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...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.
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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