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I just got the bad news....40 years old

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Posted 7/17/2017 7:22 PM (GMT 0)
Hello Everyone,

first of all, thank you for all of your support as I went through the original high PSA questions and biopsy questions. Sadly, I just received the call that my biopsy came back bad. All I was able to gather from the initial phone call is that it is a gleason score of 7 (unsure as to 4 +3 or 3+4). I have called back the urologist and asked for that information. I know that I have an appointment on Wednesday to meet with him to discuss this further.

As you've all described, the emotions I am going through right now are unreal. I have two young (12 & 10) children and a wife and I literally just turned 40 less then 5 months ago. Please if you could offer any support and next steps for me, that would be greatly appreciated. I know the Dr. mentioned that he was going to refer me to Boston to get surgery done. That was his recommendation based on my age. Thank you for your support!
Posted 7/17/2017 7:35 PM (GMT 0)
Well, sorry to hear of your diagnosis. However, don't get too down; Gleason 7 is intermediate risk and various treatment options are available to you. It is highly likely you can expect a good outcome. Being cured is a real possibility.

You should have ample time to investigate your options, get second opinions, join discussion groups and other support groups, and make an informed decision.

When you get the pathology from your biopsy, please share it with us. There will be many here who can offer you advice and counsel.

Good luck.
Posted 7/17/2017 7:42 PM (GMT 0)
We all know what you're going through and it sucks. I personally don't understand why this kind of information is given over the phone, it leaves you with so many questions. If you can, take your spouse to the appointment with the urologist, I'm sure she will have many questions as well. Once the initial panic wears off, realize that you have time, so don't take any rash decissions that you may regret later on.
Meanwhile; educate yourself. Read the sticky at the top of the forum, read books about the topic and above all: come here to ask your questions. We can't tell you about your specific situation yet, but we sure as hell can give you experience based advise. You found a great group of friends who will help you get through this.
Take a deep breath, try to clear your mind of negative thoughts and report back to us as soon as you have detailed information on your dx.
All the best to you and your family.
Posted 7/17/2017 8:04 PM (GMT 0)
Hi Mrbaseball

So sorry that your here but your in good company. There are a lot of great people here to give sound advise and support. My husband was diagnosed earlier this year as a gleason 7 (3+4), relatively young also with a young family. Take a deep breath. The good news is you have plenty of time (months) to come to a decision that makes YOU comfortable. Get as many opinions as you can, that includes getting a second opinion on your biopsy. Epstein is a favourite of many here. Speak to as many medical experts that you can. You will be your own best advocate and you certainly dont want to have any regrets with the decision you make so take your time, discuss with your wife all the pros and cons. You have a very very good chance of stopping this disease now in its tracks so consider the quality of life you will have with each treatment, because at your age that matter so much!! It matter at all ages! When you get a copy of your biopsy results you should post them here an set yourself up a signature so everyone knows how to advise you. There will be detail there that will sway opinions and advise here. You may very well end up going for the surgery (as my husband did) but don't go down that road without doing your own research!

Shout with any questions! Im sure many will crop up along the way

Wishing you the best
Doire
Posted 7/17/2017 8:04 PM (GMT 0)
I know you're head is probably spinning like crazy now and you are thinking about all of these bad outcomes. I believe that probably happens to most of us when we are told we have cancer. I know it's easier said than done but try to chill out a bit. I was in your shoes early last year. Surgery was my choice but there are many other options that are likely just as good that will work for you. Since you are young then surgery is probably a favored option but it can have some side effects that are probably less appealing to a young guy. Take your time and think about your options, how the potential side effects may affect you physically as well as emotionally. Check out different institutions and doctors and then make an informed, intelligent decision. I was a G7 like you. I'm 15 months out from surgery and physically I can't even tell that I had cancer other than several small scars on my abdomen so just remember that you have not been given a death sentence. Like one of my doctors told me after I got my biopsy result, "This is likely just a bump in the road".
Posted 7/17/2017 8:30 PM (GMT 0)
Hello and thank you for the kinds words and support. After I got the call and posted here, I got in the truck and drove right over to the urologist. I have a copy of the report. What information specifically do you need from it? If someone can tell me how to read this silly thing and what you need I"ll reply and set up the signature. Thanks again!
Posted 7/17/2017 8:36 PM (GMT 0)
Sorry to hear that Mrbaseball. You and I are pretty much in the same boat. I just turned 40, two young children, and got the call last month. But don't get too wound up just yet bud. When you start looking into it, we have lots of very different options with our G7's. My age was also one of my biggest questions looking at treatment options but don't settle into the surgery option just yet. At least not until you've read into your options and heard opinions from some RO's. If surgery is still the right choice for you after all, then at least you can move forward and not have to look back and ask what if. Best to get the second opinion on your slides to confirm results first and start lining yourself up for consultations with the best specialists (Surgery, HDR, SBRT) in your area. I've met 2/3 so far and meeting with SBRT doc soon to complete my rounds. At this point I'm probably 98 percent sure my personal choice will be HDR or SBRT since I just cant seem to wrap my mind around prostatectomy. Everyone is different in their reasons for choosing one treatment or doctor over another. Lots of good advice and differing personal stories coming from this forum. Not very many our age but there are some.
Try to relax for now. Easier said than done I know. But the more you research the more you'll realize you aren't going anywhere soon. So take your time, enjoy your family, and let's do what we have to do to get through this.

Frosty
Posted 7/17/2017 8:46 PM (GMT 0)
MrBaseball,

The biopsy report probably has lines for each core, and the findings for that core. This is how we arrive at the complete biopsy statement, such as 4 of 12 positive cores, Gleason 3+4. Just write down in a posting the specific language used for each core, along with anything like "EPE suspected". We can help translate.

For you, let us know where you're located, and we can point you to experts near you. There are some great docs in Boston--I think there are guys here who have been treated there. When you call to make your appointment, ask the person there if you can set up consults with radiation oncologists as well, on the same day. They do that sort of thing often.

Bottom line is, you're intermediate risk, and cure is likely. Even better, you have options for treatment. Surgery is an option, but so are the various radiation therapies. It's good to talk to experts in all the different therapies. Always remember that Urologists are surgeons, and they know surgery, and that is what they recommend. Don't expect them to know a lot about radiation.

Bottom line is this: you have some time to make a solid decision, and you have many options for treatment.
Posted 7/17/2017 9:11 PM (GMT 0)
Halbert, thanks for that. Here goes:

6 of 12 positive -

Left Base Lateral - Adenocarcinoma 7 (3+4) POS % 60 %Pattern - 20 Discontinuous

Left Base Medial - Adenocarcinoma 7 (3+4) POS % 10 %Pattern - 30

Left Mid Lateral - Adenocarcinoma 7 (3+4) POS% 80 %Pattern - 30

Left Mid Medial - Adenocarcinoma 7 (3+4) POS% 10 %Pattern - 30

Left Apex Lateral - Adenocarcinoma 7 (3+4) POS% 50 %Pattern - 30

Left Apex Medial - Adenocarcinoma 7 (3+4) POS% 10 %Pattern - 30

Prognosis Parameters: Clinical Stage: T2B PSA: 7.5 Gleason Grade/Group: 7 3+4/2 Percent Cores: 50%

Partin's Probabilities: Organ Confined 25 (19-31) Extra Prostatic 44 (36-51) Seminal Vesicles 17 (11-24) Lymph Nodes: 14 (8-22)


I hope that's what you need, if not let me know. And most importantly thank you all for being here!
Posted 7/17/2017 9:31 PM (GMT 0)
that's going to have to be treated. a book that helped me was Patrick Walsh's "Guide to Surviving Prostate Cancer"

That book is the best there is at taking people who know nothing about prostate cancer and educating them in a week's time to a point that they can carry on converstaions with doctors about this. It's written with humor, empathy and hope. It reads like a novel. I hate reading books...but this one was easy.

It helped me a lot. It's helped millions of men. I'd suggest you order the book.
Posted 7/17/2017 9:35 PM (GMT 0)
Here's the thing that's going to really drive you crazy - all main line treatment modes will work just fine for you and your problems is to pick with one to do.

You are in the curable zone and have a high likely hood of beating this thing. Not going to be fun, normal will change, but you'll be here long enough to see your grandkids (providing your kids cooperate with that project).

Surgery is a reasonable choice, but you should also checkout SBRT as a good radiation option. You've got time to make an informed decision, but don't take years to make a choice. PC is a slow grower and you're not high risk. Don't let anyone push you into a decision. Get opinions from a good surgeon and a good RO.

Hang in there, and ask all the questions you have.
Andrew
Posted 7/17/2017 9:36 PM (GMT 0)
I hate this. it's not the threat to human life....it isn't. it really is going to be about the process. I hate you have to go through this. those kids will have you at their college graduations and weddings...

take care
Posted 7/17/2017 9:51 PM (GMT 0)
MrB....your forum brothers have your back........stay with us .....David
Posted 7/17/2017 10:53 PM (GMT 0)
hi, welcome, we're a young family too. it sucks. so sorry.

i know everything feels very heavy right now, but soon enough you'll come up for air & you'll be able to feel some sense of normalcy again.

making the treatment decision is the hardest part, imo.

hang in there.
Posted 7/17/2017 10:58 PM (GMT 0)
MrB - so tough to see a guy your age get diagnosed. DESPITE the fact that in all likelihood, you'll be ok.
Does seem like a fair amount of cancer in there, but the PSA under 10 is encouraging. Hang in there, don't rush into anything, but don't take too long either, you do need treatment.

Glad you found us, as if Drifter said, we've collectively got your back.
Posted 7/17/2017 11:47 PM (GMT 0)
Hi MrBaseball220-

That is really unusual for a 40 yo. Lucky you, eh? sad

First, let me add my voice to everyone else's saying slow it down. Take at least a month to make a decision, several months would be even better. Your kind of prostate cancer is very slow growing. You have time. and the decisions you make later after you've informed yourself may (or may not) be different from the one you would would make now (which is usually "just cut it out").

The good news is that your intermediate risk prostate cancer is probably curable. I can explain your biopsy report:

• Your PSA was below 10, which is good.

• You have the second lowest grade kind of prostate cancer, the lowest would be Gleason score 3+3. Lower is better. The highest grade detected is Gleason grade 4 (they only report 3 Gleason grades: 3,4 or 5) and it composes 30% of most of the tumors they looked at in the biopsy cores.

• All of the cancer is on the left side side of the prostate, as far as they can tell, and all parts of the prostate on the left side, base (top), mid, and apex (bottom) have cancer in them. Your doctor felt it in more than half of that side, which is why it is staged T2B.

• There seems to be more cancer on the lateral (outside edge) than on the medial (inner) part. This increases the odds (to 75%) that the cancer has escaped the capsule (although there's no evidence of that) and decreases the possibility that surgery can spare the neurovascular bundle (NVB) on that side. about a quarter of men with unilateral NVB sparing are able to regain potency.

Other comments

• Your age is in your favor. Whether you decide for surgery or some kind of radiation, you will recuperate faster from the trauma. Your relative youth is a detriment if you have any permanent side effects of treatment - longer to live with those. If you intend to have more kids, bank your sperm.

• Surgery has a hard time cutting out all the cancer if it has escaped the capsule. Radiation treats an area outside of the prostate.

• Your Partin table odds of lymph node invasion are high enough (14%) that a surgeon would probably try to remove most of them. A radiation oncologist may decide to spare you lymph node treatment. Lymphocele and lymphedema are possible side effects.

• There are salvage opportunities no matter which therapy you choose. However, you want to choose the therapy that will cure you on the first try.

Boston Doctor recommendations

• Irving Kaplan at Beth Israel Deaconess for SBRT (see links in my signature for more info about it).
• Paul Nguyen at Dana Farber for brachytherapy
• Adam Kibel at Brigham & Women's/Dana Farber for surgery
Posted 7/18/2017 1:20 AM (GMT 0)
First post been lurking here for years. Looks like we had the same diagnosis all is good for know. Just seems like a bad dream know. Good luck and don't worry some much.

Post Edited (Pinball25) : 7/17/2017 7:54:49 PM (GMT-6)

Posted 7/18/2017 1:40 AM (GMT 0)
Like I said this is my first post. If you want to talk to a young guy with your same diagnosis just email.
Posted 7/18/2017 1:41 AM (GMT 0)
MrBaseball,

Mr. Tall Allen has given you some great information. Pay attention. Take the time you truly need to make an informed decision. My diagnosis was G6, but my post surgery pathology was G7. My diagnosing Urologist told me, "you have 6 months to make a decision", and while I didn't take all that time, I was glad to hear that I had it if I needed it.

SBRT might be a great choice for you, given your age. Several guys in here have done it, it's all over in 2 weeks (5 treatments 2-3 days apart). I haven't heard anyone express regret about it. I chose RALP, and have had a great outcome--and at least part of that is due to having a highly experienced surgeon at the console of the Davinci.

My suggestions:

Take your wife with you to all appointments to take notes and keep things straight.
Get yourself a large file folder that closes to collect all the paper. Get copies of everything. Including CD's of your xrays, scans, etc.
Take notes, and write down questions beforehand.
Come in here and ask for help in sorting out the options.
And, go out an enjoy life. It's about to change in unpredictable ways.

We're here to listen and tell you what we did, and how it came out.
Posted 7/18/2017 4:23 AM (GMT 0)
Mrbaseball,
Sorry you're here. So far, you've probably heard from some of the best support structure out there, right on this forum. Listen to what TallAllen has to say. You wont get more great advice and support anywhere. You're young with a manageable outlook and a great chance at beating the crap out of this thing.
Like everyone has already told you. Take a deep breath. I know how overwhelming this is. But you need to realize you're in this and its something you are going to beat. Do your research. Ask all the questions you need to. Make sure you take notes and have someone with you do it. Its hard to focus sometimes when you get an answer, you try to think of whats next to ask and the doctor rambles on about something and you miss it.
Realize something else also. Your urologist is already signing you up for surgery. Urologists are trained in surgery. Not in radiation. Bus drivers drive busses, surgeons do surgery. Explore all of your choices. Don't let a urologist push you in any direction you dont want to go. Look at both sides, surgery and radiation, weigh the pros and cons, and only then make a decision. My urologist tried the same thing with me. In my case, with a GS9, radiation was my best choice. Even though he was pushing for surgery. Surgery which would have been followed by radiation anyway. Why do both procedures when one would suffice.
Beat this thing and beat it to hell. Then take the kids and wife to a ball game.
Good luck brother
Dennis
Posted 7/18/2017 11:59 AM (GMT 0)
Thank you all for every ounce of feedback. The emotions are all over the place. I cry one second and the next I'm without a doubt going to beat it. With that said -

With my appointment coming up tomorrow with my local urologist, What are the most important questions to ask?

Also, I know most people are suggesting the book By. Dr. Walsh, but others are saying it's old and dated...thoughts? Any other book suggestions?

Should I send my information to John's Hopkins? If so why and if not why not?

I know there was some recommendations for Dr's, but what if my insurance won't cover those DR's, what do I do?

Thanks again everyone for all you do.
Posted 7/18/2017 12:17 PM (GMT 0)
Hi Mrbaseball,

I too am a G7. What you need to know, and I didn't catch (no pun intended) in the above posts, is if your primary number is a 4 or 3. Mine unfortunately is a 4+3, very close to an 8 I was told. My first pathology report was a 4+4 and then I sent it in for a second opinion by the venerable Dr Epstein at John Hopkins, who downgraded me to a 4+3. But it was "so close" I have to look for treatment as an 8, meaning the cancer may grow fast.

So in sum, I'm no medical expert but I've read a ton and had consultations with prestigious pros, if your primary number is 4 you need to worry, if it is 3 you can exhale and take your time to decided (as long as it hasn't left the prostate).

Best of luck,

Nick
Posted 7/18/2017 12:35 PM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=35&m=2652250
The very last post is a great question sheet for any of the doctors you may visit provided by TallAllen.
On sending your slides to Epstein, you want the best treatment, so go for the best in the field at reading those slides. It may change the numbers somewhat or they may stay the same. But even some change may affect your treatment plan.
Even after you speak to your local urologist, search out the experts. The urologist will more than likely tell you surgery. Because thats what he was trained on. I dont really have anything against urologists, mine is a friend of mine, who also suggested surgery immediately and had me set to meet a surgeon right away. With my GS9 level, radiation and brachy were much better options for me. Sorry if he got butt hurt.....lol Research your options with the experts in your area. Travel if you have to. Distance should be no barrier to you getting the people you want to get you through this.
We've all had the feelings you are going through. Its normal. Set your sites on getting yourself cured and remember you're doing it for your family, but primarily for you.
Posted 7/18/2017 12:38 PM (GMT 0)
I feel you on the emotions. It's been only a month but I've calmed way down now. I really am just look forward to getting my treatment done now. I want to destroy this unwelcome guest and carry on with living my life as close to normal as I can possibly get.

I was told a 2nd opinion from Johns Hopkins is ideal because Dr Epstein is the man who wrote the book on grading. There are many other options for second opinion but none "better" than at JH. They did mine and sent the report back to UMichigan only instead of sending to me like I requested. Nobody told me when it was complete so I had to make a few calls to get my results but still very much worth it.
Posted 7/18/2017 12:41 PM (GMT 0)
Hi, Mr. B - Glad to meet you, but sorry it has to be here. . .

I could re-state much of what has already been said, but you can just scroll up and read it again. Do take Tall Allen's advice most closely to heart -- he is recognized here as one of the best resources for all information related to prostate cancer. I know his info helped me to choose my treatment (I am also a G3+4=7, and chose SBRT/CyberKnife radiation).

As for Dr. Walsh's book, I am often the outspoken member who cautions people about this book. Yes, it is THE book to read to learn, in simple language, all about prostate cancer, the disease. It is the best, most complete book I have found to describe the disease itself. It is probably also the best book to read to learn about surgical treatment of prostate cancer. After all, Dr. Walsh is one of the pre-eminent prostate surgeons, having developed many of the best techniques now in use for prostatectomy and nerve-sparing. The book is NOT, however, a good resource to learn about non-surgical treatments for prostate cancer. The most recent edition of the book is 3 or 4 years old, and as you may know, the book that is published today was probably written a year or two ago, allowing time for fact-checking and editing, so Dr. Walsh's book is at least 5 years out of date with respect to radiation and other non-surgical treatments. Add to that the surgeon's natural bias that "surgery is the gold standard treatment for XXX" and you will understand my caution to you. If you have any interest in non-surgical treatment (and you really do owe it to yourself to at least investigate them), you must look here at H-W and to the specialists who deliver each of the treatment modalities you could use.

As the others have said, with your G3+4=7, you have intermediate risk PCa, which is relatively slow-growing. You have the luxury of time in that even if you take a couple of months to decide what treatment is right for you, it has been shown to not affect your odds of a cure due to delay.

My decision approach was to identify all of the treatment modalities that were appropriate to my pathology and medical history. I then assessed the success rates of each treatment and listed that along with the most common side effects of each treatment. I made my final selection based on which treatment had the best odds of success with a side effect profile that I felt I could accept. Remember, as Tall Allen said, the side effects of the treatment you choose will be with you for the rest of your life, which is likely to be a very long time. Choose carefully and wisely. Folks here can help -- just ask.
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