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Posted 12/30/2012 2:18 AM (GMT 0)
I was just diagnosed with prostate cancer I was told out of 12 biopsy samples 4 were 3+3=6
and 2 were 3+4=7 my PSA was 6.5. I was told this is considred intermediate. Has anyone taken the wait and see approach with this? I am also thinking about treatment but need time do I have time and how much time. startin a new job and was getting married in Feb.

Post Edited (ceaser212) : 12/29/2012 7:27:30 PM (GMT-7)

Posted 12/30/2012 6:20 AM (GMT 0)
Welcome to our corner of the world, sorry you need to be talking to us but it's a good place to be.

Take a deep breath - it's scary stuff but you've got time to make an informed decision. PC is generally slow growing so you've got a few weeks (possibly a few months) to decide but don't wait for too long. What you need right now is more information. You might want to start with Dr. Walsh's book, "Surviving Prostate Cancer" it's a good starter book. Others will post some good informative websites for you. I also just re-read Dr. John McHugh's book, "The Decision" which I also like. Now is the time to educate yourself on all the options.

Some other questions that might help us answer your question are: Did you doc tell you the clinic stage? (t1 or t2) What was the result of your DRE? How old are you?

The general thinking says you've got three basic choices: Surgery, radiation (beam and seed implants) and active surveillance (aka watchful waiting). To decide between them you should talk to a couple of doctors, a urologist and a radiation oncologist. Get a couple opinions.

There are a few folks around here doing AS (I have a brother doing that now) so they can tell you more. The key with "active surveillance" is the 'active' part. You can't just ignore it but rather monitor it and have decision points already set. You should be followed by a good URO and have regular PSA tests (even free PSA and PCA3 might be in the picture) - likely once every six months. Then you should have a trigger point in mind, like if the PSA goes over 8 (or how fast the PSA doubles is also a good measure). The problem is to delay treatment for as long as possible to avoid side effects but start treatment before the PC escapes the prostate. Once PC metathesizes their is little hope for a cure but there are plenty of palliative treatments that will keep you going for years.

You didn't mention your age - that factors in too. The younger you are the more likely you are to want to be treated. The older you are the chances of dying of something else are higher and the need to treat PC is lower.

I hope you've talked about this with your bride to be - it will be a big set of decisions. If you decide on treatment, things like seeds can be done in a day and may guys only miss a day or two of work. I did IGRT (beam radiation) and only missed a couple of days of work. Surgery has the longest recover period - likely you'd need a week or two off (depending on your current health).

Well, sorry for the brain dump but it's late and I can't sleep tonight.

Keep us updated on your progress and ask any other questions you might have.
All the best,
Andrew
Posted 12/30/2012 10:06 AM (GMT 0)
My stats were very similar to yours. See my signature line below. I was a mix of 3+3 and 3+4 with a total of 6 cores positive out of 14. Both my initial urologist and the specialist I consulted said that if you have any grade 4 present, active surveillance is a bad idea -- unless you are in otherwise poor health and don't have a long life expectancy or you have other conditions that rule out both surgery and radiation.

Many docs set quite strict conditions for active surveillance in the absence of severe comorbidities or very advanced age. For example, gleason no higher than 6, no more than 1 or 2 cores positive, no more than 10% positive in any one core. Opinions vary.

You do have some time. But keep in mind the best docs often have some lead time to schedule treatment. If you spent 1-2 months learning about your options, then got on the calendar for treatment you'd be treated in 3-4 months which is probably ok in most cases. If your PSA is going up very rapidly from last year to this year then you need to act more quickly. It's very important to understand the rate of increase so if you have PSA stats from the past few years take a look at them.

Post Edited (proscapt) : 12/30/2012 3:09:15 AM (GMT-7)

Posted 12/30/2012 11:53 AM (GMT 0)
It is not illegal (lol) for a patient to take casodex or other PCa fighting drugs while they wait to make up their minds or get opinions and more research....seldom is this mentioned but has been done by patients. It is a one way decision when you take action, so think it over and study it all, only you walk the walk and live with whatever side effects. I could make surgery alittle more difficult with shrinking the prostate gland.

Friend of mine was Dx in 1995-6 and did the bizarrre idea of only ADT3 drugs for 13 months and then quit, went on proscar for maintenance, so far even with recent biopsies no cancer is found. Doesn't mean his cured, he did buy all that time and can still do any protocol. He had some real gonads to make that decision I would guess, not saying that is good for everyone. Just pointing out how strange PCa really is. His psa was 11.0 back in 1995 and 2 cores found (would have been G6's with new guidelines). Your doc will not mention that taking casodex or similar ideas is a temporary option, of course they are in sales. Same goes usually for telling the doc you want to shop opinions on your own doings, alot of docs get mighty miffed by hearing such (but it is all about you, right?). A few will advise getting many opinions, they might not be as happy if you search them out on your own. I liked getting my own and got many opinions from various types of docs for PCa, very interesting education too.

You asked if anybody has done differently, so mentioning such has been done. I am not endorsing what you should do, only you walk the walk. The controversial things of PCa will become evident as endless as you get into this more and more. Best to whatever you decide.
Posted 12/30/2012 12:44 PM (GMT 0)
Hey Ceaser212

You did not mention how old you are. It makes a big difference. If you are 80, you can relax. If you are 40 you need to be using your computer to find uros right now!
You also did not mention if this was your first PSA and if you have a baseline. If your PSA was 6.4 a year ago and it is 6.5 now - relax. If it was 1.5 last year and is now 6.5, Yikes!
You need to have some idea of how aggressive your case is.
(If you can, please fill out the signature section. It helps.)

Welcome to Healing well. We'll leave the light on for you.
Jeff
Posted 12/30/2012 1:20 PM (GMT 0)
Thank you all for the response. I am 57 and in good health recently I have adjusted my diet and have been juicing doing colonics, acupuncture. As far as being a T1 or T2 the doctor didn’t tell me and I don’t want to guess but as far as the DRE in the past month everyone felt nothing. I will meet with my GP who by the way has been great and talk about probably have him do another blood test. If the lead time is 3-4 months its is safe to say I should decide on the way to go this month and by the time they are able to treat me I would not have to worry about my schedule as it stands. As far as the information about the drugs thanks I will do a little research.
Posted 12/30/2012 2:05 PM (GMT 0)
Yup, A Gleason of (3+4) 7 means you have intermediate-risk LOCALIZED CaP. It is assumed that the CaP is still inside your prostate and hasn't migrated outside, yet. But even with low-risk CaP , there is always a chance that this had already occured and even if you have Mr. Walnut surgically removed, you could have still problems down the road, but the probability is low that that will happen ( about 4% ) - about the same as ANY other treatment, given your numbers.

The good news is that you have MONTHS, not weeks to do research, and talk to several specialists before making a decision what to do next ( according to John Hopkins Urology, not me ).

Usually patient's with a Gleason of 7 don't do Active Survelliance.

I was going to do AS until my second biopsy came back a 7 ( up from a 6 ). It was probably a 7 to start with, but a regular biopsy ( like you had ) only takes a sample , so the 7 probably was missed during the first biopsy, since CaP is very, very slow growing - it didn't turn from a 6 to 7 in a few month. And it's easily treated with very good long term results. So relax, you have plenty of time to gather information and have your questions answered before you pull the trigger on a treatment. Please don't jump at the first recommendation for treatment that you get - you can always go back and chose that down the road, if you decide to do that.

So my numbers were similar to yours. I had CyberKnife done on 4-2011 , with no serious short or long term side effects. CK is a course of 5, high dose radiation treatments. Standard radiation uses 30-35 low dose treatments over 6-7 weeks.

I only had a little burning during urination for about 10 days after treatment and had some mild fatigue, when I exerted myself, for about a month. My PSA has been dropping nicely since treatment - down to 0.7 now. For most CK patients, it will decrease over several years. The goal is to have a PSA of less than 0.5 . It won't be zero because the prostate isn't removed.

The 5 year results are as good or better than any other treatment ( for our numbers) with less short and long term side effects. Like I said before, surgical removal is no guarantee that the CaP isn't already outside the prostate and might cause a problem in the future. If a urologist tells you different, RUN , don't walk out of his office and find a new Urologist.

Good luck on your journey. If you have any questions about CK, go to the Accuray website and hop on the CK Patient Forum there. There are several CK Radiation Oncologists and post-toasties that will answer your questions.

Good luck on your journey.
Posted 12/30/2012 2:39 PM (GMT 0)
My stats were also similar, 8 out 12 cores, 3+3 and 3+4 T2C. However, my post surgery results changed to 3+4 and 4+3 and T3A. Negative margins, lymph nodes and seminal vesticles. I did the Davinci Robotic surgery and have had undetectable PSA for the last 16 months. Good luck!
Posted 12/30/2012 2:40 PM (GMT 0)
Ceasar,
Yeah, I did the AS for close to 2 years. When my PSA went up to 6.1 I had a 60 sample biopsy. 15 were GL6 and one was GL7. It was at that point that my cancer was considered 'significant' and in need of treatment. Still no need to fuss (yeah, easy for me to say) because you still likely have sufficient time to study your options and make a wise decision. You will be fine, Brother. God Bless.
Posted 12/30/2012 2:56 PM (GMT 0)
Ceaser, Welcome to HW. Decisions, decisions, decisions, so many choices which one is best? What should I do? We have all had that song played in our head. Research and research some more. Hear your buddies that post hear and make up your own mind. It is an important decision that only you can make. Once the path is taken there is no turning back. Most treatments have similar outcome over the test of time. Uros like to cut it out, Radiation guys want to cook it. In that area there are several methods.

None of the methods are wrong. Feel free to ask the guys about recovery and long term quality of life. Do keep us posted and again Welcome to HW.

Cajun Jeff
Posted 12/30/2012 6:56 PM (GMT 0)
ceaser :

Forgot to give you this link :

http://members.triton.net/vandenbe/CAP/CaPArticles_AUAGuidlines.htm

You might find something useful there.
Posted 1/3/2013 2:18 AM (GMT 0)
I wanted to thank all of you for ur responses but im sure u all know how much it helps hearing from people who have already lived this nightmare. i think I am doing better except I laps into a trance sometimes funny but this happens when im experiencing something good happening in my life. I am still looking into treatment. Seems like so many guys have had surgery havent had much feed back on Radiation. Except the good report from JAVGuzzi.

Im being told radiation is a good option with implants. The doc say there are few side effects as matter of fact I can still be intimate with my girlfriend while being treated and will be fine after treatment, Very little Urinary problems and treatable ED . My concerns I also read ED really comes later and is not treatable.

I was told stay away from open surgery and look into some type of Robotic any one have opinions on either?

Appreciate any and all feed back on treatments and results of side effects long and short term. From what I gathered the success rate for most of these treatments are very much the same.
Posted 1/3/2013 3:04 AM (GMT 0)
Is health insurance or lack thereof an issue here? PC treatment is expensive, but waiting 5 years until medicare (hopefully) kicks in is really not an option in your case...As Zufus said, there ARE work-a-rounds to buy time but 5 years might be asking too much from ADT..
Posted 1/3/2013 4:09 AM (GMT 0)
ceaser -- my numbers were similar except i had 12 of 12 positive.  i believe two cores were 70%.  i was treated with seeds, beam and hormonal therapies.  if you opt for hormonal therapy to buy time you can forget about sex.  in fact you will forget about it -- completely.

i would never tell a guy with intermediate PCa to take his time.  fact is 30%-40% of cases are upgraded after surgery.  my doctor told me time was of the essence.  he said "take your time but make a decision in two weeks."

when i was diagnosed i made the cancer my first priority and made a decision on treatment and was treated as quickly as possible, and that's my advice to you.  good luck to you.

ed

 

Posted 1/3/2013 11:19 AM (GMT 0)
Im not trying to wait 5 years I wanted to take time to pick the right treatment for me Im guessing it can take the good part of this month. I was told my PSA was hovering at about 4 for the past 15 years and most recently it was 6.5. They have done an MRI countless DREs and said it is contained in my prostate. Next Tues day I go for a bone scan. Believe me Im going to treat this thing. I have been getting so many mixed signals about urgency of it.
Posted 1/3/2013 1:28 PM (GMT 0)
Ceaser - I just posted on the other thread you just started today; didn't see this thread until after I posted on the other as I always start at the top of this forum with the latest post!!!!
Posted 1/3/2013 1:35 PM (GMT 0)
ceaser212:

Ya, most posters on this website seem to be guys that have had RRP done.  And BTW, the advantages of RRP over open surgery is very small - not as much as popular opinion would lead you to believe.  It is less invasive and once the machine is purchased, it has to be used to pay it off, but the results aren't hardly any better than an open procedure.  See :

http://cdmrp.army.mil/pcrp/impact/presentations/penson.pdf 

Your numbers are about the same as mine were before treatment. My R.O. told me with my PSA and # of positive cores ( 2), I was just over the line between low & intermediate risk - barely intermediate ...

I recommend that you also talk to a Radiation Oncologist at a CyberKnife Center. CK is just as effective as implants and a lot less invasive, that's for sure. You can find a list of all the locations at the Accuray ( manufacturer of CK) website. You can also jump on the CK Patient Forum and ask questions that will be answered by several CK R.O.'s and post-toasties, such as myself. Dr. Katz ( Flushing, NY near NYC ) says he has a plan that mimics HDR brachytherapy ( seeds ). Here is a link to his website :

http://www.cyberknifeprostateradiosurgery.com/about-dr-katz/

Again, good luck on your journey. Please keep us posted.

Posted 1/3/2013 2:07 PM (GMT 0)
Ceaser,

Take you time. Consider all your options and make the best choice for you. You only get one shot at this. There are no do-overs. If you are considering having children with your new bride, you may want to bank some sperm. Ask any questions you want to here. The only dumb question is the one that goes unasked.

I chose seeds and have been very happy with my choice so far, as are most of the people on this site who went the seed route.

You can read what I went through by clicking on the link in my signature.

Good luck. You are going to be okay.
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