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Positive Biopsy and How To Proceed

Wein
Posts: 5
Joined: Mar 2010

Hi,
I was recently told that my biopsy was positive. I am 63 years old. The doctors office gave me the results over the phone and then just told me that they will schedule a test to make sure that the cancer has not spread to the bones or elsewhere. This test is done by an injection in the morning and then I come back 3 hours later for a scan.
After I had time to digest this and read many postings on this dicussion board, I called my doctor's office back and spoke with the nurse. I told her that it was very upsetting to be told over the phone that the results you tested positive for cancer. I questioned why the doctor would not call me in and give me the results and discuss how we would proceed. The nurse said they do this because they don't really know how to proceed until they do the next test to see if the cancer is contained to the prostate. Then after this test she said the Doctor will meet with you and discuss the treatment options.
After research I did on the Internet (which the nurse informed me is probably not the best thing to do although I have learned so much from this site especially), I did ask for specifics which were not initially provided to me. I asked for the Gleason results and other information. The nurse said that the Gleason was a 6 which I questioned her to to give me both numbers which she said was a 3 + 3. My PSA was an 8.9. She also said that the there was 1 Biopsy which was positive at 4% out of 14 Biopsy's taken by the Doctor.
I go this Wednesday (March 10) for the bone scan and then I will know the results on Friday.
Just wondering if anyone else out there had similar results for the Gleason and the PSA and if they were told in the same manner and how they proceeded. I was also considering gettting a second opinion but do you all feel that is necessary or should I wait and see what the results are from the bone test.
Thank you.

Trew
Posts: 892
Joined: Jan 2010

Over the phone? That sounds a little insensitive to me.

As far as treatment, you have good numbers so far. I would encourage you to take a good look at proton treatment- it is so much easier than surgery on the body and the results are very good- in every way.

Just search the words: proton treatment Loma Linda

and please send for their free book and DVD. You have time to take a good look at this. Surgery is such a permanent solution.

I do wish you well in the process you are now getting into.

Here is a site address:

http://www.protons.com/?sid=google_ppc&cid=Content-Protons:Homepage&type=content&keyword=prostate%2520cancer&adid=4336074558&placement=www.cancerforums.net&gclid=CLi5iOy1qaACFQwhDQodeGWOaw

jmw029
Posts: 5
Joined: Feb 2010

I've seen this suggestion a couple times when search the different discussion boards, but need confirmation. The proton treatment and the Loma Linda is only located in California, correct?

hopeful and opt...
Posts: 1317
Joined: Apr 2009

It is one of four or five treatment centers in the united stated that do the proton radiation.

Wein
Posts: 5
Joined: Mar 2010

Thanks for the web site. I'm checking it out.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Hi Wein, it's not the best way to receive such news. However a second opinion won't change the fact that 1 out of 14 biopsy samples was positive. I received my news from the urologist while sitting across from him in his office and you could have knocked me over with a feather and it didn't change the fact that I had prostate cancer either.

My Gleason score was identical to yours, but my PSA was only 4.9. I understand it's not so much the total PSA when it's below 10 that's of concern, but rather the velocity of the change in the number from one blood test to the next. You might even see the number go down (as mine did), but the cancer will remain.

The bone scan is a wise move even if you want a second opinion. It will help to determine how aggressive your treatment will need to be in dealing with prostate cancer. A negative result will mean you might be able to consider something as little as watchful waiting (active surveillance) for your cancer and that you will have lots of time to decide on a long-term plan that's right for you.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

The national urological association does not recommend a bone scan for those with gleasons less than 8.....although there are various doctors that prescribe this test to all their patients who are diagnosed, it is deemed unnecessary fot those with scores less than 8.....research this if you wish.

Suggest that you get a second opinion on the biopsy that you received by an expert in the field, determining gleason scores are very complicated and you need an expert, Dr. Epstein , Johns Hopkins is an excellent person to have your biopsy sent.

A test that will really indicate where you stand is an MRI with a Spectroscopy.MRSI......it will stage your desease, and show any nodule involvement if any.............1 of 14 is very low..........so it is possible that you have no nodule involvement.

First you are in no rush...the desease is very low growing..........with your score,you are a candidate for any treatment option including "active surveillance" which I am doing....Feel free to click my name to read about me where I listed appropriate information that will be useful for you.

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

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

I'll take your word for it regarding the national urologist association recommendation. I was treated in Canada. Sorry about that... eh!

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Basically , many doctors prescribe bone scans for patients who really do not need them.......it is a money making procedure........it is one of many wasted tests that are done in the united states causing medical costs to go up for the individual.

Probably the same is true in canada, a wonderful country with wonderful people
, except too far north.

Ira

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

You say, "except too far north"... that would be Alaska! (lol). Thanks for your comments about Canada.

You raise an excellent point about wasted tests causing medical costs to go up. We have "universal healthcare" in Canada and the costs are indeed running out of control while there is a shortage of doctors. Most went to the USA for higher salaries just like our hockey players. Damn!

Our healthcare system has resulted in long waits in emergency rooms and for many medical procedures that are deemed non-life-threatening. However, we go immediately to the front of the line if diagnosed with cancer.

The moment I found out that I had prostate cancer, I was lucky enough to get a bone scan the same day at Lakeshore General Hospital... and to get an appointment the very next day with the head of urology and oncology at the Montreal General Hospital, but (don't laugh) I postponed that appointment a few days so my wife and I could go to a spa in Lake Placid, New York... in an equally wonderful country with wonderful people!

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

You probably have seen many posts of mine here. I won't bore you with a novel. I would definitely get a second opinion and go to a very well known and respected urologist that specializes in prostate cancer. For a re-read on the biopsy results you can send them anywhere in the country and the uroligist you went to will have to do that if you ask them to so don't feel like your putting them off to do so. Bostwick Lab's is one of the premier labs for testing prostate tissue as that is the only thing they do...nothing else but prostate tissue. Where do you live? Bloomington, Indiana now has a Proton center. There is also a very good doctor there in Michael Koch at Indiana University Medical Center and is probably the best Robotic assisted Da Vinci surgeon in the area along with the surgeon team I used in Indianapolis in Dr. Hollensbe and Scott. I am 52 and had to get it out because I just could not stomach trying to kill the bad cells and wonder when and if it would come back...however at your age..you are I would say on the cusp of perhaps trying a different treatment than as invasive as surgery...for multiple reasons in my opinion...First and most important you seem from the biopsy to have very little cancer in your prostate and logic would tell me may be easier to eliminate with radiation or proton beam, and secondly your life span is another 20-30 years most likely when considering the average male lives to I believe 83 now so a less invasive path may be what I would want at your age since many times this cancer is slow growing and doesn't cause death in older men who are diagnosed..and in older I mean 70's and 80's. My longevity in my family on both sides spans from as little as 84 years to 98 so I should have 35-40 more years probably and I just couldn't live with the fact of leaving the prostate in. Here are my stats and path I followed - currently I am continent (no pads used) and have a full usable erection with Viagra. Also I have attached the book reading list others here have provided for your reference and help.

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
da Vinci 12/29/09 - Dr. Hollensbee & Scott
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE

Recommend-Guide to Surviving Prostate Cancer-Second Edition
Dr Patrick Walsh
Recommend-The First Year Prostate Cancer-An Essential Guide for the Newly Diagnosed
Chris Lukas
Recommend-Saving Your Sex Life-A guide for Men with Prostate Cancer
Dr. John Mulhall
Prostate Cancer Meet The Proton Beam-Apatient's Experience
Fuller Jones
Recommend-You Can Beat Protate Cancer and you do nto need surgery to do it
Robert J. Marckini
Recommend-Surviving Protate Cancer without Surgery-The New Gold Standard that save your life and life style
Dr Michael J. Dattoli
Conquer Prostate Cancer
Rabbi Ed Weinsberg
Recommend-Eat to Beat Prostate Cancer Cookbook
Ricketts

Comprehensive Book list on Prostate Cancer - http://www.wellnessbooks.com/bookstore/

http://www.havasupaitribe.com/waterfalls.html

Wein
Posts: 5
Joined: Mar 2010

Thanks to all of your for your replies. You have given me a lot of good information to go forward with. I'm overwhelmed with all the suggestions. Going to the Doctor for the bone test on Wednesday and the results given on Friday. Will know more next week. I live in Maryland but live very Delaware line so I am seeking treatment Christianna Hospital Cancer Center in Christianna Delaware.

Wein
Posts: 5
Joined: Mar 2010

Thanks to all of your for your replies. You have given me a lot of good information to go forward with. I'm overwhelmed with all the suggestions. Going to the Doctor for the bone test on Wednesday and the results given on Friday. Will know more next week. I live in Maryland but live very Delaware line so I am seeking treatment Christianna Hospital Cancer Center in Christianna Delaware.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Radiation is actually a lot more invasive than surgery.......the tissue becomes radiated, and for the most part surgery cannot be done afterward.........also, there are major side effects after, usually about two years later.

In my opinion, this person is a prime candidate for active surveillance......his cancer has a very good chance of being indolent, not likely to spread.

Ira

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

Yes it's true after radiation surgery is difficult and that seems to be the consenses of almost all surgeons...many will refuse to do the surgery knowing that someone has been radiated. Now I can remember when you said you thought I would be a good active surveillance candidate...:) Having the post op path report proved that to be not the case with both sides with the tumor and within LESS than 1mm from breaking through the capsle....I was a gleason 6 with only 5% 10% and 10% on the biopsy samples but we all know what my post op was...much different. I had grades 3, 4 and 2% of the tumor in grade 5...not something you want to active surveil in my opinion and am certainly glad I had it removed. Thats just my cases and as we all know everyone is different. If I was ever to consider active surveillance I would want to get so many tests done I would have no doubt that the cancer was slow growing and at a very low grade - some of the tests you had done may show that but the fact still remains until there is a post op path report...nothing is gaurenteed...and even then its somewhat subjective how these path reports are done especially on biopsy's. You keep watching your's Very Very Very closely.

Randy in indy

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Active surveillance is considered a treatment option, just like any other treatment option mentioned here.

The ideal candidate has less than 3 of 12 cores positive with fairly low invol
vement in each with a gleason 6 or less..........there are those who are outside of this range who do active surveillance as well, the success rate is less in these patients.......Randy since you had 3 of 8 cores I think that you may have been in this group......I do remember saying something to you about active surveillance........probably to consider it............you were not an ideal candidate.......if I said that you were, I was in error........and I apologize

Ira

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

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

Here is an interesting study regarding the use of the conformal Proton Beam at Loma Linda and Mass Hospital that indicated that since they can better pinpiont the area for the rad treatment using 3 dimensional mapping they can increase the radiation without the typical side affects which actually improved the result by 49% of non-reoccurance vs the regular strength radiation...Study done in 2005 I believe over patients from 1996 - 1999. I found it interesting

http://www.cancer.gov/clinicaltrials/results/high-dose-radiation1005

Trew
Posts: 892
Joined: Jan 2010

This is how it is described at Loma Linda.

Proton is like a rifle targetted in on the exact spot.

Radiation is the shot approach hitting the broader area.

I got both at LLU. The cirlces they were aiming at with the radiation made pretty good size cirles on my hips and lower abdomen.

Very good staff at LLU. They were very thoughtful and helpful throughout my treatment.

And I was always so envious of those who qualified for the proton only treatment. Those guys did/do so well.

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

What is the criteria to receive proton treatment (versus IBRT s)?
What is the cost of PR ?
HIgh happy days

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

When I looked at proton late Summer 2009 they quoted me about 35,000 out of pocket and my insurance would not pay. Then you have your living cost in SOuthern Ca. for about 7-9 weeks.

I know they say about 35 treatments but I've read they machine breaks down alot and they have to reschedule you.

I also checked with the new center in Jacksonville Florida and they told me about 100,000!!

I went Davinci since my insurance paid for that.

Larry

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

My 2cents, Randy and Ira and I agree upon you taking AS as treatment, I have almost identical everything to your profile, but no one ever offered a bone-scan! The tiny cancer thing is in the capsula as far as they could determine... curious advice I think.
A valid "AS" is best if you can find one. best wishes,

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