Still Waiting

[Number1gland]

Finally got a call from UC Health and will be going to visit the team on October 2. I'm not sure if I upset someone up at Cleveland Clinic with one of my many emails but I've received a couple of calls from them wanting to know what they could do better when it comes to first presenting there diagnoses to a patient and how they could make the referral process go a little smoother. First off I apologized to them for reacting the way I did and then told them when I heard the C word I went into shock and then panic. But the doctor reacted like it was no big deal and only gave me one option. To me the C word is a big deal and I felt like this is it for me. I ask how long I have and only got you have many good years left. Well, to me a couple is 2 years, a few is 3 years so many must be 4 years. Well I've since come out of shock, cooled down and have accepted that I have pc and now know I was asking questions that nobody has the answer's too. I just told them I wish they had shown a little more urgency about what needed to be done and it wasn't their fault it took UC Health 2 weeks to get back to me even after the doctor told me they would be in touch with me by the end of the week. Sorry for bitching about nothing but, I've known I have pc for over 2 months now but don't know the specifics of it and how, when and if it is treatable. I've been doing sleepless night research only to hit dead end after dead end because I don't know the specific's of what I got. Thanks for listening and putting up with me and I know your probably wondering how I can have prostate cancer when I sound to much like a bitch. Wow! It just hit me. Nobody is going to want to be around me if/when I start hormone therapy.

[gamma909]

I find that waiting has been one of them more difficult things to deal with when dealing with PCa, especially if you're someone who is action-oriented. I have surgery next month and the process started about 6 months ago. However, the wait time allowed me to do a lot more research, meet with a number of different MDs, and get some additional testing. In addition, it's given me time to learn a lot more about how to prepare for RALP and how to plan for post-surgery recovery. So the time has been invaluable in making my decision and in being as prepared as I can be. PCa is a tough diagnosis to handle but you will find a lot of support from others who are dealing with this. Best of luck working through the process and best wishes for good health.

[dentaltwin]

Yeah, waiting is tough, especially if you (like me) are a worrier. It took about 4 months between my first high PSA and my surgery. It probably could have been shortened had I wanted to be treated at my local urologist's hospital, but I chose to be treated at a dedicated cancer center. For me I believe it was the right choice; had my RP/PND on Tuesday the 11th (and today had my Foley removed--YAY!!). For most of us, life doesn't end. Having close family and friends of course helps. Definitely research your surgeon/radiation oncologist and talk. Oh, don't worry about pissing anyone off. Whatever you deal them, they've heard worse. But I haven't encountered one loser in this whole experience--and the good clinicians will be wanting the same for you that you'd wish for yourself.

Good luck!

[jackcop]

68 year old *Still working* (Iknow ,Iknow): My biopsy was March, 2018 and came back with PC, Gleason 6, 3 tiny tumors, etc.. I went with Active Surveillance.

I understand the shock of your doctor saying you have prostate cancer. No matter how aggressive or in my case how non aggressive my prostate cancer is... it is still cancer. It will grow, and I will have to do something about it. So, I understand the shock. Some doctors have good bedside manners some don't. It does not alter the fact that I have cancer. God, I do know how you feel.

It's important for all of us to know that the medical records are ours, not the doctors', hospitals' etc. I have copies of my records and cd's of scans. Ask for them and they'll give them to you. Really no problem.

[Hidden]

I was told I had aggressive Gleason 8 cancer. Radiation was recommended and the standard treatment is to start on ADT to shrink the prostate and sensitize it to the radiation. I had a weeks long battle with the damned insurance company to authorize the (eligard) treatment. My research had already determined that the use of Casodex prior to eligard would contain a testosterone 'flare' that eligard can cause. My urologist didn't offer it. I demanded that he write me a prescription for it. I got some peace of mind feeling like I was at least treating the cancer with something ... while I was waiting for the real treatment. After more research I went out of pocket to get HIFU instead of external beam radiation. BTW, my urologist had disparaged brachytherapy (radiation seeds). Turns out that his practice didn't offer that. It is a minefield of treatment decisions that you have to navigate, unlike probably any other disease, and you have to be careful of the biases your doctors have based on their capabilities or lack thereof.

[Number1gland]

Here is something that had me a little concerned. The Dr. that did my biopsy told the oncologist that he had planned to just take out my prostate until he got the MRI results. He didn't tell me. Wouldn't he have seen something while performing the biopsy that might of told him it had already spread out of my prostate? I don't know that's why I'm asking. It's just he already had his mind made up on what he was going to do even before he had all the test results back. Maybe my age had something to do with his decision? Right off I don't trust any Doctors now.