My New Normal

Its crazy how fast life can change. I'm 46 years old and before February of this year always considered myself a normal healthy man. I have always been in good shape and was completely blind sided when I was presented with my diagnosis. I first noticed my symptoms when urinating and bladder not completely emptying. It wasn't that I couldn't hold it and wasn't even getting up at night to go. I just figured I'm not getting any younger. Then I noticed when ejaculating that not much would come out sometimes. I decided to talk to my primary care doctor and he ordered some tests and my life has been a whirl wind since.

After getting my test results of a PSA at 286 I was sent to a urologist and digital exam done and not actually telling much other than being somewhat firm. Biopsy showed 8 samples positive. One with Gleason score of 8 and the other seven Gleason 9. Urologist suggested Lupron shot immediately followed by a month of Casodex. Scans were ordered and lymph node involvement was present. Nothing was showing present in bones.

I was in utter disbelief at everything that was being thrown at me. I did my share of crying and finally one day a came to a realization that what I need to do to win this war isn't going to be found in emotions dwelling on why me and how unfair this is. I needed to take control and learn. When in battle the best leaders always know their enemy.

The biggest problem with prostate cancer at 46 is different in the fact that in younger men there is not as much data out there. After all the average age this disease is diagnosed is 66. It is an older mans disease with most facts based on the outcomes of older men. The adage of you will probably die of something else before the cancer gets doesn't apply here. Unfortunately it is becoming more common but fact based information is hard to find. The other problem is there are not enough of us to even preform clinical trials on to see what possible best outcomes are.

I have been stared on chemotherapy and have one treatment left to go. The side affects haven't been as bad as some of the horror stories I have read about but believe me, they don't get easier as they go on. I have one left to go. In the last few years chemo given early has shown to help outcome. The next step will come after scans are done when chemo treatment is over. At 2 months my PSA was again checked and is down to 3.2 after Lupron and half way through chemo. Its not zero yet but I will take that because its showing that cancer is not growing and PSA heading in right direction.

I have a new normal now and I'm feeling more confident now that I have somewhat of a handle on what is going on. We have to play the cards we are dealt, its up to us to play them or fold. With 3 daughters and a lifetime ahead of me I'm not ready to do that. I have found this to be a great site because its the real guys going through the trials of a very real disease. I have also learned to stay away from some of the forums out there and don't get hung up on figures. I have come to figure out we are individuals when it comes to outcome and treatment but we are together in this fight.

Dayatatime

13 Replies

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  • Yes, cancer is a life-changing event, and it's very scary at first when we're diagnosed.

    And prostate cancer is inflicting younger guys these days, in their forties and fifties--I see more and more on the support sites. I was 64 when diagnosed, with PSA of 744, Gleason 8, and extensive pelvic lymph gland involvement, plus mets to spine and sacrum---with an aggressive form of the disease. I felt doomed, and yet I'm still here, and fighting it, in spite of setbacks and side effects.

    You have a great attitude, and you're right in that we need to "know the enemy."

    And most of us have little, if any, knowledge about prostate cancer until it hits us squarely in the face.

    All of us go through the period of shock and disbelief at first, and we're faced, usually for the first time, with our own mortality.

    I've found the support sites not only helpful, but absolutely essential to me as I go through this journey, not only for info about treatment options, but also for emotional support. We're not alone in this.

    Nowadays, there are new treatments coming out which show great promise, like the immunotherapies.

    CERICWIN

  • Thanks for the words of encouragement CERICWIN. I didn't even know what function the prostate served before any of this, so yeah I agree how uneducated we are until faced with it. It certainly is a sobering experience when handed to you. I feel the world isn't educated nearly enough about this disease.

    I am finding more and more there are plenty of ways to educate yourself on this. It is men like you helping any way they can to pull us in from the grips of this and help us deal with it, not panic. A big thank you for reaching out to all that you have.

    Cheers to the promise of what may be coming.

    Dayatatime

  • Welcome to the group. While I am sorry that you are able to join it, there are a lot of GREAT members here that can give you information. I am so sorry that you joined our club so young.

    I just turned 59 last week and I am a little over seven weeks post Da Vinci surgery. Turns out that I had a rare type of ductal cancer that does not raise your PSA. I opted for surgery even though it had spread to the nearby lymph nodes (T3N1M0). I had to sweet talk the surgeon to operate as it is still the norm not to in advanced cases. Have started hormonal and will start radiation as soon as I regain bladder control. They wanted to put me on Chemo but decided not to start. Little is known about ductal cancer but that itdoes not respond well to Chemo.

    I was feeling very sorry for myself. After all, I was only 58 when they found it. That changed when the son of a neighbor who was 46, was diagnosed with advanced prostate cancer. (Ended up we both had surgery on the same day.). That made me think. None of us wants to be here. But at the same time, I am so thankful that I am still here. Even with people with advanced cancer, they are coming up with in the months and years ahead. To be a bit Pollyanna about it, my cancer has made me appreciate those I love even more.

    Please know that people around the world are pulling for you!

  • Hi Dr_WHO

    I have to admit there is an irony to what cancer does to a persons soul. For all the terrible, it does make a guy change. I find myself not being bothered by the small things as much anymore, there is nothing that is worth being that pissed off about. Cancer gives will and determination.

    My father always said "you cant judge a man until you walk a mile in his shoes." Nothing beats out experience and even the best doctor, other than a few haven't walked this road. Only treated it. You and many others have walked those miles and thanks for sharing your experience. Input from guys that are there is the best information anyone could have. Thanks.

    Dayatatime

  • Hey Day,

    Sorry for your predicament, but you should have many years to come. I was diagnosed at 50, stage 4, lymph nodes involved. No surgery, just radiation and ADT.

    I'm now 57, and my psa is beginning to creep up. It was well controlled for six years, with my psa around 1-2. When I talk about my disease, I tell folks that it's not the disease that's killing me, it's the side effects of the meds. That said, each of us responds differently to hormone suppression. I was able to work for the first few years, now I'm on disability. I had/have all the side effects, got fat, grew tits, lost all muscle mass, no sex, hot flashes, etc .etc. etc.

    I know exactly how I'm getting through it, I have a great attitude. I know the shits gonna get me, but not without a fight. A positive attitude is imperative.

    Keep the faith, bro

    Joe

  • Nice meeting you Joe

    It took me a bit but I did turn my attitude around. Don't get me wrong, this is still scary as hell but I feel like I have taken some control back. I absolutely cant stand what the hormone treatments are doing to me. The thought of being on these the rest of my life sucks. The effects of what they can do to me is almost a horrible disease in itself. Again its not like we are 70 and losing out, we will barely be 70 in 20 years. I tell myself its better than the alternative.

    Its only been since February so right now I'm still adjusting. Anxious to get done with chemo and move on from there. My legs feel like lead and want my energy back. I have been working through this and hoping to continue. It actually helps me keep my head clear.

    Attitude is everything. Cancer started to take from me and I drew the line and its time to swing back. Nothing worth anything comes easy.

    Take Care Joe,

    Dayatatime

  • I too was diagnosed at 50 years and I am now 65 and still consider my self healthy despite metastatic prostate cancer as well as four other, unrelated cancers.

    You said that you have only one additional treatment left, does that mean that you have had Zytiga, Xtandi, Jevtana, Docetaxel and a PARP inhibitor?

    What does your docs say about next steps?

    Have you had a second or third opinion with a medical oncologist (not a urologist)?

    Joel

  • Hi Joel,

    You my friend are an inspiration and thank you for taking the time to follow up. This is a confusing road (could even say chess match) to be thrown into.

    My oncologist wanted to do the 6 treatments of Docetaxel over an eighteen week period. My last session is June 22 and when starting treatments didn't think were to bad. Around treatment 3 my muscles felt heavy, especially in the legs. I was running and exercising up until the last treatment but I was literally tripping over my feet. The Neulasta shot I am given the day after treatment to up white cell count feels as bad as the chemo effect. Thankfully that only last a few days.

    My oncologist is a general onc, young and admits that she is new to the prostate cancer game however she does consult with her superiors before suggesting treatments. They have been performing as a group before any decisions are made. My urologist is recommending radiation as the next step. I have told both of them that I want to be considered for a prostate surgery as the newest results show a better long term outcome. They both seem to be somewhat under the old school train of thought. Honestly I don't know what my next move should be. The scans did show a small tumor on my prostate and urologist thought this may be tricky if taken out.

    I know radiology has advanced but my fear is the limitations that it may put on me for future treatments. I am reading more and more of prostate out even with bone mets. On the other side of that I am reading on the over treatment of prostate cancer with lymph node involvement which seems to be looked at more in the European studies. It truly is a confusing path and a scary one with the different treatments and styles of the drs that a person may encounter. I did tell both my oncologist and urologist I would feel better waiting on results of the next scans and go from there. He wanted to start Casodex with Lupron also and I asked him if its not needed why? The side effects from the Lupron alone are harsh enough. I said if needed I will but for now lets see how I react to chemo and Lupron. Besides, the Casodex may be needed down the road. You do have to be your own advocate and knowledge is huge in this game. You guys are a wealth of it.

    I have not had another opinion on either level. I was going to wait until chemo done and current test results were back. Urologist also suggested Provenge and I have not really read much about that sounding that promising. Maybe due to it being a fairly new treatment. Again confused.

    Dayatatime

  • Your not alone, I was diagnosed in 2002 at age 43. I had surgery, radiation and my PSA was stable for 10 years. In 2012 my PSA rapidly increased and I had a lymph node dissection. Failed Lupron, Zytga and Xtandi over the past 4 years. I now have CRPC and started a clinical trial at NIH with chemo and cabozantinib. Like you I have always been healthy and active, just got dealt a crappy hand! Just keep positive and enjoy life.

  • Day,

    First, having the 6 chemotherapy infusions at this time is the correct treatment protocol for you, along with ADT (hormone therapy). Are you also on ADT?

    I am a very firm believer in 2nd and third opinions. If you are in a location that would allow you to access a major academic medical facility you should and don't wait. Then, when you find out where your PSA has landed with the chemotherapy and ADT you could go back to the 2nd opinion doctor, or just send the test result along with a follow up phone conversation.

    As far as the question about surgery or radiation, I don't understand what the urologist's concern with surgery is, but urologists are surgeons and like most always want to cut us open. So, I think that the concern about moving ahead with surgery needs to be better understood before you make a decision. Push the urologist to explain to you exactly what the concern is and why your case is different from other patients who seek surgery.

    You need to always remember that, based upon your numbers you have very aggressive disease and need to always be very aggressive in your responses. In my mind there is no question that the cancer has left the gland. Did you have any scans and what was seen by the scans?

    Get back to us.

    Joel

  • Joel,

    Yes on ADT, 6 month shot of Lupron and did 30 day Casodex immediately when Lupron shot was given.

    CT and MRI scans. Pelvic lymph node involvement and a locally advanced disease. Small tumor showing on prostate. Nothing showing in bone scan.

  • OK, good. BTW they should have given you Casodex at least 10 days prior to the Lupron shot to prevent a PSA flare, but don't worry about it at this point. When are you scheduled to return t the doctor. I am hoping that they will see you every 3 months and not every 6 months (given that they gave you a 6 month shot which is OK, but unusual). Also, have your testosterone monitored along with your PSA to be sure that you do become castrate.

    Get copies of all your tests, scans, blood work etc. and read them and ask questions of the docs. You can also brig back questions to us.

    There is some evidence that going after the lymph nodes could be a productive idea. This could be done with either radiation or with surgery once the nodes have been identified . This would require more sensitive scans, the easiest to get is at the Mayo Clinic ( mayoclinic.org/tests-proced... ).

    Again, clarify why the urologist is hesitant removing the prostate gland because at the same time as the prostatectomy they could do an extended lymph node removal. Again, get a second opinion.

    Joel

  • Dayatatime: You have a great attitude and a lot of courage and fortitude. When I was diagnosed I freaked out for a moment, mostly because where I live (Hawaii) there are not lots of options for second and third opinions on treatment. My instinct told me to reach for the best. Within a week or two of my biopsy I was in California seeking expert care and determining what path my long journey would take. I suggest you find an oncologist that specializes in Prostate Cancer, there are some in private practice but most are in the larger teaching hospitals. If you have to travel a bit to get good advice, do it. Find the experts you are most comfortable with. I still live in Hawaii but fly back to the mainland for my treatment and care when needed and consult on the phone and email. Be Well.

    Peter K.

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