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Posted 4/22/2013 5:08 PM (GMT -5)
I'm 47 years old with 3 children; happily married and very active. I just learned I have prostate cancer. I'm trying to stay calm, but my head is spinning. PSA 6.1 with Gleason of 3+3. Dr. told me a needed surgery (no brainer he said). I'm in the Boston area and I guess I need to get smart fast and find the best surgeon/specialist. Any suggestions?
Posted 4/22/2013 5:17 PM (GMT -5)
Hi John. Sorry you have to be here but welcome just the same. First things first. Take a deep breath. Relax. At a Gleason 6 you are classified as low risk so you have time to think, educate yourself and make the decision that is right for you.

I am not nearly as knowledgeable an many of the other folks on this board but can tell you that surgery is just one option open to you. Radioactive seeds implanted in the prostate is another option. Active surveillance is also an option at Gleason 6 but at your young age, I would think that is not what you will end up choosing.

I will let the other smarty-pants on the board give you more details but wanted to reply quickly so that I could help to calm you down as soon as possible

Ask questions all you want - someone on the board will know the answer

Nancy
Posted 4/22/2013 5:52 PM (GMT -5)
John, another 40 year old here with children.

You are going to be fine, I promise you.

Although I would have surgery in your shoes, you have many more options to weigh and balance against each other. All of them will help you beat this in all probability. So take a deep breath and wait for everyone to chime in here.

Seriously, you are going to be fine.
Posted 4/22/2013 5:56 PM (GMT -5)
Whew! Take a breath. That's bad news and will change your life but it isn't anything that needs to happen right now. With those numbers and with your age you have time to get slides read again, talk to several drs with different specialities. Gather information about all the different treatment choices, there are quite a few. Then once you have gather all the info you can look at the pros and cons, look at the side effects and decide what is the best choice for YOU. Do not allow one dr to tell you you have only one option, that is not the truth. Prostate cancer is different for each person and so if the treatment you decide on. Gathering this information is going to boggle your mind, I suggest you take notes, have someone attend appts with you so they can keep notes. Ask lots of questions. But do not be pushed into a treatment you are not comfortable with

I know you feel scared and overwhelmed and like you've been punched in the stomach and these are all valid feelings. But take a breath and slow down. Start gathering info and come here with questions We will always be here to help however we can

Hope this helps in some small way
Susan
Posted 4/22/2013 6:18 PM (GMT -5)
How many cores were positive and what percent? You may be a great candidate for active surveillance (AS). Most PC is insignificant and indolent -- if you leave it alone nothing much will ever happen. 70% of men who go on AS are still on it 5 years later. That should reassure you at least that you can be comfortable in making a well-considered decision and not rushing into things.
Posted 4/22/2013 6:25 PM (GMT -5)

Tall Allen said...
How many cores were positive and what percent? You may be a great candidate for active surveillance (AS). Most PC is insignificant and indolent -- if you leave it alone nothing much will ever happen. 70% of men who go on AS are still on it 5 years later. That should reassure you at least that you can be comfortable in making a well-considered decision and not rushing into things.


Allen I feel tat that is such a dangerous post on your part.

Most pc is insignificant and indolent? Why don't you let an actual medical professional tell him that.
Posted 4/22/2013 6:31 PM (GMT -5)
I'm just reporting the facts as are available to anyone, not just doctors. One doesn't have to be a medical professional to report statistics. This is based on cadaver studies and more lately on tracking studies on the natural history of PC progression.
Posted 4/22/2013 6:37 PM (GMT -5)
Allen, that kind of stuff is for his doctor to tell him in my opinion.

"if you leave it alone nothing much will happen" is not something we should be here saying. You actually put the owner of this site in trouble with such statements.

There are also plenty of people with what could be classified as indolent cancer who later found out they had a G7. One among us who joined not long ago.
Posted 4/22/2013 6:39 PM (GMT -5)
Smartypants, wow that kinda smells………..
Posted 4/22/2013 6:49 PM (GMT -5)
John:

Welcome to the club no one wants to join ... and sorry you have to be here.

You've got the right attitude: get smart fast. That'll carry you far. A book that covers your situation pretty well is "The Decision" by Dr McHugh; that and Walsh's "Guide to surviving Prostate Cancer" will get you well armed with information.

The decision you'll face is whether to choose surgery or 'seed' radiation; or perhaps to wait a little bit first. All three are honorable choices; you'll find that certain doctors specialize in certain solutions and tend to recommend that option. How it affects you and the chances for certain side effects are what you need to consider.

So it's important to get other opinions; talking to both radiation oncologist ('seed' guys) versus Urologists ('surgery') and even those who specialize in 'active surveillance' . Others will chime in for sure.

You're in a good spot--time to make a good decision, caught it early, and in Boston you have a lot of world class options (starting with Dana Farber).

Regards

Ray

PS I live out in the Berkshires, at least part of the time ... and used to work at Post Office Square. Boston is a great f'n city, especially this week.
Posted 4/22/2013 6:59 PM (GMT -5)
davidg,

I obviously disagree. I'm not practicing medicine, just quoting statistics available to anyone. In fact, I think that too often doctors don't tell their patients this simple fact and rush them into unnecessary treatment. So I don't think it's a good idea to leave it to doctors to tell patients this vital piece of the puzzle. It has become common knowledge that PC is overdiagnosed and overtreated. This has been well hashed over in recent years since the USPSTF recommendation against routine PC screening. While I disagree with their conclusion, their premise is, I believe, irrefutable.

I think it's important to appreciate the difference between statistics and anecdotes. Statistics can only provide group probabilities and can never predict for the individual case. An anecdote - the kind of example you cite - is only true for that individual and doesn't provide any incite into expections for people like "us."

If you would like references for my assertions, I can easily provide them. Do you have any evidence that what I said is incorrect? I would love to see it.
Posted 4/22/2013 7:01 PM (GMT -5)
tall allen, while I admit you are very knowledgable, you come across often in your posts as sounding too dogmatic in your findings. makes it sound like you are giving exact medical advice, which is not the place of any member here at HW, including myself. you might want to re-think how you give advice here in general, to a new member, sounding too much like a professional opinion, which in my opinion, should only be given by our member's doctors.

as far as considering AS in this case, it very well might make sense, but we come full circle in the AS debate, look at the number of men here alone at HW whose "indolent, harmless, slow moving" Gleason 6 diagnosis get upped to a Gleason 7 or higher after surgery. the whole trouble with the biopsy dx, is that at best, it is just an estimate.

respectfully,

david in sc
Posted 4/22/2013 7:07 PM (GMT -5)
Allen:

This is a peer to peer group.

You are telling someone new here, who introduces himself as someone who is "freaking out" that:

1 - Most PCa is insignificant
2 - Indolent
3 - If he leaves it alone nothing much will happen.

Now, I am positive that the OP will do fine with any treatment he picks. Given what we currently know of his statistics even starting out on AS, a serious AS program, could work for him assuming he is the right candidate both physically and mentally (another thing you don't know). However, the three things you said that I mentioned above are dangerous and bad advice in my opinion. those are really things for him to explore with his doctor and any future experts he will hopefully seek out for further advice. You cannot know that those apply to him and I believe you also put the owner of this site in jeopardy with such statements.
Posted 4/22/2013 7:17 PM (GMT -5)
Sorry you were diagnosed with cancer.

I think the best thing you can do for yourself now is to educate yourself. Folks gave you good reading advice - I'd start reading. Ask questions.

Don't rush a decision on what to do.
Posted 4/22/2013 7:18 PM (GMT -5)
John,

Welcome to HW PC. Sorry you need to be here, but you found a great source of support and information.

The best way you can overcome any fear you may have, is by learning all you can about PC, and about the various primary treatments ahead of you. Of course, many urologists are also surgeons, and quickly recommend surgery. But you should at least talk to a good radiation oncologist, or perhaps a good general oncologist with extensive PC experience, and learn all your treatment choices.

You could very well do with some type of radiation, or perhaps practice AS, working hand in hand with a good doctor. A Gleason 6 diagnosis is a much better place to be dealing with this type of cancer, than any Gleason 7 or higher.

You definitely do not need to feel pressured to make any kind of instant decision. All treatments come with risks and side effect potentials, so you want to choose wisely, as there isn't any "re-set" button once you make your treatment choice.

Feel free to ask all the questions that come to mind, we are here for you, all the way.

david in sc
Posted 4/22/2013 7:21 PM (GMT -5)
david in SC,

You are right that I hold strong opinions about unnecessary treatment. You see, I belong to a prostate cancer support group, and am heartbroken over all the men I've gotten to know who are in such distress from the side effects of treatment and regret over choices hastily made. If I can provide information that may help a man decide to avoid unnecessary treatment, I consider it a good day.

You and davidg seem to think I am advocated doing nothing. I'm not. Active Surveillance is not doing nothing. If, through Active Surveillance, a man finds his cancer to be indolent and insignificant (as most are), then "doing nothing" may be his best option. AS involves constant monitoring through biochemical indicators, DREs, imaging and biopsies. It is not for everyone -- some men feel uncomfortable "doing nothing." Others may be grateful for the extra years of symptom-free living.
Posted 4/22/2013 7:26 PM (GMT -5)
allen,

please don't group me in like that. I acknowledged from what you wrote, that AS might be appropriate, might be. But that is for a doctor to decide, not members on a peer-to-peer support site such as this.

I even included AS in my remark to our new member John. I don't consider AS doing nothing, not if it is done correctly in conjunction with a good doctor experienced with it.

In my current situation, with both failed surgery and radiation, my oncologist and I are practicing a form of AS at this time, with him not recommending any advance treatment, as my PSA continues to creep upward of 40. This is why he wanted the recent PET scan done, to make sure there wasn't any early sign of mets popping up in me, which would have been a game changer.

My problem isn't in the facts being presented, but in how it comes across to people, especially to those new to PC, our best advice will never replace that of the patient's doctors.

david in sc
Posted 4/22/2013 7:28 PM (GMT -5)
I highly recommend Dr Mohinzadeh at the Lahey Clinic. Very skliled at davinci surgery and nerve sparing.

But a 3+3 is not too bad, not aggressive. You probably have options of radioactive seeds or focused beam radiation too.
They ALL have side effecs, study well before choosing.

I am 58, and decided to have the surgery to get the darned thing out of there.  Too young to just wait and chance it spreading to the rest of my body.  If I were 68, I might have chosen differently.  You at 47,  if you wait long enough without doing anything, you probably have good odds to die of the prostate cancer.

As I am sure you already heard, if you have the surgery and I does not get it all, THEN you can still have follow on radiation.  You can not do it the other way around.

But seriously, with the surgery comes months of wearing diapers and NO sex for a long time (BTW, get laid as much as you physically can over the next few months!). 

Post Edited (spanz) : 4/22/2013 6:35:31 PM (GMT-6)

Posted 4/22/2013 7:28 PM (GMT -5)
great, a crusader against treatments that have helped so many of us. You have any idea how patronizing that is?

You do nothing but harm in my opinion when you tell someone that what his medical professional(s) are advising is nothing but dubious advise that leads to treatment that isn't needed. You are not a doctor or here to act as the forum doctor dispensing such delicate medical advice.

The potential side effects of any treatment are widely known to us and soon to others that seek treatment and advice. And there are a ton of us with no side effects or minimal ones.

You love statistics, did you tell John that top notch surgeons claim to have ED and incontinence success rates in the 80s?

Everyone in this thread has told John that he will do fine and has many options ahead of him, you however took it to an entirely different level.

Why is it that some AS proponents are so pedantic about their personal bias while the vast majority of surgery and radiation folks always greet newcomers pointing out the potential benefits to multiple forms of treatment including AS?

Post Edited (davidg) : 4/22/2013 6:32:51 PM (GMT-6)

Posted 4/22/2013 7:29 PM (GMT -5)
davidg- what I actually said was:

"Most PC is insignificant and indolent -- if you leave it alone nothing much will ever happen."

I was describing what insignificant and indolent means, not telling him he has insignificant and indolent cancer. It seems you misconstrued what I said and took it out of context. Perhaps I should have replaced the word "you" with "one," but that always sounds a bit pretentious to me.
Posted 4/22/2013 7:30 PM (GMT -5)
John,

Post Edited (GOP) : 4/22/2013 7:02:38 PM (GMT-6)

Posted 4/22/2013 7:38 PM (GMT -5)
John - sorry about the direction this thread has taken.

You really seem to have very favorable stats insofar as giving you a lot of different treatment options including AS.

There are some great books you can buy, The Walsh book being the best in my opinion, and you can learn a lot more about this by visiting a radiologist, an oncologist and perhaps another surgeon or two.

You've just started your journey, this is the low point. You'll be doing a lot better soon. This is not a death penalty by any stretch of the imagination. There are folks here with far more aggressive cancer than you or I have who have been fighting and winning their battles for a very long time.

You are realistically looking at a cure base don the stats you have provided so far.
Posted 4/22/2013 7:44 PM (GMT -5)
I agree, the Walsh book, Surviving Prostate Cancer, 3rd revision, is still one of the best one-volume works on prostate cancer (not saying the best or only book), but pretty well covers all things PC.

Worth getting either from your library or online.

david
Posted 4/22/2013 7:46 PM (GMT -5)
Hi John, makes sense to get a second opinion and explore all options. I had secondary treatment, salvage radiation, at Brigham and saw both a medical oncologist and radiation oncologist at Dana Farber. They are both top notch facilities. If your insurance allows, take advantage of the best treatment you can get. I understand that Mass General is also top notch. Best of luck. BB
Posted 4/22/2013 7:50 PM (GMT -5)
I have to agree with Tall Allen. Do the maths yourself. Autopsies reveal that the incidence of prostate cancer is roughly in line with age. Let's go with a lower level ---- 40% of men aged 50 will have some evidence of prostate cancer (i.e. 40 out of 100). That cancer will overwhelmingly be 3+3=6 at that age. But only 3% (3 out of 100) of men will die with prostate cancer as the cause of death. That essentially means that 3 of that 40 will die from their prostate cancer ---- this of course is based on no treatment at all. What do you assume happened to the other 37 cases? Well of course nothing happened to them so far as the prostate cancer was concerned --- they eventually died of other causes, hopefully in old age, meaning that in the majority of cases PC is indolent. This is not pushing any barrow just stating facts. This does not advocate ignoring a diagnosis but rather advocates making an informed decision based on understanding the disease.
Bill

Post Edited (BillyMac) : 4/22/2013 6:59:27 PM (GMT-6)

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