CONFUSED: 56 yr old just found out I... - Prostate Cancer N...

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CONFUSED

Number1gland
Number1gland

56 yr old just found out I have pc. PSA is 26 & all 12 samples taken from prostate had cancer in them. Go back in a few days for tests to see if it has spread. What's going on? I never had any symptoms of it. In good health and never been on any medications. I actual feel pretty good for someone who hasn't taken care of them self. That is until I hear this. Could the Cleveland Clinic be wrong? I never have had any preventive check ups and I am 56 now so I went to a doctor just to check my health. That is after I found a Dr. Hadn't been to a doctor for anything in 10 years so I didn't have a pcp. I only went to the clinic after I heard these results because with my own research I found them to have one of the best urology departments in the country if not the world. The PSA was the same as the doctors I first went too. That's when they did the biopsy and told me this. I have now been waiting for almost 2 weeks to go back for a cat scan and bone test but that's only because that's the soonest they could get me in and do everything in 1 day. It's a 4 hour one way trip is why I wanted it all done in one day but I didn't realize how hard this wait was going to be. I'm dying here just waiting to find out if I'm dying. I'm hoping it progresses slower than I hear.

8/2/18 .I got my cat scan & bone scan done. I have cancer that has spread to a couple of close by lymph nodes but not my bones. Pretty much said hormone therapy was my route at this time. The clinic is setting me up with an oncologist closer to my home to discuss what I can do next. Well, it has turned out worse than I could of ever imaged. When do I start to feel any symptoms of this? I wasn't ready with all my questions after I was told so I really don't know what the fuck is going on.

22 Replies
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Sorry to hear about your diagnosis and in my experience, you will get plenty of help here. I also encourage you to find a local prostate cancer support group - I find them extremely beneficial. You are already doing research which is good. I was also recently diagnosed, so others on this forum will have more experienced perspectives. What I found is that I need to achieve a balance between doing research, getting additional tests, etc., and my inclination to get PCa treated as soon as possible. One thing that has helped me is finding a medical oncologist (one who can specialize in PCa) to help coordinate, navigate, and be a sounding board. Urologists and radiation oncologists train appropriately for their specialties (surgery, radiology) whereas a med onc is trained to diagnose/treat cancer. For me, determining as much as I can about the cancer that I have has been instrumental. Best of luck and I wish you good health.

Thanks for your input. I guess I got excited and thought I was going to learn everything about it in a night. I now see that isn't going to happen. I'm still doing a little research but I'm going to take it easy and see how my test results come back Thursday and go from there. Thanks again and I hope all goes well for you.

Number1gland,

I agree with Kurt65, take it slow and find someone (urologist or oncologist) you trust that you are confident in... I was diagnosed at 54 (now 68). Had radiation and so far nothing else...8 weeks of radiation. Let the Docs do their tests to see what needs to be done, and be patient. You have many options!

Peace,

Bill

jackcop
jackcop
in reply to billy1950

I am also recently diagnosed with PC. (March, 2018). My urologist told me that if I have radiation then I cannot have robotic surgery. I get different responses from different people. Can you help me with this, in opinion, important question?

jackcop
jackcop
in reply to jackcop

I simply hate that at 68 years old, I have to worry about PC.

billy1950
billy1950
in reply to jackcop

jackcop,

As far as I understand, once you get radiation, any kind of "surgery", robotic or RP, etc. would not be an option If there is a recurrence, since removal of the prostate would be very difficult, if not impossible! There may be some hospitals where this can happen. However, i have not heard about who or where they are ...

I was very confident with my oncologist at that time 13 years ago. I also talked to a lot of guys who had undergone different options. It seemed to be the best choice for me.

At some point one option at this point would be hormone therapy if it recurs. My PSA has been around 1 for years. If the PSA is doubled or increases, then my doctors will consider what options could be done. However, yes, surgery is out of the picture in my situation as far as I understand.

68 is difficult but I was 54 when diagnosed...you have a long journey ahead...be patient. Worrying will only be an energy drain. Try to keep positive! Stay healthy...I have kept up my exercise routine ( swimming 3xtimes weekly) throughout.

Bill

jackcop
jackcop
in reply to billy1950

Thanks, billy

gamma909
gamma909
in reply to jackcop

In addition to Bill's comments, you may want to focus primarily on your first treatment decision and not be overly influenced by salvage therapy. This is not to say that it isn't a consideration, but a lot can happen by the time recurrence would take place. The other factor that clouds the issue is that if there is a recurrence, there is a reasonable chance that the PCa cells have moved outside of the prostate so any salvage therapy focused on the prostate would not provide a "cure". FYI - My comments are based on reading and various oncologist discussions rather than direct experience with salvage therapy.

Uxp_d
Uxp_d
in reply to jackcop

I was diagnosed at 68 I have had Radiotherapy, and it failed I have then tried HIFU and it failed, but still around at 78,and yes I thought one can have surgery ,but found out you can`t ,the choice is always yours, I`m afraid, most of my friends have had Radiotherapy and it`s worked !

Thanks Billy. I'm really a laid back kind of guy and don't get excited about much but, when I heard the word cancer I lost it. I don't want to wish my time away but I wish I could fast forward to Thursday to get these tests done. Again thanks for your advice.

Take a deep breath. Try to stay in the moment and not let your mind race ahead. You likely have options which will be explained to you. This is not the end of the world. Four options that I know of are surgery, seeds, radiation and cyber knife. Depending on your age (you are young) you can make a choice. I was 65 so I chose the robotic radical prostatectomy. You may choose another option. There is a doctor at Florida Hospital in Orlando named V. Patel who has done almost 10000 of these surgeries. That's where I went. You may decide something else. Another thing I did was talk to men who had been through the process. Many of them will tell you they have had one or another form of treatment and they did so 20 years ago. You still have a lot of life ahead of you. It is so easy to let your mind race ahead, but easy does it.

Thanks for your calming words Trivista. Looking back I'm sure I sounded like a cry baby which is a little unusual because I'm normally a laid back kind of guy. I'm just going to half to wait to do the CT & Bone scan Thursday and see what the results are. Then I will start looking into my options. Once again thanks for your calming words.

Hidden
Hidden

Hi, Number1gland sorry that you are having to deal with this. These online sites are good and Kurt and others will be great to bounce things off of as you start your journey. We are all mortal so don't spend your time worrying. I would research and do as much as possible at home and at work. I got my diagnosis in Feb of this year. Although I am 68 I thought I was way too young since my dad didn't get it until 78. Try to communicate with the Cleveland Clinic online through their patient portal. You can access test results and message your doctor and follow-up with phone calls. I have found communication to be most important. As Kurt advised get other input from PC treatment specialists. There are a ton of good books out there. I liked Mark Schultz Key to Prostate Cancer. You will have a lot of treatment options, so don't jump into surgery without getting all the testing done. If it has escaped outside of the prostate surgery might not be useful. You might also want a second opinion on your pathology interpretation from John Hopkins. It is covered by most insurance or cost $250 pathology.jhu.edu/departmen... Your Gleason Score combined with your PSA and comprehensive test results including some genetic testing will provide you with the information you need to make a good treatment choice. The genetic test can be done from your biopsy and your urologist might have a preference in tests. I had a PTen and was negative and a Prolaris witha 3.5 score which was consistent with my intermediate PC. Here is a short read on Genetics of Prostate Cancer cancer.gov/types/prostate/h... I will paste below what I have done so far and the test results and my treatment choices. The Cleveland Clinic will also have clinical trials that you might want to look at. Take your time and continue to enjoy life. Good Luck!

68 years, a runner in good health, 12.7 PSA May 18, 13.7 Feb 18, 3+4 confirmed by John Hopkins & UNM Cancer, 4+3=7 MD Anderson Proton Center, Finasteride 5mg 15 years. TURP 2003, neurogenic bladder and intermittent cath. use. T3 MRI discovered a1.8 Lesion left side which was contained, a clean bone scan. colonoscopy prior to radiation treatment on July 26, 18. Started 6 months on Lupron May 21, 18. I will start Rapid-Arc Radiotherapy Technology a form of IMRT in September. I was accepted for a phase 3 clinical trial with ProstAtak® an immunotherapy in combination with radiation therapy for patients with intermediate-high risk localized prostate cancer. I had considered Proton treatment at MD Anderson, but I wanted to participate in the trial and hopefully reduce the chance of reoccurrence so I will get 39 zaps of radiation closer to home.

Number1gland
Number1gland
in reply to Hidden

Thanks awinnegar for all your input. I know I got excited when I heard the word C, I always thought that when you hear that you don't have that much time. I've calmed down over these last couple of days after reading a little bit more about it.

At first I was just surprised how calm everyone seemed to be on here. I'm usually a laid back kind of guy. I'll just have to wait and see where I am after these test on Thursday.

I haven't really talked to anybody yet. My first visit I was told my prostate was a little enlarged but that's normal as one gets older. I took a urine test also and got a phone call a day later informing me that my psa was 26 and we need to set up a biopsy. I got my biopsy a week later and a phone call 3 days later with the results.

Never really was told anything about what a biopsy was or how it is performed until I was there to get it done. Over the phone I was told I do have pc with a Gleason score of 7 and it wasn't the aggressive type but we need to get you back here to do a CT & bone scan. That's about all I know.

After going through quite a few of these post and reading the responses I'm beginning to wonder if I chose the right place to have all this done. I thought I knew what I was doing when I decided the clinic offered the best care in my area. It's still a 4 hour one way trip but I thought it was the best that I could make it too. Now I'm not so sure. Sometimes I think I read more into things and this has only made this worse for me.

Anyway thanks for sharing your journey and the name of a possible surgeon with me and I'm hopeful my results will be along the same lines as yours.

Thanks for all the feed back. I know I probably sounded like a drama queen. I think a lot of it is because I have been doing some research and don't like what I am finding out if it has spread already. I've been trying to keep busy so my mind isn't wondering so much though. And I am going to have to find somewhere closer to home if/when I do start treatment. I've been making a list of things to ask the Dr. with questions leaning more towards the worst case scenario while still hoping for the best after my 2 tests are done Thursday. It kind of sucks thinking nobody knows enough about pc and can only say what helps you might not help me. I like to gamble but it all sounds like a big crap shoot I'm forced to join. All be it this isn't for money, it's for my life. I feel like I've been told, Let the Games Begin or Gentlemen Start Your Engine's. I Knew a man that passed away from pc about 11 months ago. I met him through a mutual friend and only knew him a few months before he moved to be closer to his kids to die. Before he passed I did see a picture of him with a cast on his arm. I also remember him saying how he would wake up at night with so much pain in his lymph nodes. (I'm just finding out they are located through out your body) I never did find out all the specifics before he reached the stage he was in but I do remember him telling everybody he saw to get a psa test every year after you hit 50. He did say his dad also died from pc. Mine didn't. Mine just passed away about a year and a half ago at the age of 91. He was 58 when he passed away and I don't know how long he had been fighting it. Now I feel like I'm in his shoes heading down the same path. It is scary and I hope you all will put up with me because I'm pretty much alone and don't have anyone to confide in. I guess I shouldn't say that. I have a friend but it's a woman and not my wife or girlfriend and don't think she would really understand what I think I'm getting ready to begin. I still don't understand what's going on with me and can't expect her too.

Anyway, thanks again for all the support and advice you all have given me. I'll be reporting back with my findings on each step of this journey and look forward to hearing any feed back you all might have. And jackcop I have heard the same thing but I still haven't made it to my final prognosis yet but will let you know as soon as I hear it from a doctor.

Sorry this is so long. I got so much more to ask and hear but I'll try and break it down a little more with more but shorter comments. Any feed back I receive will be greatly appreciated. Thanks!

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Could the Cleveland Clinic be wrong?

<<<

Very unlikely, in this case. Early-stage prostate cancer usually has no symptoms, so there's no indication that you have it -- until you see your PSA test results.

A biopsy is easy to get a _little bit_ wrong, but hard to get _really_ wrong.

It would be good to know your Gleason score. That's one of the things that controls how you treat it, and what you can expect in the future.

>>>

I like to gamble but it all sounds like a big crap shoot I'm forced to join.

<<<

That's exactly right ! I like to put it this way:

. . . . You don't know the exact odds;

. . . . . The stakes are high;

. . . . . . You can't say "I won't play!".

By doing a careful workup, and picking a "most-likely-to-work" treatment, and picking (or lucking-out) on a good surgeon or radiologist, you can shift the odds of success in your favor:

. . . But you can't eliminate the uncertainty.

You have _one_ chance to pick a "primary treatment". Take your time, and do some research.

Stay in touch -- there's a lot to learn . . .

. Charles

Thanks for telling me like it is. I guess I just need to stay calm, go get the CT & Bone scan Thursday and see what the results are. Then start going through all my options. Thanks again for your reply.

Hey Supporters,

I got something else I didn't mention. The first time I went to the Dr. that had me do the psa test I told him I felt something in my groin. It doesn't hurt. I just feel something in there. He told me it was a hernia. Now this was before I got the results from the PSA test.

I have never had a hernia so I don't know what they feel like but I thought they would stick out. Do they? I just got a bad feeling this is something more than a hernia.

I go Thursday to take an MRI and Bone Scan and was just curious what a hernia will look like on the MRI. If it is a hernia will it look different than if it is cancer? Will they know the difference or do they have to open me to find out? Don't mean to sound like a wussy it's just I have know people that once they opened them up it wasn't long before they were gone.

I think everyone is right when they say most people with PC will die of something else before PC kills them. Can anxiety kill you? Because physically I feel fine but emotionally not so much.

>>>

I think everyone is right when they say most people with PC will die of something else before PC kills them. Can anxiety kill you? Because physically I feel fine but emotionally not so much.

<<<

_Most_ prostate cancers don't kill their hosts -- but the nasty ones _do_ kill their hosts. You're never completely sure which group you're in. Low-Gleason-score cancers tend to grow slowly, and respond to treatment. High-Gleason-score cancers tend to grow faster, and are harder to treat, and those can and do kill people.

. . . So all of us live in uncertainty.

You sort-of get used to it, after a while. Nothing you're feeling (or thinking) is unusual, in this community.

I think that "anxiety" might have some effect on cancer, but I think it's not very large. The cells in the tumor have mutated -- that's what cells do -- and _some_ of those mutations are cancerous. Maybe, over the years, some stress hormone might have increased the mutation rate somewhat.

But I led a fairly low-stress life, ate an ovo-lacto-vegetarian diet rich in vegetables, got a fair bit of exercise -- and I developed PCa.

I also think that saying "anxiety causes cancer" is a very nasty, subtle way of "blaming the victim". It's equivalent to saying:

. . . "You did this to yourself, dummy!"

And I'm pretty sure that's factually wrong, and psychologically destructive.

. Charles

Thanks again Charles. I think I'm still in shock. When I heard the C word I went and looked through my family history both on my moms side and my dads side and talked to relatives that are still around and I couldn't find anybody in my family that has ever died of any type of cancer. Heart disease runs in my family. My dad died at 91 and I don't recall him ever mentioning anything about prostate cancer. I know I just have to suck it up and accept it now so I can move on to treatments now. Thanks for being a straight shooter with me.

I have a relative who was diagnosed with cancer, and said:

. . . "That's not right. I'm supposed to die of heart disease!"

There is _some_ family-genes propensity to get PCa, but it's not huge. Lots of men get it, who don't have a family history of cancer.

. Charles

Completed my bone scan & Cat scan today. The good news is it's not in my bones, The bad news is it has spread to a couple of nearby lymph nodes. Pretty much said hormone therapy was about my only option. They are setting me up with an oncologist closer to my house for me to go see to discuss my options more.

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