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Decision Time RP or ADT/HDR/EBRT

CMO2021
Posts: 47
Joined: Feb 2021

After waiting  8 weeks for my MRI Fusion biopsy the results are in and not great mostly Gleason 9 (4+9) and one Gleason 9 (5+4).  Have Bone Scan and CT Thursday and Friday of this week.  Hoping it hasn't metastasized but concerned.  I have appointments set  up at Memorial Sloan Kettering with Medical Oncologis, Radiaiton Oncologist and Surgical Oncologist.   Trying to stay level headed and make the best decision, but need CT and Bone Scan results before I can really move forward but need to make a timely decision due to the agressiveness of the PCA. Any others here treated at MSKCC. 

PSA = 4.1
 
Gland ~ 4.0 x 2.7 x 5.0 cm.
 
Volume = 28.0 gms.
 
PSAD = 0.14
 
PSA2 = 20%

DIAGNOSIS

A PROSTATE, LL APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3 + 4 = 7, GRADE GROUP 2, (5% CRIBRIFORM GLANDS), INVOLVING ONE OF ONE
CORE; 9 MM TUMOR LENGTH (80% OF PROSTATE CORE); PERINEURAL INVASION PRESENT.

B PROSTATE, L APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3 + 4 = 7, GRADE GROUP 2, (5% CRIBRIFORM GLANDS), INVOLVING ONE OF ONE
CORE; 12 MM TUMOR LENGTH (90% OF PROSTATE CORE).

C PROSTATE, LL MID; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 12 MM TUMOR LENGTH (85% OF PROSTATE CORE).

D PROSTATE,
L MID; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 13 MM TUMOR LENGTH (90% OF PROSTATE CORE).

E PROSTATE, LL BASE; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 12 MM TUMOR LENGTH (80% OF PROSTATE CORE).

F PROSTATE, L BASE; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE
CORE; 13 MM TUMOR LENGTH (90% OF PROSTATE CORE).

G PROSTATE, RL APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3 + 3 = 6, GRADE GROUP 1, INVOLVING ONE OF ONE CORE; 1 MM TUMOR LENGTH
(10% OF PROSTATE CORE); PERINEURAL INVASION PRESENT.

H PROSTATE, R APEX; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING ONE OF ONE

CORE; 3 MM TUMOR LENGTH (20% OF PROSTATE CORE); PERINEURAL INVASION PRESENT.

I PROSTATE, RL MID; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

J PROSTATE, R MID; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

K PROSTATE, RL BASE; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

L PROSTATE, R BASE; CORE BIOPSY: BENIGN PROSTATIC TISSUE.

M PROSTATE, RO1 #1 LM AXIAL; CORE BIOPSY: INVASIVE PROSTATIC ADENOCARCINOMA,
GLEASON SCORE 4 + 5 = 9, GRADE GROUP 5, WITH INTRADUCTAL CARCINOMA, INVOLVING
TWO OF TWO CORES; AGGREGATE TUMOR LENGTH 20 MM (95% OF PROSTATE CORES).

N PROSTATE, RO1 #1 LM SAG BASE; CORE BIOPSY: INVASIVE PROSTATIC
ADENOCARCINOMA, GLEASON SCORE 5 + 4 = 9, GRADE GROUP 5, WITH INTRADUCTAL
CARCINOMA, INVOLVING TWO OF TWO CORES; AGGREGATE TUMOR LENGTH 22 MM (95% OF
PROSTATE CORES).

CMO2021
Posts: 47
Joined: Feb 2021

I will check with my MO about the B12 great suggestion. I will add it to my armetarium.  I like collards but the way my best friends Mom used to make him.  I think the ham hocks probably would defeat the purpose for eathing them.  We do grow Kale but not sure how much iron is in Kale.  Thank you for the suggestions and bring back some good memories of my best friends Mom's cooking.

CMO2021
Posts: 47
Joined: Feb 2021

I was diagnosed with Afib about  2.5 years ago.  Originally treated with Sotalol due to being pretty symptomatic when I had Afib.  Last July I started having a lot of breakthroug Afib even with the Sotalol.  In January 2021.  I underwent 7.5 hour cardiac ablation with both RF and cryo-ablation.  Procedure went well and I have not had any sustained Afib since the end of February. I have an occasional PAC but thats all.  Taking only amlodipine and metoprolol now plus pca ADT drugs. I would do it again because it has made such a difference.  Like anything else find the best EP guy/gal you can to do the procedure.

CMO2021
Posts: 47
Joined: Feb 2021

On Monday, I had my HDR Brachytherapy at MSK.  Things went well ADT with Zytiga had shrunk my already  reasonably small prostate even more.  No gross EPE seen on the MRI as needles were inserted.  Note: No spacer used because concern it would interfere with where the lesions were in my prostate (per the RO's Fellow) and placment of the needles. RO feels that its possible treatment with the HDR Brachy and follow-up EBRT maybe Curative.  I am realistic with my diagnosis of G9 with intraductal histology this not likely but will be happy if it helps kick it down the road abit.  I am very happy that the ADT appears to be working  as was suggested with the decreasing PSA.  Other than some slight burning on urination which is improving.  I have a little discomfort in perineum so using a cushion that helps takes the pressure of things. I feel really good and  have had no blood in urine since immediately after the procedure.  I know the long term side effects can takes years to show themselves but right now I am happy and feeling good. 

VascodaGama's picture
VascodaGama
Posts: 3406
Joined: Nov 2010

CMO,

Thanks for the report. I am pleased to know that you are feeling well. I wonder how much Grays have been delivered and how many more will EBRT involve. The negative MRI is also good news but will that mean that they will shorten the field of attack? Are lymph nodes covered in the protocol?

I hope the procedure continues well and the results are super. 

Best wishes 

VG 

CMO2021
Posts: 47
Joined: Feb 2021

Thank you VG,

I had a total of 15GY administered during the HDR through 17 needles.  I am meeting with my RO doing the EBRT and will discuss the final plan for the EBRT not that HDR is completed.  I have one suspect pelvic node that is suspect so they  will give that node a "little extra" radiation and the plan is to hit the other lymph notdes as well. They will clean up the pelvic floor.  I will discuss the plan in more detail now HDR is completed regarding total GY.  I prefer to go a little more aggressive.

Best regards,

CMO

Old Salt
Posts: 822
Joined: Aug 2014

for the update.

Very good to read that your plan of attack seems to be working well.

Good luck with the next phase (EBRT/IMRT).

CMO2021
Posts: 47
Joined: Feb 2021

My monthly lab draws were done at MSK today with me being 2.5 weeks out from HDR Brachytherapy.  Everything looked good ELevated LFT's from last month all resolved.

I am a little disappointed that PSA went from 0.35 ng/ml to .45 ng/ml.  I'm hoping its due to the HDR brachytherapy.  I was hoping for at least .15 ng/ml but only time will tell if its a blip or is real.

VascodaGama's picture
VascodaGama
Posts: 3406
Joined: Nov 2010

Yes, you are right. The increase of the PSA is expected after radiation. A stable PSA may occur two months past EBRT. In any case the PSA level to judge success is to be from tests done after the end of ADT's influence. You should also check the testosterone  levels to get some understanding of PSA variations.

Let's wait and repeat the test two months after RT is complete. 

Best,

VG

CMO2021
Posts: 47
Joined: Feb 2021

Thanks VG,  I appreciate your voice of reason and calm.

Max Former Hodg...
Posts: 3699
Joined: May 2012

CMO,

I have not been in your thread for a time, but wanted to say a few things.  First, congrats that things seem to be going well and effective.  About a month ago, you mentioned high LDH.   LDH is a marker for CELL death, which is why it used to be employed as an indicator of heart attack severity.    As a lymphoma patient, I learned that it at times is more an indicator that drugs are killing off cancer cells than it is indicative of active disease.  Mine was around 500 at times, or perhaps a bit higher.  Levels this high can clog the kidneys, as they try to pass dead tissue, which is why chemo patients must drink massive amounts of water.   What I am saying is that high LDH can be interpreted as a good thing, but only your oncologist can address this.  Also, many oncology drugs skew liver enzymes and other results.   Following an accident decades ago, my Belirubin was 18.2, so I would not fret over what you reported, which I think was around 1.6.  At over 18, my sweat, when wiped off, was gold colored, and I looked like a fresh pumpkin, and my nails were bright yellow. The doctors thought I had passed into complete liver failure, but thinngs went back to normal, somehow.   On chemo my AST/ALG ran about 200% above normal, which did not concern my oncologist at all.  The state motto of S.C., from colonial times, is Whilst I breath, I hope.

Keep fighting the good fight, and keep winning,

CMO2021
Posts: 47
Joined: Feb 2021

Thank you Max, I appreciate your insight.  This sight  and its members help me maintain my sanity as I navigate this disease.  I really like the S.C. motto it is so appropriate for the challenges we face. 

Every time I see your profile picture you make me think of my Grandchildren who are  4 and 2, just thinking of them brightens my day.

 

Thank you for the words of encouragement.

Max Former Hodg...
Posts: 3699
Joined: May 2012

The baby is approaching two years of age.  He is gangbusters wide open all day, discovering new things by the hour.  Calls his adult German shepard 'Cissie,' because they tell him the dog is his sister.  They are inseperable.  It is profoundly therapeutic for me as well; leaves open the idea of hope for a better, future world.

VascodaGama's picture
VascodaGama
Posts: 3406
Joined: Nov 2010

Yes, isn't that ionic that we all speak the same language at our first steps and then divert to different dialects. BaBa is the language of all babies and it means the same to us. Max has always his particular way of interpreting occurrences. Always good posts.

I am like your gangbuster. I love dogs and they are my friends. One is a German Sheppard and the other a Rhodesian Lion (ridgeback). Were is the picture?

Best

VG

 

 

CMO2021
Posts: 47
Joined: Feb 2021

I have dogs as well and they also help keep my spirits up with their unconditional love and silly antics.

 

CMO2021
Posts: 47
Joined: Feb 2021

I am now  over half-way through my EBRT.  Due to my intraductal histology and having Gleason 9  my MO at MSK continues to have PSA drawn during my monthly labs even while receiving EBRT.  My RO acknowledged that it can be anxiety provoking due to potential bounces but they want to keep an eye on the PSA.  This months PSA was less anxiety provoking with it going down from 0.45 to 0.20. A testosterone level was also drawn and was  at 1.0.  They had to send the sample for ultrasensitive testing due to the testosterone being so low value.  So the ADT + Zytiga appears to be working regarding suppressing testosterone.  EBRT is going well relatively uneventful other then some mild diarrhea that started last week.  So all in all  I feel good with my progress so far.

VascodaGama's picture
VascodaGama
Posts: 3406
Joined: Nov 2010

I had RT in 2006 and also had diarrhea for two to three months. At the beginning, sometimes I would see traces of blood in the stool. I also felt burning when peeing. Doctors recommend avoiding certain foods but diets are not the cause of the disorder. It will be difficult to control the situation while inflammation at  the colon exits. It seems to me that one must try to find what makes him to feel better in a "trial & error" approach. My daily breakfast of bran (100%) with plain yogurt worked well for me but some guys avoided cereals totally.

The low T is good news. It is the purpose of the LHRH agonist. The lower PSA gives us joy but it is insignificant while inflammation is present. Your MO may be recording the results to chart it together with the results from other patients serving as reference data in future analysis and decisions. 

I recall that I would drink lots of water before each section of RT. Are you doing anything in particular?

Thanks for the update. 

Best, 

VG

CMO2021
Posts: 47
Joined: Feb 2021

Just my monthly update.  Finished EBRT Sep. 27th.  GI sx's have mostly resolved.   Today (13-Oct-2021),  I had my monthly lab draws.  Everything is basically within normal limits.  PSA continues to slowly edge down 0.17 ng/ml from 0.20.  Hopefully trend will continue. Overall, I am feeling pretty good.

Best to all,

CMO

bill1950
Posts: 3
Joined: Nov 2011

Hi CMO,

I left this on the website then came back and saw the "reply" button...

I am glad that you are feeling "good"...I followed all of your threads. I was interested since i was also diagnosed with intraductal PCa.

I am scheduled for Salvage HD brachytherapy at MSK next month.

Also on firmagon...second shot at end of month. 

My concern as possibly was yours, are the side effects. I am glad to know

that Dr. Zelefsky at MSK is tops in doing this procedure. I had EBRT in 2004-2005 (age 54) and found

only some fatigue at the 5th week. So this is my second round of "radiation". I see that Your treatment is three fold with HDT/Brachytherap/ and External beam...

The only  procedure with salvage is with two times with HD BT which are about 3 1/2 hours. If you don't mind i would appreciate hearing more about your experience. Of course, i didn't like hearing about the intraductal component. My understanding is that at MSK they treat it as aggressive cancer...Is that your understanding? 

Thanks

bill1950
Posts: 3
Joined: Nov 2011

Hi CMO,

Glad that you are feeling "ppretty good"...I followed all of your threads. Happy that i came across yours. My biopsy indicates also  intraductal PCa.

I am scheduled for Salvage HD brachytherapy at MSK next month.

Also on firmagon...second shot at end of month. 

My concern as possibly was yours, are the side effects. I am glad to know

that Dr. Z is tops in doing this procedure. I had EBRT in 2004-2005 and found

only some fatigue at the 5th week. So this is my second round of "radiation". I see that Your treatment is three fold with HDT/Brachytherap/ and External beam...

The procedure with salvage HD BT is about 3 1/2 hours. If you don't

mind i would appreciate hearing more about your experience. Of course, i didn't like hearing about the intraductal component. My understanding is that at MSK they treat it as aggressive cancer...(I am traveling from Upstate NY).

Thanks, Bill

CMO2021
Posts: 47
Joined: Feb 2021

Hi Bill,

Glad to give you my experience with the HDR Brachytherapy.  Mine was done by Dr. Gorovets but Dr. Z is probably the most experienced Brachytherapy Doc at MSK.  My experience was pretty straightforward. Checked in at the Brachytherapy floor.  They prepped me started IV and all that good stuff.  Dr. G came in and consented be and asked if I had any questions. One of his residents subsequently wheeled me down to the Brachytherapy surgery suite. They got me on the table and before I new it I was out.  The next thing I know they are  bringing me into recovery. A very pleasant nurse kept a close eye on me brougught me graham crackers and juice.  Once I felt ready to pee sent me to the rest room with a urinal.  I had no problem urinating very slight amount of blood (trace) and then she did an ultrasound to ensure I wasn't having any urinary retention.  After that and another set of vitals and clearance by Dr. G  I was discharged  From start to finish just about 4 four hours. A little uncomfortable sitting (felt like I was sitting on a spongy ball).  I highly recomment a hemmorhoid cusion from Wallyworld.  Mine had a cutout you could remove  that helped to keep pressure of off the prostate. I took the tamulosin (flomax) and pyridium (you will pee bright orange) and really had very mild discomfort which improved over two weeks and by four weeks I felt back to normal regarding sitting and urinating.  All in all a positive experience.

Regarding the ADT and Zytiga,  I have been very fortunate worse side effects are the hot flashes.  The firmagon injections are the most uncomfortable while Lupron is not so bad.  I have done well with Zytiga no elevated liver values, hypertension or elevated glucose.  So again I feel very lucky.

Having intraductal and a lot of G9 is not great but nothing I can do about it but go at it hard.  MSK does consider it very aggressive High risk PCA. From all I read intraductal is very heterogenous regarding response to treatment with some doing well for having high risk disease and others not responding well at all.  With having a suspect node the plan was ADT and Zytiga for 3 months then HDR Brachy and then EBRT.  I really think Zytiga is critical in treating intraductal.  My testosterone is 1.0.  I have a long ways to go on this journey but I am confident in my choice for treatment and have been very happy at MSK.  Also ask about having genetic testing at MSK if not already done.

Maybe more detail then you needed, but feel free to reachout with additional questions.  FYI I grew up in upstate NY just south of Utica, and make it back a couple times per year.  I wish you well with your HDR Brachy and ongoing PCA journey.

Best regards,

 

Chris

  

bill1950
Posts: 3
Joined: Nov 2011

Hi Chris,

   Thanks for letting me know more about your experience at MSK! It's rare to find a fellow traveler in this "elite" group in having intraductal...🙂

    I have found some guys on inspire.com ...however, haven't found anyone with doing salvage HD brachytherapy. At MSK they tell me they do this kind of salvage treatment but i don't know how often. according to the articles, studies which i have read it is a reasonable approach to take after having had EBRT...I had a good experience with the external radiatio...

   I must commend you for all of what you went through before going going this route. I believe that at least one guy who i have been in contact with went the same as yours!

   I had a couple of pathologists read my biopsy and they basically said the same about having the intraductal...not sure what this means in terms of a future outcome but as you say, it has to be treated "hard"...

   At 71 it is a little challenging to "know" about having a rare kind of PCa but my guess is that it is difficult to hear at any age. I am retired and my hope is that this treatment will at least eradicate the cancer to a large degree and possibly totally.
    I'll let you know what happens at MSK after my treatment in a few weeks! It will be in two "fractions" one week apart...Nov. 3 and 10...

   I'm not from this part of NY...born on Long Island and brought up in Jersey...I suppose this could be a decent time of year to be "recuperating" and "healing"...

I can be inside looking at the snow! 🙂

Take care, Bill

CMO2021
Posts: 47
Joined: Feb 2021

Hi Bill,

I wish you well keep me posted on  how you are doing and I wll do the same.

Take care,

Chris

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