Prostate Cancer: Diagnosed with... - LGBT Cancer Commu...

LGBT Cancer Community

Prostate Cancer

Sam08301959 profile image

Diagnosed with Prostate Cancer last June. My PSA has gone unchanged since my diagnoses. My doctor is waiting for me to make  a decision as to when I would like him to  remove my Prostate.  I have no one to confide in and this situation scares me very much.

13 Replies

What surgical procedure are you looking at?

Actually I'm facing the same surgery you had. The robotic prostectomy. My next appointment with my urologist is at the end of May so I may schedule it then. I have to go see him every three months and each time I go in I have every intention of scheduling the surgery then I see my psa level remains the same so I change my mind or shall I say chicken out.  I want to get it over with but I'm just terrified of the whole thing. Especially after reading your profile. All I can do is pray I guess. Well, take care. Hear from you soon I hope. Sam

Darryl profile image

Hi Sam   I'm a big fan of getting a second opinion on biopsy reports.  More info:

Sam, I have 3 masters degrees in Medical management and counseling. I also have had the prostate surgery 6 years ago.  Call me and I can help you through this: email me and I will send you my phone number:

Hi Sam,  how are things going now?  Have you made any decisions yet?  I was diagnosed with PC in Nov 2015, initial Gleason score of 4+4, PSA of 89.  I'm 51.  I have no other health problems so we decided early on to attack the cancer very aggressively.  I had surgery within a month of diagnosis and the post surgical Gleason score was 4+5, with positive margins in the bladder neck, seminal vessels and 5 lymph nodes.  It was a tough few months dealing with it all mentally.  I'm single, and live remote from family, although they have been very supportive.  I'm now facing my next stages of treatment.  I'm on Lupron, to rid my body of testosterone now.  There are a few side effects which are annoying, like hot flashes and pain in my hands which is worse than the hot flashes. My PSA post-surgery was 0.06 and after three months on Lupron it went down to 0.05 so that appears to be working.  Chances are I'll be on Lupron off and on for a long time.  I plan to start radiation (39 treatments) when I get back from a trip to Italy in July.  I just got the results of a Decipher test (look it up, it was totally new to me) and it also did not provide very encouraging news (0.88 on a scale of 0 to 1.0).  But even with all of these bad numbers, and all of the discouraging news, my 10 mortality figure is 20%.  Looking at it another way, I have an 80% chance of seeing my 61st birthday.  That's pretty darn good considering what has been going through my head the past several months.  I would encourage you to ask your doctor about Decipher. It can provide good information both before and after surgery.  Being armed with as much information as possible is key.  Don't give up.  I figure that if I can live 10 years, there will be a whole new set of treatments by then that don't even exist today.  Stay ahead of the curve.

Sam08301959 profile image
Sam08301959 in reply to cfrees1

Hello, how you doing? What is your name btw?. I hate to call you Cfrees1. Sorry it took me so long to write. I'm facing this totally different than you. DENIAL! I know that can be a fatal way to deal with it but I just can't face it. My Dad was 84 when he died of PC and for all I know he could have had it in his 50's. My doctor would rather I deal with it ASAP. He wants me to schedule a Robot Prostectomy right away. My doctor always gives me a funny look every time I tell him I want to wait another quarter at my next PSA check to make my decision. My PSA remains the same at each appointment so I'm clinging on to hope. My next appointment is May 31st. If I don't decide then I'm sure he's going to want to schedule another biopsy. I still haven't told anyone about this. I don't have family to speak. Just my twin sister. I was going to tell her but at the same time I was diagnosed her granddaughter was diagnosed with leukemia so I didn't want her to worry about me as well. My managers at work knows but only because it's going to involve them once I have the surgery. I'd have to be out from work for 30 days according to my doctor. I'm going to look up Decipher once I submit my reply. Thank you very much. I'm sad to hear everything you're going thru and I pray for a speedy recovery. I hope to hear from you soon.

cfrees1 profile image
cfrees1 in reply to Sam08301959

Hi Sam, I'm Chuck. First, let me say that I totally understand where you're at mentally. It is such a shock first of all and then it's a difficult topic to broach with people. It's a little bit like "coming out". Do you just throw it out there when someone asks "how's it going?" It's difficult but important that you have some support, so I suggest you work on this one. You don't have to tell everyone, but it's important that you tell someone. You will need some help during your recovery for sure.

I want to share with you something about the surgery that I learned. Prostate cancer is "curable" if it is removed while the cancer is still confined to your prostate. So the risk of waiting is that you are giving it time to escape. The side-effects also are worse after it has escaped the prostate. For me, from the start I knew that it was in my lymph nodes. My doctor advised that we do the open surgery so he could more easily see what he was dealing with once he had me opened up. If I could have had the robotic and if there was a chance of nerve-sparing, that would really have been a blessing. So my advice to you is to just step up and do it if that is the case. Sparing the packets of nerves by your prostate could allow you to maintain your sexual function. For me, no such luck. Even before surgery , my urologist told me that there was very little chance that the nerve bundles could be spared. But again, even under that scenario there are things I can to do get an erection. But honestly, with the ADT in my system, I don't have much of a sex drive so erectile dysfunction is not top-of-mind for me.

The surgery itself isn't such a big deal. Mine was extensive but I was only in the hospital one night and I ws back to work full-time in less than a month. I was lucky that I didn't suffer from incontinence much at all. I can't promise that will be true for you. But in the grand scheme of things, wearing those little pads aren't that big of a deal.

So, if I wasn't clear above, there are tremendous advantages of getting diagnosed early and there is hope of a cure if it's early enough. i wish that was possible for me. Don't take it for granted.

I'm happy to share my experiences of the surgery, post-surgical recovery etc. It really hasn't been so bad. It would have been better if I hadn't had this experience but I'm looking forward to at least 10 more years and hopefully more. You should too!

Keep us updated on your treatment. What is your Gleason score? How many cores were positive? I'm not rushing to treatment and am in the process of getting a second opinion. I would suggest you do the same. My biggest fear is my anxiety will take over and trump my ability to make rational treatment decisions. Also, you need to find somebody to talk to, I was in the same boat with no one to talk to or lean on. This forum is a great place to connect with other individuals who are experiencing what we are going through....Tracy

My last test showed my PSA at 4.9. It was 4.7 at my last check. I'll continue to check it each quarter. I informed my doctor that I'm going to choose watchful waiting for the time being. He didn't think that would be an issue. He doesn't expect it to change much. At least not at this time. Still, it consumes my almost every thought. A moment doesn't go by where Cancer isn't that far from mind. I'm all alone. I haven't told any of my family and just a few dear friends. Oh, btw Tracy my Gleason score was 4+3=7 but that was just a little over a year ago. My doctor would like to do a biopsy once a year. I forgot to ask him at my last appointment. Will have to bring it up at my next appointment in September.

Hi Sam, actually glad to see you've not anything yet. I was diagnosed with prostate cancer last year. PSA 8 and Gleason 4+3. After much research decided on Proton Radiation Therapy. Now, six months after treatment PSA 1.8. Virtually no side effects, all parts functioning very well. It is a miracle treatment, covered by insurance and Medicare. A nearly perfect treatment. All others are really barbaric. Remember a urologist is a surgeon by training so of course he want to do the $100,000 operation. Research it, study it. There are about 20 sites in the USA that are performing it right now with another 20 facilities coming on line in 3 years. This treatment will make all others obsolete in five years.

Least invasive treatment with Intent to cure is HIFU. A two hour procedure after which the patient wears a catheter for several days so a not to interrupt flow. An outpatient procedure that is nerve sparing and does not interfere with ones sexual ability. For more information go to Keck School of Medicine at USC on the West Coast and ask for Dr. Gill. They will refer you to a specialist in your area if you are out of their service area.

Sam. Did you through with surgery? I felt the same as you back in 2014...but I opted for the robotic prostatectomy. Even though I had it removed and I showed no mets prior to surgery...they were there on my pelvis 4 weeks later. The surgeon did not think that it had spread outside of had. PSA is a difficult guage to use as a deciding factor. My PSA was low prior to surgery...2.90 and yet...I had clearly had mets (undetectable at the time).

No I have not gone through with the surgery. I just had a blood draw yesterday so on Tuesday I'll find out what my PSA is. I'm still very scared. Not a second goes by where I am not thinking about it. Been hearing a lot of good things about Proton Radiation Therapy. Will have to start researching.

You may also like...