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LvGuy1
Posts: 54
Joined: Oct 2016

I am a 57 year old male that has Adenocarcinoma cancer in my left lobe i have 5/6 with cancer 3 + 3 =6 and Right side 1 out of 6 cores with 3+3=6. I have a T1c ? also my psa is now 11.8 from 3.4 5 years ago. I am scared that it is going to get worse and want to know if i should get it removed as a friend had a different type of cancer and did radiation and was alsways sick. I have a hard time urinating and also now have ED. Any recomendations or results. Thanks

 

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VascodaGama
Posts: 2969
Joined: Nov 2010

LvGuy

Your query regards a treatment but this should be decided after receiving a "definite" clinical stage. I wonder if the (?) mark you display with the T1c stage refers that it is still under investigation (not yet conclusive).
Clinical stages are based on symptoms and findings that provide the location of the cancer. Your urinary problem and ED could be a cause of hyperplasia (not cancer) which is producing part of the high PSA. The biopsy report may provide clues to what the pathologist found in the cores, including the percentage of cancer and zones where it was found.

Have you done a DRE (digital rectum examination)?

How about a image study?

Gleason score 6 is the lowest in risk for extra capsular extensions. It relates also to a low or not aggressive type of cancer. Six positive cores out of twelve indicate to be a voluminous type producing high levels of PSA.

I do understand your worries for spread (we all experience the same at beginning) but prostate cancer, in particular Gleason rate 3 is slow growing and do not spread overnight. I would recommend you to get a definite and proper clinical staging before deciding on an option.

Regarding radiation treatments' outcomes, they all differ depending on the area radiated. You did not share details of your friend's radiation field/location but PCa radiation is done at the lower abdomen so that the area involve the gland together with part of the colon, prostate bed, and localized lymph nodes. The field of attack is limited to the area where cancer exists. Accordingly, patient with problems in the area, such as ulcerative colitis, should try other means of treatment.
Another aspect to be considered is the urinary problem. Radiation may prejudice the situation if the problem relates to protuberances of the gland into the bladder. (Again you need a proper "picture" to certify what is causing the symptom)

Surgery is recommended in contained cases (the whole cancer inside the gland). The whole prostate is dissected therefore eliminating the cancer. Radiation is also feasible in contained cases eliminating the cancer but saving the gland and attached tissues (such as the nerves controlling erection and urethra sphincter). The difference between the two is the side effects so that one can decide what would be acceptable or what one couldn't dispend. I recommend you to investigate on the risks and the side effects published in many sites in the net.

I wonder if you have been taking any medication for the urinary problem; something to counter a BPH case (benign prostatic hyperplasia)?

Welcome to the board.

Best wishes,

VGama

LvGuy1
Posts: 54
Joined: Oct 2016

THanks VascodeGama to answer your questions. as far as th question mark i didnt know if that was a 1 or and i, I have had a DRE done after the biopsy. here aer a few notes the Dr wrote " in medical decision-making. This 57-year-old white male has a fairly long history of an elevated PSA with previously negative prostate biopsy. His PSA rose and he was seen by Dr. Manuel. A repeat biopsy showed a volume of 36.1 cc and on the left, 5 of 6 cores were positive for Gleason score 6 malignancy, with 1 of 6 cores positive on the right. There was no perineural invasion" "I therefore went through the explanation of Gleason grade, score, stage, etc. in detail. I then discussed how he was not a candidate for active surveillance but that intervention was necessary. I explained radical prostatectomy versus radiation, specifically brachy therapy." "This is a 57-year-old male who had prostate biopsy under ultrasound guidance couple of weeks ago and pathology report came back as adenocarcinoma of the prostate on the left lobe 5 of 6 cores were positive with a Gleason score 3+3. On the right side 1 out of 6 cores was positive, Gleason 3+3. Diagnosis was discussed with the patient and the options for treatment with risks and complications and this included radical prostatectomy, open or robotic, radiotherapy-brachytherapy or external radiation or both, and hormonal therapy. Patient wanted to discuss options with his wife and is leaning more towards radiation therapy. Diagnosis-adenocarcinoma of the prostate, stage TIc"

Swingshiftworker
Posts: 1013
Joined: Mar 2010
 

Hello:

This is a duplicate of a message I left on another thread for a newly diagnosed PCa patient like you.  You have a very low grade cancer and have a lot of time to make a decision.

--------------------------------

People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of what you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist had to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

Good luck!

Clevelandguy
Posts: 428
Joined: Jun 2015

Hi,

I had a 3+4 and mine was contained inside the gland, I had my prostate removed by robotic surgery.  Some people choose radiation(seeds, cyberknife, ect.)  Both radiation & surgery have different side effects.  I have slight leakage(less than one pad/day and no ED after two years). )Do your home work and read, read, read, talk with both your urologist & oncologist. The American Cancer Society has a good section on their webssite about the different types of treaments and their side effects.  No matter what treatment you choose get the best doctors you can afford.  Good luck on your path.................

 

LvGuy1
Posts: 54
Joined: Oct 2016

Thanks Cleveland guy, I have VA and am using the Choice program that has me using outside Drs. and before they have been the best in their field and i do have the options o0f changing Drs. I have been reading up on all the sites i can since the biopsy as i thought i had it 2 years ago and my Dr kept pushing me to get it done. so instead of asking again he just set me up for an appt. He hass been my Dr. for over 10 years and since i trust his judgement i did it. call it fate or Drs intuition. I have recently had my galbladder taken out and have been having problems with that but this cancer has me more scared that the problems with the gallbladder.

 

Old Salt
Posts: 720
Joined: Aug 2014

I will add some thoughts as well.

Forget about the friend's experiences. Let's focus on your situation.

What is the size of your prostate? These urinary and ED problems could well be related to an oversized prostate and/or an infection (prostatitis)

And yes, you do have cancer in your prostate, but it appears to be relatively non-aggressive. Swingshiftworker has presented options that are available to you. There is time to study these and make the choice that appears right to you. But you need considerably (!) more info as Vasco already pointed out. Please re-read his advice.

LvGuy1
Posts: 54
Joined: Oct 2016

i have posted everything up to this date under Vascodagama's comment

Thanks and so far everyone has been very useful in their answers/

 

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VascodaGama
Posts: 2969
Joined: Nov 2010

LvGuy,

The confusion on (1 or I) may be the type of font used in the report. I would guess it to be 1 (one). The report you share clearly says "stage T1c". He is deciding this category based on his experiences. T1C =Cancer is found by needle biopsy that was done because of an increased PSA. The result of DRE that also weighs in the decision, but you did not comment here, may have been negative otherwise the category would become T2c. A negative image study would also categorize the case as T1c, and the comment "... no perineural invasion", may lead to think in contained cancer, which wouldn't require confirmation by an image exam. 
The diagnosis seem consistent but the reason for the size of the gland (36.1 cc ) above normal has not been clarified. Probably the matter is described/understood at the pathologist's report, that may identify existing hyperplasia which could be the cause of the urination problem. The report can also give a clue for the ED you are experiencing.

Can you print out here the contents of that report?

I also would like to know more in regards to the problem with urination and ED. Can you discribe the symptoms? Is there urgency or retention? How about ED, what is the problem: you have the wish but cannot accomplish an erection totally? Are you taking any medication?

I like to know that you trust this doctor for his long relation with you. You may inquire and tell him that you would like to have a MRI as the final information for making a decision on a therapy. Not imperative according the data you share above but the MRI could provide a more comprehensive understanding of the whole situation.

As commented by other survivors above, Gleason grade 3 is not aggressive even producing high levels of PSA. It is active so that it needs treatment but usually its status do not change that soon. You can do your investigations and become well prepared before deciding. You are scared because you are dealing with the unknown. Read, read, read.

Best wishes,

VG

 

LvGuy1
Posts: 54
Joined: Oct 2016

THanks VascodeGama to answer your questions. as far as th question mark i didnt know if that was a 1 or and i, I have had a DRE done after the biopsy. here aer a few notes the Dr wrote " in medical decision-making. This 57-year-old white male has a fairly long history of an elevated PSA with previously negative prostate biopsy. His PSA rose and he was seen by Dr. Manuel. A repeat biopsy showed a volume of 36.1 cc and on the left, 5 of 6 cores were positive for Gleason score 6 malignancy, with 1 of 6 cores positive on the right. There was no perineural invasion" "I therefore went through the explanation of Gleason grade, score, stage, etc. in detail. I then discussed how he was not a candidate for active surveillance but that intervention was necessary. I explained radical prostatectomy versus radiation, specifically brachy therapy." "This is a 57-year-old male who had prostate biopsy under ultrasound guidance couple of weeks ago and pathology report came back as adenocarcinoma of the prostate on the left lobe 5 of 6 cores were positive with a Gleason score 3+3. On the right side 1 out of 6 cores was positive, Gleason 3+3. Diagnosis was discussed with the patient and the options for treatment with risks and complications and this included radical prostatectomy, open or robotic, radiotherapy-brachytherapy or external radiation or both, and hormonal therapy. Patient wanted to discuss options with his wife and is leaning more towards radiation therapy. Diagnosis-adenocarcinoma of the prostate, stage TIc. I do have a enlarge prostate bit he said it was not that enlarged. as far as the Ed that has been going downhill for the last 4 years, I can still get an eriction but it is a soft one and not hard like it used to be and the urinatin problems are slow drips before strea of urine and also getting up every hour or so to go to the bathroom. dont do bad during the day.     

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VascodaGama
Posts: 2969
Joined: Nov 2010

LvGuy,

You have reapeted the urologist's comments/report, but I would like to read the biopsy report which document is at the doctor's office. Can you ask for a copy and print it here?

Your symptoms relate to urgency meaning that something is pressing the bladder's wall muscle. Radiation of this area would not solve the problem. ED may be due to other causes, probably affecting the nerves surrounding the gland. I think it better you request an MRI because these items can put your wish of radiotherapy into jeopardy. You need to get more details on the problem.

Best wishes.

VG

LvGuy1
Posts: 54
Joined: Oct 2016

the post is being reviewed and will be posted afterwards

 

LvGuy1
Posts: 54
Joined: Oct 2016

 Type of Report: Surgical Pathology Specimen:

A-PNBX, RIGHT SIDE, 1 CORE B-PNBX, RIGHT SIDE, 1 CORE C-PNBX, RIGHT SIDE, 1 CORE D-PNBX, RIGHT SIDE, 1 CORE E-PNBX, RIGHT SIDE, 1 CORE F-PNBX, RIGHT SIDE, 1 CORE Date Obtained: 28 Sep 2016

Performing Location: VA Southrn Nevada Hlthcare Sys

Date Completed: 03 Oct 2016

SURGICAL PATHOLOGY REPORT LOCAL TITLE: LR SURGICAL PATHOLOGY REPORT DATE OF NOTE: OCT 03, 2016@07:35:07

ENTRY DATE: OCT 03, 2016@07:35:08

AUTHOR: JINADASA,PRIYANTHI EXP COSIGNER: URGENCY: STATUS: COMPLETED $APHDR - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - MEDICAL RECORD | SURGICAL PATHOLOGY - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - PATHOLOGY REPORT Accession No. SP 16 3746 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - $TEXT Submitted by: UROLOGY Date obtained: Sep 28, 2016 15:00 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Specimen (Received Sep 29, 2016): A-PNBX, RIGHT SIDE, 1 CORE B-PNBX, RIGHT SIDE, 1 CORE C-PNBX, RIGHT SIDE, 1 CORE D-PNBX, RIGHT SIDE, 1 CORE E-PNBX, RIGHT SIDE, 1 CORE F-PNBX, RIGHT SIDE, 1 CORE - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - BRIEF CLINICAL HISTORY: NA CONFIDENTIAL Page 20 of 32 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - PREOPERATIVE DIAGNOSIS: NA - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - OPERATIVE FINDINGS: NA - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - POSTOPERATIVE DIAGNOSIS: NA Surgeon/physician: EMMANUEL S MANUEL MD =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - PATHOLOGY REPORT Accession No. SP 16 3746 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - GROSS DESCRIPTION: Specimen A is received in formalin and is labeled with the patient's name, identification number, and "Right Prostate". It consists of 2 tan soft tissue fragments, ranging from 0.6 x 0.7 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette A1. Specimen B is received in formalin and is labeled with the patient's name, identification number, and "Right Prostate". It consists of 1 tan soft tissue fragment, measuring 1.5 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette B1. Specimen C is received in formalin and is labeled with the patient's name, identification number, and "Right Prostate". It consists of 1 tan soft tissue fragment, measuring 1.4 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette C1. Specimen D is received in formalin and is labeled with the patient's name, identification number, and "Right Prostate". It consists of 1 tan soft tissue fragment, measuring 2.0 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette D1. Specimen E is received in formalin and is labeled with the patient's name, identification number, and "Right Prostate". It consists of 1 tan soft tissue fragment, measuring 0.9 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette E1. Specimen F is received in formalin and is labeled with the patient's name, identification number, and "Right Prostate". It consists of 1 tan soft tissue fragment, measuring 1.6 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette F1 LB MICROSCOPIC DIAGNOSIS: A. - RIGHT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - BENIGN PROSTATE TISSUE. - NEGATIVE EVIDENCE OF MALIGNANCY. B. - RIGHT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - PROSTATIC ADENOCARCINOMA IN 1 OF 1 CORE. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 10% OF THE CORE. - NO EVIDENCE OF PERINEURAL INVASION. C. - RIGHT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - BENIGN PROSTATE TISSUE. - NEGATIVE EVIDENCE OF MALIGNANCY. D. - RIGHT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - BENIGN PROSTATE TISSUE. - NEGATIVE EVIDENCE OF MALIGNANCY. E. - RIGHT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - BENIGN PROSTATE TISSUE. - NEGATIVE EVIDENCE OF MALIGNANCY. F. - RIGHT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) CONFIDENTIAL Page 22 of 32 - BENIGN PROSTATE TISSUE. - NEGATIVE EVIDENCE OF MALIGNANCY. SUMMARY: RIGHT PROSTATE BIOPSY: (TOTAL 6 CORES) - PROSTATIC ADENOCARCINOMA IN 1 OF 6 CORES. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 1.6% OF THE CORES. - NEGATIVE EVIDENCE OF PERINEURAL INVASION. NOTE: The diagnosis was discussed with Dr. Helen Housley by Dr. Priyanthi Jinadasa at approximately 3:55 PM on 9/30/2016. Dr. Helen Housley acknowledged the diagnosis. This case is reviewed at pathology conference on 9/30/2016 and with agreement on the above diagnosis. (WN,PJ). /es/ PRIYANTHI M JINADASA MD Signed Oct 03, 2016@07:35 Performing Laboratory: Surgical Pathology Report Performed By: SOUTHERN NEVADA HCS - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - (End of report) PRIYANTHI M JINADASA MD pmj|

Date Oct 02, 2016 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - STANDARD FORM 515 ID: SEX:M DOB:03/24/1959 AGE: 57 LOC:LAS URO PCP: George B Kaiser, MD /es/ PRIYANTHI M JINADASA MD Signed: 10/03/2016 07:35

Type of Report: Surgical Pathology Specimen: A-PNBX, LEFT SIDE, 1 CORE B-PNBX, LEFT SIDE, 1 CORE C-PNBX, LEFT SIDE, 1 CORE D-PNBX, LEFT SIDE, 1 CORE E-PNBX, LEFT SIDE, 1 CORE F-PNBX, LEFT SIDE, 1 CORE CONFIDENTIAL Page 23 of 32 Date Obtained: 28 Sep 2016 Performing Location: VA Southrn Nevada Hlthcare Sys Date Completed: 03 Oct 2016 SURGICAL PATHOLOGY REPORT LOCAL TITLE: LR SURGICAL PATHOLOGY REPORT DATE OF NOTE: OCT 03, 2016@07:38:23 ENTRY DATE: OCT 03, 2016@07:38:23 AUTHOR: JINADASA,PRIYANTHI EXP COSIGNER: URGENCY: STATUS: COMPLETED $APHDR - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - MEDICAL RECORD | SURGICAL PATHOLOGY - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - PATHOLOGY REPORT Accession No. SP 16 3747 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - $TEXT Submitted by: UROLOGY

 

Date obtained: Sep 28, 2016 15:05 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Specimen (Received Sep 29, 2016): A-PNBX, LEFT SIDE, 1 CORE B-PNBX, LEFT SIDE, 1 CORE C-PNBX, LEFT SIDE, 1 CORE D-PNBX, LEFT SIDE, 1 CORE E-PNBX, LEFT SIDE, 1 CORE F-PNBX, LEFT SIDE, 1 CORE - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - BRIEF CLINICAL HISTORY: NA - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - PREOPERATIVE DIAGNOSIS: NA - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - OPERATIVE FINDINGS: NA - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - POSTOPERATIVE DIAGNOSIS: NA Surgeon/physician: EMMANUEL S MANUEL MD =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - PATHOLOGY REPORT Accession No. SP 16 3747 CONFIDENTIAL Page 24 of 32 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - GROSS DESCRIPTION: Specimen A is received in formalin and is labeled with the patient's name, identification number, and "Left Prostate". It consists of 1 tan soft tissue fragment, measuring 2.2 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette A1. Specimen B is received in formalin and is labeled with the patient's name, identification number, and "Left Prostate". It consists of 1 tan soft tissue fragment, measuring 1.8 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette B1. Specimen C is received in formalin and is labeled with the patient's name, identification number, and "Left Prostate". It consists of 1 tan soft tissue fragment, measuring 1.5 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette C1. Specimen D is received in formalin and is labeled with the patient's name, identification number, and "Left Prostate". It consists of 1 tan soft tissue fragment, measuring 1.6 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette D1. Specimen E is received in formalin and is labeled with the patient's name, identification number, and "Left Prostate". It consists of multiple tan soft tissue fragment, measuring 1.6 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette E1. Specimen F is received in formalin and is labeled with the patient's name, identification number, and "Left Prostate". It consists of 1 tan soft tissue fragment, measuring 1.7 cm in length with an average diameter of <0.1cm. The specimen is entirely submitted in cassette F1. MICROSCOPIC DIAGNOSIS: A. - LEFT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - PROSTATIC ADENOCARCINOMA IN 1 OF 1 CORE. - GLEASON SCORE: 6 of 10, (3+3). CONFIDENTIAL Page 25 of 32 - INVOLVING APPROXIMATELY 30% OF THE CORE. - NO EVIDENCE OF PERINEURAL INVASION. B. - LEFT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - PROSTATIC ADENOCARCINOMA IN 1 OF 1 CORE. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 5% OF THE CORE. - NO EVIDENCE OF PERINEURAL INVASION. C. - LEFT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - PROSTATIC ADENOCARCINOMA IN 1 OF 1 CORE. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 5% OF THE CORE. - NO EVIDENCE OF PERINEURAL INVASION. D. - LEFT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - BENIGN PROSTATE TISSUE WITH MIXED INFLAMMATION. - NEGATIVE EVIDENCE OF MALIGNANCY. E. - LEFT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - PROSTATIC ADENOCARCINOMA IN 1 OF 1 CORE. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 5% OF THE CORE. - NO EVIDENCE OF PERINEURAL INVASION. F. - LEFT SIDE, PROSTATE NEEDLE BIOPSY: (1 CORE) - PROSTATIC ADENOCARCINOMA IN 1 OF 1 CORE. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 5% OF THE CORE. - NO EVIDENCE OF PERINEURAL INVASION. SUMMARY: LEFT PROSTATE BIOPSY: (TOTAL 6 CORES) - PROSTATIC ADENOCARCINOMA IN 5 OF 6 CORES. - GLEASON SCORE: 6 of 10, (3+3). - INVOLVING APPROXIMATELY 8.3 % OF THE CORES. - NEGATIVE EVIDENCE OF PERINEURAL INVASION. NOTE: The diagnosis was discussed with Dr. Helen Housley by Dr. Priyanthi Jinadasa at approximately 3:55PM on 9/30/2016. Dr. Helen CONFIDENTIAL Page 26 of 32 Housley acknowledged the diagnosis. This case is reviewed at pathology conference on 9/30/2016 and with agreement on the above diagnosis. (WN,PJ). /es/ PRIYANTHI M JINADASA MD Signed Oct 03, 2016@07:38 Performing Laboratory: Surgical Pathology Report Performed By: SOUTHERN NEVADA HCS [CLIA# 29D2042411] - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - (End of report) PRIYANTHI M JINADASA MD pmj| Date Oct 02, 2016 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -ES STANDARD FORM 515

 

 

SEX:M DOB:03/24/1959 AGE: 57 LOC:LAS URO PCP: George B Kaiser, MD /es/ PRIYANTHI M JINADASA MD Signed: 10/03/2016 07:38

 

I did take out my personal info like name and ssn as this was done  thru the VA 

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

Please wait. You and I and many here have been attacked by this forum software gitch. They will post it once Simone, CSN support team, is alerted to the occurence.

I will wait and comment latter.

Best,

T3rri
Posts: 23
Joined: Oct 2016

An important factor is to consider how much the delta is between Testings and doubling time. I would have to reach back into research but it seemed like 0.7 change might also be a marker but this could be incorrect, check with a urologist. My husband's psa tests did not raise a flag because of the psa totals were under the limit but had we been looking at the change at each testing we would have had a 3 year jump on it. He did have prostate cancer which was only detected because we pushed for the most advanced psa tests available in spite of the doctor saying it was not necessary. Good luck, be your own advocate and insist on what you want to answer your questions and concerns. 

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VascodaGama
Posts: 2969
Joined: Nov 2010

LvGuy,

Please note that I am not a doctor. My comments are based on my experience and researches done along my 16 years as survivor.

From your post above, I noticed that the biopsy and the report were done simple. It doesn't specify particulars apart from benign or cancerous. It doesn't comment on any type of tissues like calculi which may have not been investigated. There is a comment (D. - LEFT SIDE......MIXED INFLAMMATION) which could justify the slight larger size of the prostate at 36 cc. The template of the 12 cores do not specify location/zone of prostate from where each core were taken. The only information is right or left side (lobe) and each needle (PNBX) is identified with letters; A to F. The American Urological Association AUA has no guideline for indentifying biopsy cores, however, there is a tendency by the doctors in starting the lettering from the top (base to apex of prostate). Please refer to the link below figure B. I would guess that the needles: A and B are from the base; C and D from mid zone; E and F from the apex. Apex is the zone where most of PCa cancers are found even those that were missed in previous biopsy.

https://www.auanet.org/common/pdf/education/clinical-guidance/Prostate-Biopsy-WhitePaper.pdf

Accordingly, the cancer was found at the base (lust bellow the bladder) in both lobes and in all zones of the left lobe. The inflammation exist at the mid zone which could be pressing the urethra causing restriction in urine flow. Cancer at the base could also press upwards probably affecting the nerves surrounding the bladder.

In in your shoes I would request an MRI for added information, particularly to verify details of the base of the prostate (next to the bladder) and the extent of the cancer. This is a delicate area where the sphincter is located. Cutting too much could leave you with a case of incontinence. The treatment option should be decided according to probable risks and the side effects. There is always something we would not give up. Radiation is linked to cases of proctitis and colitis. Surgery may cause incontinence, ED and buried penis.

You were diagnosed with low risk cancer so that you can take time to decide.

Best wishes,

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

LvGuy,

Vasco's summation is superb.  1. You have non-aggressive disease; 2. You have time to sort this out, and should request the additional imaging he described.

Also, you mentioned above that you use the VA, but with "Choice."  Where I live, the VA ALWAYS outsources oncology patients -- sends them to civilians. Do request appointments with other MDs in the specialization, and definitely at least one Radiation Oncologist.

max

LvGuy1
Posts: 54
Joined: Oct 2016

THanks Guys for your comments and will certainly got 2nd and third opinions along with the tests recomended. Will post again when i get more answers.

 

 

mdo53
Posts: 5
Joined: Oct 2016

I'm 63 and watched my PSA's rise from 3-9 over the past 15 years.  I had a Artemus biopsy procedure and then met with the radiologist and urologist/surgeon to discuss treatment options. My Gleason score was 4+3.  My federal insurance didn't offer proton therapy as an option.  I chose robotic surgery on Sep 6, 2016.  Checked in the hospital on the day of surgery and checked out 24 hours later.  Catheter was removed 7 days after surgery.  Incontenence for first few days then progressing to wearing a single light pad app. 21 days after surgery.  It's been 42 days since surgery and I have 99% bladder control.  I sleep better believing that the cancer isn't spreading.  Just got my my first PSA result today 0.04.  I hope this is good!   

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

It sounds like your treatment was well chosen and went well.

Your timeline was identical to mine: cath for a week, rapid regaining of urinary control, etc.

Regarding proton treatment: know that it has limited availability except in a few areas, and indeed is not easily paid for by the insurance carriers, so your experience in that regard is not unusual.  It's popularity is increasing, but only very slowly, and only because of the marketing of the sites that own the equipment.

Sloan-Kettering in NYC defines "undetectable" at .05 .  .04 is significantly below that, and at only around 40 days post-surgery, it is possible that your number will drop even lower over time.

The Director of Surgery at Sloan-Kettering also writes that "some certified labs" define "undetectable" as high as 0.1 ng/ml  (Dr Peter Scardino's Prostate Book , p .320)

What matters is that your result does indeed count as "undetectable," by everyone's standards.  I think my first PSA result post-DaVinci was similiar to yours.

max

 

 

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VascodaGama
Posts: 2969
Joined: Nov 2010

It is very good indeed. PSA=0.04 ng/ml verifies the success of surgery.

Let's celebrate with a full glass of my lovely red Esporao.

Best wishes for continuing remission.

VG 

mdo53
Posts: 5
Joined: Oct 2016

Wish everyone here the same success! 

Enclosed is a link to some interesting reading... The author is a local urologist who performed surgery on my wife's brother-in-law (his PSA's were 18+) who has been in remission for 7 years... http://www.theprostatedecision.com/

 

MK1965
Posts: 165
Joined: Jun 2016

LvGuy,

Study all treatments modalities carefuly than try to make your decisio. Surgery is not always best option.

Just had robotic prostatectomy on November 2nd and suffered alredy more pain than in my whole life. Today is only my post op day #5. Recovery is very rough and extremely painful. I was leaning toward radiation but very body that I saw in consultation and every one that I new was advising for robotic surgery.

ROBOTIC SURGERY IS BIG MISTAKE AND VERY INVASIVE. 6 CUTS IN ABDOMINAL WALL = 23.5 CM in lengthy.

JUST BIG SELING PITCH. WOULD NOT RECOMMEND EVEN THE WORST ENEMY.

MK

MEtoAZ
Posts: 37
Joined: Feb 2016

I was 52 when diagnosed and had potential for involvment in the periphery which would have resulted in removal of one nerve bundle if it was confirmed during surgery. 

You are correct in that the Uroligists who drive the diagnosis and largely the cure for Prostate cancer are driven towards surgery.  I don't think it is for malice or profit motive, I just think it is what they know and they are confident that it will work, if cancer is contained.

Conventional radiation should not really be considered at your age, unless cancer is not contained, so your two choices would be surgery or SBRT like Cyberknife.

I am only 6 months post treatment, everything is working and no ill side effects aside from a kidney stone-like event 2 months post surgery that required taking steroids for a few days.  I have never had kidney stones so not really sure what that was about. 

I get my second blood test next week and expect to continue to see positive progress on PSA level decline. 

There are more immediate risks with surgery and while the majority of men don't have that bad of an experience, if you do, it can really suck, just look for threads of men dealing with some of those side effecs within this forum.  There are those who say that radiation may cause downstream problems which is also possible but haven't really seen someone express that experience first hand.

I only checked out cyberknife from a list of options my PCP had given me more as an afterthought when I was already scheduled for surgery.  When I went there, and then checked out forums like this, I decided to go that route and have no regrets with that decision.

Whichever course you choose, I hope that you have a successful outcome! 

LvGuy1
Posts: 54
Joined: Oct 2016

went and got another digital from a urologist/cancer specialist and he found 3 lumps on the prostate and did tests and found that my gleason score raised to 4+4 =8 and we have scheduled surgery for Dec 13,2016 as my psa has been raising starting at a 4. something to 9.5 and then 11.5 and now it is up to 15 as of a week ago and he said it is agressive now. and he dont want to wait and thinks (like I do ) that removal is the best decision at this time. and then at that time he is going to get a biopsy done on the prostate and see what the real gleason score is as it can change after it is removed. I am hoping for the best and hope everything will turn out good. still scared and lots of emotions and am trying to find a local support group for prostate cancer but here in Las Vegas they dont seem to have very many and very far from me.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

support group las vegas, NV (source: ustoo.com)

http://www.ustoo.org/Support-Group-Near-You

With a extensive cancer, having a Gleason 4+4=8 and a high PSA with 3 lumps, it is probable that the cancer has escaped the prostate, and that additional tests, ie image tests such as a 3T MRI and PET scan is needed to confirm and locate where the cancer  is  located  outside the prostate for more effective radiation treatment.....surgery alone, since it is a localized treatment, is not curative for cancer that has left the capsule, additional active treatments will also be necessary......the side effects of each treatment type are cummulative...........(among all active treatments, the side effects from surgery are the greatest).....as a lay person who has studied this, I suggest that in your case, radiation plus hormone, or homone treatment only is appropriate...surgery is not appropriate for you.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
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LVGuy1,

As a man who had RP (DaVinci), I agree with all Hopeful and Optimistic said.

Cases that have likely escaped the gland are ill-advised to use RP.  Radiation is all that is likely curative, supplemented by HT as/if necessary.  Talk to a rad oncologist with lots of PCa experience.

Old Salt
Posts: 720
Joined: Aug 2014

The difference between the first and the second biopsy results warrants review by a highly respected pathologist. There's time to have that done. Also, even though we don't have exact dates to go with the PSA assays, there's a possibility that the very rapid rise is due to prostititis. Has that been discussed and ruled out?

LvGuy1
Posts: 54
Joined: Oct 2016

have just had the MRI part done 2 weeks ago and am getting 2 other tests done next week so far it shows the cancer is still just in the prostate and not the lymph nodes and the bone scan dont show nothing ..yet also had a cat scan with and without the drink they give and that came back ok. Will keep all informed as it helps to talk about this and let it out. and appriciate all the feedback you give. PS i am using Cancer Centers of America if that helps anyone, they seem to care

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Frankly the cancer center of america does not have a great reputation for treatment, but they do have a good reputation for marketing.

Initially you reported that your Gleason was 3+3=6. What occcured so that your new doc reported a 4+4=8?

Was the MRI you received a T3 MRI, that is, did the MRI machine have a 3.0 magnet, the highest magnet in clinical use that shows the greatest resolutions. This machine is more likely to show cancer outside the prostate than a cat scan or a 1.5 magnet.  The T3 MRI although it can show cancer outside the prostate does not show very small cancers.

The resolution in a cat scan is not as great as an MRI, and is not as effective in locating cancers outside the prostate.

There are various pet scans that are very effective....one of which uses acetate and is done by a doc in arizona, His name is alemeida (spelling). This pet scan is very effective, however it is  considered investigational and cost about 3,000 out of pocket. I live in CA. and I know many men who have had this test so they can know what is going on, and where the cancer is, to enhance treatment. There are also other pet scan tests, that I hope will be discussed by others at this board.

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VascodaGama
Posts: 2969
Joined: Nov 2010

LVGuy1,

The second opinion from the urologist/cancer specialist you post above is not clear enough. Why did he upgraded the cancer classification to Gleason score 8 (4+4)? Have you or did he obtained a second opinion on the previous biopsy slides from a pathologist, or repeated the biopsy?  Urologists have no clue on pathologist's affairs to upgrade cancers on-the-fly. What surprised me was the comment regarding the positive DRE which finding may relate to existing extra capsular extensions. Such would upgrade your initial clinical stage to T2c with high probabilities of being a T3 if spread is confirmed. The negative image studies classify your case localized but not contained. Surgery should never be chosen for the intention of analysis of the gland. This is done in disected speciments (surgeries) to confirm the stage of such a case.

The newer diagnosis is very different from the initial one and may limit the benefit of the surgery in a curative approach. Recurrence is highly expected which would require salvage radiation therapy later. In view of the above you may disregard surgery and choose radiation from the beginning as the solo treatment. The concern of cancer invading bladder at prostate base is still unclear. If existent then you may opt for a combination therapy with neoadjuvant surgery plus adjuvant radiotherapy. Two radicals will increase the risks and the side effects. I wonder why you reserved surgery that fast, however, you can always delay its schedule if you think you would want to investigate further. No clinic would reject such request. 

In the end, whatever you choose will be the best. You only need to consider your family's opinions, be confident and take the action.

Best wishes for a successful outcome.

VGama

LvGuy1
Posts: 54
Joined: Oct 2016

I had the first set of everything done thru the VA and the 2nd set done thru cancer center. THis is not the same one as in Arizona this is in Las Vegas i made a mistake in the name it is Cancer Care Center, i just saw cancer center and assumed. I have to go to where the VA sends me for outside care so dont have much of a choice. when they found the lumps (3) they redid the biopsy of the lumps. I dont really know what type of MRI machine it was. The Dr did tell me that it is soly in the prostate. at the moment they cannot guarentee that it has already spread outside but they havent seen any evidence of that.     

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Most doctors use a two dimension ultrasound machine to take the cores in the biopsy. This is probably what was done in your case; not a MRI.

In some cases at advanced centers of excellence there is an MRI guided biopsy; first an MRI is taken, then the patient has another appointment where directed cores are taken using a three dimensional biopsy machine that has the ability to lock into the MRI results....this set up, I would estimate cost the hospital in excess of a million dollars.

http://www.radiologyinfo.org/en/info.cfm?pg=prostate-biopsy

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

LVGuy1,

Thanks for sharing the details. The last biopsy and upgrade of cancer aggressivity is for concern. Gleason grade 4 at the prostate shell (bumps) is highly indicative of extraprostatic extensions. Radiation therapy is the recommended choice, however, the bladder neck problem (if any) could make it difficult to treat the area with RT. This is a difficult case which I think it be proper for a combination approach (surgery plus radiation). The risks increase but one should try to kill the bandit if our goal is cure. As commented before, I am not a doctor and my opinions are only based on experiences, which opinions you should not follow if not 100% comfortable with them.

The combination treatment can be done for the full protocol at once (interval of 4 months between radicals for recovery), or sequential allowing time for confirmed recurrence. This means that surgery is done initially followed by a period of remission (if any) controlled with a PSA lower than 0.03 ng/ml; and at confirmed recurrence (constant increases or PSA higher than 0.2 ng/ml) then radiation should be done to prostate bed and localized lymph nodes, under the guidance of a pre image study done at the occasion (Ga 68 PSMA PET scan is the best).

Please understand that I and the survivors above are providing you with the best information we have in hands. Everybody is trying to pass you the best information. You need to digest it and produce a final conclusion or get help from various specialists (urologists, radiologists, medical oncologists).

Best wishes and peace of mind.

VG

 

LvGuy1
Posts: 54
Joined: Oct 2016

VascodaGama, This is what my Drs. are also suggesting. but they want to take out some of the lymph nodes for safety. You all have been very helpful and will continue to keep updating info. Radiation and chemo really scare me but you people here have made my fears less. My wife and I have both been reading up the questions here and also a few other sites that have been recommended. and your results altho vary gives a truer picture than some Drs. that like to surgar coat things. I gave my Primary Dr. this site for other people that have questions and want to talk to survivors and also those that are still fighting. but i figure that as long as we are still fighting that we are surviving and one day as some here have stated the PSA will go down and stay around 0.1 or so and will not spread to other parts of my body, but will deal with that if and when it happens. I have some great Drs. that i trust and i do ask a lot of questions, but is 2-4 hours for surgery normal ? seems like a long time to take out something so small. My Drs say that you cant rush some things if you want great results. i am going thru a lot of emotions at the time, Hot Flashes and get tired real easy and i thought that that was just after the procedures..lol guess my body is just getting me prepared for what to expect. Thank God i havent lost my humor.

 

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

You are confronting a difficult time in your life. It is natural to be emotional and scared. We all deal with the unknown initially, become surprised and question "why me?". Soon you will turn this page of the bad chapter of your life and be at peace.

Robotic surgery takes usually 2+ hours but the doctor may want to dissect some lymph nodes deeper in the iliac so that they usually stop the robot and use their hands making the surgery longer. There is also the delicate area at the bladder neck that he will do it with his hands.
I had open surgery and it took 5.5 hours. I was roled down to the theater at noon and awaken around 9pm in the recovery room with my wife staring at me and smiling. The epidurial anesthesia doesn't last that long but they confirm if we need more of the stuff while in the procedure. I recall the doctor whispering my name inquiring if I was feeling alright, I open my eyes and saw a nebula of three or four silhouettes on the top of me and answer that I wanted to pee, then heard the doctor saying to "give him more" and fall a sleep again. No pain at all before and after OP. The team of doctors in charge of the treatment come to visit me next morning and did a series of "inspections". From the second day on I started to walk in the hospital corridors.

Approximately ten days after OP your doctor will measure the PSA. It should be much lower. You should request (if not used at that clinic) sensitive PSA tests with two decimal places (0.XX ng/ml) because that is proper for guys without the prostate gland. (0.1 is three times higher than 0.03 = remission)
In your next consultation you can discuss the details of the procedure which will be much appreciated by the surgeon (they like to talk with PCa educated patients). You can inquire about the time that the belly fat will take to heal; when are the drain pipes drawn; what king o cream should you use in the penis tip to avoid irritation/dryness of catheter's tube; You can inquire if they check the sphincter "V" neck formation with ultrasound image after drawing the catheter; inquire about diets or supplements; etc.

Best wishes for a smooth sailing.

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

Lv,

My DaVinci two years ago was performed with a doctor who had at that time done over 900 DaVinci's.  My operation took over two hours, and he said there were no complications, so two hours under cannot be an issue. The issue is not the size of the gland, but how hard it is to get at.  With DaVinci, the doctor opens ABOVE the naval, and then has to stretch tissue to get all the way below the bladder...a long way to travel inside a person. The muscle, etc., has to be stretched far enough to allow placement of the camara, lighting, etc.

It is a braver than normal man who will admit his fears; all men have them, but many do not admit.  You are similiar to me in a way: I read perhaps too much, pondered too long.  There is no such thing as a 'perfect' treatment choice for PCa.  If you are resolved for surgery, do whatever you have decided upon, following consulations and weighing the options as you have.

I woke up in post-op with terrible pain, and had the thought "DaVinci hurts less ! Less that what ! "

But by the next morning I was walking, and went home a few hours later. I needed perscription pain pills for another day or two, but that seems not very extreme.  Vasco's description of fast recovery from open surgery is amamzing. All men differ in pain tolerance; as Clint Eastwood used to always say, "A man's gotta know his limitations."

"Waking up" from RP is virtually a certainty. In the US, only 1 in 1,000 men dies during RP, and they are mostly viewed as guys who were likely poor surgical candidates to begin with (this data is a few years old now, and the liklihood today is probably even lower). 

Most guys fear surgery much more than radiation, which for a long time now (way over a decade) has been very, very safe for PCa treatments. And, radiation causes no pain, most guys say afterwards.

Your case, if you use surgery, would demand through 'farming' of the sentintinal nodes....testing them for disease.  Insist upon it beforehand if you go the surgical rouute.

max

mdo53
Posts: 5
Joined: Oct 2016

I woke up in pain and it only lasted for about two days.  The whole ordeal lasted 4 hours including recovery room. I only took one pain pill on my first day out of the hospital.  The pain wasn't bad compared to my knee operation.  Nine weeks have passed and no longer wearing a pad and my PSA is 0.04. Glad I chose Da Vinci.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

My post-DaVinci experience was essentially idential to yours, mdo, as my post above suggested.

I wore a diaper a day and a half following cath removal, then liners for a while. Urinary control was extremely fast.  I have tested the beloved "undetectable" for two years now, which is what matters most.  Spontaneous sex without pill assistance took well over a year, but with Cialias sex was relatively good well before then.   Numbness in the pelvic region for quite some time following surgery seems to be common, however, I would note for recent guys who had surgery, or are approaching surgery now.

Best of luck to you Lv with your open RP choice,

max

LvGuy1
Posts: 54
Joined: Oct 2016

I have decided on Open Surgery instead of the Di Vinci as when i talked to the surgeon that with the open Surgery he can better see the situation when he gets in. He did say that he recomends Desitan for the dryness and Polysporin for tip where the catheter is, he also stated to get some stool softener for in case i get constipated as he dont want me to strain. He stated tho that open surgery takes longer due to they look all over and want to make sure they get all that they can see but that if it has spread outside the prostate he preferes to leave it in and do other options. But stated it is still up to me as to what i decide. all he can do is give me the facts and give his opinion. I also had Radiation person there also and they recomended putting pellets in the prostate. He did state that if after the surgery about 3 or 4 weeks that he will do another PSA and see what the numbers are. He said that it should read 0.01 and if it is over 1 that he will have me do hormone and some medication that starts with a L but forgot to write it down. for safety. Hope this clarifies my situation as of this date and he is great at answering me back if i call about questions, His Nurse informs him when you call and what you are calling about.        

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

It makes sense to me what the doctor has told you and leaves me with the impression that you can trust him.

Open or Robot surgeries do not differ much when done by experienced surgeons. Open takes longer time in operation and requires more days in the hospital but it allows better access to the lymph nodes deep into the abdomen, assuring better outcomes in guys with probable extracapsular diagnosis. It is also better in cases where the bladder neck is involved requiring delicate work in the reattachment at the sphincter (lesser probability for a case of incontinence). The doctor should also confirm and repair any inner hernia that is so common to exist at the region of the operation (groin). Hernias may produce no symptoms so that one could have it without knowing. Its repair could be included in the surgery protocol. I recommend you to inquire now with the doctor if he can check it (a simple ultrasound can do it) to be included in the operation, if any.

His comment "...but that if it has spread outside the prostate he preferes to leave it in and do other options...", is typical in open surgeries. The doctor dissects firstly some localized lymph nodes, send them for immediate check by the pathologist in the hospital, and if these are confirmed positive to cancer then he aborts the operation moving the patient to a RT option. This positive result is conclusive that surgery would not be practical for such a patient. It would not assure cure, so that aborting operation will avoid certain risks and side effects that the intervention could cause. Only good doctors act like this in placing the patient's quality of living first. I also noticed that his surgery threshold outcome standards (PSA=0.01) are quite low signifying him to be very restrictive. He likes to operate when success can be assured with high marks. These qualities provide trust and represent a good doctor.

Accordingly, the radiation would be done at a later date after healing. The radiologist you met was suggesting brachytherapy, but before you decide you should get informed on the details of the several RT modalities suitable to your case. You should have a colonoscopy done earlier to check for any ulcerative colitis at the area of influence. It would also include a protocol of hormonal treatment (recommended by your doctor above) done with "L" (Lupron?). This is also typical.

You can still formulate some inquires and consulting by phone. I would propose the fact about Hernias; also that long surgery require blood transfusion so that you can ask if you can give now a portion (400 ml) of your own blood for the operation; it is typical to be admited to the hospital a couple of days before surgery for preparations (diets, tests, etc) so that you should ask about a list of what you need to bring in or what is prohibitive.

I wish you a fantastic operation and the best outcomes with the lesser side efects.

Sincerely,

VGama

LvGuy1
Posts: 54
Joined: Oct 2016

I am going in for my pre-Op tests and also a breathing test due to my COPD on Friday 12/09 and will go in for surgery on Tuesday the 13th of December. Have to be there at 7am for a 9 am scheduled surgery as there are some medications that have to be given beforehand. I am starting to get scared and anxious at the same time and i think that it is of the unknown even tho i have done a lot of homework on this and have also looked at youtube videos of the operation and that just made it more confusing as there was no explination on what they were doing. anyways the nurses at the Drs. office have been calling me every couple of days for the last week asking how i am and if i still have any questions they can answer for me, I think that is very considerate of them. anyways if i dont post anything before the surgery I will start a new post and start out with my after surgery results for all the new people and the ones that have been so nice to answer questions and relax me when i needed it. Thanks all

 

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

You have done an excellent "job" by becoming PCa educated. You have chosen the best treatment for your case and have a trustful team of physicians caring about the situation. Nothing else is necessary except to be confident for the D day. Forget the fear and thing that you will live to see man on Mars as much you saw man on the Moon and got a picture of Pluto.

Best wishes for a successful surgery.

VGama

LvGuy1
Posts: 54
Joined: Oct 2016

Thanks VascodaGama, your an inspiration to all of us 

 

Will Doran
Posts: 207
Joined: Sep 2015

LvGuy,

I wish you the best on your up coming surgery.  Three years ago, today (Dec 10th), I was, at this very minute, in surgery having an RP done with DaVinci.  Surgery took 5 1/2hours due to complications from a birth defect, mesh from a double abdominal hernia repair, plus excess muscle developemnt in my thighs from road cycling. Doctor had trouble locating the lymph nodes in my right groin.  Did get through the muscle mass and found them, and then had the robot do mirror image and found the lymph nodes in my left groin area.  There was one very tiny spot in one lymph node found in the pathology.  It was so small that it hadn't shown up in my MRI's.   I started with a PSA 0f 69, and a Gleason of 3+4 -7.  At this time, My PSA is still holding at undetectable levels.  I had 8 weeks of radiation and two full years on Lupron, as follow up.  I was listed as a Stage pT3bN1, and was treated as if I was  Stage 4.  I have been off the Lupron for almost a year at this point and my Testosterone is back up in the normal range.  My"T" level had been clear down to 17, with normal being between 250 and 1,100.  I'm feeling much better at this point and we are hopeful .

So, there is hope and don't be concerned.  The fight is a hard one, against this beast.  Fight like Hell, and don't back down.  Keep active, and exercise as much as you are allowed to do and get back to normal activity as soon as you can.  I was to get back on a treadmill after two days and did so.  Then, I was not to get on my indoor spinner bike for 8 weeks. However I bugged the "H" out of my doctors and they left me try the bike after 6 weeks.  They said I'd know if I was doing too much.  All went well and I'm back to up to 2 hours per day on my spinner, Plus weight lifting and physical therapy exercises that were given to me as follow up.    I don't feel secure out on the road anymore so do all my exercise indoors. 

Know that you are in my thoughs and prayers.  Fight hard and don't back down to this beast. 

Best wishes for a fast recovery.

Love, Peace and God Bless

Will

LvGuy1
Posts: 54
Joined: Oct 2016

Great... The had to cancell my surgery for tomorrow because the Hospital did not do a full breathing function test. now they cant do anything until at least middle of January, and that means another month of pacing and second guessing myself again. God i wish this would just be done and gone with. sorry guys just a little depressed and know you will understand my feelings, This club sucks royally somedays can i revoke my membership ?

LvGuy1
Posts: 54
Joined: Oct 2016

Had the VA give me a call after i talked to the Urologist's office today and they are going to have me go see my pcp at the VA to give me the medical Clearance needed for the Surgery tomorrow the 13th and they said that the Urology office will try and schedule me for Surgery on Thursday or Friday as The hospital already has done all the tests except the PTT and i had one done in the VA in July so that will be good enough. I havent had this much Drama in my life since i was in the Army back in the 70s...lol

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

I understand the inconvenience on the delay and your willingness in having this problem over your shoulder. One more day or month will not affect the results of this intervention. I still think that you should consider to go for that trip you always wanted to do and start planning it, including that super dinner to commemorate the end of this yours moment in life. The delay demonstrates that the Physicians are attentive to RP's little details.. You do not need to domesticate them.

I wonder about your family. They may be also stressful for the situation.

Best wishes,

VG

LvGuy1
Posts: 54
Joined: Oct 2016

Vascoda, i talked to my wife and we are going to take a nice 2 week trip to Germany when i am healed up enough probasbly in March when it is beautiful. Havent been there since 1977. we plan to visit nothing but small hamlets and really enjoy ourselfs and maybe find some good deals and friends along the way. I am going to refresh my German even tho they speak and understand english pretty good but you never know what you will encounter. Thanks for the suggestion as we need to go on a 2nd honeymoon anyways as we havent taken a trip since our wedding in 1980.

 

LvGuy1
Posts: 54
Joined: Oct 2016

You are right on with the stress with my family, They are worried and seems like they are on pins and needles but i try and keep up a cheerful front and do a lot of joking and my wife said just yesterday "How can you be so cheerful and be in a joking mood " and i said being in a positive mood is the best kind of therapy for me to get thru this surgery and for my  recovery afterward and if i look at all the bad things that can happen i will just get more depressed and it will take longer to heal. I cant guarentee everything will come out picture perfect but then i also cant promise everyone that i will go outside and get hit by a bus either. she also asked what if the cancer returns and i said if it does we will deal with it together. But my brother who is 14 months older than me is real worried tho and i cant seem to shake him out of it we are so close i think that he feels my fears. But i am good hands and trust the Dr. and the Hospital.    

Will Doran
Posts: 207
Joined: Sep 2015

LvGuy,

By now you are in surgery, or maybe surgery is complete, I suspect.  Wishing you the best and a fast, easy recovery.

Good for you.  The question from your wife----->  "How can you be so cheerful and be in a joking mood "   Yes that Positive Mood is a great big help.  My wife, to this day, three years post surgery, still tells me that she can't understand how I can be in as good of a mood as I am.  I admit, there are times that I get down, and just sit and cry and / or yell.  However as time has gone along, my mood has improved even more.  The day of my surgery, I was laughing and goofing around with my surgeon, as they were doing the prep work on me prior to the surgery .  He came in to see me before we went into surgery. Then the anestheologist, as he was hooking up my IV in my arm, hit a nerve.  I about jumped off the table in the pre-op room.  The Anestheologist, said,  That's what I wanted to happen.  My surgeon and I looked at each other and laughed.  Then my surgeon told me he was sure that would be the worst part of this day.  And it was.  Then they rolled me into surgery, and BAM, there, right in front of me, stood the DaVinci Robot.  The staff told me later that my eyes got as big a saucers.  Then the blue and yellow lights on all  the Robot's arms started blinking.  That night, when the surgeon came in to see how I was doing, I was sitting up in bed watching a soccer game.  I told Him I saw the Robot.  He had said I'd never see it.  Then I said, "And I saw the lights blinking on the arms."  He laughed and said, "Oh you saw that did you."  Later, he told me he knew I was still at myself enough and he did that just to fool around with me.  It was and has been that relationship we have that has kept me from going off the deep end at times.  We still, till this day, goof around  like that. 

That kind of sense of humor and feeling really helps, so keep it up.  It will also be a big help to / for your wife as well..

Hoping and praying for the best for you.

Love, Peace and God Bless

Will

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