introduction: Hello, I received my... - Advanced Prostate...

Advanced Prostate Cancer

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introduction

dtr1960 profile image
14 Replies

Hello,

I received my diagnosis in Feb.2016, after my PSA levels rose slightly from my baseline during an annual physical exam.

my current status is as follows....

white male, 56 years of age

165lbs..good to slightly above average physical condition and health

No family history of any type of cancer

PSA...5.9

T1c,NO,MO,G3 (3+4=7)

stage II

No physical symptoms , normal rectal exams, normal DRE, urologist even commented that because my prostate was "smaller" than usual, he only took 10 samples instead of 12 when the biopsy was done.

Classified as "intermediate" risk....urologist suggested open nerve-sparing radical prostatectomy, which is what I've decided to go ahead with.

Surgery is scheduled for April 11, 2016...

I have to say, I was more anxious about missing work (4-6 weeks recovery) as I am self employed..than I was about the actual surgery...until I started reading up on prostate cancer.

I've already shared my circumstances with several friends, and have convinced them to get themselves screened ...and will continue to do so, regardless of my particular outcome.

I'm sure I'm not alone, or the first man with PC, to feel this way, but, will be one more "solder", in the army of men with PC, determined not to see men we both know now, and men we don't know yet, be made aware of just how important it is to get screened, and catch PC early....not to be that hard headed , typical male, too proud or embarrassed, to go through the screening processes, just because we hate going to a doctor, or talking about PC and some of the probable side effects of treatment...

We like to think we are safe in our little bubbles, that things like cancer don't happen to us, and since we "feel" fine..."if it's not broke, don't fix it"...typical male mentality....and I'll be the first to say..."guilty as charged"....but it has to change...I have to change...and if I can convince even just one of my friends, or anyone else for that matter, to catch it early, well who knows...maybe I save a life or two, it'll be worth it....

So, I will keep you all here posted on my surgical progress, how it goes, the recovery, and then the results, as they become available to share...because sharing is therapy...and as physically fit as I am, physiologically, I'm not the "superman" I thought I was, I'd be lying if I said the diagnosis hasn't messed with my head a bit....so , here I am, sharing with all here, that care to read, and reply, to join in my journey, to share there own, to help us, help each other...after all, isn't that what humanity is , or should be all about?

Regards an appreciation in advance to you all...

Dennis

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dtr1960
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14 Replies
Chubby42 profile image
Chubby42

Hi Dennis i am in the same boat was diagnosed with PC early Feb have radical prostatectomy scheduled for 29th March, i am 54yrs of age my PSA was 7.5 and my Gleeson score was 4+3=7, having 4+3 and not 3+4 makes it slightly more aggressive but hopefully caught in time the specialist said another 6-12 months my PC would break through the prostate wall and would be more serious so hopeful it was caught in time, still when your first told its worrying and a million things going through your mind, Im not that fit but also only 1 stone over weight and have been walking about 3 mile a day cut down on sugary food and been doing my crunches, the excercise i hope will help me recover in about 6 weeks as well but have told my work 6-8 weeks, at the moment i think having it caught in time and been cancer free is great but i am of course worried about the after effects sex will be very difficult my wife seems ok with it now but can't help but think will she be the same in 6 to 12 months time. Cancer is in my family so it was sort of expected was hoping i would have been in my sixties before getting tho.

Nice to meet you Dennis keep us posted and ill do the same m8 take care.

Gary

JEKNY profile image
JEKNY

Dennis,

I was in your shoes 8 years ago, with very similar numbers. I had the surgery all went well, I had the incontinence problems for a week or two post surgery and erectile function took 6 months to return, now I have to take an ED pill which I would be taking with or without the surgery at the age of 63.

My surgery was considered to be a failure after my PSA reach 0.2 which it did 5 years post operation. Looking back I probably could have done more with a lifestyle change, and paid more attention during my first post op meeting with the Doctor, the Doctor who did my surgery was not available for the follow-up visit and an assistant Doctor talked to me about the pathology report, I think I would have paid more attention to the Doctor who did the surgery. My numbers were worse than they were on the biopsy report and I had an extraprostatic extension and a peripheral resection margin: Focally positive. This is the fine print I should have had asked for a clearer explanation for but you are not thinking as clearly as you should be 1 week post op, it would have been nice to have them explain the fine print as well as why my numbers went from Gleason 6 3+3 Stage T1c (Biopsy) to a Post Op Pathology Gleason 7 4+3 Stage T3A.

Here I am now nearly 8 years out from surgery and 2 years post salvage radiation which by the way is now considered to have been a failure because my PSA continues to rise.

I am finally making the changes in diet I should have done years ago to give myself better chances at licking this disease.

Good Luck to you and Chubby42 as well.

ezrared profile image
ezrared

Hi Dennis.....my robotic surgery resulted in only 1 week absence from my office.....I have been cancer free for 4 years now but i do have mild incontinence issues and take pills for sex...i was 3+4 also with heavy load and extension at one focal point.....if my load had been light without extension i think i may have delayed treatment

DenDoc profile image
DenDoc

Dennis, sorry to hear you are joining our club. I was 56 when my journey began 18 years ago.

From all my reading results of surgery are directly related to the skills and experience of the surgeon. It is not unexpected to ask how many cases he does per year. If you are anywhere near a major medical center, get a second opinion. You only get one chance in this game and you want your best shot. Many men who have poor results have been maimed by surgeons who were not on the top of their game.

Sexual performance is a huge issue for couples as young as you are. Your wife needs to be at every visit and ask questions.

adlerman profile image
adlerman

It looks like most people are still picking surgery as their first choice. I'm wondering if that's their Doctor's recommendation or their decision. Surgeons always pick surgery.

Radiologists always pick radiation. Some surgeons with "good" records have that because they pick the low risk cases and as one person found out the ultrasound doesn't always match up with what they find when they go in. I chose cryotherapy

because it is repeatable- has a quicker recovery than surgery. Nerve sparing

was not an option as I had tumors near the base. In 13 years I have never had a PSA over 0.1- then 0.07 when detection improved. Cryotherapy may not be for every one but I see it getting little play possibly because so few people perform that procedure.

Just because your urologist doesn't do it is no reason not to consider it. I had one urologist state - in a support group meeting- before I had the procedure- that if he had a patient that chose cryosurgery they would have to get a new Doctor post surgery. That's the kind of dinosaurs still working in the field.

jackdrum profile image
jackdrum

Good morning Dennis

Our history are similar, as to physical condition and age at onset of PC and treatment of choice.

I was diagnosed with PC 1990, with RP in June of 90 My Gleason score in 1990 was listed as 2+3=5 with extensive perineural invasion. Also listed as stage C, T3.

I was tracked by a oncologist for 10 years with PSA still undetectable. In the 12th year my PSA test was 0.10, PSA gradually elevated until at the 15th year (2005) check it was 0.60. I checked back with my surgeon, who sent me back to my oncologist. At this time I was told I should have salvage radiation treatment.

42 salvage radiation treatments on trilogy machine at OSF St. Francis Medical Center October 19, 2005 to December 13, 2005. PSA dropped to 0.10 after treatment, but now is up to a 2.9 as checked November 8, 2011.

In May 2015 my PSA had risen to 10.33 and I had bone and CT scans which showed that my PC had metastasized in the prostate bed, bladder, and my left ribs.

Since June 2015 I am on Lupron, which has dropped my PSA to 0.1. The Lupron is good, but the side effects has been, and is still much of a problem.

I consider myself blessed in being a 26 year survivor, and most of that time has been symptoms free. I have had a good life, except for the ED and minor other effects.

Now the ED may not be as big a factor.

Wishing you the best and maybe you will surpass my 26 years.

RandyT profile image
RandyT

Good luck with your surgery. I had a radical seven years ago. Three years later a recurrence and IMRT radiation treatments. Now about four years later my Psa is starting up again. Just keep in mind you can deal with any and all side effects. Start doing kegal exercises now and after surgery. That will help after with leaking urine. Don't worry about your erection for a long time. Sometimes it can take a couple of. Years for it to come back. There are things for that too. Everything can be helped. Guys on here will be glad to answer any and all questions. Don't worry. You'll do great. The robotic has a lot faster healing time than the open surgery. take care. Randy

JoelT profile image
JoelT

Dennis,

I am sorry to have to welcome you to the brotherhood of prostate cancer. I am also sorry that you needed to be recruited into the army against prostate cancer because of your own diagnosis, but we always are happy to have another recruit.

I am wondering why you decided to have an open surgery as opposed to a robotic procedure.

Joel

dtr1960 profile image
dtr1960 in reply toJoelT

Honestly, only because after my doctor explained all the different options, their pros and cons, he said it would be his choice if it were him under the same circumstances as me. He was very reassuring with his abilities as a surgeon, citing the thousands of open surgeries he has performed. And if I read my materials correctly, it also provides the surgeon the most unhindered access to the surgical site, which at least to me, would seem to be important when trying to save the nerve bundles.

It's all just a bit surreal still to me, and at times overwhelming....I think for me , the open surgery just represented a "one and done" mentality or approach to getting the cancer out of my body, which is the way I am....I just want to go ahead and get the hard stuff done and out of the way as soon as possible, and the open surgery just seems to be that route....

The Robotic surgery has some advantages in that recovery time would be shorter,but would require me to go to a different facility, with a different doctor,and I'm told is more expensive.....

WillyJ profile image
WillyJ in reply todtr1960

Hi dtr1960, I concluded that radical surgery was what. Would do. My Doc was my son in law. I looked at every thing. He said I would be his 1008 th radical. He said when he gets in , he can see and feel. So he only takes out what is necessary . He stayed away from that bundle of important nerves and didn't have to take any lymph nodes. He caught it soon enough so no chemo was necessary. I was in the hospital over night and had my staples and catheter out in 5 days.

I have no incontinence or inability to have sex.

He is a wisord.

Any questions ? A lot more could be said.

JoelT profile image
JoelT

Undersood, my question wasnt meant to be critical. Understanding all of the pros and cons to these decisions is vital. What is important is that you thoroughly researched all of your options and then made it to scission that is well-informed.

Each of us as an individual needs to make the individual decision that makes the most sense for us. What's important to me may or may not be important to you and Vice a versa.

Good luck, do well and let us know what happens.

Joel

AlanLawrenson profile image
AlanLawrenson

Hi Dennis. I found your post interesting. I had a very similar diagnosis in April 2012. Gleason 3 + 4 with PSA 7.5 with the Ca confined to the box. Mu urologist said prostatectomy. I said no: too many men incontinent and impotent after the surgery. Had 2nd and 3rd opinions: they both said have high dose brachytherapy (needles inserted for a few minutes) followed by 6 weeks EBRT. Ilive in Sydney Australia where brachytherapy (both seeds and needles) are used in about 35% of cases. I decided to go to South Korea for proton beam therapy. Also considered Loma Linda in California. Its expensive, but gave me a great outcome.

I was so impressed that I wrote a book about it. See my web site anabcofprostatecancer.com.au .

I speak extensively about PCa to support groups in Australia and to other senior organisations. Down the track I might accept a few speaking engagements/invitations that I have from USA support groups. See the videos on my web site.

Jonlaco profile image
Jonlaco

Dennis: Yes we are all in this together. Thanks for sharing your story you can read my profile as I am also a prostate cancer warrior. My diagnosis took me by surprise and I to was self-employed, therefore a lot of my decisions were based on my working schedule. I was diagnosed 5/13 and have been fighting ever since that day. Welcome to the brotherhood of advanced prostate cancer.

WillyJ profile image
WillyJ

You sound like me. The same situation at 70 years old. Surgery a snap. Convelesance, no problem. Gleason after surgery, 7. No post surgery incontenance, no ED. It's been 9 years with PSA 0.02. My Doc, son in law, is the best Urologist, surgeon in the mid south area.

If you have a good surgeon, you will be fine.

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