HealingWell
Search Close Search
☰

Diagnosed yesterday

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/5/2013 1:53 PM (GMT 0)
Hello all,

I have lurked here for years but now I'm a member of the club -literally. Wow, you just can't prepare for this. I've always admired the support the members of the=is forum show one another so here I am. Hopefully, I will contribute and not just receive from you guys.

I've had a bad feeling about this ever since the biopsy when my doctore kept on muttering "hmmmmm", "hmmmmm"

Yesterday I got the news:
2/12 cores positive (1% and 10% respectively)
PSA 6.5
Gleason 3+3 = 6

My doctor called it a "blessing". I know what he meant but that was alarming.

I'm better today but still stunned. I don't have a sense for how bad this is...other than the fact that I now have cancer. I also know I should get a second opinion but I just don't have the energy to go through another biopsy and all just yet. I will do what I have to do to get a handle on this thing so I can have the best possible outcome.

I would love to hear your experiences with similar numbers and any thoughts you may have.

Thanks for everything.

John
Posted 4/5/2013 2:06 PM (GMT 0)
Deep breath time.

Your stats are on the low end (good) of the spectrum
You have time to think about what to do, if anything

Age is a factor, how old are you? did you have any other symptoms ? what does the doctor say to do ?
second opinions or additional biopsy/scans add more information and can result in more informed decisions

for the moment, try to step back and think/analyze.

PCa is not to be taken lightly, but you are in a decent situation, you are at the right web site for info, and you have time to think and decide.
Posted 4/5/2013 2:11 PM (GMT 0)
Hi Charlie,

Welcome and sorry for the cancer diagnosis. It is a stunner isn't it?

Gleason 6 isn't that bad. It can be treated with any of the treatment modalities.

You won't need another biopsy but getting another pathologist to look at the specimens is something men do. It can't hurt.

If I were you I'd read and educate myself on your options and not rush into any treatment. I'd make appointments with surgeons and radiation oncologists. With a Gleason 6 many men can also do active surveillance - that is something you and your doctors have to decide.

What has your PSA been doing over the years?

Buddy
Posted 4/5/2013 2:12 PM (GMT 0)
Good morning John,

If you've been lurking for a while here then you know the standard greeting -- hello, welcome to the forum, sorry you have to be here but glad you found us, etc. -- and you can take that as read.

The first thing to do is calm down, as I am sure you know. Your biopsy showed a small amount of a type of cancer that can often be watched instead of treated. What that means for you right now is you have lots of time to research things and decide what you want to do about it. Your cancer is not likely to do anything quickly and neither should you.

Actually, the next thing for you to do, after you calm down, is fairly easy, too. Tell your doctor that you would like a second opinion on your biopsy reading. For my second opinion on my positive biopsy I had "recuts" made -- that is a second set of slides made from a new slice from each of the preserved biopsy samples. Recuts cost a bit more but they give a bit more information. Easier, and almost as good is just to send your existing slides to a different (highfalootin') pathologist. Your doctor can help you get that done.
Posted 4/5/2013 2:12 PM (GMT 0)
Thanks for the quick response, sfigato!

I'm 49 with a first degree relative (father) who was diagnosed at 62.

My Urologist suggested robotic RP. I'm very concerned about side effects though. Again, I want to do whatever will get me the best outcome.
Posted 4/5/2013 2:15 PM (GMT 0)
Welcome. You don't need to get another biopsy to get other opinions. Just get a copy of your biopsy report and bring it with you when you go for consultations.

You have low grade PCa and would qualify for active surveillance, surgery or radiation. You need to get a few opinions to get a handle on which direction you want to go in.
Posted 4/5/2013 2:25 PM (GMT 0)
Thanks. I'll look into recuts to try and get more information. Do you know if this is covered by insurance? I have decent insurance but you never know what's covered these days.

I'll try to schedule appointments with a Radiation/Oncologist as well.

Here we go...the journey of 1000 miles begins with one step...

I really have to take this advise to heart because all I want now is to get this thong out of me. I have three kids a a lovely wife and the thought of leaving them "early" is terrifying. I suppose that when you go, that's your time, but you know what I mean.

John
Posted 4/5/2013 2:42 PM (GMT 0)
John,
Sorry you need to come out of lurker mode. First, deep breath, take a few minutes to let the emotions do their thing and then start going through the check list:
Get a second opinion
See an RO
Ask tons of questions.

The frustrating thing for you will likely be the number of choices you'll have. Surgery is a good option at your age but beam or seed radiation will likely work just as well. With your numbers I'd think you'd have a very good change of being in the zone for a 'cure' (ie, you'll get to die of something else, cheerful thought, right?!)

I doubt you'll be checking out early and you'll be around long enough to be a embarrassment to your children. Life will have a new "normal" but you'll do fine. It's scary when you first get the news - I was stunned for a few weeks. Take some time to deal with the emotional/spiritual side of this PC thing too.

In your place I'd have good confidence that the doctors can treat the PC - with some side effects that we can guess at but can't fully predict.

It's Friday so my suggestion for today is: Take your wife out for a date night and tomorrow do something fun with the kids. On Sunday do some that you find uplifting and/or refreshing.

First thing Monday start making those follow up appointments.

We'll be here whenever you have a question or those doc isn't doing what you want. ;)

All the best,
Andrew
Posted 4/5/2013 2:42 PM (GMT 0)
What to do, what to do?  What's going to happen to me?  Why me?  These are the kinds of question we tend to ask ourselves when we get a cancer diagnosis.  It's a horrible time for everyone involved, and you're right in the middle of it.

I know it might be hard for you to believe right now, but your stats should give you a great deal of hope.  You've found this cancer early.  It's Gleason 6, according to all indications, and it's low volume.  It's treatable....hopefully, even curable. 

Life has thrown you a curveball, and you're going to have some important  and difficult decisions to make regarding treatment or non-treatment, but please keep telling yourself you're going to be alright.  You still have every reason to believe that you'll be around to watch those three kids grow up.  You're right in the middle of a very emotional time right now, but please try to stay positive and make good decisions as you work your way through this.  We're all with you in this fight.

Posted 4/5/2013 2:53 PM (GMT 0)
John,

Welcome. I am a few months ahead of you and empathize with your concerns. The word "cancer" just is scary, no two ways about it. I told my kids "If you are a man and you are going to get cancer, get prostate cancer." Very treatable, especially G6 (my diagnosis as well).

This forum is filled with very supportive, knowledgable, experienced people who are all here to help. Ask as many questions as you like. In my experience, you will receive lots of support and potentially a variety of answers. These have helped me have better conversations with my doctors, as well as given me comfort when I was down.

You'll likely hear a lot about take a deep breath and relax, prostate cancer grows slowly. Thats completely correct and, again for me, initially very hard to do. You will find your own way, just as each of us here have.

Finally, share your experiences with others that come behind you. Your journey will be unique to you and by sharing your learnings, you will enable others to make their own way.

Take care,

pat
Posted 4/5/2013 3:40 PM (GMT 0)
Sorry you have to be here, but glad you're already getting some support from the community. I'm still in the early innings, but I would advise you to take as much time as you need to talk to professionals and other PC patients to assess your options.

For my part, I changed my mind a few times as I pondered my treatment options. In the end, I was very comfortable with my path, but it was a process to get there.

Good luck and use this community to your advantage!

Michael
Posted 4/5/2013 3:42 PM (GMT 0)
Thanks for the uplifting comments everyone.

The hardest part is the unknown. As many of you have reassured me, the cancer appears to be in the earlier more treatable stage, etc but what if....and which path do I take...I don't want to stress out my kids but they should know...everything is swirling now....

I'm at work and that is actually helping me focus on something else. I'll take the advice and do something fun and start fresh on Monday.

John
Posted 4/5/2013 4:02 PM (GMT 0)
Charliehorse,

The first thing that happened to me when I heard the word "cancer," was it brought up all the thoughts and feelings I'd suffered from when my parents died of it. All the mental baggage I had like "this could kill me," "You've got to treat it early," etc. came floating to the surface. As I was to find -- none of it was necessarily true for prostate cancer. A low percentage of guys who get prostate cancer actually die from it (most die with it -- or used to, until we started over-diagnosing and over-treating it), and it usually follows an "indolent" course, not growing or getting much worse. So the best thing you can do when you're in this "cancer panic" mode is -- nothing. It impairs your decision-making ability. It might be a good time to talk to someone about it. I saw a therapist who taught me how to practice Mindfulness, which did wonders in allaying my panic and anxiety.

Most doctors call what you have "insignificant" amounts of cancer there, and because it is Gleason 6, there's every reason to believe it is indolent as well. All treatments have side effects. Because we have tools to monitor any progression that are not available with other cancers, the best course of action in cases like yours is probably to watch it closely with a plan to do something if it should grow. Different centers have slightly different protocols for Active Surveillance, but 70% of men with disease like yours are staying on it for 5 years or more so far -- at least 5 years with no erectile dysfunction, no incontinence, or any other symptoms of treatment.
Posted 4/5/2013 4:06 PM (GMT 0)
John,
When I got the results back on my biopsy, I was just numb, the word cancer just hung over me and scared the you know what out of me. Starting Monday, I would start educating myself and read up on everyting you can find on Prostate Cancer, and each of the different paths you can take to treat the beast. The more information you have, the better you will feel because the odds are very much in your favor! Each of us had to select the path that we felt was best for us at our age and stage of cancer. I also had my wife read up and go over our options together, first to help her understand what I was up against and have a comfort level in understanding that there are many really great options out there, and more drugs coming out every month fight this cancer.

Beachbum
Posted 4/5/2013 4:17 PM (GMT 0)
I agree with Allen. The first thing is to confirm the Gleason score by a pathologist that is an expert in PC. If it remains the same you are indeed in the "very low risk" category. Basically what this means is that the odds of a favorable outcome are well on your side. If you go on Active Survellience there is a 70% chance that you will go a long time or for the rest of your life without treatment. If you get treated later the results are the same as immediate treatment. If you are treated by any of the conventional treatments it is 97% that you will live out your life free of PC, but also a 50% chance that you will also suffer some side effects from treatments. You have plenty of time to make a decision, months or years, so take your time and figure out what is important to you. Can you accept a small risk of death 20 years in the future in trade of a much larger risk of ED or incontinence now in your life? Only you can make this decision.
JohnT
Posted 4/5/2013 4:22 PM (GMT 0)
Hi, John. Along with everyone else I welcome you and am sorry you have to be here. A couple of things that I didn't see anyone else mention. First; your PSA is below 10. That is another good indication that they caught it early. Low PSA, low Gleason, always makes the statistics be in your favor.

Second thing. Start keeping a journal. Write down any questions that come to mind that you want to ask your doctor. If you're like me, I could never remember what I wanted to ask unless I wrote it down. My doctor was very glad to see my notebook full of questions. Also, ask your wife if she has any questions, and write those down. And remember, there are no dumb questions.

As far as telling your kids; you will hear many different answers to that one. Personally, I told mine. I was careful to make sure they understood that I was not going to drop dead in the next month or so. I don't know the ages of your children. As you can see from my screen name, I have 12 of them. The ages; at the time of my DX; were 12, 14, 16, 18, 19, 21, 26, 28, 30, 32, 34, and 35. Quite a spread! With the older ones, we gave more details. We were very open with all of them, and encouraged them to ask questions. I think it turned out well, and it increased my support!

I agree that you should relax as best you can over the weekend; then really start getting as much information as you can. Walsh's book; Chodak's book; the internet (be careful with this); this forum. The more knowledge you have, the better you are able to make a decision.

Good luck!

-Bob

 

Posted 4/5/2013 5:21 PM (GMT 0)
CharlieHorse, you know how when you get a charliehorse in bed and theres a bump in the muscle. You get up grudgingly in pain, stand firmly on the floor and the bump and pain disappear. Do the same thing here…….. Relax and tell your kids when you sense and see the good news in this and share that with them as well as the "bad". They will imprint the the same anxiety or calm that you present. Get up and standup……..
Posted 4/5/2013 5:32 PM (GMT 0)
Welcome !! Great advise here to you. You have very good numbers and that is a Blessing. There are many options for you at this time. No hurry for anything. Get another opinion and take your time researching. I am also 49, similar numbers but had 4 cores involved. Best of luck to you.

Don
Posted 4/5/2013 5:53 PM (GMT 0)
John,
All great recommendations from the members here...Probably the best was from John T.--Have your slides confirmed by a good pathologist and then if it remains the same say "Thank God"..You will be in the very low risk category and can take your time deciding what if anything to do--Right now AS sounds great for you but if you definitely want it out since it's bugging you mentally then get Patrick Walsh's 3rd edition of "Guide to Surviving Prostate Cancer"..Get the book anyway!! Most members here consider it the "bible" for PC...
Watch what you read on forums! The information gleaned is from non-professionals and can get you in trouble..After the 2nd read of your biopsy slides, get a 2nd opinion from a doctor that is highly rated...Although I am a radiation man, at your tender age many on this forum are having "robotics"...Here again, AS is an excellent choice but if you think you will wind up in a mental ward and want the damm thing out then do it..Really, your stats are about the best I've seen here..So, can I say congratulation?? You will do fine.
Bill
Posted 4/5/2013 5:56 PM (GMT 0)
John,
Lots of great advice to be found here. I would especially second John T's cautious and careful approach to the information you've just been given. Not to minimize, but there is the idea beginning to creep into the conventional wisdom that low-volume, low-aggressiveness PC shouldn't be considered "cancer" at all, that it should be given another, not-so-scary name that reflects the low risk it poses to health and survival. The first reaction to the news is typically: get it out now, every other consideration is secondary. But the reality is that you are in the enviable position of perhaps never having to actually treat your cancer, that it will just sit there where it is until you die of something else. And all of the treatments carry a price tag to one extent or another, educate yourself thoroughly about those. Above all, know that you have much time to make decisions, your condition is not a threat now and perhaps never will be. Read this forum daily for widest possible exposure to information from those who have gone down all the various PC roads and have much to say about it; question everything you are told by your docs; and most of all, best of luck to you.
Henry
Posted 4/5/2013 5:57 PM (GMT 0)
Thanks everyone.

I do feel better (but the grief comes in waves...). I did not realize, or maybe it did not register, or maybe my doctor did not make it clear, that my cancer appears to be very manageable. I've started looking at stuff online but the quality of the information varies widely with a lot of advertisements (geese). I also downloaded the Walsh book and started reading it. Lots of good information there.

My wife had a big presentation/meeting at work today and I didn't want to impact her with the news, so I will tell her this weekend. Luckily, my kids (6, 13, and 17) are all out of town with friends or relatives for Spring Break. I'll tell the older two next week. Not sure I'll tell the little one.

I will come out swinging on Monday.

Thanks again,

John
Posted 4/5/2013 6:07 PM (GMT 0)
John,
Any grief on your part at this point is, though natural, EXTREMELY premature and unnecessary. The odds are overwhelming that this is something that will never kill you, and very strong that it is actually something you will never even have to do much of anything about!
Posted 4/5/2013 7:29 PM (GMT 0)
Thanks, Phenom.

I'll keep you all posted.

John
Posted 4/5/2013 7:35 PM (GMT 0)
DonaldJ, Our numbers are very similar. Best of luck to you on 4/8. I'd love to hear how/why you made the decision for surgery. I heavily leaning in that direction but I've done very little research on alternatives so far. I'm still in the "I want the darn thing out" stage.

Again, all the best.

I would say I'd pray for your full, and speedy recovery but that might not be appropriate so I won't say it. (that goes for all of you!)

John
Posted 4/5/2013 7:41 PM (GMT 0)

Buddy Blank said...
Hi Charlie,

Welcome and sorry for the cancer diagnosis. It is a stunner isn't it?

Gleason 6 isn't that bad. It can be treated with any of the treatment modalities.

You won't need another biopsy but getting another pathologist to look at the specimens is something men do. It can't hurt.

If I were you I'd read and educate myself on your options and not rush into any treatment. I'd make appointments with surgeons and radiation oncologists. With a Gleason 6 many men can also do active surveillance - that is something you and your doctors have to decide.

What has your PSA been doing over the years?

Buddy

Hey Buddy, my PSA was 6.18 18 months ago and it is now 6.5. So that's .32 in a year and a half. they say .75 is cause for concern.

How is your treatment going?
✚ New Topic ✚ Reply
12