses detection. Even in pathological analysis of a prostate specimen (RT) the whole gland is not checked which could erroneously provide false negatives.

So far your husband has not been diagnosed with prostate cancer. I know that you want to celebrate the news but are not at easy with his medical past.  Frown

 

Newer ways for biopsy use sensor bio mechanical modelling based on tumour density or chemicals to guide the needles. Another method “sniffs” the cancer and targets the “smell” (NZ TV science news);  Surprised
http://www.diagnijmegen.nl/index.php/MR_guided_ultrasound_prostate_biopsy_using_bio-mechanical_modeling_based_registration

A recent proved efficient method is the Prostate Saturation biopsy that used over 30 needles all mapped in all regions of the gland. In a net search engine type this: “saturated biopsy of the prostate”.

http://www.prweb.com/releases/2010/02/prweb3561904.htm

http://www.aetna.com/cpb/medical/data/600_699/0698.html

 

Sorry to say this but I would like to wish you a negative outcome to PCa.

Welcome to the board.

VGama  Wink

Afraid again
Posts: 7
Joined: Sep 2013

I don't know how to thank you for the information you shared.  I will, most assuredly, check out the links you included in your response. 

There were 12 samples (total) extracted from my husband's prostate, 2 from six different areas.  The pathology report indicates that they only sampled the right apex, the right mid, the right base, the left apex, the left mid and the left base.  I assume, from that, they did not extract anything from the anterior portion of the prostate or anything from the center core, which (from the MRI he had done in March) is where the enlargment is.  Each pathologic description of the tissue they sampled is described with the verbiage, ". . . two rubbery white cores of tissue measuring .1 cm in diameter . . . " and that they were all benign. 

His MRI that was done in March of this year, describes his prostate as, " . . . the central portion . . . enlarged, measuring 2.6 x 3.7 x 4.2 cm (volume = 21 ml).  The entirety of the prostate gland measures 4.5 x 3.3 x 6.3 cm (volume 49 ml).  No abnormal areas of enhancement are seen.  A triangle-shaped area of slightly decreased diffusion (ADC = 1.8 x 10-3) in the left peripheral prostate is considered benign.  Several variable sized BPH nodules are noted in the central gland, but none displaying the "smudge" sign of central gland malignancy . . . "   

My layman's interpretation of all of this is that they didn't take any samples from the center of the gland, where I believe the problem may be.  The MRI interpretation by the radiologist of the left peripheral area that he "considers" as benign, wherein they noted an area of slightly decreased diffusion, disturbs me, as do the variable-sized nodules in the center of the gland, dismissing the very real likelihood they are malignant, by assigning them some sort of "smudge"-free appearance.

My husband's labs, we believe, are the only way at this point to track what aggressive course this may be taking.  Given his sudden, emergent episodes of ill health in the past, we feel the course of this current problem will be no different.  From what you've shared with me so far, I am sensing you may be leaning that same way from the little bit I've shared.  Am I wrong?  We are fearful, obviously, but our worst fears have come to fruition in the past.  So as fearful as we are this time around, we are not as afraid of a diagnosis of cancer as we are that nothing much more than the standard 6-month checks (based on this one negative TRUS biopsy) will be their course of action and leave things at that.  The TRUS biopsy, we know, is far inferior to other technology out there that we feel he is entitled to.  The question will be whether or not they will assign his case the priority it deserves and offer us these other options.

I sincerely appreciate the informatoin you've offered and will take the time to check out the resources you've shared.  I must apologize, though. that I am new to this website forum of exchange and am still learning how to maneuver the site.  I hope to acclamate myself with it soon, so that I can post comments and share lab and imaging results with those who have shared theirs with me in confidence and without delay.  I have participated on similar message boards in the past but it's been a while.  I ask for everyone's patience.

. . . . more to come soon.

Thank you and have a great day!Laughing

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Afraid,

in my opinion you're asking the right questions.  A normal biopsy only samples about 1% of the volume of the prostate.  With an enlarged prostate such as your husband has, the perecentage of sampled area is even less.  A negative biopsy doesn't mean you don't have cancer, it just means that they didn't find anything from the areas they looked at.  Although, frankly, given your husband's BPH and the relatively low PSA scores I doubt that the prostate is harboring an aggressive cancer but you can never be totally sure.

I think you may have some misconceptions about what's going on in the center of the prostate and why they didn't sample there.  Most adenocarcinoma lurks in the outer regions of the prostate.  BPH, as you probably know, is the growth of fibrous benign tissue that tends to grow in the center of the prostate.  As it grows it pushes aganist the urethra which travels through the center of the prostate.  Since the prostate is situated within the skeleton region of the hip, there is no place to expand comfortably.  As it presses aganist the urethra it restricts the flow of urine which causes the classic symptoms of starting and stopping, not being able to completely void the bladder, having to urinate frequently, and sometimes pain and discomfort.  This is NOT cancer and although it has debilitating effects on quality of life.  Some urologists and researchers believe that BPH often preceeds prostate cancer but this has not been conclusively shown one way or the other.  There are some surgical procedures like a TURP that can remove the excess BPH and could relieve your husband's symptoms.

It's been my experience that most men are woefully ignorant of the anatomy of their prostate, how it works, and what happens when cancer starts to happen.  I know you're starting the research phase of this journey and would urge you to read as much as possible about how the prostate works.  One great book that I recommend is The Big Scare:  The Business of Prostate Cancer by Dr. Anthony Horan.  It's available in hard cover or as a Kindle download at Amazon.

PSA tests are notoriously inaccurate and extremely poor predictors of prostate cancer and should never be the deciding factor on a course of treatment for someone who has not been diagnosed with cancer.  Only a biopsy can positively tell whether or not a man has cancer.  Many things can cause PSA to vary from one test to another.  Common causes of PSA fluxuations include sex before the blood draw, BPH, certain types of exercise that put pressureon the prostate (like bike riding), some OTC medications, and even the time of day.  A history of PSA scores over serveral tests months apart can help to tell a story about what might be happening but PSA naturally increases with age so it all has to be considered along with other symptoms and tests.

Over treating prostate cancer is a major problem in the United States and other Western countries so I understand why your doctors are hesitant to pursue a more aggressive course.  In any case, I would urge you to seek second opinions from a number of doctors and not rely on a single point of view.

Good luck to you both.

K

Afraid again
Posts: 7
Joined: Sep 2013

THANK YOU!.  The information included in our message was extremely informative and reassuring.  It helped decrease a great many fears.  The book you suggested shall be added to our search for informatoin, to be sure. 

One person who responded to my message suggested posting my messages to the "thread".  Could you possibly help me understand the process in doing that?  I could probably figure it out on my own, but it would probably take me a lot longer than someone helping.  Can I select certain messages related to my original post and connect them somehow to the message board?  I've been responding individually to folks who have been kind enough to respond.  Any help in that regard would be much appreciated.  And, thank you, sincerely for your support!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Afraid, not sure what someone could have meant but usually on the forum people post messages that are relevant to the original topic and all the following posts make up the thread.  I think you're doing fine.

One thing that you may wish to discuss with your doctors is a TURP to relieve the BPH symptoms.  You can Google it and find out lots of information but I beiieve it could significantly help relieve the symptoms your husband is experiencing.  I suspect that all of the lousy quality of life issues surrounding the BPH is heightening your anxiety and if those symptoms can be relieved then I think you'll feel better.

BTW, BPH is not always reserved for men of advanced years.  While not widespread in younger men, it is not uncommon.

Diet, by the way, can play a significant role in both the PSA readings and other conditions which might spur cancer growth.  Dairy and red meat in particular come to mind as these products often contain growth hormones that were given to the cattle to increase production.  These chemicals are passed on to us when we eat the food and there have been many correlations shown between these products and the prevalance of prostate and other cancers.  Another book to add to your reading list is The China Study and there are many blog posts in this forum that addresses this aspect of health.

K

Afraid again
Posts: 7
Joined: Sep 2013

Thanks, Kongo.  I thought I was missing something in posting messages . . . I hope folks will point out my mistakes if I do something wrong in the future. 

A TURP procedure is definitely something we've thought about, since he's been dealing with these degrading symptoms for almost 10 years now.  I feel so bad for him.  He was only 49 when things were first noticed.  It's been a real struggle for him . . . and sad for the both of us, actually.  However, since these numbers started morphing into something scarier than simply the BPH he's been dealing with, we've discussed a certain course of action that we feel would bring us both the most peace of mind.  That being, hoping his urologist will agree to do more than wait until next January to recheck his PSA tests and if the numbers continue to worsen, he's going to ask for the "magic" number that will prompt them to consider more aggressive action.  He has told me, numerous times, that he will NEVER go through another TRUS, so if he hits the secret threshhold they haven't disclosed, he's going to simply ask them to do the prostatectomy. 

He's been through so much these past few years, and I can't imagine playing another round of this ridiculous Russian Roulette they seem only to anxious to have us play again.  Too much is simply too much and neither of us want to take the gamble that they do.  We've both suffered enough.  It's reassuring to know that most prostate cancers are slow-growing and may never actually require treatment, but the hell of the unknown and the waiting for him to get sicker is a gamble we're simply not willing to take.  Statistics have never been on our side and before he's too old to survive whatever they may have to do in the future, he would rather take care of the problem once and for all at an age when he'll have the greatest chance to survive it. 

I should ask, as well, if you or anyone else has ever heard of Cytoxan (a chemo drug of sorts) causing prostate cancer?  He was put on a low dose of that medication for the kidney disease they misdiagnosed him with, for six months and I thought I had read somewhere that it can cause prostate cancer.  So, there's that little wrinkle to add to the pot.

If you're bored and want to hear more of our little saga, added to all the physical and emotional suffering we've both endured through all the mistreatment by the doctors we trusted with his care, there is nothing we can do to seek compensation or retribution from their negligence since here, in Wisconsin, there was a little something called TORT reform passed in our State's recent history with our recent turnover in our State government.  It was one of the first bills Mr. Scott Walker signed into law when he was first elected as governor.  It's one of several boiler plate pieces of legislation he's passed, written by ALEC (the American Legislative Exchange Council), peddled by one of our extreme conservative legislators and passed by the conservative-ruled legislature that limits the statute of limitations (which, with our luck, has passed), and the amount of monetary compensation we can seek that wouldn't even cover the costs of filing the lawsuit.  I was told by three different prominent attorneys in our area that we would win, hands down, but because (in part) of the recent changes to state statutes we couldn't recoup enough to compensate us for a thing.

Just another chapter in the never-ending  drama for us, surrounding my husband's and my own health issues (which has been frustating for us as well these past few years).  I don't mean to whine, but I simply cannot believe the world of modern medicine these days.  I had to fly half-way across the country to find anyone who would help me with my own cancer scare.  I was living with pain you wouldn't believe when my husband was going through all his troubles and found out that I have just a "little cancer" . . . if you can believe that.  It's like someone saying a woman is just a little bit pregnant.  Turns out that I have a trace of bone marrow cancer (multiple myeloma), just not enough that warrants treatment right now.  It may never progress but the pain remains, just not as bad.  My mother died of the disease when she was only 67.  They put me on a year and a half of narcotics to numb the pain but that only ended up in a drug addiction situation that was a personal struggle of my own to overcome.  I had to enroll in a study at the NIH in Washington D.C. to find a doctor that suggested medication they should have offered me here where we live, long before I was put on narcotics.  It took that doctor's recommendation, over a 1,000 miles away, before they agreed to offer it to me.  The only way I found out about the study was posting comments on a message board much like this one.  Thank God I did.  I get an infusion of the drug the NIH doctor suggested, once a year, and am only now taking a strong dose of Ibuprofen once or twice a day.

In my opinion, taking any doctor's word for anything is a patient's first mistake.  A person knows their own body and when there's something that just doesn't quite make sense.  Those are the instincts I've learned to trust the most AND the information shared by people like all of you who have helped me with my questions surrounding this new challenge for my husband and me.

I am sincerely grateful!

hopeful and opt...
Posts: 1357
Joined: Apr 2009

Dear Afraid,

You have been given valuable information at this thread, however I do not believe that you listened to any of the information that was given to you.

You and your husband are making medical decisions about your husbands case without being knowledgeable about what to do.

First, one does not have PCa unless there is concrete information that cancer exists. This is done only by a biopsy. PSA is an indicator only.

The current biopsies that are available although not perfect are a valuable tool. There are also mri guided biopsies that are being evaluated. At any rate the ultra sound biopsy is necessary for diagnosis that one must undergo.I have had four biopsies so far and am scheduled for another one in June '14

I do not believe that you did go to the sloan kettering site to determine the rate that your husbands PSA is rising. KNowing the rate of change is valuable. As Vasco mentioned the rise in PSA lately can be caused by various factors. In my case if you look at my history I had a increase in my PSA numbers during a two year period. My doctor an expert was not worried about this...this happens from time to timel

You have wrongly decided that having a PSA every month is the way to best determine if PCa exists. You did not listen to your doctors, or to the post that I made about this. There was a study, determining if a PSA every 3 months is more effective than a PSA every six months. Six months was found to be as effective as 3 months.

I gave you advise about having a PCA3 test. You did not acknowledge this, but keep on talking about having multiple PSA tests.

Fortunately your husband has not been diagnosed with prostate cancer. ..please be aware that there has been much overtreatment, with significant side effects that are life changing, for those diagnosed with prostate cancer. This occurs because many patients are scared with the diagnoses of "Cancer" and want to take action, eventhough a less aggressive course of action is the smart way to go. You talk about reacting if there is a diagnosis with drastic action. Additionally all too often doctors , wish to ply their trade with a profit in mind to the determent of the patient. 

I know that this post is very direct, and not something that you wish to read, and not written in the best way to say the least , however I believe that this information is necessary for you.

Afraid again
Posts: 7
Joined: Sep 2013

Dear Hopeful,

I appreciate your candor.  I sincerely do.  In no way have I disregarded your insight and your experiences.  If you got that impression, I apologize.  Everything you and others have shared will be considered in whatever direction this recent unfortunate situation takes us.  The decision my husband has made is his to make regarding whether or not he will submit to any more TRUS biopsies and I have to respect it.  His poor body has been abused by the medical care we are limited to here, where we live, and the horror of what we've both lived through cannot possibly be fully described in this forum.  But, I will try.

Again, he was misdiagnosed with a type of kidney disease and the doctors here were only all to eager to write him off as simply another kidney disease patient, sentencing him to a prognosis of a life filled with only declining health until one day having to survive by dialysis.  It was only through my research, my refusal to accept that a man who had always taken care of his body, a picture of near perfect health, to one day, with little action by the doctors he was seeing be given a virtual death sentence like that.  It was absurd!  I watched him suffer through two pulmonary emboli, a rectus sheath hematoma (almost lost his life only one week before your youngest daughter's wedding), life-threatening drug reactions, SEVERE, gut-wrenching physical pain, and torturous treatment for things that were completely underestimated and misdiagnosed.  I had to change bedding multiple times in the middle of the night (layering sheets and blankets) because of such severe night sweats, he would wake up drenched in sweat.  I've driven him in the middle of the night at the speed of sound, hoping a police officer would pull us over and escort us to the hospital.  I've ridden with him in the back of the ambulance numerous times because of their insistance his condition was nothing "serious" . . . and we should just go home and learn to live the consequences of kidney disease.  All of this went on for years, putting us through absolute hell, because they didn't listen to us, and dismissed everything we kept telling them . . . that there had to be another reason for his declining health.  They put him through senseless poking and prodding, prescribed him bloodthinners that involved (at times) both oral meds and stomach injections . . . All the while his liver tests kept declining and when we asked how/why they simply told us that it was part of the kidney disease we were told he would have to live with.  The week before our daughter's wedding, after he almost died for the third time, suffering through excruiating pain from the hematoma, they finally sent an "expert" in to fully evaluate his condition, who discovered he should have had a liver test years ago that was, yes, a bit more expensive than the screening test they ran initially to rule out Hep C.  It was the Hep C, all along, that was to blame for all of it. 

I realize that there are more advanced biopsy options out there, which is why I decided to take this plunge on the message board to gather information about it and to try and ascertain if my husband's PSA tests were significant in determining the possibly more urgent need for closer monitoring in conjunction with the symptoms he's been living with for the past 10 years.  Unfortunately, because of our HMO, we are limited as to where we can go and which doctors we can seek for better care.  I am confident there is better care out there and there are better options for my husband that they are denying us at this point.  Our only hope in gaining their attention this time is for him to set his own limits as to how much more abuse his poor body can tolerate and how much physical and emotional strain we both can survive.  To save the small amount of dignity he has left and to reserve our ability to tolerate much more of their BS, all we can do is set the parameters for ourselves.  Undergoing another TRUS biopsy, with its obvious limitations is out of the question.  If his condition warrants another biopsy, it WILL be one that will be worth the pain and degradation.  Poking around with what equates to a blindfold and simply hoping to hit the target is something he has no interest in.  And, I agree.  We are all but going to beg them for the monthly monitoring in his PSA's, since there is no bike riding, no sexual intercourse (since we haven't enjoyed that part of our marriage the way we used to) for years now, or any of the other reasons that can admittedly explain changes in those results.  I know my husband.  We've known each other for 36 years, married for 35 of them.  The doctors know all the standard statistics and the advances of modern medicine.  But our only hope of surviving this latest challenge is going to be our determination and courage to insist on those things we know work best for us, both physically and emotionally.  The trick will be for them to realize we need to work together in charting a course of action for my husband, and think outside the box.  That is something they refused to do the last time and we nearly paid for that with his life.

I didn't mean to offend anyone.  I didn't think the tone of my messages did.  If so, I sincerely apologize.  I was simply trying to gain perspective.  I don't expect anyone to have all the answers.  No one can.  Each case is unique and each case has its own set of circumstances that need to be considered. 

I am most grateful for your opinions and everyone else's.  I find them all valuable.  They all will be considered. 

Thank you for honesty and for sharing your experiences. 

hopeful and opt...
Posts: 1357
Joined: Apr 2009

If economically feasible consider switching to a ppo medical coverage with more medical options.

There are clinical trials that are available, some are free....see what is available.

It is your husbands right to refuse treatment, however be aware that there can be dire consequence of not receiving a biopsy since this is the only procedure that will diagnose prostate cancer and triger treatment.

You mention that the biopsy is degrading. I do not look at this in the same way. I look at it as a necessary medical procedure that needs to be done by a professional.

As far as pain, in the biopsies that I have had some have had little or no pain, while I experienced pain with others. It all depends on the preparation for biopsy. I forget what it's called , but there is a desensing agent put on the prostate to mimimize pain. 

Note that one can be put under during a biopsy, so no pain is felt. This generally not done

 

 

Afraid again
Posts: 7
Joined: Sep 2013

Thank you for listening to my personal saga and for considering why/how my husband and I are at the point we are.  I realize it's a horribly long, convaluted mishmosh of unbelievable atrocities; so I appreciate your sticking with me long enough to respond.  I was so afraid you may have been offended by my remarks. 

Your suggestion of a PPO is a good one, but in past experience we discovered the hard way that even though our HMO offers that option, the powers that be STILL have control over where they will "approve" the care we request and there are STILL limitations on how much coverage they will grace us with.  AND, we would have to pay a higher premium each month for the option.  In our opinon, why give those "deniers" any more of our hard-earned money each month to just turn us down in the end.  It's sort of like being between a rock and a hard place..

In any event, as I said, setting his own limits on what he will subject hiimself to in the future is entirely his choice and after all he's been through that's the smallest dignity he has left.   And, I agree with him 100% on this one.  If they are going to deny him a procedure that leaves the TRUS in the dust, that's what he is due after all they've denied him in the past that could have spared him the agony he endured for nothing more than their desire to save a few extra dolloars by going with the status quo.  It's disgraceful, absolutely disgraceful!

The urologist he's seeing at the present time told him that, in January, if his blood tests continued to worsen they would HAVE to do more.  Our problem with that is that, well then, if that's the marker they're going to use to determine further intervention, they obviously are placing a certain amount of stock into them.  They've already piddled away almost a month with not awarding us a respons to our request; so all we're asking them for is to run four blood draws between now and January (when they said they wanted to re-evaluate things), and gain the insight those regular results would offer.  That information would appease our fears these next few months and offer them vital information I should think they would consider in fully evaluating the pace of what may be going on.  They owe us, we feel, at least that much.

I was in the room with him during the TRUS a few weeks ago and witnessed my poor husband having to be prodded and poked yet again by people who seem only all too willing to restrict the best modern medicine has to offer for whatever reasons they have.  If anyone deserves a bit better than that it is my husband.  They did administer the lydocaine I believe you were trying to recall as the numbing medication they use.  It helped, he said, but when it wore off, for at least a good hour and a half, he said it was pretty bad.  The worse part for him, he told me, was the injection site they had to use to administer one of the only antibiotics they could because of the extensive allergic reactions he endured a few years ago from other medications.  He had to be wheeled out of the room in a wheelchair after we had to physically clean up "the mess" from the procedure if you know what I'm referring to . . . and degradation doesn't even begin to describe that part of the ordeal.  Further, the valium they gave him to relax him wore off because of their inability to figure what antibiotic to administer because of his allergies, even though they had his full medical history right in front of them for a month.

Needless to say, we are completely frustrated and disgusted by the treatment we both have received in recent history and these few messages don't even make a dent in any of it, in the way of an explanation for our disgust.  As far as, yes, being "put under" for another procedure.  That, too, seems to be reserved for a certain select group of people that they reserve for such special treatment.  Our hope, obviously, in asking for "special" treatment is all but abandoned, given their lack of interest in assigning a priority or special circumstance to anyone, not even for someone who has been through as much as my husband. 

I know none of this is your fault and that there's nothing you can do . . . except listen.  But, in forums like this, I think it's beneficial for stories like ours to be shared.  And it's therapeutic to air frustration and experiences that may, in the end, help someone else should they find themselves in a similar predicament.

Again, thank you for your understanding and for sharing your thoughts.  They are much appreciated!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Afraid,

It certainly seems you've had more than your fair share of stress and health scares.  I would just like to gently suggest that making judgements about potential prostate cancer based on  bad experinces with other health issues isn't a sound way to proceed.  I hope you and your husband make your decisions based on sound knowledge that is relevant to his situation and try to keep the emotional baggage from the other situations or the political climate in Wisconson at arms distance.

As others have pointed out and I strongly agree, PSA tests alone are no way to chase a prostate cancer diagnosis whether it's every month, every quarter, or even every blue moon.  

K

Afraid again
Posts: 7
Joined: Sep 2013

Understood.Cool

hopeful and opt...
Posts: 1357
Joined: Apr 2009

This is the "thread". Instead of private messages, I feel that it best to post at the thread so that one poster can feed off of another and achieve a synergistic effect. Additionally there are "lookers" to this site that this information may help.

 

As I mentioned in the csn contact,

" Being proactive as you are, and educating yourself about this "beast" is the way to go.

Remember that PCa is generally a very slow growing disease, so there will be no quick changes in your husbands status so you will have time to determine the best course of action."

 

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