Just diagnosed

Hi All,
I just joined today. I am in terrible fear. I am 53, and my doctor just called 2 days ago and told me I have prostate cancer. He was very surprised himself. I went in a few months ago after passing some blood in my urine. My stream has slowed the past couple years so I hope I did not wait too long! He said my prostate is VERY large and thought it is BPH. He sent me for a CT scan for the bleeding and it all showed OK. Next appointment he used a scope in my penis and everything looked OK. He scheduled me for a biopsy. When he looked in with the scope, he said the biopsy is not urgent, but its up to me if I want to get it done, or just monitor my PSA. He feels its just BPA. He originally felt a lump but when he looked with the scope, its visible one way, but not the another (whatever that means) so he said that is a good sign. I chose to get the biopsy done and over with.
He called 5 days later and said I have cancer. 9 of the 12 samples tested positive. 5 of 6 on one side, 4 of 6 on the other. Gleason is 3+3=6. My PSA was 4.5 a few months ago, and 4.0 last test.
He is sending me for a bone scan because he said a couple things showed up on the CT scan that he wants to be certain are not cancer spreading. Something on my hip, and something on my rib, and a couple spots on my liver. The radiologist all listed them as benign and not serious, but he wants to check again.
I am so scared. I have a wife and 2 teenagers. I own a one man business that I will lose if I cant work. I came on here because it seems like most have experience and maybe can give your opinion on how I stand and any advice. If something shows up on the bone scan, am I done at 53 years old?
Thank you.
Tom

Hi Tom,
Yiu have found a great resource for everything about prostate cancer. There are a lot of guys here with tons of knowledge that will help you through this. Although your diagnosis is a G6 (usually low risk), your doc is doing the right thing by ordering more scans. If everything comes back negative, you will likely have lots of treatment options and this is where you want to educate yourself by learning what your options are, and the benefits and risks of each. You will want to balance the benefits and risks against your long term quality of life issues that you would like to maintain.

Tom, welcome to the club none of us wanted to join. My first suggestion is to read the two "sticky" threads at the top. One is a list of the terms and abbreviations that show up a lot here, and the other is information for the newly diagnosed.

G6 prostate cancer is far from a death sentence. The first suggestion anyone will make here is to have your biopsy slides sent off for a second opinion. The two best places are either Dr. Epstein at Johns Hopkins or Bostwick labs. All these guys do is read prostate slides, they are the global experts.

Second, understand that as a G6, you have many options, and you have time. Perhaps more time than you can imagine right now. Get the scans, even though as G6 it's unlikely they'll show anything. Spend your energy gathering information, because information is power.

Hang out here, read some of the other threads, feel free to ask questions....and understand that there aren't any dumb questions.

Tom, you have made a great first move by coming to this place. I'll tell you what others told me on my arrival here: go to the "Newly diagnosed" sticky at the top of the list of topics, and start to work your way through the steps, books, and websites listed there. This is not a simple decision path, and to the degree that you can take a breath, educate yourself, and communicate with others, you will do better.

I was precisely where you are three months ago, quickly located an excellent surgeon, and scheduled RALP. I'm a parent, and I told myself my job was to live as long as possible to be there for my kids. Then I learned more about refinements in various modalities, located better data on both biological control and side effects, and, though this may not be the right approach for you, I cancelled my surgery in favor of SBRT (though brachy is also in the back of my mind).

If the re-reading confirms your Gleason 6 (and you really need to have the slides re-read), then the chances of metastasis are indeed low. Nine positive cores aren't good news, but men in far worse shape than you have great outcomes.

There are many terrific and authoritative people here. Take a deep breath, take care of yourself, your family, and your business, and gather the tools to make the right decision for your cancer and for you.

Hi Tom and welcome-

I think knowledge will help allay a lot of your fear.

Start by reading the sticky on the front page:

Newly diagnosed with PC? – read this thread first

It also gives more info about getting a second reading on your biopsy slides from Bostwick or Epstein.

It may surprise you to learn that many of the top cancer centers offer the option of not immediately treating your type of prostate cancer, which is classified as "low risk." Instead, one has the option of monitoring it very closely using a program called "Active Surveillance." This has been found to be extremely safe with over 20 years of tracking men on it. It involves 3-4 PSA tests a year, and a repeat biopsy, preferably using advanced imaging for targeting, within a year. With your volume of cancer, however, I don't know how long you'd be able to stay on it. When I was in a similar situation (see my signature), I chose to have SBRT, thinking I would just get it over with. Knowing what I know now, I might have waited, but I want you to understand that you do have options and it's your decision to make.

For right now, it sounds like BPH is a big issue for you. That can cause urinary retention which can be serious. There are three kinds of drugs given for that:
1) an alpha-blocker (e.g., Flomax)
2) a 5 ARi (Proscar or Avodart)
3) Cialis (it's not just for ED anymore)

Taking Proscar or Avodart is a really good idea for someone on active surveillance especially, imho. It shrinks the prostate and reduces the PSA that comes from BPH (but not from PC). This makes PSA a much better indicator of PC progression. If the PSA fails to drop, or if it drops but then rises again, one suspects progression. It resets the baseline PSA, so you start over in tracking - but that's OK because your old readings were "polluted" and this is a "purer" reading. The other benefit is that by shrinking the prostate, it makes the cancer easier to find on a biopsy. The downside is that it can have sexual side effects in some men.

Please be assured that, given your current diagnosis, you do have time to investigate and consider your options carefully. Please read the sticky, and do not make any hasty decisions. With time, you'll be able to think more clearly about all this.

Welcome to HW, sorry you need to be here.

First you're not done for. Life will change, normal will shift but in 10 years this will all just be a bad memory with an annual anxiety attack when you get your PSA test. You have so many choices and every hope for a good outcome.

You've received some great input so far. It is a blow to the gut to get the call. Take some time to deal with the emotional hit. This is as much a mental game as a physical one.

Hang in there, do your research and ask any questions that you have. We're here most days.

Andrew

Here's what my bone scan and CAT scan said: I have a hiatal hernia, and I have bone deterioration in both shoulders and my left knee. Here comes the arthritis!

The likelyhood that you have metastatic prostate cancer at a G6...or even G7...is pretty much nil. Odds are that your second opinion on the slides will either confirm G6, or maybe move you to G7. Either way, you have choices, and they are all (relatively) good.

As Tall Allen says, you could likely qualify for an AS program. Or, if you chose to go for something more aggressive (a legit choice), you could choose one of several radiation protocols, or you could choose to have surgery. Either way, your chances of cure...and yes, the correct word is cure....are really good. If you're in otherwise good health (average cholesterol, no major issues, all your "parts" down below are fully functional), then your odds of coming out of treatment without major side effects are pretty high.

In other words, concern is required, but not panic.

Tom,

Welcome to the forum. You have already had some helpful replies from a number of members. Fear of the unknown can be overwhelming, but with knowledge and support it can be lessened. I hope you'll stick around for both. I've been at this forum for a long time and guarantee that it will help you in ways both small and large. All the best on your continued journey.

Wow, you guys are so great. The support is so helpful. I am so sorry you are all going through this too. But so glad to hear all the words of confidence. My Urologist is supposed to be very good. 2 different doctors recommended him. But he is very busy, and kind of rushes his explanation. But you guys have given me more insight than he so far. I do have a follow up to go over all my options Sept 14. My bone scan is Tues Sept 1.
Do you guys have advice on diet? I am in good health other than this. When I first went to my primary doctor because I saw the blood, he gave me a full physical and blood work. He said my blood work was outstanding as far as cholesterol, sugars, etc etc. He said it was really better than great and keep up whatever I am doing. But then the other shoe dropped and here I am.
Anyway, I read a lot about foods to eat and avoid. Surprisingly, I never have been a big meat eater, I don't eat a lot of fried foods or a lot of the major causes. And fortunately, the foods they recommend, I like, although I have not been regularly eating them. So do you think adding tomato, broccoli, tofu, red grapes, watermelon, etc can really help reverse it?
HAs anyone heard of the baking soda/molasses treatment...mixing the two twice a day. I know there are a ton of "quacky" things out there, so don't want to do anything that can make things worse. Also, apricot kernels I have been told are good cancer fighters.
I only saw the blood that one time when al this started in May. But yesterday and today it seems that my urine starts off orange for a brief second, then turns to yellow. I had the biopsy 9 days ago, and did not see any blood in my urine all week. Is it possible for this to be from the biopsy?
Thank you so much again for your help. God bless all of you.
Tom

island time said...
"If something shows up the bone scan, am I done at 53 years old?"

Something will show up on your bone scan...but I would be shocked if it were prostate cancer. I went through the EXACT same thing when I was diagnosed. There's all kinds of stuff that shows up on bone scans (esp. At our age). My radiologist kept using the terms "possible this possible that" only because he already knew I had PCa. In the end...it turned out that I was no different than any other G6'er out there. (No metastasis. My PCP's telling me that he sees "those spots" regularly. "But take the same scan again in 2 years and it's gone" really helped me thru that period of panic).

I also have flow problems and am on Flowmax. (Scary man..All this stuff coming to a head at once!). Some docs say I've got BPH and some say otherwise.

In the end, one just has to go with what one knows rather than what one fears.

Be cool man and hang in there. And trust me...Everyone here knows how much easier that's said than done sometimes.

Hang in there Tom.

Island Time.....when you said something will show up, I have a question. Like I mentioned, they did see something on my rib, my hip and my liver last time but they were dismissed as nothing to be concerned about. The scan I am getting is one where I am injected with some nuclear material or such. Then they do the scan a couple hours later. I was under the understanding that if there is cancer, it will "glow". No glow means no cancer. So my question is this. Can it still "glow" but still NOT be cancer?
Thanks,
Tom

Jack,
Thank you. You last line about feeling silly made me laugh and cry at the same time. I sure hope I am feely silly about it someday. I did read the post on the Newly Diagnosed and it was helpful. I guess my doctor is just being extra careful. I mentioned earlier, he is highly recommended, and in fact, he treated cyclist Lance Armstrong when he had testicular cancer.
Than you Jack, and everyone else on here for the support. I cant tell you how much it helps. I still feel a bit like there are hands around my throat, but at least after all your posts today, I can feel an airwave now!
Tom

compiler said...


We have had some heated discussions on the various treatments. You will find folks generally tend to push their own type of treatment.

C'mon, Mel, don't sugarcoat it. Tell it like it is.

On the subject of supplements/diet/fad "natural" treatments....

We've had a lot of discussions on these ideas, and we all end up with our own opinions. There are a few that can actually cause harm (selenium for example). Most have little proven efficacy and do little more than generate expensive urine.

Where I land is that diet may have some efficacy to prevent cancer from starting, and eating healthy will be of benefit during treatments to manage the issues from treatment. However, there is no data that I know of that actually show that diet or supplements can slow, stop, or cure cancer. There are a lot of claims out there, and nothing proven in real studies.

But, I'm just a random guy on the internet.