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Diagnosed

Geezer 1
Posts: 3
Joined: Apr 2021

I had a biopsy Monday and was told today that I have PC. However Dr said if I have to have PC its the best I could hope for. 2 samples out of 12 showed PC and 1 was a very low count. PSA was 6.5.  I'm a somewhat healthy 67. Somewhat anxious personality. Dr is suggesting RALP and I want to be aggressive to get rid of PC if possible. He said I have a 90-95 percent chance fo being PC free with the surgery. I could not just moniter it as I'd be nervous 24/7. Radiation  also would leed to anxiaty and possible other side affcts. Thus I'm planning on RALP. I'd like to ask 2 questions for now.

 

#1 any opinions on having RALP with PC as I discribed?

#2 I know I'm getting old but my energy level seems a bit low as of late. Does/can early stage PC affect energy?

Clevelandguy
Posts: 688
Joined: Jun 2015

Hi,

if it was me I would want a MRI or a PET scan to determine if the cancer is contained to the Prostate.  You said that your cancer had a very low count but you should know the Gleason score.  It should be a number like 3+4 or 3+3 or 4+3, just examples.  Cancer cells in the Gleason score are measured from basically 3-7 with a 3 having low agression and a 7 being highly agressive.  A number like 3+4 means the most amount of cancer cells noted were a 3 and the lesser amount of cells noted was a 4.   If your cancer is confined to your Prosate then surgery could be a good idea, so could radiation.  Now is the time to do your homework on the side effects of surgery and the various radiation protocols.  Each has their side effects, both good and bad.  Also if your cancer is graded a 3+3 and depending on the location inside your Prostate Active Survielance could be an option(just monitor it over months or years). I have included a link to get you started on your journey. Remember great doctors+great facilities=great results.  Second opinions are never bad.

https://www.cancer.org/cancer/prostate-cancer/treating.html

Dave 3-4

Geezer 1
Posts: 3
Joined: Apr 2021

Picked up my report today. 2 positive out of 12. 3+3=6 10% 3+3=6 15% both graded1.Again any opinions on me having it taken out which is my current plan? 

Clevelandguy
Posts: 688
Joined: Jun 2015

Hi,

At 3+3 you have time to decide on AS, Surgery, or Radiation.  It's really up to you and your family to decide based on the risk of surgery vs radiation.  Do you homework, discuss with your family and decide.  I had surgery and don't regret it.  I am 7 yrs. out since surgery with undetectable PSA.  Just drip a drop or two now and then and the ED is gone.  Took me about two years of progressive healing. A lot of people have had the same success with radiation also.

Dave 3+4

hopeful and opt...
Posts: 2326
Joined: Apr 2009

i was diagnosed in 2009 with two cores of low volume 3+3=6 at age 66. I am still on Active Surveillance simply being monitored, no treatment. I have avoided all active treatments such as radiation or surgery that can have major life changing side effects. 
All medical organizations to include but not limited to the American Urological Association recommend Active Surveillance as the preferred treatment of low volume low aggressive prostate cancer. In fact many doctors do not consider a 3+3 a cancer. 
As Cleveland recommends, a T3 MRI is a great idea to make sure that you qualify for this program. The MRI may show extracapsular extension, that is, if the cancer has escaped the capsule which appears to be un-likely and determine potential aggressive lesions in the capsule, ranked on a scale that the radiologist use called a "pirad score"

I know that you are afraid and have all those negative feelings but they will go away. There are men with probable low risk disease who out of fear of the unknown overreacted and suffered consequences of active  treatment

Tech70
Posts: 69
Joined: Nov 2017

As suggested above, a T3 MRI would show any lesions.  I had essentially the same biopsy results but two 3T MRI's have shown no tumors large enough to be seen in the images.  Also, I would suggest having genomic testing done on the biopsy samples.  This would show how aggressive the cancer is and the probability of future spread.  A favorable result with the genomic testing can provide peace of mind if considering active surveillance.  RALP opens up the POSSIBILITY (not certainty) of issues down the road like urine leaking or impotence.  AS has essentially no side effects.  I would also consider getting a second opinion from a second urologist, since your doctor's recommendation of surgery without discussing other forms of treatment seems overly aggressive.  Best of luck.

VascodaGama's picture
VascodaGama
Posts: 3356
Joined: Nov 2010

I agree with above survivors. You should complete the diagnosis process before deciding on a therapy. The biopsy alone is not enough. Image studies should be done to provide you with a more precise clinical stage. I also think that your family should be involved in the decision process. Radical treatments for prostate cancer have attached side effects that will alter your quality of life forever. Get second opinions and educate on the details. PCa does not spread overnight.

Welcome to the board.

VG 

Old Salt
Posts: 803
Joined: Aug 2014

Geezer wrote in his first post that he would be 'uncomfortable' with the anxieties of Active Surveillance. I understand that. But I will re-emphasize that radiation is an option that should be studied. Anxiety will be an issue after surgery as well as after radiation therapy; it is for almost all of us 'survivors'. 

Geezer 1
Posts: 3
Joined: Apr 2021

What about energy levels before treatment. Did anyone notice a bit less energy before they were diagnosed? Or in hindsight believe they have more energy after treatment success?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3647
Joined: May 2012

I cannot disagree with anything anyone has written above.....  Your cancer is minor, and apparantly non-aggressive.  You are approaching 70 years of age.   A/S could possibly keep you treatment-free (and therefore no side-effects) for the remainder of your natural lifespan.  Capsular escape (metastasis or micro-metastasis) is extremely unlikely, such that either surgery or radiation would very likely be curative if you chose either.  That is, you would be 'cured' of the disease, in the laymen's sense of the word.

It seems to me (as you have said this repeatedly) that anxiety regarding the disease is a key element in your decision process.   This leaves surgery or curative radiation therapy.  I will say that my own case was similiar, and your reaction is not universal, but it is fairly common:  knowing that you would not have peace worrying.   We are each made the way we are made.     

R.P. surgery is a serious one.   Recovery will involve some pain, a week or so on a urinary bag, some time for urinary control to occur, and likely E.D.   How long on these varies dramatically .  One psychological benefit of surgery is that the post-removal pathology report will tell exactly what was going on, and very likely can estimate likelihood of permanent cure.  And, within a few months, yor PSA will go to zero, and remain there forever (as long as there is no relapse).

Curative Radiation Therapy (brachytherapy ['seeding']), fractionated RT (almost always IMRT/IGRT) or SBRT ('cyberknife') are virtually identical to surgery in curative success.  There is no surgery required, the proceedures involve no, or very little, pain, and there is usually no recovery required.  Side effects are RARE, but can involve urinary stricture (blockage, easily repaired), colon damage resulting in ulceration, and skin irritation.  Again, all of these are rare today.   After radiation treatment, your PSA will oscillate, or drift up and down, for a period, sometimes as long as a year, until its lowest baseline, or nadir, is acheieved.  This drift is normal, and does not suggest anything, in most cases.  Then, for future reference, this nadir is used to suggest possible relapse, if such occures.

What I sketched for you here is an Overview, very general.   Men will write exceptions to all of the above, but such accounts do not refute the general or statistical truths I have shared.   I myself had RP  (DaVinci) six years ago, and have been well pleased.   Just me speaking here....

Fleet Foot
Posts: 15
Joined: Feb 2021

I don't remember my numbers now, but my GP suggested I talk to a urologist when a continual rise in my PSA numbers indicated to him a concern of PCa.  I interviewed several urologists and it basically got down to getting a biopsy.  I got it and of the 14 samples taken cancer was found in 12.  Right, wrong or indifferent I wanted the cancer out and did not even entertain a Watchful Waiting scenario.  A good friend a couple of years older than me, I had just turned 72 when diagnosed, had radiation several years prior and told me if he had to do it over again he'd have the RALP.  I read up on both and went with the RALP.  No problems since.  I developed a post-operative infection a couple of days after being discharged, necessitating a return to the hospital for a couple of days but no problems otherwise.  The catheter notwithstanding.  PSA's since have all been virtually undetectable and it'll have been 3 years since the surgery in June.

JJO
Posts: 17
Joined: Sep 2017

know that you have said Active Surveillance would give you anxiety, but, as another poster said, Active Surveillance is the recommended standard of care for treating someone with your diagnosis!   It's not some risky out there standard of care and there is ample data that the outcomes are just as good as treatment, without the need for treatment.  There are top doctors (not all) who think that Gleason 6, which is what you have, should not be called cancer for the very reason that the use of the term Cancer pushes men to get treatment they don't need.  

Consider this.  If you go on AS, you will be closely monitored each year to make sure no new cancer surfaces that needs treatement.  If you have a RP, you will still be monitored each year, to make sure the cancer does not return.  While the monitoring is less invasive if you have the RP (no more biopsies), is the anxiety really much less?   

I remember the final words from one of the top prostate cancer experts when I went to him for second opinion:  "If you choose RP, I'll shake your hand and wish you good luck.  If you choose AS, I'll also shake your hand and wish you good luck,  If it were me, however, I'd choose AS."   

lighterwood67's picture
lighterwood67
Posts: 292
Joined: Feb 2018

The decision on a treatment plan will come down to you.  Your question:  #1 any opinions on having RALP with PC as I discribed?  No, if my Gleason was 3+3=6, I would go with Active Surveillance. #2 I know I'm getting old but my energy level seems a bit low as of late. Does/can early stage PC affect energy?  I had no energy level issues and still don't.  My Gleason 4+3=7;  Radical prostatectomy 3/2018.  Cancer undetecatble; fully continent; intimate with wife.  If I were you, I would stick with the AS plan.  This will save you from being nuked or gutted for a while or maybe for the rest of your life.  Good luck on your journey.

caysary
Posts: 1
Joined: May 2021

you need to send your slides for a second opinion preferably johns hokins. 

sross111
Posts: 6
Joined: May 2019

I am in the same boat as you...two cores with Gleason of 3+3=6.  I have been on active  surveilance for about two years.  PSA tests every six months and annual biopsy.  Being treated at University of Chicago.

PayneOrtho61
Posts: 14
Joined: Jul 2020

I was diagnosed with PCA in may of last year at 58 years of age.  I had an MRI guided biopsy with a 10 core sample.  My rising PSA at 5.1 was the tipping point for my physician to refer me a urololigist. I had two cores that were positive for cancer with one sample at Gleason 3+3=6 and one at Gleason 3+4=7.  I was first advised to go with AS, but I was recommended to have a genomic study on the biopsied tissue.  There are several companies offering genomic studies of the biopsied tissue, but my urologist used the Decipher genomic risk assessment.  My Decipher score came back very high with a 36% chance of high grade cancer and a 14% risk of metastasis within 5 years.  That information was enough for me and my urologist to proceed with definitive treatment.  I had RALP this past December and was back at work in 2 1/2 weeks.  I have regained almost 100% continence, however my ED is substantial and have not yet been able to have intercourse with my wife.  I am on ED meds with minimal improvement, but have been told I should regain potency within the year.  I haven't lost hope but am beginning to wonder how much better it will get (Both cavernous nerves were spared).  I just had my second urtra-sensative PSA test yesterday and my PSA is undetectable so I am very likely cured.  If I had to do it over, I would choose the same treatment, but my view might change depending on my degree of ED.  I must say that my urologist did not fully prepare me for the ED that comes with RALP.  I am gratefull for my cure, but am depressed about my ongoing ED.  If I were you, I would definitely request a genomic risk assessment of your biopsy tissue to help you on your decision.

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