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psa going down each visit from 5.5 one year ago now 2.5 gleason 3+3 =6 cancer found in 1 of 12 lobes

gwc
Posts: 8
Joined: Feb 2010

Not sure what I should do next? I am 51 can someone give me some advice.
Thanks Would you stay on watch and wait or be in a hurry to do something?

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I'd get an MRI with Coil or Spectroscopy to see if they can see anything more. One thing I have noticed is post op the pathology of the cancer is usually worse than the biopsy readings in gradings.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

is generally recommended for those who have less that three cores positive and a gleason of 3+3=6 or less.Studies show that many men are overtreated when active surveillance is appropriate .

During the last year your PSA went down instead of up...very, very good.

Is there a doctor managing your active surveillance decision? I am seeing a surgeon at UCLA who I believe administers the protate department, including the active surveillance program.

I'm a year out now on active surveillance.........the last time that I spoke with my doc, several months ago, he was talking about me getting another biopsy.....I have an appt in april...and see what he has to say.

Anyway for any biopsy that you get , have a second opinion of the parrifin blocks by an expert in the field so that you are not over or under treated.

Very good advise to have an endorectal MRI with a spectroscopy. I had one, staged at t1, no nodule involvement noted.

Ira

Active Surveillance at UCLA
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Reaching one year aniversity of diagnosis

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

The watchful waiting is tempting as I have only one core out of 12 with less than 5% positive and a Gleason 6. That said, the issue that spurs me to have the surgery is that my Dad died from P a decade ago at 74. I am 57. ( scheduled in early May) My PSA went from 2.8 three years ago to 4.8 in Oct to 5.02 in November. It was then that I went to uro and had biopsy. Also had bone and ct scan.. thank goodness clean except minute low grade tumor in bladder that has been since removed. Interested in yours or anyone elses comments.

Thx

Frank

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Active surveillance is considered a medical treatment option, and in many cases the disease does not spread.........the cancer is indolent.

My thought is that I want to continue closely monitoring the disease. There are no side effects during this time, thus I can enjoy a better quality of life......if the disease does in fact spread, I can then take action, such as surgery, or even a new treatment that may be discovered

I am being treated at a major hospital, ucla. this hospital has facities and doctors available thay will do an excellent job.

I have heard that UCSF also does a great job with active surveillance........I don't know where you are located, but look into major teaching hospitals in your area.

Ira

hopeful and opt...
Posts: 1278
Joined: Apr 2009

active sureilance expert

protocol:

PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36

After 8 years:

- 55% remain untreated with stable disease

- 36% decided to have treatment(eventhough they did not have progression)

- 9% treated with surgery or radiation for increase in psa or gleason score

- none have metastatic disease
< 1% men died of prostate cancer

---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005

. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression

FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I know these are real statistics...but after I had Post Op path report that showed more cancer than what biopsy showed and my turmor involvement was in both sides...nearly broken through the capsle less than 1mm. I am certianly glad I did not wait ...and had it removed....but I did not have the spectroscopy...just coil...and I did not have the test to determine the growth rate....but I did have some grade 5 in the post op path...I sure hope you are doing the right thing...I pray you are....

Randy in indy

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

But - what if you are the one life? What if you AREN'T? That is what my husband and I can't get past....statistics are great but what if you become the 'bad' statistic??

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

and I did have surgery..and I am having success with both incontinence and erections....plus not cancer technically...via non-detectable PSA. I feel I made the right choice at the right time.

Randy In Indy

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Hope you had a great weekend and time spent with your kids. Congrats on your skiing - you really SHOULD be the poster child! Everyone has to make their own choice and find a way to make peace with it. Jesse had a down day yesterday, I just hate this for him. We go to opinion #2 tomorrow at 11, rad oncologist next monday and michael koch on the 16th. Onward!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

PERSEVERE!!! Find your solution through perseverence in multiple opinions and interviews.

All the best!

Randy in Indy

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

He is better today, went to church and we have great support too.
Yes, getting more information is the key. I think that by the time we are done with all the appointments we will have a good handle on things, at least I hope we will.
Hoping you two can talk on Tuesday.
Thanks again for all the support.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Maria, there is a "real" negative quality of life to many who have radical prostectemies, radiation,hormone therapy, and other treatment options, I want to avoid that risk as long as possible....I believe because I am closely monitored that if my cancer progresses (prostate cancer is a very slow growing disease), and my cancer is not indolent, I can choose another treatment at that time.........and I would do it in a heartbeat.

In my case (as in yours ) there was very early detection, so we have a choice of various treatment options , and.....................as I mentiond to you when I first replied to your post, all the doctors from each treatment discipline want to treat people like us with low volume disease so they can be successful.......each will tell how wonderful their discipline is, and how wondrful they are.........By the way, be very careful of sharks......a lot of these docs are sharks.

Ira

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I also hope that I am doing the right thing...actually I feel pretty comfortable with my decision and I am going on with my life......Randy, I really appreciate your concern, taking the time to let me know, and prayers......I will be seeing my doc in april, so I will see where I stand at that time.

Ira

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You have always been a very compassionate poster here and deserve the best....I just fear that sometimes it seems what all the info tells in tests turns worse after the surgery Post Op pathology...Which is a fact....Dr. Koch told me about 2/3rds Post Op the cancer is upgraded...now by the same token some is down graded...so Like I always say...it's a crap shoot...and thats why I wanted it out...and just did the best to find the person that would end up with the best after affects success...If I do not improve to perfect from hear as I am very close with both...I would be happy with my life and glad to be alive. Still....I have no gaurentee's that this will not come back in months or years....and who knows does having one cancer predispose you to getting another different cancer down the road...I'm too young for this so I handled it the best I thought for the long run...and I was of course a distance runner so that fits...lol I will be eagerly awaiting your complete sharing of your April appt. I pray for a GREAT ONE!

Randy in Indy

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Deciding on a treatment option is very difficult. There are lots of choices with strong avocates for each.

It may be that as part of my work carreer, I had done research so I am comfortable in taking some risk, based on the active surveillance studies. In the study , there were some who had to take more active treatments because of progression...( I believe that I heard someplace that there is a 30 percent chance that the disease will progress.

I've been taking state of the art tests, which measure where I am, more so than the patients in the study which was completed 5 years ago, so I tend to know a little more of where I stand.

I also believe that we, as a group, we want to be proactive in taking care of our problems......As Maria and many others say, they want to get the cancer out of their bodies.......you will notice in the study that about 30 percent simply decided to stop the active surveillance treatment, and decided to pursue a treatment option such as surgery or radiation.......I believe that there is a lot of peer group pressure to pursue an active treatment option.......since there are only a small amount of men who in fact have been diagnosed with low volume "CANCER", to go with the crowd, and it our nature to get rid of, or avoid something that bothers us

For example on this board, the vast majority have had a prostemectomy, and there are very few who are doing active surveillance........you may have noticed that there are negative comments made from time to time about the active surveillance treatment.....(now, I don't own this treatment option, so its ok by me to hear comments, since they may be helpful)....just saying.......of course, I do some thinking every time I here one of these comments.

Anyway. time to stop rambling.

Ira

PS I've also been prety athletic in my life, have done a lot of hiking and biking as well as sand volleyball, etc.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You did some real deep investigation into your own situation and case that not always is apparent in your posts until you read through all of them....I trust you are making decisions that are very fact based and logical now that I understand all of your test further through more of your posts. I truely want you to be the one who wins without any hard treatment choice like most on here. The value that would provide here and for many others would be just that....REAL Value...for those that analyze themselves like you did and find themselves in the same spot you are in....perhaps we...or I mean you would be responsible for saving some from unnecessary surgeries or other invasive procedures. KEEP POSTING!

Randy In Indy

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
And T2s -on up- are the guys that need the best expertise we can give them/us.
Soap box crashes beneath my feet
Love and healing to all

hopeful and opt...
Posts: 1278
Joined: Apr 2009

You can determine where to send your biopsy tissues for a second opinion.........simply notify your doctors office.........they will send it........two good choices are bostwick or dr. Epstein, Johns Hopkins.........they are experts in evaluating gleason scores.

As far as getting additionsl tests..........where are you located?...hopefully someone in your area might help you with a post....... YOu can contact major cancer hospitals in your area. This is a good start to find a suitable doctor and one that has the where with all to perform any necessary tests that you need......US news and world put out a list of major cancer hospiatals in the united states by rank.(I [posted in a separate thread).........

yeah....i've noted that a lot of surgeons like to cut..........the radiaologist like to fry......there's all kinds of docs out there....some are competent while many others are not..........so you have to do a lot of your own research to keep them honest.

Ira

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