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Prostate Cancer under 50 years old

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Posted 2/5/2018 4:00 PM (GMT -5)
Scott,

My husband was diagnosed in 2014 (age 55 at the time). Like you, we were assured that it was contained, intermediate risk (GS 7) and that surgery would most likely be the cure. Post surgical pathology was a nightmare...Positive margins, SV positive, bladder neck positive, one lymph node positive, and Gleason upgraded to 9. He also had persistent PSA (never below 10), which rose rapidly.

It's now been just over 3 years since his failed surgery. At this point, he still has no detectable mets, either in the bones or organs. He still lives the same active life he led prior to diagnosis. He works everyday. He fishes, he tinkers with cars and boats in the back yard. He plays with the grandkids. I tell you all that to say this: there are lots of treatments and you most likely have lots of time! It's scary for sure, for both you and your family. But there are so may treatment options, with more in the pipeline. The best thing you can do is educate yourself. (It sounds like your wife is already working on that.) This is a good place to start. So many of these awesome men have already walked where you are and are willing to share their stories with you.

Donna.
Posted Yesterday 1:41 PM (GMT -5)
Scott,

My condition is not relevant to yours. But the condition my father had is relevant. Diagnosed in 1981 and was scheduled at first to have seeds at MSK but was found to be too advanced with a spread to the bones.

It was not always easy but he had another 8 mostly good yrs and got to see children married and got to be a grandfather. And my siblings and I had our father and my mom had her husband for that time. And that was 35 yrs ago and there have to have been advances made in that time.

So fight this and don't deprive yourself or others of your time.

Best of luck,
Posted 2/9/2018 2:17 PM (GMT -5)
Unfortunately the cancer has gone in my blood and showing in bone marrow. We were told radiation is not an option and Lupron is only a loosely fitted lid on a huge bottle. It is doubling every 4 months and there is nothing they can do. I was told it is terminal. I read on the side affects of Lupron and just cannot go through with it. Not for a mere chance at more time with all the side affects. I currently only suffer issues related to the surgery so I have chosen to enjoy life and wait for it to do it's thing. If it gets advanced enough we may do radiation at that time, but since the cancer is extremely aggressive the doctor wants me to seriously consider quality over treatment. I have been told by 2 different oncologist that the cancer I have is very rare to be this aggressive. That I am looking at possibly a year or so without the cancer interrupting my life so I plan to enjoy it. Not suffer through it.
Posted 2/9/2018 3:08 PM (GMT -5)
Scott—
It sounds to me like the immediate shock and depression that followed the bad news may be coloring your report of what the doctors told you and making it even bleaker. Most of what you describe is typical of Stage IV PCa — bone mets, Lupron alone won’t cut it, treatment is palliative, not curative. You know that many members of this forum have aggressive metastatic PCa and have undergone treatment that has given them many more years of active, useful, enjoyable life. I can’t help wondering if your PCa is really that much more advanced and aggressive than theirs.
Did the doctors discuss chemo with you? Zytiga? Xtandi?
Tell us more.
Posted 2/9/2018 3:44 PM (GMT -5)
Scottomus-

It sucks that you have metastatic disease, but many men live a long time with that diagnosis (Todd, for example0. When you say "the cancer I have is very rare," what exactly do they mean? Was there an analysis of your bone mets that was done? There are many clinical trials.

Hormone therapy actually improves the quality of life of men with metastatic disease by alleviating pain, providing for better urination, and preventing bone fractures. Weighed against loss of libido and hot flashes, most men would take that trade off.
Posted 2/9/2018 4:35 PM (GMT -5)
The doctor told me that the growth rate of my cancer is extremely aggressive. Already 7.6 and 3 weeks ago it was 6.4, 3 weeks prior 5.8 3 weeks prior 5.2. He said we could speak with a chemo oncologist but he didn't believe they could help. I am very worried about the side affects of Lupron due to my issues with my spine to begin with. I have broken my back and neck and have hardware. Suffer severe nerve damage. The Lupron is expected to make this much worse. I have had the RP but have no control over my bladder and everything else down there is already paralyzed due to the extent of the cancer and what they had to do to remove it. It is expected to not improve. I had necrosis in my urethra and that had to be removed and the cancer had encroached on my nerves resulting in complete ed. My bladder is too thick to expand allowing me to hold any urine. Radiation is not an option because the changes in my bone marrow are found everywhere. These changes were not there oct 31 and now show. They believe I show signs of it in my esophagus as well but they want to recheck in 3 months. I read all the side affects of the Lupron and with everything else turning out bad I believe this will too. I talked to him about several other options I read about and trials but it seemed to fall on deaf ears. I actually researched trials and signed up for several only to be turned down. the doctor told me we couldn't do Zytiga? Xtandi? until I have tried Lupron first. It's generally used when Lupron fails or in combination. He said he has had several cases just like mine and unfortunately it all has a poor prognoses. that hormones usually don't have an affect on cancers that grow this quickly.
Posted 2/9/2018 4:51 PM (GMT -5)
Scott, I may have missed it, but have you met with a Medical Oncologist? Chemo treats the entire system, including the bones. My husband's bone mets nearly vanished after his 6 doses of Taxotere combined with the Lupron and Zytiga and predisone. The side effects are different for everyone. A medical oncologist can give you the Lupron/Zytiga which makes it easier. Doctors also thought husband's cancer was going to be very aggressive and were very surprised at how well he's done. We love proving them wrong! LOL

Best of luck and we're all here for you!
Posted 2/9/2018 4:52 PM (GMT -5)
Scott,

It is very sad to read of how your disease is progressing. You have been handed more than your share of bad news.

My advice is to make a decision on your future based on what will give you the best quality of life. You can fight the disease, or live with it. Either way, only you know what's best for you.

Good luck and continue to believe in yourself.
Posted 2/9/2018 5:06 PM (GMT -5)
Scott, thank you for sharing the details. It helps us appreciate how you’re feeling and makes it easier to perhaps give useful advice, which I’ll leave to others like Union98 who have been in your shoes. Best wishes to you, my friend.
Posted 2/9/2018 5:54 PM (GMT -5)
Scott, I noticed your first urologist was in Conway, Ar. I am in Jonesboro and was having about the same luck with doctors here. I am presently going to UAMS Cancer Center in Little Rock. I am not at the level you are in this fight, but they seem to be up on prostate cancer, and if I don't get results I want there I will go to MD Anderson which is a world class center and not that far of a drive for either of us..
Wishing you the best
Posted 2/9/2018 8:49 PM (GMT -5)
Scott,

You are giving up too quickly. I would advice you to stay on this site and get a list of the best physicians close to where you live and consult them. We have members here with worse numbers and pathology than you have and are still going strong after 10 years. New treatments advancements are occurring on a regular basis. Many of the drugs used now were not available 5 years ago.

I am a hospital pharmacist that has extensive experience with working with physicians. The differences in their expertise and knowledge is astonishing. I do not think the 2 physicians you talked to did you any favors. Be willing to get 2nd opinions from physicians that are regarded among the best. We only have one life and it is worth fighting for. I will send a few prayers your way.

Paul
Posted 2/9/2018 9:18 PM (GMT -5)
Scott please read the thread about small cell prostate cancer it may help with some questions you have

Larry
Posted 2/9/2018 10:14 PM (GMT -5)
Scott...

Please hear me clearly. Any doctor that's telling you that you are a rare case is full of fear and hasn't seen much of the world.

When my PSA gets rolling it doubles every three weeks... Yours is going to take almost a year to double. That's slow! I Your PSA is still single digits,there are many here who have hit 100x that and still with us.

The Lupron and chemo and other battles we fight aren't child's play, they're a beetch. But the side effects are much better than the disease, we can live work and survive, and there's potential for relief (I've been off adt for a year).

There are doctors out there who get this and those who are still living in the past. Get yourself a better doctor. I it was my third doctor who finally got me straight.

I would imagine if you think about it deeply, that you really don't want to put your loved ones through the pain of final stages of this horrible cancer. Especially when you still have so many options for arresting and disrupting its spread. And the potential for curative treatment in the future.

I'm a bit of a curmudgeon, but I care deeply about this fight and wish you well.
Posted 2/9/2018 11:23 PM (GMT -5)
Scott, I can only imagine how you feel after hearing your doctors "prognosis". What everyone else said above, is correct.
you are 47 years old, you have grandkids, you have a lot to live for. I don't know how any doctor can tell you hormone therapy won't help you, you have aggressive cancer, you are terminal, blah blah blah. They are all idiots. We have many guys here living good lives for many years, with Gleason 9, and with HT keeping their cancer in check for long periods of time.

Please don't sell yourself short. Fight for yourself and fir your family.
I don't know what else to say. It pains me to see someone as young as you, not doing everything possible to prolong life and quality time with family.
Posted 2/10/2018 2:23 AM (GMT -5)
Scott, PLEASE get your butt to MD Anderson in Houston ASAP.

You have lots of options and a good future is still there for the taking. The medical advise you’ve been given is a pile of horse manure, and you deserve those EXPERTS in Houston to be working for you.

While you have been dealt a tough hand, it’s way to early to give up. I’m praying for you!
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