OT: First the bad news, then more bad news

dcrigger

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I don't usually bring personal issues to the forum, because I'm really more of a private person, but I thought this important enough that I should share with anyone else facing the same circumstance. Also, I'm not looking for sympathy, but rather, just trying to get an important message out there.

So I got the bad news last Tuesday, that I have prostate cancer. They always check when I have my yearly and it turns out my PSA was quite elevated. The urologist couldn't give me any definitive answers, other than to say " you do have cancer". He then refers me to an oncologist, who was suppose to see me next Monday. Now it's not everyday that they tell you that you have cancer, so I'm am very worried. Maybe some here will think I'm overreacting, but cancer is cancer and it's scary.

Here's the other piece of bad news. I get a call from the oncologists office, who I'm suppose to see for my initial visit in a week. His nurse asks if I feel the need to see the Dr. in person, or can he call me. Apparently, because of a rise in local COVID cases, they want to limit in person office visits. His nurse says he will call me. Gee, thanks lady. I've got cancer and you tell me the Dr. won't see me in person? So I ask her how then exactly is he going to treat me, if he doesn't want to be near me? "Dr. ****** will go over that with you next week." Great!!

So now I have to wait and worry another week. Cancer is growing inside me and they fiddle fart around thinking about how they are going to treat me, without even seeing me? THIS my friends is a classic example of the collateral damage, that has been occurring in this country, for the past 10 months.

My message to anyone else facing a similar experience, FIGHT FOR YOUR RIGHTS as a patient. Insist on in person care if faced with a life threatening disease and don't back down. I'm not going to. I have a beautiful, amazing wife and two amazing daughters to live for.

People need to see that there is a serious problem within the medical community and patients not getting the proper care that they deserve. And it all stems from not having access to in person visits, because of these new circumstances we find ourselves in.

So finally, my message to the mods, I really don't want this post deleted, so at the very least pin it, with no comments allowed.
komodobob - I don't know how high your PSA was - but if that was the only test you've had, it was both unusual and IMO outrageous for the urologist to tell you had cancer. As even PSA teats with very high results can still indicated other things besides cancer...

And don't get me wrong, prostate cancer is something to take care very seriously - BUT diagnosing it takes time and can't be done from a simple PSA test - that's a screening test... a test that only reveals whether you should have further tests (and it doesn't even do a good job at that - but it is the best we currently have).

I'm so sorry that this urologist has turned something that's rightfully scary - into something that has you in four alarm fire mode.

I went though this last year and know four other guys that are in various phases of going though it. And the consensus all around is the last thing you want to do is panic and rush them on this - because in fact, often you'll need to stand for right to proceed carefully. Some docs will want to jump right into prostate surgery - convincing you with "better safe than sorry". Which would be fine - if prostate surgery had no risks. But it flipping does - and can mess you up horribly. Worth it sure, if you actually have cancer. But all for nothing if you don't.

My advice? Put whatever this urologist has told you out of your mind and try and start from a clean slate when you talk to your oncologist. Who I'm sure will tell you that they won't have any idea whether you have cancer until they've performed a prostate biopsy. And depending on your PSA level and other factors, they may not even recommend that yet. Much more common is to at least perform a second PSA as false positives are just rampant with that test.

Oh and one more thought - before your first PSA, did you abstain from sexual activity beforehand? Because any release of ejaculate within 48 hours (some say longer) can raise your PSA levels giving a false positive. Same goes for any serious physical activity - exercise, etc - for 48 hours prior.

Last year - I was unaware of this before my first test. And then the scheduling of my recommended biopsy was far enough out (indicating they weren't at all concerned) - so I pushed that biopsy back further and had a second test (now better informed). And yes my levels were down - but not down enough. So I risked the biopsy - which came up clean (which also isn't 100% accurate). Then a while later had another PSA test and my levels were back down to a normal 4.4 (My first test was 8.8)

So the main thing I'm saying is yes, fight for your rights... but first, really dig in and do some research.

Here's hoping it all works out fine for you...
 
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noreastbob

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It's funny, my PSA readings were never all that high. Going by PSA is like waking up, seeing light around the curtains and proclaiming, "Ah, I see it's 8:52:09 AM."
Yes... you don't know you have prostate cancer until there's a positive biopsy.
 
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Ian S

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Best wishes to you komodobob, good luck on a swift and calming sequence meeting with the doc.
 

pwc1141

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I had prostate enlargement problems which led to a TURP procedure last month but luckily there were no signs of cancer. Where I live, access to doctors and hospitals is not a problem since there have been no community COVID cases for many months. I sympathize and empathize and wish you a speedy resolution. Good luck.
 

musiqman

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Strength to you and your family.

I just said goodby to my pops who did died of prostate cancer way too young (67) last Thursday.

Regardless any outcome. Make sure everything is arranged for your nex of kin. Even the small now trivial looking details.

This really helps in the mourning process.
 

DamnSingerAlsoDrums

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Strength to you and your family.

I just said goodby to my pops who did died of prostate cancer way too young (67) last Thursday.

Regardless any outcome. Make sure everything is arranged for your nex of kin. Even the small now trivial looking details.

This really helps in the mourning process.
My deepest condolences to you and your familly.
 

langmick

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So now I have to wait and worry another week. Cancer is growing inside me and they fiddle fart around thinking about how they are going to treat me, without even seeing me? THIS my friends is a classic example of the collateral damage, that has been occurring in this country, for the past 10 months.
For some context, my Dad passed from COVID, he had lung issues, so not shocking, but still too early. My Mom got it, was close to dying, and had to watch her husband buried via Zoom, and no funeral.

A few weeks ago she went to see a doctor about a headache...she has a large tumor behind her forehead and that it's probably been there for 15 years. She's off making plans and going to Florida and isn't dwelling on it too much. Surgery will not be easy.

Men get prostate cancer, it's normal. You'll make it through, especially if you keep a positive outlook. The frailty of our bodies is very scary, we don't think of it when we're out doing things until it hits home.
 

Dumpy

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Medicine has become increasingly less personal. A diagnosis like this can also take a toll on your mental health. Make sure to take care of that and do some self care.

Prostrate is a big thing in my family history, so I will be watching this along with everything else. Your post reminded me to do this.

I know you have the good fight in you. We’re pulling for you.
 

Fat Drummer

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Sorry, komodobob... this sucks but as so many have already said... it sucks less that what could have been. I can only imagine the frustration with how this news and time frame is being unrolled and I hate that for you. It's easy to say this and so much harder to believe it, but dont pick up the worry until you actually know what to worry about. A high PSA test does NOT mean cancer... let's see what the next stages of diagnoses reveal before we go all the way there.

And if it is, I know you will beat it because you already said you would in your orgional post... " I have a beautiful, amazing wife and two amazing daughters to live for". You will win right there... it does not stand a chance. BennyK said it best for me when he typed..." We can't step into the ring with you, but we're right there in your corner when this round is done". We may be just a bunch of drum nerds on the internet, but dang it, were supportive drum nerds!!!
 
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komodobob

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komodobob - I don't know how high your PSA was - but if that was the only test you've had, it was both unusual and IMO outrageous for the urologist to tell you had cancer. As even PSA teats with very high results can still indicated other things besides cancer...

And don't get me wrong, prostate cancer is something to take care very seriously - BUT diagnosing it takes time and can't be done from a simple PSA test - that's a screening test... a test that only reveals whether you should have further tests (and it doesn't even do a good job at that - but it is the best we currently have).

I'm so sorry that this urologist has turned something that's rightfully scary - into something that has you in four alarm fire mode.

I went though this last year and know four other guys that are in various phases of going though it. And the consensus all around is the last thing you want to do is panic and rush them on this - because in fact, often you'll need to stand for right to proceed carefully. Some docs will want to jump right into prostate surgery - convincing you with "better safe than sorry". Which would be fine - if prostate surgery had no risks. But it flipping does - and can mess you up horribly. Worth it sure, if you actually have cancer. But all for nothing if you don't.

My advice? Put whatever this urologist has told you out of your mind and try and start from a clean slate when you talk to your oncologist. Who I'm sure will tell you that they won't have any idea whether you have cancer until they've performed a prostate biopsy. And depending on your PSA level and other factors, they may not even recommend that yet. Much more common is to at least perform a second PSA as false positives are just rampant with that test.

Oh and one more thought - before your first PSA, did you abstain from sexual activity beforehand? Because any release of ejaculate within 48 hours (some say longer) can raise your PSA levels giving a false positive. Same goes for any serious physical activity - exercise, etc - for 48 hours prior.

Last year - I was unaware of this before my first test. And then the scheduling of my recommended biopsy was far enough out (indicating they weren't at all concerned) - so I pushed that biopsy back further and had a second test (now better informed). And yes my levels were down - but not down enough. So I risked the biopsy - which came up clean (which also isn't 100% accurate). Then a while later had another PSA test and my levels were back down to a normal 4.4 (My first test was 8.8)

So the main thing I'm saying is yes, fight for your rights... but first, really dig in and do some research.

Here's hoping it all works out fine for you...
David, Thanks for the positive vibes. I did have a biopsy and it was confirmed to be cancer. I guess I'll know more once I have my phone visit next week.
 

JimmySticks

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David, Thanks for the positive vibes. I did have a biopsy and it was confirmed to be cancer. I guess I'll know more once I have my phone visit next week.
I’m sorry to hear that Bob.

When you have your phone visit, try and have your wife with you, because he is liable to go over a lot of details and different treatments available, and if your state of mind was like mine when I had my diagnosis, it’s tough to concentrate and take it all in. And if you’ve read about a treatment that sounds good to you, and the doctor doesn’t mention, ask him about it and see what he says. If your not satisfied, you may want a second opinion. It’s your body, make the best choices for you. Prayers for you!
 

CSR

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By age 70, up to 66% of men have prostate cancer; by age 90, virtually all men do. For most, it’s a slow-growing cancer that can be monitored without treatment. Make sure you discuss all the benefits and problems of aggressive treatment...impotence, incontinence among these. Doctors often feel duty bound to solve the problem to the best of their ability, which may not be best for the patient. Go into the interview with an open mind and try not to panic over the idea of cancer. I’ve told my doctor that I don’t want PSA or digital tests. My thinking may be influenced by a friend who panicked and went full bore ahead with every possible treatment, then ended up impotent and wearing a diaper. He wishes he had been a little more deliberate. I’m not trying to discourage you, I’m suggesting that you, with the help of someone close to you, don’t panic but think carefully about all your options and consequences. I wish you all the luck in the world with this
 

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Sorry to hear Bob. I'll be praying for you and your family for strength and comfort through this tough time. You're a great guy and I hope you get the best care out there to knock it out of your system. Hang in there and keep us updated!
 

JimmySticks

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By age 70, up to 66% of men have prostate cancer; by age 90, virtually all men do. For most, it’s a slow-growing cancer that can be monitored without treatment. Make sure you discuss all the benefits and problems of aggressive treatment...impotence, incontinence among these. Doctors often feel duty bound to solve the problem to the best of their ability, which may not be best for the patient. Go into the interview with an open mind and try not to panic over the idea of cancer. I’ve told my doctor that I don’t want PSA or digital tests. My thinking may be influenced by a friend who panicked and went full bore ahead with every possible treatment, then ended up impotent and wearing a diaper. He wishes he had been a little more deliberate. I’m not trying to discourage you, I’m suggesting that you, with the help of someone close to you, don’t panic but think carefully about all your options and consequences. I wish you all the luck in the world with this
Is there anyway to monitor the prostate without a PSA test? I’m curious, because I’m not a fan of them. A slightly high PSA reading had me going for all kinds of tests and had me very worried, but in the end I was clean.
 

CSR

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Is there anyway to monitor the prostate without a PSA test? I’m curious, because I’m not a fan of them. A slightly high PSA reading had me going for all kinds of tests and had me very worried, but in the end I was clean.
I think just being aware of typical symptoms. I guess it’s a gamble, but isn’t all of life? Sometimes the cure is worse than the disease.

 
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bigbonzo

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It's a hard line to cross. Think of the doctors and nurses. They also do not want to get the coronavirus or spread it to their families.

I just did the same thing, telephone visit, with my mom who's 88 years old. I'm thinking, how can the doc actually see if there's anything wrong with mom if she can't actually look or listen (stethoscope)?

I wish you the best of luck.
 

thejohnlec

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So sorry man. Good advice here on pursuing all angles and information. Hope all turns out best for you and all the others who chimed in with a similar circumstances. Peace and healing, amen!
 

Treviso1

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Mucho love and prayers sent to you, Bob. As has been discussed above, prostate cancer is the slowest growing, least likely to metastasize cancer that we men can get. You didn't state your age, but I am guessing you are above 50 years old. In my practice, it is often said that if we men live long enough, we will all end up with prostate cancer but very few will die from it. While I am glad that you are moving forward as quickly as possible, please try to stay positive and know that you will be ok. Your mental state and attitude are hugely important for your recovery. Stay positive and know that you will be fine. I have seen the greatest amount of success with the robotic surgery for most people, but it is dependent on your specific situation. Godspeed.
 

komodobob

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Mucho love and prayers sent to you, Bob. As has been discussed above, prostate cancer is the slowest growing, least likely to metastasize cancer that we men can get. You didn't state your age, but I am guessing you are above 50 years old. In my practice, it is often said that if we men live long enough, we will all end up with prostate cancer but very few will die from it. While I am glad that you are moving forward as quickly as possible, please try to stay positive and know that you will be ok. Your mental state and attitude are hugely important for your recovery. Stay positive and know that you will be fine. I have seen the greatest amount of success with the robotic surgery for most people, but it is dependent on your specific situation. Godspeed.
I just turned 64, so based on what many here are saying, it was just a matter time before I had to deal with this. Also, it does run in my family, father and Grandfather. The first thing I did after talking to my wife, was call my brother, who is only 18 months younger.

Thank you for all of the well wishes and prayers. It really is very comforting knowing I can come here and receive the support of such a great drumming community. I'll keep everyone updated as I move forward. God Bless all of you.
 


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