OT: First the bad news, then more bad news

komodobob

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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.
 

rhythmace

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For legal reasons, doctors alway hit you with news like that hard, so you won't wait on going to the oncologist and then sue them. Some people actually don't go. Sometimes it's a slow growing cancer. Many older men don't need surgery. Maybe the next step is to go to a lab? I would be frustrated also, but I bet they take good care of you in spite of Covid. If you have been having check-ups once a year, I bet you will have an excellent prognosis. Ace
 

Tomb

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Sorry to hear. It's very treatable and no doubt the doc will lay out the plan for treatment, but I feel for you having to wait. Keep us updated. You got this
 

DamnSingerAlsoDrums

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Aaaaaaw man! That sucks big, big, time. I am deeply sorry for you and totally get your anger and frustration at the situation. I hope you can sort it out promptly with your Onco and that adequate treatment can be administered in a timely fashion. Courage, you will weather this storm.
 

gretschdrummer

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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.
I am sorry to hear this
Try to stay strong
I know how hard that is
Especially fear of the unknown

I deal with anxiety issues and I’m sure this will take yours up a lot

Keep us up to date and don’t be afraid to post updates

This place is more than just drums ok?
 

BennyK

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As usual, somebody else says it better than I could .

 

noreastbob

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I had prostate cancer in the late oughts. It won't help much but I'll say if you have to have cancer, prostate is one of the least dangerous types. It's almost always very slow to progress and if it hasn't breeched the gland walls you are likely to be 100% cured via surgery. Not without side affects but better than managing metastatic prostate cancer in the bones and/or lymphatic system the rest of your life. And that's not a death sentence anyway
I was forced to delay two years from the time a doctor detected a nodule during a digital-rectal exam for a biopsy due to losing my job and insurance in the '08 recession. The biopsy in '10 was positive. My nodule/cancer was completely enclosed in the prostate luckily and had stayed thus until I could deal with it in '10.
I got three opinions on what I should do and even the top Radiation Oncologist in Rochester, NY, where I was at the time, recommended surgery over radiation under those circumstances. Clean...done...and gone!
If you go the ray zap and radio active seed implant route those hopefully cooked cancer cells remain in your body. And the nerve damage suffered via surgery may come on slower with radiation but those nerves will be cooked eventually and as or more useless than if they'd been hacked off the prostate wall. (Nerve sparing surgery)
You will learn all this from your Dr. and make your choices based on your case of course. I'm just trying to reassure you that scary as it sounds and indeed is... prostate cancer in 2020 is not a life and death matter.
If Pancreatic cancer is a 10 on the bad cancer scale, prostate cancer is substantially less than 1.
On another subject I'm pretty sure you are not entitled by any "right" to the goods and services of anyone or how those services are offered. Your Dr. has every right you have.
 
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BennyK

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Very close friend of mine , who used to be an interviewer and product analyst at Modern Drummer Magazine lives here in Ottawa . He too was diagnosed with prostrate cancer early this year , had a radioactive seed implanted and last I spoke with him( two weeks) , his current prognosis is excellent . Inconvenient and uncomfortable ? yes , but nowhere near the gloom and doom it used to be , say, fifteen years ago .

I've a list as long as my leg of things to be grateful for and I don't stray too far from the nest without it , folded neatly in my pocket and if I forget ,then I have friends only to willing to list them for me .
 

komodobob

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I had prostate cancer in the late oughts. It won't help much but I'll say if you have to have cancer, prostate is one of the least dangerous types. It's almost always very slow to progress and if it hasn't breeched the gland walls you are likely to be 100% cured via surgery. Not without side affects but better than managing metastatic prostate cancer in the bones and/or lymphatic system the rest of your life. And that's not a death sentence anyway
I was forced to delay two years from the time a doctor detected a nodule during a digital-rectal exam for a biopsy due to losing my job and insurance in the '08 recession. The biopsy in '10 was positive. My nodule/cancer was completely enclosed in the prostate luckily and had stayed thus until I could deal with it in '10.
I got three opinions on what I should do and even the top Radiation Oncologist in Rochester, NY, where I was at the time, recommended surgery over radiation under those circumstances. Clean...done...and gone!
If you go the ray zap and radio active seed implant route those hopefully cooked cancer cells remain in your body. And the nerve damage suffered via surgery may come on slower with radiation but those nerves will be cooked eventually and as or more useless than if they'd been hacked off the prostate wall. (Nerve sparing surgery)
You will learn all this from your Dr. and make your choices based on your case of course. I'm just trying to reassure you that scary as it sounds and indeed is... prostate cancer in 2020 is not a life and death matter.
If Pancreatic cancer is a 10 on the bad cancer scale, prostate cancer is substantially less than 1.
On another subject I'm pretty sure you are not entitled by any "right" to the goods and services of anyone or how those services are offered. Your Dr. has every right you have.
Thanks for the good info and reassurance Bob. It's still a scary thing, but I am a fighter. My fear is that it may have moved elsewhere. Guess I'll know more next week.
And you make a good point about my rights vs the Dr. rights. I'm just feeling a little selfish right now.
 

noreastbob

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Totally understandable and no one would fault you.
The best news I can give you right now my fellow Bob is that as a fighter you're already WAY on top of this. (please read that a couple times and soak it up. It's a fact.)
I kind of went into a disconnect as my ordeal unfolded and though there were choices to make I tried to listen to the experts and remain as emotionally detached as possible. I was 59 and alone (as I am now) in those days. Hopefully you have some support.
You will probably have a complete body MRI scan to check your bones, especially pelvis, and your entire lymphatic system. The week after that scan waiting to hear is the worst but it's only a week or so and you just have to try and compartmentalize it.
Now it's easy for me to say as it all went about as well as it could have, but as crazy as it sounds it was a pretty interesting and very educational experience...on several levels.

PS: My surgery was done with a Da Vinci machine. Your Urologist will tell you all about it in the deluge of info coming your way. I don't know your age but they may do nothing but monitor it.
 
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lossforgain

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Good advice, Bob.

Sorry to hear you have to fight this fight, but I personally know more than a few guys who have been successful with it. Praying for you, my friend.
 

RIDDIM

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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.
-I'm very sorry you're going through this.

It may be that the initial visit can be handled by Zoom or such, or that he can call you before you could book time for an appointment. I can understand why the doctor would want to minimize face to face meetings - it's possible you could pick up COVID from visiting his office too. Who knows how many folks pass through his office every day and how many are carriers? If he gets sick, that won't help you any.

Hopefully you'll be able to get the info you need and the two of you will be able to to choose and embark upon a course of action in the near term.
 

JimmySticks

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I get it, the initial shock is hard to take.

Quick story, my PSA numbers were high during a checkup, 7.3. I was sent to urologist who said go for a a CAT scan, but I’m sure your ok he says. I go, get the scan, and 3 days later my phone tells me I have message in my medical app. It’s the freaking results! Maxed out PiRads. A 5 with 5 being the highest, cancer! I kind of freaked, like you. I had to wait a week to see the doc, all the while going through worst case scenarios. He takes a biopsy, lovely procedure, wait another 2 weeks, and I come up clean!!! So you never know no matter what the initial tests say. Basically I wasted a month of freaking out for nothing. However I go back in January to see if my numbers are ok. Fingers crossed.

But I learned a lot about this cancer. It is highly curable and slow moving. Very good treatments are available. But I also get it, it is cancer and no treatment is without some kind of issue.

Just try and hang tough till you get the particulars. For men, this is our weak spot and most men will have some issue with it. I know mine is enlarged, as my stream is slower than it used to be. That won’t get better with age, but there are worse things I tell myself.
 

WLVN

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A friend of mine was diagnosed with prostrate cancer a couple years ago. I was very worried for him but it turned out be a relatively routine ordeal. They injected a pellet and all he had to do was get checked periodically. He's cancer free now. I hope and pray it's going to be that easy for you.

Three years ago, I had a 10.8 cm tumor attached to the wall of my bladder partially occluding a tube to one of my kidneys. I had ignored the signs for more than six months and when it was discovered, it turned out to be a very aggressive form of cancer but it hadn't yet spread. I had surgery to cull it twice but it was mostly the eight chemo treatments and thirty radiation treatments that shrunk it and killed it. I didn't need re-constructive surgery and I've been cancer free for two years now.

My oncologist told me that I did indeed have a "big mess" to clean up but that he had an even "bigger mop". My urologist impressed upon me to fight and beat the cancer with everything I got. It made me realize that I had to be positive about it.

It is a huge shock to hear those words especially when it's about you or a loved one. You will get through this and be okay. Trust the doctors who have dedicated their lives to saving people and who have spent a fortune on their education to do so. Stay positive my friend.
 

LRod1707

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Really sorry to hear about this. No doubt it's scary but you will get past this. As others have said, it's very treatable. 2 guys at work got diagnosed last year and they both are perfect and cancer free. Thank God we have the treatments that exist now days. About the doctor visit, glad you are standing up for what's right. This whole covid situation is messing everything up! I send many blessings to you and stay Positive.
LRod
 


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