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39 years old diagnosed today

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Posted 6/21/2017 10:01 PM (GMT 0)
Hello from Michigan. I've been lurking here for a bit trying to educate myself. Just wanted to post since I'll be here now as a club member. I'm a little scared but relieved to finally have results. Honestly I'm mostly feeling angry about having this at my age. I have two young children. Hoping for the best.

Anyway, I'm guessing they will want me to have surgery. Will I need scans or other tests to see if spread before they do surgery or is it kind of automatic at my age to just take it out and scan later?
Thanks. Looking forward to getting help, helping others.

Age at dx: 39 (40 later this month)
5/2016 PSA 5.02
6/2017 PSA 5.1
Biopsy(UofM): 6/2017 4 of 12 all left side (3+3)(3+4)(3+4)(3+4)
Waiting to discuss/schedule treatment with docs at UofM
Posted 6/21/2017 10:33 PM (GMT 0)
Sorry that you have to be here Frostypro. Your feeling of why it's happening to you at such a young age is very understandable. It sucks, but cancer can be caused by a totally random event, more so than enviromnetal factors and genetics, so there's really nothing that you can do.

You can do a whole lot when it comes to treatment however! Take your time and do your homework. Although younger guys like you have better recovery from surgery than older men, I don't know if I would jump to that solution in your case. You're low to low-intermediate risk, so there are other options out there. Read the sticky at the top of the forum and follow the advise giving therein. I'm sure more experienced members will chime in shortly. I wish you strength in your journey.
Posted 6/21/2017 10:33 PM (GMT 0)
Sorry to hear about your diagnosis, especially at your age. You came to the right place for additional information and insight. Your statistics are somewhat like mine. You have several different options including surgery, external radiation or brachytherapy (internal radioactive seeds.) All of which can be curative. You have some time before making a decision, but I wouldn't wait any more than 6 months. Knowledge is your best friend right now, study up on the different treatments and their side effects. A good fairly rounded book is Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer", he is a urologist (surgeon) so he does side with surgical treatment. Out of the seven books on prostate cancer I find this is the best all around book.
Posted 6/21/2017 10:44 PM (GMT 0)
Welcome to HW

Surgery is the normal recommendation, but it's not your only option. You should also talk to a RO.

Scans at this point likely won't show much interesting, but may be useful to establish a baseline.

and I wouldn't worry too much, with your numbers you have every chance of being in the curable zone.

Andrew
Posted 6/21/2017 11:10 PM (GMT 0)
Hi Frostypro..... Welcome to the most informative site of its kind on the net. It is without a doubt unfortunate that u should need to be here, particularly at ur age. I responded primarily for one reason, other than to welcome u. I was diagnosed in January and my immediate thought was to get this thing out of me right now. I actually was scheduled for surgery and prior to that occurring, found Healing Well. I am thankful to all the folks on this site for beginning my educational journey and making me aware of how important knowledge of the various options for treatment actually are. I met with a radiation oncologist right after being scheduled for surgery but my mind was already totally committed to surgery so I just yessed and nodded my way through that. My diagnosis is low intermediate risk. Because of the people here, I came to my senses and took the time that this relatively slow growing cancer allows and dove into the entire realm of prostate cancer treatment and particularly how each treatment compares in cure rate and the quality of life issues that are a part of each treatment. What I chose is right for me but take it from a compatriot in this fight that no one chooses. Do this for yourself and your family. Study, study, study. Read this forum and all the recommended books. It won't be long before you will get all kinds of good suggestions from the very knowledgeable people here. Then, and only then, will you be able to make an informed decision about how to proceed that is right for you and your family. Putting on the brakes was the best decision of my life. I now know what's best for me and I'm following that path. You can do the same. All treatments have their strengths and weaknesses, You need to make the best choice that applies to you and your circumstances, whatever that might be. I hate this disease but I'm totally at peace with my decision and what I'm doing. Believe me, you will be glad you put the brakes on the process until you truly feel you can make that most personal of all decisions. I wish you the best.
Posted 6/21/2017 11:16 PM (GMT 0)
Frosty, welcome, it truly stinks to see a guy your age show up here.
You got great advice here, your job now is to educate yourself bout the treatment options available to you.

You said "I'm guessing they will want me to have surgery" . That's a good option. But it's not about what "they" want. It's about what YOU want, and you'll only be able to figure that out by researching and understanding the pros and cons on each treatment, time to start learning, and getting into fight mode.
Posted 6/21/2017 11:42 PM (GMT 0)
Frostypro-

Welcome to our sorry club. It sucks getting diagnosed at such a young age.

First thing to do is get a very special pairs of eyes to give a second look at your biopsy slides. Epstein's lab at Johns Hopkins is the best for a second opinion.

If confirmed, you have lots of options, all with about equal and excellent chances of success: surgery, SBRT, HDR brachytherapy, and LDR brachytherapy. You'll have to seek out experts in each. U of M is a great starting point - a lot of excellent specialists there.

You have time. You have a kind of prostate cancer called "favorable intermediate risk" that progresses very slowly. Don't rush into any decision. In fact, I think doctors should not even accept decisions from patients for at least a month after diagnosis. The decisions you make later may be different (or the same) as the one you might make now, but it will be more calmly thought through, and you will be happier with it - I can guarantee that.

A good starting place for learning the basics is the sticky for the newly diagnosed. I don't recommend any books - they are all out of date and biased. You are the one who ultimately calls the play, so you are going to have to learn stuff - some of which doctors may not disclose.
Posted 6/21/2017 11:51 PM (GMT 0)
Frost,

Welcome to Healing Well. I, along with a few others, can relate to being diagnosed so young. If you ever want to talk, feel free to email me.

HW is a great place for support and information. Out of any place on the Internet, you stumbled into the right place. Ask anything and everything and know we're on your side.

Hang in there. The shock will eventually go away and you will have a plan. You'll implement the plan and you'll live a new, but normal life.

Jerry L.
Posted 6/22/2017 1:02 AM (GMT 0)
Man...sorry to welcome you this club. However you will find a group of comrades who will be here for you as long as you want.
You have received some great advice already. You have time. Take it slow, and bring your questions here.
I wish you the best.
Posted 6/22/2017 1:09 AM (GMT 0)
Frosty, let me add my welcome to our club. I can't add much to what has been said already. We've all been where you are immediately after the phone rings. Yes, you're now officially a member of the PC club. The good news is, if your G7 is confirmed, you have choices.

I'll reiterate the steps...
1. ask to have your slides sent to Johns Hopkins for second opinion. about 30% of the time, they give a different interpretation. You really need that.
2. At U Mich, you have some great options, and some great and near great PC docs. Ask to be set up to spend a day talking to all of the experts in the different treatment modes.
3. When you go to consults, take a notebook to write down questions and answers. Even better, take someone with you to take notes. Also, get a big folder or file pocket to put all your paper in. Get copies of everything and take it with you to all appointments.
4. Slow Down. Yes, you heard the C-word. The good news is, even at G7, "cure" is a legit word, and "take the time to get it right" is a valid statement.

Good luck! There are several members here from Michigan. Hopefully some of them will check in with local recommendatins.
Posted 6/22/2017 3:19 AM (GMT 0)
Hey Frosty,
as a new member I can say I am really sorry you have to be here. I am relatively young here but you are way too young to be here , but in a way I felt lucky they got me at 48 Vs. 58 ( would have been really late for me ) - that goes to you as well that they caught it really early while you are 39 Vs later - which could have easily happened.
Folks much more knowledgeable than me will chime in but some more info may help others:
What were the percentages on your positive cores?
Were the 3+4 in the left middle or left apex or left base?
Was your DRE positive or negative?
Although I thought my PSA of 4.45 initially was not that high - but for my age it actually turns out to be quite high - turned out I had a pretty large tumor - 20% of the prostrate. So for your age a PSA of 5.1 may indicate a higher tumor volume (if you compare the same psa for a 70 year old). I am not sure how that would effect treatment choice - but something to think about.
I would get a MP Contrast MRI scan done.
Posted 6/22/2017 3:52 AM (GMT 0)
Hi FP, sorry you have to join at your age. As mentioned research and knowledge is your friend. Dig in and become the expert in your own care. Know the questions to ask during your consultantations the best you can. Also mentioned, get consultantations from the Radiation Oncologist and Urologist. So far your numbers say you can be treated with almost anything out there and get a cure. You should be able to bounce back from any treatment. I wish you luck on your research, the decision on your treatment and your whole PCa journey. Keep us posted. Take care. -JR
Posted 6/22/2017 3:56 AM (GMT 0)
Frostypro, I have seen a lot of posts on different prostate cancer forums, and attended many support group meetings. The three words that I hear that the men most regret are "take it out".

That is because they went with the recommendation of the surgeon who diagnosed, but totally failed to inform them of the life-altering side effects of surgery. They now have many years to regret not taking more time to educate themselves before selecting a treatment.

Surgery is not all bad, it has saved many men's lives. But, so has radiation, and a few newer, less proven, therapies.

You have received a post from Tall Allen. He is the guru of prostate cancer advice on this forum, and probably on all that I have visited.

Read his advice word by word. That is the best direction you can find.

Good luck to you.
Posted 6/22/2017 5:21 AM (GMT 0)

Frostypro said...
I'm a little scared but relieved to finally have results. Honestly I'm mostly feeling angry about having this at my age. I have two young children. Hoping for the best.

Anyway, I'm guessing they will want me to have surgery. Will I need scans or other tests to see if spread before they do surgery or is it kind of automatic at my age to just take it out and scan later?


they may want you to have some scans. usual protocol. don't freak. Hard not to. But don't.

Your kids are going to have you around for a long, long time to come.

Sorry to hear of your diagnosis. All good advice so far....you got time...I like lapilot's suggestion....6 mos.

be cool man take care

peace.
Posted 6/22/2017 6:33 AM (GMT 0)
Welcome. All good advice above. You have time to learn, and consider all your options.

Besides here, local face-to-face Prostate Cancer Support Groups can be helpful. They have men and wives who live nearby, and who have direct experience with many aspects of the local prostate cancer "scene". and their own unique stories to share.

Here's a link to one of them:
www.mcancer.org/news/events/prostate-cancer-support-group

Charles
Posted 6/22/2017 10:18 AM (GMT 0)
A very warm welcome Frostypro! As you can see from the wonderful, kind and informative words from everyone, you sure have landed in the right place. I remember as though it were yesterday, the wash of relief that came over me when I discovered this forum. It suddenly felt as though we were no longer floundering and alone. Tall Allen in particular, has made a big difference in our lives with his sage advice and generous patience in explaining things.
My husband and I wish you well in your research and with your treatment decision. The good folks here will help immensely, as you can already see.
All the very best to you and your family.
Posted 6/22/2017 12:35 PM (GMT 0)
Hi, Frosty, glad to meet you, sorry it has to be here.

You've received a lot of really good advice already, and there is not much I can add to it, other than to remember that you CAN take some time to decide your path and the treatment decision is YOURS, not some doctor's.

I read in one of the posts that lapilot recommended you read Dr. Walsh's book, Surviving Prostate Cancer. I, too, have read it, but I will risk the potential for being flamed by advising you to be careful of how you perceive Dr. Walsh's opinions regarding surgery as the "gold standard." Dr. Walsh's general information about prostate cancer was, for me, the best and most understandable of several books I've read. His discussion of the relative merits of various treatments is, in my own opinion, biased and out of date. (Being out of date is NOT a criticism of the Doctor. The nature of the written book industry is that it takes several years for a book to be researched, written, published and ultimately distributed. A lot changes in PCa in a few years.) Dr. Walsh is a SURGEON. Arguably one of the very best, a pioneer of the nerve-sparing prostatectomy. He is super-knowledgeable in surgery. He is far from that in radiation or other treatments for PCa. For those other potential treatments (as Tall Allen noted - things like LDBRT, HDBRT, SBRT, Hypo-fractionated IMRT, and so forth), you must seek out experts in each and any treatment that may be appropriate for you in order to learn the details about that treatment. A radiation oncologist who is an expert in LDBRT (low-dose brachytherapy, or permanently implanted radioactive seeds) is not an expert in SBRT or other therapies.

For me, the biggest dilemma was that of choosing the one treatment of many that I felt was most appropriate to ME. If you stay around here and ask lots of questions, you will learn how to decide for yourself. The folks here are simply THE BEST at helping new guys learn to navigate these waters.
Posted 6/22/2017 2:47 PM (GMT 0)
Welcome to the club no one wants to join.

However, at your age, and with your diagnosis, you have many options- including time to make an informed decision.

Read the Walsh book as it explains a lot about the disease. It is biased towards surgery, so accept that. Dig into this forum, as well as the other PC forums. Join a support group. You will find many men in similar situations, most of whom have had excellent outcomes. Tall Allen is a font of information about radiation therapies. Look at those closely. Ask questions, take notes, and talk things over with your family and trusted physicians.

Do what makes the most sense for you, as you're the patient. You should have a long life ahead. Good luck.
Posted 6/22/2017 4:36 PM (GMT 0)
Hi frosty

You've found a great site! My husband was diagnoised with a similar Gleason to you earlier this year, he is also relatively young, we also have very young kids so I can relate to every feeling you have! After getting second and third opinions he decided with my encouragement to have surgery done and thankfully it's so far so good with the psa's!!! Get as much expert advice as you can, unfortunately we didn't find this site until the week before his scheduled surgery. We were very focused on "get this out of me" and that mentality does have benefits like a final pathology which shows you the extent of what's going on BUT his nerves were also removed due to invasion, which means he now has ED. I'm not saying we regret his choice, to date he is cured but like everything in life there are consequences to each treatment and you are so very young. Weigh up ALL your options very carefully, you HAVE time to do your homework and figure your quality of life after whatever treatment as a major factor.

Wishing you the very best and please Hollar with any questions

S
Posted 6/23/2017 9:17 PM (GMT 0)
Some of the side effects of PCa treatment are temporary and sometimes they are permanent. Given your age, it's important to focus on side effects of different treatments versus probability of cure -- because you are likely to be living with the side effects a lot longer than I will (I had surgery at 61). ED at 61 is bad, but not as bad as at 38. Same with incontinence.
Posted 6/25/2017 2:58 AM (GMT 0)

Hello Frostypro,

You've stumbled upon a helpful, informative, and supportive website right here, as evidenced by all the replies you have seen.

There are many of us here, who found ourselves unexpectedly diagnosed, out of the blue ...

It's a roller coaster of emotions, when you are first diagnosed ... worries and anxieties ... sleepless nights ... indecision ... stress ...

Once you get some treatment decisions made, or a plan of action, you will feel better ...

In my case, I was diagnosed when I was in my 40s, after a lifetime of perfect health.

Ironically, my father is also a prostate cancer patient --- we are actually treated by the same oncologist.

Shortly after I was diagnosed, other good friends of mine --- all my same age --- received the same diagnosis. These friends are from every chapter of my life --- hometown friends, work colleagues, one of my old college roommates, and friends from the community.

You'll find that, over time, that you will receive tremendous support from friends, colleagues, and family.

This website is a tremendous resource --- and you'll find tremendous support and encouragement here, as well.

For the time being, I'd like for you to go to the search box at the top of your screen. Once you find the search box, type in this thread title: "LETTERS TO THE NEWLY DIAGNOSED" ---

You'll immediately find these letters that others have written --- I think once you read the letters, you will find hope, insight, and encouragement.

In time, your story will be valuable to others that you will encounter --- you'll find that you can encourage others, as time goes on --- and you're going to be there to encourage THEM one day.

I wanted to let you know that you're not alone in any of this ... you've already found friends and comrades to stand beside you right here ... and that's a great place to start.

I just wanted to send a few lines of hope, encouragement, and support to you.

Stay in touch here --- let us know how you are faring --- post as often as you wish --- and check in here often, Frostypro!

Handshake of support, from across the miles,
"Cyclone" ~ Iowa State University
Posted 6/27/2017 2:22 AM (GMT 0)
Thank you all for the welcome and your kind words of advice, encouragement. There is so much to take in. Studying the many differing experiences you've all had along with the wealth of information here.

Some updates:

I got biopsy dx report from UMich. Age 39, PSA 5.1, 4 of 12 cores, "T1c clinical stage", G7 moderate. "Taken together these represent favorable prognosis with treatment". "Neg for basal cell markers. Pos for AMACR expression supporting dx of prostatic adenocarcinoma."

L Lateral Apex (3+3), 1%, 3/50 3/50 PNI-N
L AntHorn-Lat Mid (3+4), 80%, 3/90 4/10 PNI-N
L Medial Mid (3+4), 30%, 3/90 4/10 PNI-N
L Lateral Base (3+4), 30%, 3/90 4/10 PNI-Y ?!!!??
(Second opinion request sent overnight to Johns Hopkins today)
Appointment with URO on 7/13 to discuss.

Thank you guys for slowing me down and letting me know there are more options on the table. I've gotta admit I really am torn selecting treatment at this point. Right now I'm 60/40 lean SBRT over RP. I really hate the idea of RP but I don't want to rule it out yet either.
Then listening to surgeons and RO's give their pitch on youtube seems like scare tactics against eachother. Seems a darned if you do, darned if you don't thing. Is selecting SBRT at my age/dx in some way gambling with my life expectancy? I'm trying to compare as best I can but seems like so many more people have selected surgery than rad. At very least, looking into TallAllen and his blog/research are giving me reason to question instead of jumping.

I know it's impossible maybe even useless to find out possible causes of my pc.... but so far I have 5 different theories in no order:
1. Lifetime of stress/anger
2. Exposure to "stuff" during Military deployments to Iraq/Afghanistan/Kuwait
3. Exposure to some RAD waste and RAD commodities at my current position. I've been doing this work for 3-4 years and mostly exposed to small amounts of H3-Tritium, Ni-63 and even less TH232, RA226, etc.
4. Chemicals, sandblast media at solar panel factory and automotive factory.
5. Family genes. Several cases of cancer but none prostate and none before older age.

Oh yeah. Today is my 40th b-day. Yay :\

Frostypro
Posted 6/27/2017 3:16 AM (GMT 0)
Hi Frosty, and I hope that you have had an enjoyable birthday today.

Personally, I have been researching and "shopping" for the best treatment since I was told that I had prostate cancer in 2009. Luckily, I have remained low risk and in AS, but that hasn't stopped my participating in several online PCa forums and local support groups. But, if my next tests come back with your results, I would go with SBRT. Read and heard way too many regrets with other treatments.

But, that's just my opinion, and we are 33 years apart. Actually, I was hiking, tree climbing, and disco dancing today, so I think that I'm forty 😳

Don't rule anything out, as you have to live with your choice for many years, and you want the minimal damage while stopping the cancer.
Posted 6/27/2017 4:57 PM (GMT 0)
ASAdvocate, Thank you. Birthday wasnt as enjoyable as I would like but it is what it is. Glad you're still feeling like forty. I act like im feeling seventy.

Exactly my thoughts on SBRT vs other treatments. I understand there are some QOL risks with any treatment but from what Ive read so far SBRT and HDR data look a bit more appealing than RP at least to me. I just havent learned enough yet to know if my age alone should be the deciding factor in choosing against my gut. ?

Obviously recurrance is possible in any case. I just dont want to get surgery and all of its possible SE's and then have to do rad anyway a year or two later. Im wondering if I did SBRT is there any possible salvage rad for recurrance or is it just straight to chemo and/or HT type stuff. I think I read that SBRT can be used as salvage treatment if HDR fails but not sure about what happens with SBRT as primary.

Id like suggestions or shared experiences on RO's and surgeons to consult in my area. I know Dr Alvaro Martinez is really close so I will at least visit there. Im already working with UofM (Dr Hollenbeck) and Cleveland Clinic isnt too far if they might have bestter options or specialists?
Posted 6/27/2017 5:05 PM (GMT 0)
Hi Frosty

Sorry your bday falls into the middle of this but try your very best not to let it dampen your spirits. If you type SBRT into the search bar on the top of this page it will bring you up oddles of info, every thread where it was mentioned. Same with HDR, RALP etc. If someone is of interest to you, then if you click on their name, you can see their last ten posts and get more detailed sigs etc. Its really helpful and you can get lost there reading for hours, but learning all the time!
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