HealingWell
Search Close Search
☰

Not sure where to start

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/18/2012 1:35 AM (GMT 0)
I admit I'm still in shock. I'm 44 years old, and I found out friday that my biopsy came back positive. I went today to consult with my urologist, and got what I think is good news, but also have a huge decision to make.

Let me back up a minute. I'm having a hard time organizing my thoughts, so I apologize if this seems a little rambling. I'm 44 years old. Two years ago, I had a PSA that came back high (for my age). It was 1.7. My urologist did a biopsy, and it came back clean. Last year, my family physician did a routine physical with a PSA, and it came back 2.3. He mentioned it being high, and I told him it was okay because I'd just had a biopsy that came back fine.

Fast forward to this March. I had another PSA with my urologist that came back 2.6. He put me on antibiotics for 10 days and retested. This time it came back 2.1, so he did a biopsy, which I found out Saturday was positive.

Talking to him today, he said that 1 out of 28 samples came back positive. An adjoining sample came back suspicious, but not a confirmed positive. He told me I was a G(3+3)...still trying to figure out exactly what that means.

Anyway he said that, considering my age, there are only 2 things he recommends...surgery or radiation. Of the two, he seemed to strongly recommend radiation. He did say that most radiologist won't do radiation on someone my age because of the risk of later tumors caused by the radiation, but that he can find one who will. He seems really concerned about minimizing the side effects and told me that in his opinion, my chances of recurrence, considering the small size of my tumor and the fact that he really doesn't believe it has spread, are about the same between the two.

I'm really torn. My first impulse, considering my age, is to say 'take the darn thing out and forget about the side effects'. However, I don't want to go with a knee-jerk reaction. The thought of surviving only 10-15 years terrifies me. My wife and I want to grow old together, and 60 is NOT old. I'm worried about surviving 15 years only to get another form of cancer from radiation. If I were 60-65, I wouldn't worry nearly as much about it.

I'm sorry. There's not really a question in this. I guess I'm just saying hello and stating my situation in the best way I can at the moment. As I said, my thoughts are all jumbled right now.

Charles
Posted 4/18/2012 1:56 AM (GMT 0)
We've all been where you are right now and I know that it's not fun. Firstly, you should realize that with Gleason 6 in one sample out of 28 that you have plenty of time to make an informed decision and should not be pressured into anything without getting several opinions. I'm absolutely amazed that they took 28 biopsy samples from someone with a PSA of 2.1. Usually, absent other symptoms or a family history, that PSA level wouldn't have even been high enough to rank a biopsy (which is typically 10-12 samples) let alone one taking 28 samples.

I would suggest having your biopsy slides retested at another lab. I would also check out several books on prostate cancer from the library (preferably ones with a variety of viewpoints). And other than this site, which offers great advice and support, I would suggest you check out the Yana website (Yana.org). It was a source of comfort when I was first diagnosed.
Posted 4/18/2012 2:09 AM (GMT 0)
Charles,

Welcome to the forum. I'm sorry you need to be here, but you landed in the right place. There's more information and support available here than you'll get from a dream team of doctors.

I won't try to advise you about treatment, but it sounds like you have some homework to do. It also sounds like you have a very early cancer. Gleason 6 is about as good as it gets, which means you have an excellent long-term prognosis. It also means you have both both time and options. I suggest you take your time and educate yourself.

I recommend that you pour through the threads here. There's a wealth of information available. Get a copy of your pathology report and ask questions about anything you don't understand. Check out the websites of the leading cancer centers, particularly Johns Hopkins. There's some good stuff there, including some very informative videos. Finally, I recommend the Prostate Cancer Survival Guide by Dr. Patrick Walsh. It's the bible.

You should know there are several radiation options. Before you write off radiation, make sure you know about them. I suggest you not only see a urologist, but also a radiation doc and a general oncologist. You'll get three distinctly different perspectives, which I think will be useful to you. Don't underestimate the side effects of treatment. They're real, they affect many patients, and they're a real drag. Pick your treatment carefully; you won't get a do-over.

Pick your doctor just as carefully. Any treatment course you pick will require an outstanding doctor with significant talent and experience. This is complex stuff, and excellence matters greatly. I don't know where you live, but try to get to a center of excellence if you can. You don't want a surgeon who's done a couple dozen of these surgeries; you want one who's done hundreds of them. It matters.

I know some of this isn't what you wanted to hear, but hang in there. This is both survivable and tolerable. You have some adjustments to make in life, but you'll get through this. Please let us know what you decide and how you make out. There are a lot of cool people here who are both knowledgeable and supportive.

Best,

Jonathan
Posted 4/18/2012 2:11 AM (GMT 0)
Thank you for your advice. My urologist is supposed to be one of the best in the state, and he's not one to take any chances, hence the abundant samples. However, I admit I'm a little concerned that he recommends radiation knowing that most of the radiologists he knows won't do it on someone my age. I guess that would leave them recommending surgery, which I admit is my knee-jerk reaction - just get it out. I just want to make sure I make an informed decision on something I'm going to have to live with (hopefully) for another 30 years. That's my goal, anyway, but reading statistics from the American Cancer Society, etc, has me really discouraged. I'm reading all the posts here and searching for any information I can find.
Posted 4/18/2012 2:12 AM (GMT 0)
Oh yeah, I meant to add that I'm adopted, so I have absolutely no family history to fall back on.
Posted 4/18/2012 2:15 AM (GMT 0)
Charles,

Welcome to Healing Well.  You have made the best decision so far by coming to this site.  This is one of the best places for information on PC and getting support.

You have a small amount of cancer and you are a Gleason 6.  These are very good things and it's going to be ok.  Just doesn't seem so at the moment.

Take a deep breath and relax. Learn all you can, ask lots of questions, get a few opinions from credible doctors and make a reasonable decision.

I was also diagnosed at 44.  I understand how you feel about being so young...but, you will be around a long time for your wife to yell at you.

Hang in there and keep us updated,

Jerry L.

Posted 4/18/2012 5:16 AM (GMT 0)
Charles,
Prostate cancer is not all the same; it ranges from a ***** cat to a tiger and yours is a kitten. You have lots of time, even years, before you have to do anything, so take your time.
I'm not a big fan of focal therapy, but given your low number of cores and low grade it may be something to look into. It definately has the lowest side effects and Ziggy may want to chime in on this because he is the only one on this forum to have focal treatment and it has worked well for him.
It use to be that radiation was not recommended for younger men, but that has changed due to the newer technology. Brachytherapy would be an excellent option as it has the least side effects other than focal treatments and should be investigated. The latest studies that go out 20 years show very little difference in secondary cancers for radiation as opposed to surgery patients.
You can also choose to watch your cancer to see if it does progress and treat it on any signs of progression as delayed treatment has similar results to immediate treatment in low risk cases and may buy you a few years. Basically you have every option available to you and the time to carefully research all of them.
Two books you should definately read before making any decision are "Surviving Prostate Cancer" by Dr Walsh and "Invasion of the Prostate Snatchers" by Mark Scholz, which is an excellent reference for low risk cancer patients.
JohnT
Posted 4/18/2012 5:18 AM (GMT 0)
Welcome and sorry you need to be here. First, yes it is overwhelming and does feel like getting hit by a truck. You've got the time to make a good decision for you. With your numbers you have a lot of options and a very good chance of beating this.

Right now take some time to let your emotions settle a bit and do your research. Ask lots of questions and do get a second opinion.

My numbers are a bit higher than yours and I choose radiation for my primary treatment. I am few years older than you but I've got some other health issues that ruled out surgery. Still I've been mostly happy with my choice. One of the problems in choosing is that sometimes there is no clear "better" choice. There are days I second guess myself and think that I could have made it through surgery just fine and other days I am glad I went the radiation route.

I am sure you'll be around a very long time after this is over so take care of yourself. There are a lot of good people here that can answer your questions.
Best,
Andrew
Posted 4/18/2012 11:20 AM (GMT 0)
cwren - I can't help but be troubled by the way your process has unfolded. Autopsy studies on random accident victims has shown that 27% of men in your age group have some degree of prostate cancer. However the chances of a man dying of prostate cancer is 3% at a median age of 80.

http://www.standardofcare.com/mwiki/index.php?title=Prostate_cancer

Now usually this prostate cancer in this 27% of men is very small and would be undetectable from the standard 12-core biopsy procedure. And usually a biopsy wouldn't even be done on someone your age group who is lacking physical symptoms, with a PSA under 3 and no clear family history. You didn't say the percent of Gleason 6 cancer found in that one core but I suspect it is quite small - probably between 5-20%.

Now here's the thing. You urologist has ordered what is called a saturation biopsy (more than 24 cores). Biopsies are relatively safe, but not a risk-free procedure and it is highly unusual to subject a man with your stats to this type of biopsy. If we did this on all men in your age group the chances are quite high of showing positive results close to the 27% number found in autopsies.

Could you imagine if we removed the prostates of 27% of men in their 40s?

Unfortunately now you have a very complicated decision. But I would urge you to seek further professional advice than your current urologist.
Posted 4/18/2012 12:04 PM (GMT 0)
Take a breath, take your time and educate yourself. You are going to be okay. You have many options available to you including AS. Consult with the best urologists and radiation doctors you can find. Take your wife with you on appointments and ask her to document everything she can. It's easy to think you will remember what the doctors say, but you will not. Start a journal and write down everything. You can read what I went through by clicking on the link in my signature. You found a good place here. Ask any questions you want to.
Posted 4/18/2012 1:30 PM (GMT 0)
CWren -

I ditto everyone's comments about taking your time and the low grade of your current disease. but the reason I wanted to chime is to note 1) Kuddos to your docs. My docs were not so alert when my PSA started rising at the age of 42 and didn't tell me about it until it hit 9.7 at the age of 49. In the intervening 7 years the PC has spread and I now have bone METS and my prognosis aint so hot. I agree that 60 is NOT Old, I'm just hoping to get there. 2) Given what I just said above - while you can take some time, dont be derelict. Monitor closely and dont be afraid to take action if and when it becomes appropriate.

As between surgery and RT - I make it a practice not to dispense medical views on this forum (for a lot of reasons). but I have had both. yes surgery will change you life forever but you get the cancer out before it spreads. RT for me had minimal side effects (but it didn't work as my PC had spread by the time I did RT).

best of luck
Posted 4/18/2012 1:54 PM (GMT 0)
cwren,

I would venture to say that all us PCa guys "hit the wall of shock" when we are given the news by our urologist. I know I did just like you. Gaining control of your worrsiome anxieties and management of your PCa journey is a process of educating yourself with as much of the relevant information as possible.

Two great books that really helped me understand to make confident decisions on my PCa. Really valuable must reads for you. Check you local library, that’s where I sourced them out.

Dr Peter Scardino's Prostat Book, Revised Edidtion - from the famous Memorial Sloane Kettering Hospital in New York - also extremely valuable is their corresponding website - http://www.mskcc.org/cancer-care/adult/prostate and check out their "multimedia" links at http://www.mskcc.org/cancer-care/adult/prostate where there is a host of relevant video's presented by their team of urologists and oncologist on choices / options - very powerful learning.

Dr Patrick Walsh's Guide to Surviving Prostate Cancer- from the world famous Johns Hopkins University - their corresponding cancer center website - http://urology.jhu.edu/prostate/cancer.php - review their site but be sure to watch the interview with Dr Patrick Walsh at this link - http://www.charlierose.com/view/interview/9016 - given your low gleason score and 1 core of 28 I would think you are a prime candidate for active surveillance, make sure you understand this option well by viewing these links http://urology.jhu.edu/prostate/advice1.php also under the audio resources and listen to the interview with Dr Ballentine Carter on active surveillance. This isn't for everyone, but you will see in my signature I optioned for AS. Your G6 low grade low risk PCa from your first biopsy sets the baseline for tracking your PCa. AS won't cure your Pca but monitors it through PSA and biopsy testing protocols and when there are changes you move forward to cureative treatment options of your choice at this time. It is individual choice. Certainly for your benefit understand AS options. I know a good freind who optioned for AS with low grade PCa as you have and his PCa stayed low grade G6 for nearly 4 years before going to G7 at which time he moved to cureative surgery. I will point out this option is not for everyone, emotionally knowing the PCa is still there and the mindset of just getting it out prevails.

In summary as others here have mentioned, you do not need to be in "panic mode" and be "knee jerk reactive" as to what to do, as time is on your side for you to learn about all of your options. Stay with us here at the forum on any and all questions and concerns you may have. The experience and compassion here amongst your brothers is unbelievable.

Wishing only the best success with your new journey.

Terry

 

 

Posted 4/18/2012 2:09 PM (GMT 0)
John T said...
Charles,
Prostate cancer is not all the same; it ranges from a ***** cat to a tiger and yours is a kitten. You have lots of time, even years, before you have to do anything, so take your time.
I'm not a big fan of focal therapy, but given your low number of cores and low grade it may be something to look into. It definately has the lowest side effects and Ziggy may want to chime in on this because he is the only one on this forum to have focal treatment and it has worked well for him.
It use to be that radiation was not recommended for younger men, but that has changed due to the newer technology. Brachytherapy would be an excellent option as it has the least side effects other than focal treatments and should be investigated. The latest studies that go out 20 years show very little difference in secondary cancers for radiation as opposed to surgery patients.
You can also choose to watch your cancer to see if it does progress and treat it on any signs of progression as delayed treatment has similar results to immediate treatment in low risk cases and may buy you a few years. Basically you have every option available to you and the time to carefully research all of them.
Two books you should definately read before making any decision are "Surviving Prostate Cancer" by Dr Walsh and "Invasion of the Prostate Snatchers" by Mark Scholz, which is an excellent reference for low risk cancer patients.
JohnT



Since John brought my name was brought up I decided to give you the link below and advise you to watch the 3 part video. Not only does it explain my TFT treatment it's also an excellent video primer on prostate cancer and all the options you are looking at. First of all take a deep breath and relax you have plenty of time to decide what to do. I'm not the only one to receive TFT here there is another.
http://3dprostate.com/
Posted 4/18/2012 2:45 PM (GMT 0)
cwren: sorry to see you here, but this is a great place for any newly diagnosed PC patient. Given the fact that it took two biopsies with the last one being a 28 needle test and a Gleason 6 path report with only one needle coming back hot, you have every option at your disposal including active surveillance. I ditto everything previous posters have said. All of us know how you feel, but do keep your cool. You've caught it very early so take your time and do extensive research before you act. Like other posters have suggested, I recommend you read some books. I would like to add to the previous suggestions two books. First, "The Decision" by Dr. McHugh and secondly "Saving Your Sex Life" by Dr. Mulhall. Dr. McHugh is a uro that is a PC patient. You also should look up Dr. Meyers videos. If you search this site you will find links to Dr. Meyers. Also go to utube and search for Dr. Mulhall. He has several videos on utube along with his great book. Other than information from the net put out by medical doctors, this site and previously suggested sites, be wary of stuff you will run into on the net. For example, I've heard that the Davinci people pay bloggers to pose as PC patients to artificially promote the Davinci robot.

I'm a typical PC patient who is almost 60 years old so I cannot relate to what it would be like to come down with this "old man's disease" in the 40s. Something that I’ve noticed is the younger you are the quicker you recover from the side effects of surgery. The ed rates are lower for you youngsters and you seem to recover from incontinence quicker. Keep in mind that you have a long life ahead of you and you may need several treatment tiers to outlive this disease.

Best wishes
Posted 4/18/2012 3:46 PM (GMT 0)
I admit that I don't know why he did 28 samples in my biopsy. He's a 'take charge' kind of guy, so maybe he was just being cautious. Or maybe it's because my last psa with him (2 years ago) was 1.6 and this one was 2.3. I just don't know. I'm trying to figure out how to get a second opinion with another urologist as well as talk to a radiologist. Do I call my urologist and ask him to refer me? Or will he just refer me to another urologist who thinks the same as he does? I do trust him, but it's just human nature to do that.
Posted 4/18/2012 3:57 PM (GMT 0)
Your urologist should be well connected to oncologists strictly from the stand point that not all of his patients will elect for surgery, some will want to explore RT. I would simply ask him for his best oncologist referrals. He should understand your request to want to explore all of your options.
Posted 4/18/2012 4:38 PM (GMT 0)
Welcome friend! The good thing out of all of this is you are in the know,early detection is the best thing going for you,and I can't say it enough,you have time to talk to people and professionals,also the value of the forum is wonderful! Take your time and do what you think is the best for you,I should have taken more time and talked to more Uro's,I feel good about my decision but my surgeon's bedside was deplorable,this created a trust issue,so I still wonder about the nerve sparing,he even showed up late on the day of surgery,information from them was scarce!I willnot go back to him allthough his PA made up for his errogance!You are still dealing with the news so just get as much information as possible,get as many people involved as needed until you are confident as to what will be best for you,remember everyones situation is different,so stick with professionals,the forum is a guide and another source of information but just that.
Prayers for you
gams
Posted 4/18/2012 4:39 PM (GMT 0)
cwren, we have a lot in common. I'm 42, adopted, and in otherwise good health. Yearly physicals caught it for me. Questionable DRE in July 2010 lead to my first PSA: 2.7. No referral, altho, I probably should have been. July 2011 physical revealed questionable DRE another PSA... 3.8. Referred to urologist. I didn't like him. Found my own at Hopkins. I live in Baltimore. DRE with doc at Hopkins... nodule. F@#K!!! Biopsy scheduled. Positve. G6.

Considered, at urologist's direction, seeds. Didn't like the potential of later cancer, so I opted for open surgery at Hopkins. I was diagnosed in August and had my surgery the first week of Nov. 2011. The catheter was terrible and borders on a Medieval torture device. Once that was out there was general leakage for a day or so and then subsided to almost nothing within a week. This is not always the case as you will read here.

ED is still a work in progress. Viagra does the trick for now, but I'm hoping that the future brings me completely back to pre-surgical ability. We'll have to see.

Pathology from surgery remained G6, organ confined, no lymph node involvement or seminal vesicle involvement. Dr used the word cured after the surgery and again after my first zero PSA. I'll be convinced after a few years of zeros. Nevertheless, I wouldn't change a thing, other than not having it in the first place.

I chose surgery because I wanted the cancer out. I was happy that my surgeon worked in a major institution and, by all accounts, was skillful. I didn't like the idea of being exposed to radiation so young. I just felt I needed to keep that in my back pocket for another time. Hopefully there won't be another time.

ChrisR might chime in. There are a bunch of us younger guys here. Good luck with your decisions. Keep a cool head and after researching go ahead with confidence in what you choose.
Posted 4/18/2012 6:33 PM (GMT 0)
dude1969, you brought up another concern of mine that I forgot to mention (too many things going through my head right now). From what I've read, and my urologist agreed, if I do the radiation and it DOES come back, then surgery is much more difficult. While if I have surgery first, then I can more easily do the radiation if the cancer returns.

I'm not all that worried about ed. I've had some problems with it in the last few years (not sure if it's related to this or not), and take Cialis occasionally. I've been married for almost 22 years, and my wife is very supportive. She just wants me to do whatever will give us the best chance of growing old together. Plus, I suppose I could always get an implant or something if drugs quit working. The incontinence is more of a concern though.
Posted 4/18/2012 11:24 PM (GMT 0)
Having the option of salvage radiation is a reason often given in recommending surgery, except on closer examination it doesn't hold water. The reasons surgery fail is that prostate tissue is often left behind, in the nerve area, apex or micoscopic extension into the bed. In these cases salvage radiation works well. But if radiation will kill these cancers as a secondary treatment why would anyone not expect that radiation would kill these cancer cells when used as a primary treatment?
Pick the best treatment that will work the first time then you won't need a second treatment.
Posted 4/18/2012 11:45 PM (GMT 0)
the main reason I didn't want radiation was that I didn't like the idea of 35+ visits and the long term damage it could do to me. I actually know plenty of people, including some here, that have had issues related to the radiation. So it was in that spirit that I liked the option of only having to endure radiation in the probably unlikely event that surgery went badly. So it actually held a lot of water to me given what my personal preference was. I didn't like the option of radiation but would do it only if I no longer had a choice. Having a choice, I much preferred the option of surgery.

CWren - you'll be fine. I'm your age basically and I know what you're feeling. There can be some very dark days. I remember waking up the first few months without realizing I had cancer and then remembering it all over again. That empty feeling passes and I can tell you it gets better.

Good luck.
Posted 4/19/2012 4:32 AM (GMT 0)
John T's insightful analysis ignores all the folks that have surgery and don't recur...which hold water perfectly well. But his tired old tactic of calling a valid concern (especially for us 40-somethings) tired and old (because he's got a serious case of confirmation bias for his shiny new seeds) becomes tiresome. The fact remains - if you are a good candidate for surgery, opting for radiation is throwing away one arrow before you even start the hunt.

At a few years older than you, I researched the heck out of it and opted for removal. Don't be rushed, don't be railroaded, and go talk to some of those Rad docs that probably won't treat you, so they can explain to you and your wife (extra pair of ears is very handy - so is a recording if they agree to it) why they won't, if that is the case, and you can integrate that into your final decision, whatever it is. Going and talking to the one guy who will is not getting a balanced view...

Ideally, consider, and talk to several different doctors about (including your primary care doctor, if possible) all your options. You have plenty of time. On the other hand, you're not really a good candidate for "active surveillance" - last I checked, the guideline for that started at lower limit of 60 - and you have to filter a lot of other things (including the radiation options) though having 2 decades more than the "average" patient to consider.
Posted 4/19/2012 9:51 AM (GMT 0)
CWren,

I was very much in the same boat as you were a few months ago. In November, I was diagnosed with PCa @ 45. Very shocked, and shaken to the core, to say the least. I also was adopted, and didn't have the family history to rely on. I went back and forth on my treatment options, whether to have surgery or radiation. My uro would not recommend either option, leaving the choice ultimately up to me, although his preference was surgery. I spent countless hours researching and talking to different folks, and eventually decided on brachytherapy, which was done on 1-18-12. I liked the curative outcomes as compared to surgery, and the side effects profile. I am happily married and have an active sex life and a job that incontinence would cause alot of problems, so surgery seemed not in realm of thinking.

Can I ultimately say I made the right choice ? I don't know, but I made the right choice for ME. Only time will tell. My first PSA is down almost 50% in less than 3 months post procedure, and hopefully will continue to drop.

My Gleason was a 7, so I didn't have the option of AS, like you do...but, I probably wouldn't have wanted that option either.

Good luck with your decision and whatever treatment you select !

 

Posted 4/19/2012 10:16 AM (GMT 0)
Powelist, glad things are going well for you and I'm sure many different treatments offer CWren favorable outcome. Not sure why you think surgery isn't in realm thou... I also have a job were peeing myself would be frowned upon and I too wanted to continue to enjoy the benefits of sex. I had surgery and had no side effects that affected me in either of those realms.

I think some conservative statistics show 80% ability to regain continence and 50% without sexual side effects. Of course at our age, assuming we're good prior to surgery, those statistics get even better. In my case it was 100% for both. As for cure rate, which ultimatley is the most important, I believe Scardino claims an 85% cure rate in an online interview he has published.
Posted 4/19/2012 11:22 AM (GMT 0)
Dear Cwren:

First of all welcome to HW...sorry you have to be here but I expect you will find lots of information and support from the men and women who are members here.

There is a long running debate on this site as to which treatment is best, surgery, brachtherpay, IMRT, PBT, etc.  And, of course, everyone has their favorite.  Some picked their treatment after long and careful study; some were panicked and had to "get it out".  I would urge you to read many of the stories (frequently included as a link in the signatures) to get some broad perspective.

One of our most educated and knowledgeable posters is JohnT.  I would encourage you to read the responses he posted on this thread as I beleive they are excellent.  The only thing I would add to the advice he gave would be for you to consider getting another reading of your biopsy slides from an acknowledged expert such as Epstein at Johns Hopkins or Bostwick at Bostwick Labs.  With 1/28, you need to make sure you really have cancer...reading biopsy slides is an art and you should confirm your diagnosis before doing anything.

Good luck.

Tudpock (Jim)

✚ New Topic ✚ Reply
123