Just got my biopsy results .. now what?

VascodaGama

... otherwise in good health, but ...

Grahambda,

My lay opinion on the data you posted above, and taking into consideration your age, worries regarding ED (young wife) and quality of living (HIIT), is that RT may be the appropriate choice for you in the short run. You got 7 positive cores out of 14 (not 5 as indicated in your above post) of which grade 4 seam to represent a larger volume. The PSA (10.7 ng/ml) is high and the positive DRE (abnormalities on right lobe) creates the suspicions of extra capsular extensions.
The data puts you into high risk of having cancer spread. In your shoes I would only chose surgery after confirming with a PSMA-PET exam that cancer is contained.

Radiation treatment can be delivered via several means. Your left lobe seams clean so that Braky may be a good try. This could be done in combination in a protocol using adjuvant IMRT. You need to check for any lymph node involvement but I would also cover the closed ones in the IMRT field.

I wonder why you are against RT. Many urologists we consult are against RT, using negative terms to frighten patients (the type of your doctor's suggestions). You should investigate further into the treatments for prostate cancer, discuss your findings with your family and decide accordingly. Your quality of living is in jeopardy. Do things coordinately and timely.

Please note that we are not doctors but a bunch of survivors speaking out our own experiences and knowledge gained along our survivorship.

Best wishes,

VGama

VascodaGama

Avi; RT= Radiation Treatment

Avi, I believe you ment to say RP (radical prostatectomy).

ramaka

Yes, apologies for the typo :

Yes, apologies for the typo !

ramaka

My dad's experience post RP

Hi Grahambda:

My dad was 71 years old when he got diagonised with PCa back in April 2017. His GS was 9 with cancer spread to nearby lymph nodes. He is one of the healthiest person I know (wakes up at 5 AM, exercised every day for an hour and walked 5K every single day rain or shine, feeling good or under the weather!). He underwent RP (with removal of lymph nodes) in September and below is his journey so far post RP, hope it helps you in some ways:

Positives:

He had no complications post surgery (except Lymphocele which I will share in detail below). He had no issues with incontinence. Once the catheter was taken out, he felt and behaved like a "new" man full of excitement and got back to his true passioon of visiting different countries. His follow-up PSA scores were<= 0.1.

 

Negatives:

I read his is a rare case but 6 months post RP he went in for a routine follow up visit and the Dr found a lump in his abdomen. They did US and found it was a lymphocele. They put in a drain pipe in the abdomen, monitored him in the hospital for couple of days and released him. Once he went home, he complained of pain in his left hand and was taken to another multi-speciality hospital where they said he had experienced a massive heart attack (not sure if the ymphocelle and heart attack were connected). They could not do an agioplasty since he still had the drain pipe in his stomach and the Drs were scared that if they gave him any blood thinners he might bleed profusely. Finally the urologists and cardio guys met and decided he was ok to have the angogram. The results showed blockage in his heart but not that bad that it needed angioplasty. He was prescribed a few meds and sent home. His Lymphocele has still not drained completely since past 6 weeks, but recent US showed that it is draining and he has a follow up again next Wednesday. 

I am not trying to scare you wth the above, but just sharing what my dad is going through post RP. Please make sure you and your surgeon know about the Lymphocelles post RP even if it is rare occurances! 

Wishing you and your family the best!

Avi.

lighterwood67

ramaka said:

My dad's experience post RP

Hi Grahambda:

My dad was 71 years old when he got diagonised with PCa back in April 2017. His GS was 9 with cancer spread to nearby lymph nodes. He is one of the healthiest person I know (wakes up at 5 AM, exercised every day for an hour and walked 5K every single day rain or shine, feeling good or under the weather!). He underwent RP (with removal of lymph nodes) in September and below is his journey so far post RP, hope it helps you in some ways:

Positives:

He had no complications post surgery (except Lymphocele which I will share in detail below). He had no issues with incontinence. Once the catheter was taken out, he felt and behaved like a "new" man full of excitement and got back to his true passioon of visiting different countries. His follow-up PSA scores were<= 0.1.

 

Negatives:

I read his is a rare case but 6 months post RP he went in for a routine follow up visit and the Dr found a lump in his abdomen. They did US and found it was a lymphocele. They put in a drain pipe in the abdomen, monitored him in the hospital for couple of days and released him. Once he went home, he complained of pain in his left hand and was taken to another multi-speciality hospital where they said he had experienced a massive heart attack (not sure if the ymphocelle and heart attack were connected). They could not do an agioplasty since he still had the drain pipe in his stomach and the Drs were scared that if they gave him any blood thinners he might bleed profusely. Finally the urologists and cardio guys met and decided he was ok to have the angogram. The results showed blockage in his heart but not that bad that it needed angioplasty. He was prescribed a few meds and sent home. His Lymphocele has still not drained completely since past 6 weeks, but recent US showed that it is draining and he has a follow up again next Wednesday. 

I am not trying to scare you wth the above, but just sharing what my dad is going through post RP. Please make sure you and your surgeon know about the Lymphocelles post RP even if it is rare occurances! 

Wishing you and your family the best!

Avi.

If the cancer had spread

If the cancer had spread why did they do a RP?

Grinder

grahambda

Robotic Davinci surgery was exactly what was required in my case... but the PC was entirely contained and had not escaped the capsule.

It like a sealed box full of roaches in your house. As long as the box is sealed, the easy solution is... get the box out of the house!

But once that box gets opened, roaches start scattering... taking the box out of the house is no longer the easiest option. 

As for side effects, the one that is inevitable for RP is the shortened length that we discuss at length (pun intended) throughout this forum. I lost 2" for sure. .. it may be because of the size of my prostate, i dont know. With BPH and a Staph infection, I dont know how big it was when infected, but it would shut all my plumbing down. With antibiotics, I could knock down the size to a manageable 250cc when i had my biopsy, and then down to 197cc during RP. As long as I kept it in the 200cc range, I could function with Cialis and Flomax. Once the infection flared up, it was off to the ER to get a Foley. 

At 197cc during the operation, I dont know if it took more of the urethra along with it. It may have had nothing to do with it... I don't know. If it did, then most guys probably don't have to worry about losing that much.

Incontinence was 6-8  month recovery, now about 98% recovered. I fold up Viva paper towels and stick a piece of double sided carpet tape along the folded seam. Much cheaper than minipads and more comfy. Since I hardly ever drip, they work fine in the rare occasion... I probably could get by without them.

ED for much longer with more gradual improvement. After over a year and a half, I have full recovery except for quirk... I have to make sure bladder is completely empty before any sex or... you get the idea.

So you asked, those were the side effects of RP in my case. It was an absolute necessity for me... but it may or may not be right in your case. Every procedure should be on the table and your urologist/oncologist/GP should have ONLY your best interest at mind.  There should be no other motive. In my experience, that is not easy to find, but they are out there.

ASAdvocate

Cleveland Guy -

I have read the three links that you cited in your April 3 post against radiation therapy, and found them to be unconvincing or irrelevant to prostate cancer.

You may feel a need to justify your decision to have have surgery and to live with its side effects. I get that, totally normal. But, to speciously attack other treatments that might be better for the next guy...well, please think twice. 

Clevelandguy

Very relevant

Hi,

Well that's your opinion, I think they are very relevant to what radiation can do to you. I have no regrets with my surgery and I am not trying to justify anything.  Just trying to let people know that all treatment plans have side effects.  Pick and choose carefully after you study them because they can effect you for a long time after you have the procedure. Surgery & Radiation have different effects both long term & shorterm.  It's all out there on the internet, just look it up.

Dave 3+4

hopeful and optimistic

side effects

Yes there can be side effects from any treatment, however surgery offers greater side effects that happen more often. 

For example, the possiblility of getting hit by a car when crossing the highway is greater, with more damage...surgery., and crossing local street also has a possiblity of a person getting hit by a car, but less often, with generally less damage..radiation.   Active surveillance...don't have to cross the street, no collateral damage.

Please understand 

Clevelandguy

Comparisons?

Don't know if I would compare Pca to a car/pedestrian accident but I guess stranger comparisons have been made. AS is fine but does nothing to get rid of the cancer, it just monitors it.  Great if you want to do that but I wanted to treat my cancer.

Dave 3+4

hopeful and optimistic

.

AS is considered a valid decision for low risk cancer, and is recommended by medical professional, including but not limited to surgeons. In fact in my case a world class surgeon recommended AS for me, and monitored my case for a year. He did not want me to suffer the consequences of active treatment.....these doctors take an oath, "do no harm" 

There are men who when diagnosed with cancer that qualifies for active surveillance insist or are guided by unscupulous doctors to have treatment such as surgery or radiaiton, because they do not want to have the cancer in their body, and many suffer side effects from these treatments, and thus experrience a poor life quality for the remainder of their lives. Like you, they said "Great if you want to do that but I wanted to treat my cancer."

 

Clevelandguy

Yeah in my opinion active

Yeah in my opinion active growing cancer is not a thing I want in my body, just makes sense to me. No doctor guided me to this decision, something I knew I wanted long before I saw a doctor.   Just my choice to not let it grow and become more of a ploblem later on.  If I would have done AS my cancer would have escaped and spread to my bladder and Prostate bed. AS might be a good choice for you but that does not make it right for everyone, depends on where the cancer lays inside of your Prostate, mine was close to the edge.  Intervention was necessary in my case.

Dave 3+4

hopeful and optimistic

.

Agree...........Not saying that AS is for everyone...it is not. It is only for those who meet the criteria for low risk....but among these men who do qualify, many to their misfortune over treat. 

 

MK1965

Surgery vs Radiation

In surgery vs Radiation contest my vote goes to Radiation.

Radiation SE are delayed and progressing slowly so you don’t experience them as total nock down where you loosing your game. You have more options, non invasive options, to counteract them where in most cases PDE5 inhibitors are working giving you your sex life back. 

What I like about it, livin life as it could be possible at older age. Pop up Viagra and do the job. If your heart is strong enough, sex Life could be as good as with normal aging.

i would forget everything about surgery if, if at least I would have some kind of semi sex life. I am 17 months post RP and my last attempt to have a sex was last Labor Day weekend. Also missing ability to experience good and satisfied orgasam. I am in sexless life now.

MK

grahambda

Update Genomics DX testing ?

just had my first consultation with Ongologist at Moffitt since my Biopsy back in March. He walked me through the options and stated that although I am on the low risk end of intermediate (GS score of 3+4 and PSA of 10.8 ..see this tread for detailed results) he suggested AS should not be an option , so surgery vs radiation. Came down to a probable course of intense 5 days of radiation. I would however like to get the Genomics DX test just to make sure. If that comes back with low risk score I may opt for a year or two of AS. Has anyone else had experiance with Genomics testing ? My reasoning is if the test come back with high risk then my decision will be made and no regrets on the probable side effects. Just hate to do this without being as sure as I can be and using all available tests. Thoughts?

SantaZia

Genetic testing is worth the time

I had the Prolaris and PTen tests which were worth my time especially considering AS. A second review of my biopsy slides by MDAnderson pushed me over to Hormone treatment as it changed my intermediate to the advance side with a 4+3=7. I also sent my samples to John Hopkins, but it won't change my treatment opinions. I am leaning toward pencil beam proton at MD, but could do treatment with radation at local hospital. It depends. I will need 48 days of treatment and although I can stay with my son in Houston I would rather be home with my wife. It is a hard choice but take your time. Good Luck!

 

68, PSA 5-18: 12.7, 4-30-18: 13.9, 1-30-18: 13.2, 1-13-18: 13.7, 5:04-12: 2.1

3-month injection of Lupron 5/21/18 Bicalutamide 50 mg 30-day supply

3+4=7 in two cores 2/13/18 or 4+3=7 MD Anderson review of images 5/21/18

1.8 lesion MRI T3 3/27/18 Bone scan clean

grahambda

SantaZia said:

Genetic testing is worth the time

I had the Prolaris and PTen tests which were worth my time especially considering AS. A second review of my biopsy slides by MDAnderson pushed me over to Hormone treatment as it changed my intermediate to the advance side with a 4+3=7. I also sent my samples to John Hopkins, but it won't change my treatment opinions. I am leaning toward pencil beam proton at MD, but could do treatment with radation at local hospital. It depends. I will need 48 days of treatment and although I can stay with my son in Houston I would rather be home with my wife. It is a hard choice but take your time. Good Luck!

 

68, PSA 5-18: 12.7, 4-30-18: 13.9, 1-30-18: 13.2, 1-13-18: 13.7, 5:04-12: 2.1

3-month injection of Lupron 5/21/18 Bicalutamide 50 mg 30-day supply

3+4=7 in two cores 2/13/18 or 4+3=7 MD Anderson review of images 5/21/18

1.8 lesion MRI T3 3/27/18 Bone scan clean

Thank you for the insight

And the all best with the treatment, this truly sucks!

grahambda

So the opposing view from a Robotic Surgeon

I met with the Dr that performed my biopsy earlier today to gain his insight on my prognosis and recommendation. Not surprisingly as the leading  radical robotic specialist (11,000 surgeries and counting !)  he was suggesting  that surgery was the way to go given my age and biopsy results. In summary his thoughts...

 

 

• Although he concurred my current state is on the lower end of intermediate risk,  but  due to the fact that 7 of the 21 core samples were confirmed cancerous  Gleason 6 (3+3 for three  of them) and Gleason  7 (3+4 four of  them) and were widespread in the right lobe and near the exterior of the gland,  in his opinion  Active Surveillance (AS) is not recommended as I already have a 15% probability that the the cancer may  have escaped the gland.
• When I requested a Genomics DX test he was fine  to make that referral  and would expect the result to return a low to intermediate  risk of aggression  given my Gleason and PSA score , "but the cancer is not going away and will only get more aggressive over time,  so a low DX score today may convince me to go the  AS route but this would delay the inevitable and longer I wait the probability of the cancer growth and spread is guaranteed - its not  IF but WHEN"
• When we discussed radiation as a treatment option in his opinion: "the side effects will eventually equal or exceed that of surgery, difference being with surgery the impact is immediate (ED and incontinence) but with a 90% chance of reversal within 3-6 months (of course no guarantees)  vs Radiation where the side effects will inevitable occur  but at a later date (6-12 months). He also noted that due to my biopsy revealing a widespread cancer within the prostate the radiation would need to attack the majority of the gland which could be an issue and needs to be considered. 
• He also cautioned that radiation "may" cause the secondary  spread of  cancer , so although it may treat the prostate there is a published high probability that cancer may appear in the rectum, bladder, colon  etc at a later stage  which would result in far more radical surgery being needed to address those areas  vs the  immediate  removal of the prostate which would greatly reduce  any such risk..
• He did make an "of the cuff" remark that if I chose the radiation route "that is  fine- but eventually you will come back to surgery for removal with  more serious  consequences and a higher probability of permanent   ED and continence issues".

 

So as you can imagine I am now totally confused, concerned  and unsure of which direction to take :-(       I know that the final decision has to be mine but to reach that conclusion  I need to be as informed as possible and have no regrets post- treatment regardless of outcome.

 

Thnask once again in advance for any input.

Grinder

imho

As I have been watching the latest posts here compared to archived posts, it's my impression that both surgery and radiation are both becoming safer and more surgeons and oncologists are becoming more expert at administering treatment.

 You cant hardly blame your surgeon for having confidence in his ability. If you had a radiation oncologist just as experienced as your surgeon he would say the same thing about surgery... that your risks are much greater than radiation.

If it were me, and keep in mind I am still relatively new here,  it depends on how experienced and expert a radiation oncologist I could find. If I cant find one as expert as the surgeon, then I would go with an expert surgeon over an inexperienced rad onc.

Experienced rad oncs are getting better at targeting and experienced surgeons are getting better at nerve sparing. I can attest to the latter because my prostate was still 10x normal size making surgery more difficult.. But was wildly successful anyway. 

It would help to find a side effects history of the doctors and hospitals in your area... But that is difficult to find. 

SantaZia

grahambda said:

So the opposing view from a Robotic Surgeon

I met with the Dr that performed my biopsy earlier today to gain his insight on my prognosis and recommendation. Not surprisingly as the leading  radical robotic specialist (11,000 surgeries and counting !)  he was suggesting  that surgery was the way to go given my age and biopsy results. In summary his thoughts...

 

 

• Although he concurred my current state is on the lower end of intermediate risk,  but  due to the fact that 7 of the 21 core samples were confirmed cancerous  Gleason 6 (3+3 for three  of them) and Gleason  7 (3+4 four of  them) and were widespread in the right lobe and near the exterior of the gland,  in his opinion  Active Surveillance (AS) is not recommended as I already have a 15% probability that the the cancer may  have escaped the gland.
• When I requested a Genomics DX test he was fine  to make that referral  and would expect the result to return a low to intermediate  risk of aggression  given my Gleason and PSA score , "but the cancer is not going away and will only get more aggressive over time,  so a low DX score today may convince me to go the  AS route but this would delay the inevitable and longer I wait the probability of the cancer growth and spread is guaranteed - its not  IF but WHEN"
• When we discussed radiation as a treatment option in his opinion: "the side effects will eventually equal or exceed that of surgery, difference being with surgery the impact is immediate (ED and incontinence) but with a 90% chance of reversal within 3-6 months (of course no guarantees)  vs Radiation where the side effects will inevitable occur  but at a later date (6-12 months). He also noted that due to my biopsy revealing a widespread cancer within the prostate the radiation would need to attack the majority of the gland which could be an issue and needs to be considered. 
• He also cautioned that radiation "may" cause the secondary  spread of  cancer , so although it may treat the prostate there is a published high probability that cancer may appear in the rectum, bladder, colon  etc at a later stage  which would result in far more radical surgery being needed to address those areas  vs the  immediate  removal of the prostate which would greatly reduce  any such risk..
• He did make an "of the cuff" remark that if I chose the radiation route "that is  fine- but eventually you will come back to surgery for removal with  more serious  consequences and a higher probability of permanent   ED and continence issues".

 

So as you can imagine I am now totally confused, concerned  and unsure of which direction to take :-(       I know that the final decision has to be mine but to reach that conclusion  I need to be as informed as possible and have no regrets post- treatment regardless of outcome.

 

Thnask once again in advance for any input.

Take your Time

It will be important to take your time and do some research. Your surgeon looks like a a high volume guy and maybe he has some patients that are willing to talk to you. I would ask him. Also get a second opinion on your Biopsy and get andy genetic tests and T3 MRI or other test done too. These will all help with staging your cancer treatment. I like the new book by Mark Scholz The Key to Prostate Cancer. There are a ton of other books too that you can probalble find used on Amazon. I think everyone needs 3 or 4 months to really figure this out. No treatment option is great, as far as potential side effects.