Prostate Cancer Network

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I'm angry. I have been followed by my internal medicine doctor with yearly PSA for ten years. The last three years the PSA came back a little high. 5-6. Each time the doc put me on antibiotics telling me I had prostatitis. Repeat PSA went down slightly each time below 5. This year the PSA was 7. Antibiotics again. Repeat PSA 8. NOW I'm sent to a urologist. Biopsy shows cancer throughout the gland with a metastatic node. Stage 3.

Obviously the tumor has been there for years even though I have been screened yearly 10 times. This business of routinely using antibiotics for an elevated PSA and blaming it on "infection" without further suspicion has put my life at risk. It limited my choices for treatment. Having elevated PSA repeatedly, although mildly elevated, should have waved red flags sooner. Send the patient to the urologist sooner than later! I have a lot of tumor with a PSA below 10!

My message to doctors: I know you are busy but patients are not all the same. You may have us on a conveyer belt moving us through quickly because reimbursement for your services has been severely reduced over time, but you still need to be careful when a patient repeatedly has an abnormal screening test. IT'S NOT ALWAYS PROSTATITIS. IT COULD BE CANCER.

25 Replies

Steinmother...., I hear and feel your anger! I am a 77 year old, 24 year PC cancer survivor who was fortunate at age 52 to have an internal med Doc who believed in the PSA test and who also did digital rectal exams. HE suspected problems and immediately had me see a urologist who did a biopsy and found my prostate cancer which was taken care of by surgery and hormonal treatment followed by additional treatments which have me continuing to be healthy AND FREE OF CANCER. I am also active in our local Prostate Cancer Support Group. Sadly, I have heard and seen FAR TOO MANY cases exactly like yours and personally know friends who in some cases had totally "incompetent" docs like yours, or for personal reasons (STUPID) have decided to "wait and see what happens"! (This is called "watchful waiting") About the dumbest damn idea one could have, as your situation so vividly points out. WAITING FOR WHAT? THE CANCER TO BE AT THE STAGE WHERE IT WILL KILL YOU???? In spite of the severity of your situation, please let your urologist do whatever is necessary to help you. Good luck and God Bless. AND IF ANYONE ELSE IS OUT THERE AND READING THIS, WAKE UP AND DON'T BE ANOTHER STATISTIC.

Thanks for your reply/story. I have been wondering whether or not to complain to my primary doc. Will he be threatened? Will he stop being my doc? The damage to me has been done. Nothing will change for me at this point. It's hard to change people. I would like to tell him so other men he treats get a different result assuming it would change his behavior. Still, I wonder......

Steinmother..., I guess I would, just to see his reaction and hear his response. But I guess it depends whether or not you want to keep seeing him. My personal feeling is, after seeing the same thing happen with others in our PC Support Group, "if your doc doesn't order PSA tests or digital rectal exams, time to change doctors. The most important issue of all is to know you have or don't have cancer. Then YOU can make the decision on what course YOU want to take. The worst thing you can hear is the doc saying......, well if we would have known a year ago, what we know now, we should have done the PSA test and checked your rectum! OPPS, SORRY!

Hidden in reply to ng27868168

Orquiectomy is a good way to stop testosterone?

ng27868168 in reply to Hidden

eunuco6789..., an Orchiectomy is probably the best way to stop testosterone if that is what is necessary. In order to answer your question let me tell you my story which may help answer your question somewhat. I am now 78 years old. I was diagnosed at age 52 following a PSA of 10.8 followed by a biopsy which showed PCa confined to the prostate gland. After talking with my Urologist, my Internal Doc and 2 other Docs, who all recommended open surgery (only surgery available back then) as opposed to radiation. Surgery went well but 18 months later PSA began to rise. My Urologist recommended Lupron. Problem was my insurance did not cover the cost back then which was quite high, so the only other option was an Orchiectomy (testicles removed) to stop production of testosterone. That cured the cancer but..., one of the side effects of having testicles removed is Hot Flashes. Luckily for most men it is only a minor thing, but for me, it turned out to be a dozen or more hot flashes each and every 24 hours for about 18 years! Some hard enough to think I was going to set the bed on fire. During that time I tried various meds to control these hot flashes with little or no results. Finally a new Urologist, after looking my record over, suggested, since I had no recurrence of PCa in 18 years, he was willing to prescribe a monthly injection of testosterone if I was willing to try it while being monitored closely. Long story short, it has been a God Send! No more Hot flashes, I have more energy, sleep better and feel good. So..., to answer your question, an Orchiectomy will stop the production of testosterone and no doubt aid in you keeping the cancer at bay, but side effects are possible. Good Luck.

Ginny56 in reply to steinmother

I would probably say something. Not necessarily in a threatening way but the truth is it may change his practice and save someone else's life!

James789 in reply to ng27868168

My doc was like yours, doing the psa from 50 on and was caught it at 53, i'm now 65 doing great, other than ed. The watchful wait was not for me. I was pro-active going to talk to nurses that deals was patients that went through cancer, which help to a lot.

Sir, your apparent anger is understood and justified. Others have commented on the lame reasons guys give for not getting tested. Well there are always going to be a few doctors with lame excuses too: it's too difficult to stay up to date on everything, or the guidance is confusing, etc. You seem to have found one like that. The standard of care is not changed: if your PSA is over 4, you get checked out by an expert- oncologist or urologist. This severe lapse would make me deeply question whether I'd want him watching over other aspects of your health.

The only GOOD thing about prostate cancer is.............. if you find it soon enough there is a good chance it can be taken care. The BAD thing about PC is........ so many men are either careless about getting checked OR more afraid of the sexual consequences of getting it taken care of.

Besides the sexual side effects, I know guys that are freaked out about getting a finger or probe stuck up their precious po-po. They resist going to a doc fearing this might happen. I wonder if this is fear of pain, embarrassment, or statement declaring "I'm not gay!."

Steinmother...., Over the years I have had men call me after hearing I am active in our PC Support group and one of the #1 issues men seem to have is the possibility of losing their erection if they do something about prostate issues! I basically tell them..., "well your precious hard-on won't do you a damn bit of good in the coffin will it." And the answer I usually get is.... "well I guess I never thought about that way." Simply amazing how stupid some of us men are.

Dr_WHO in reply to ng27868168

Great response. People who are considering treatments they justifiably focus on the side effects. I tell them all treatments have one great side effect- Life!

I've been learning stuff on another site. Truth is many live with PCa, and don't die from it.

Based on what you have said, I would at lease check out (search) "Dr. Bob" (check out video lectures) and compassionate + oncology, AND bi-polar hormone therapy.

This is not an endorsement, I have not been treated by him, but he does treat a lot of PCa patients with mets, supposedly with good results.

ng27868168 in reply to JRC61

JRC61..., that's true. But, and it's a BIG BUT. During my years as a PC survivor and being active in a PC Support Group, I have heard too many men AND their Docs say;....... "well I guess if we would have know then what we know now, we certainly should have be more aggressive in treatment. SORRY. However, age at diagnosis is a big consideration.

Steinmother, I am so sorry to hear how you were treated by your doctor. My Primary Care Physician sent me to a urologist as soon as I complained to him about frequency and urgency issues with urination. A urologist would have been alarmed enough at PSA 5 to do a digital exam at the very least (mine did). The problem with PC is there is no one symptom that is confined to only PC. The two I mentioned could have been an enlarged prostate. But, it could also be PC. I was 52 when diagnosed and two months later, the prostate was gone. It has been almost 7 years with no PC! Just remember, if it is only one hand on your shoulder, it is probably his finger in there!

Looks like you are a pilot too. Commercial. I'm private. Thanks for the sympathy. Today I get the second Lupron shot. PSA went down to less than 0.05. I am depressed but hopeful. I hate the loss of libido.

Yes, it is a hard loss to take. On the other hand, beating the cancer and being alive trumps everything else.

I had successful surgery but because of size and extracapsular extension it cost me my erectile nerves (partial nerve sparing but thet never recovered). The other message should be "treat is while its small enough for your erections to be saved".

I feel your anger. I started getting digital exams since I was 40 and PSA starting at 50. In my mid 50’s my doctor stated that my prostate was enlarged, but that was “normal” as my PSA was less than 4. I was told the issues of urgency and frequency were also dismissed as normal for a man in his mid 50’s. That all change when I turned 58. My PSA “jumped all the way up” to 4.7. The digital exam finally came out being “non-smooth”. Finally I asked about seeing an urologist. The result was Stage 4D1, T3N1, Ductal. The urologist stated that I had the cancer for many years before they found it.

I was filled with anger almost to the point of rage. If they decided to follow up with the symptoms even a year earlier my future may of been a lot happier. I let go of it as the type of cancer is rare and is hard to detect. However I will always be saying “what if they were a bit more concerned “. As a result t of this experience I have made it a point to become more knowledgeable about prostate cancer and Ductal prostate cancer in particular. I am also A LOT more agressive on challenging my medical team.

Hopefully there will not be that many men with similar stories but I am afraid that there are. With the medical system what it is it is hard to get individual care.

May you be strong and do what you need to take care of yourself. And remember, “ people like us we have to stick together “.

ewhite999 in reply to Dr_WHO

Same here. They told me it was Prostatitis for a year. Antibiotics didn't work. Finally got an MRI that showed stage 4. MRI should have been done at least a year earlier. Even the first biopsy was negative which is not unusual considering it can only take a sample from one side. I'm a big fan of getting an MRI early in the game.

Hi all

I’m just going through this now and have been told the same take antibiotics.......what are the main symptoms of pc ?? I’m getting burning sensation running back of my thighs and buttocks a dull ache just to the inside up to my anus and a constant feeling I need to urinate ... I’m not getting a full errection I get the normal orgasm feeling but feels blocked and comes out slow .... I’m sorry for u guys who have got cancer and don’t want to sound unrespectfull .... would be nice for any of the symptoms you got ..... I’m 43 I’ve had 2 docs doing dre both said it felt ok and a blood test which they said was normal ... they never told me the numbers ......... thanks for listening

What’s your PSA at? Good place to start

Hi ewhite

When I had tests they just did blood tests and never told me what they did ? I’m hoping they would of done my psa as they did a Dre it was in hospital by the urologist and when they gave me the discharge form it said blood ok but had white cell and blood trace in urine ....... the urologist said he’s most certain it’s An infection in my prostate hiding ????? (Pretty silly answer)

They prescribed me cipro ... but just after taking 3 500mlg doses my groin swelled up ,wrist went stiff and blurred vision ... went back to docs and they gave me cefalexin which after a week didn’t do much apart from

Make me lose weight I went back to them and she gave me another week of them ..... but checked my urine with a dipstick ( it was clear ) shouldn’t they know this type of bacteria doesn’t show up on this test ? and said if they don’t do anything then I’ll send you back to urologist ..... I stopped taking the antibiotics to see if things got worse and they haven’t ..... the reason I stopped the antibiotics is that cefalexin can only be administrative for 2 weeks and after doing tons of research if it was bacteria then I need a 4-6 week course so my thinking is if it is bacteria let it build up so they know what they are trying to kill off ..... in the mean time I’ve been really getting worried it could be pc.......any advise my symptoms seem to swop from needing to urinate constant to pain around the rectum burning in my back thighs at top penis end stingy sore feeling .... I’ve always had lower back pain and neck pain but a bit worried now thinking I’ve had this for years and not got checked out ..... thanks all

Sorry ewhite

Hope your ok mate just gone back on forum and seen your story


Orquiectomy will prevent prostate cancer?

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