New CA Diagnosis

hi, friend. i'm so sorry about your diagnosis. with a diagnosis such as a 3+4, i would certaily recommend treatment. here are a few things you can do over the next six months.

1. you should call john hopkins labs and have them give you a second opinion. the number is 410.614.6330  410.955.2405 and ask for, ms. jackie. tell her you'd like dr. john epstein to take a 2nd look at your results. make sure you ask for a copy. if you live out of the state of maryland, it will cost you $275. they won't bill you right then, but they will bill you. john epstein, is one of the top pathologist to look at prostate cancer. 

2. i would look into HDR brachytherapy. that's the type of treatment i had. 

3. purchase a book "The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer" this book will explain prostate cancer to you on a level thats very easy to understand and will provide you with all of the options you may be a good candidate for. 

in other words you want to use this time to research and DO NOT allow any doctor talk you into a treatment without having an understanding of the pros and cons.

Surgery or radiation, seems to be where you are at.  Both can be curative (actually cure the cancer).  My cut on this is to make sure that you understand what is happening during the surgery.  I will use me as an example.  RARP 3/18, 67 years old at the time, (prostate removed (gleason 4+3) seminal vesicles removed, some lymph nodes removed, bladder neck reconstruction), urethra shortening, nerve sparing).  These physical parts are not coming back.  You need to understand the full impact of their removal.  Status:  PSA undetectable; fully continent (no depends, no pads, no thins); sexually active to about 80% with no add-on, with add-on 100% (viagra (sildenafil).  I did not elect the radiation treatment.  I did consult with a radiation onocologist.  Just remember this is your decision.  Make sure you weigh out all the side effects of both types of treatment.  You need to also weigh out, if the cancer returns, what are your options based on the treatment you elect.  Anyway, good luck on your journey.

All of us go through shock and all those negative feelings when we are first diagnosed. This lasts for some months, so it is important to be in positive situations. Spend time with positive people, and, for example,  if you attend religious services (by zoom), you want the clergyman to be upbeat and positive.

 Let me emphasize that prostate cancer is very slow growing, so you do not have to rush into making a quick decision. You want to do things in a coordinated way to achieive the best results.

You mentioned that you live on the West Coast. I live in So. CA and am very familiar with the best doctors and centers of excelence here, and am willing to share with you, if you wish.. There are other posters who may provide insights about various geographic areas....What ever treatment that you decide on, you want the very best, an artist to handle the various aspects of your case. You also want to strive to be treated in a high volume center of excellence.

I am enrolled in an active surveillance protocol where I receive targeted biopsies using a Tesla 3 MRI and an Artemis three dimensional machine (a competitor of the UroNav machine that was used in your case). T. At any rate my doctor targets the suspecious lesions, then does a stratefied random sample of the rest of the prostate. Generally I receive about 15 sample cores.....

My highest Gleason is a 3+4; I have a small amount of 4 so this is considered appropriate for active surveillance. Since a 3 dimensional biopsy showed this Gleason, I had a follow up biopsy a year afterward that trigulated the area to see how extensive this was. Nothing was found in the area.

Your biopsy also indicates a small amount of 4, however it appears to me that there is a lot of Gleason 6. Now Gleason 6 will not leave the prostate, however when there is a lot of Gleason 6, it is very possible that there can be Gleason 4's hidden in the prostate. At any rate your doctor ordered a Decipher test, the results turned out to be a  decider. 

FYI

PIRAD ranks potential of significant cancer on a 1 to 5 scale, 1 being least likely and 5 most likely; 3 is neutral

The T3 MRI, does not show microscopic tumors, but the results of the MRI indicate that no cancer was found.

You may wish to visit with a medical oncologist for consultation that is unbiased....he/she may suggest that you have a pet scan to "really, really" make sure that there is no cancer outside the prostate. This might be overkill, but I would get an expert medical opinion. Axium petscan approved by medicare is a good one, however there is an investigational pet scan, PSMA that is the best....there is a $2700 charge for this one...UCLA does it.

Surgery is a localized treatment, and is more likely to have side effects such as incontinence and erectile dysfunction that radiation., shortening of the penis

There are various types of radiation; they all are comparable in outcome. The radiation oncologist can adjust the radiation to extend beyond the prostate; that is treat small cancers that may have escaped the prostate. 

One that I favor is SBRT. Stereotactic body radiation therapy delivered by cyberknife, novalis and other machines. It's been around since 2003. It's a technological advance that has improved through image g uidance and development of shapeable radiotherapy beams. SBRT has the ability to to deliver higher dose of radiation in 4 or 5 sessions, over two weeks, and provides similar results to IMRT that takes 8 weeks. The amount of total Gy depending on the doc ranges from about 35 to 40 gys, much less than IMRT. While you are treated you can go about your regular activities.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5679773/

Also good idea to have a colonoscopy before radiation.

n 

Payne,

You got fantastic responses above. I also think that you shouldn’t rush but try using this period for researching, consulting and educate on the details of the diagnosis, treatment options, risks involved and the side effects. Any thing you chose will affect your quality of life. You will have to decide wisely and then accept your newer you.

Prostate cancer got many faces and each case is different but similar, even if heredity is in play. I think that you shouldn’t compare your case with that of your father. However, you should consider the results of the Decipher genomic test which you describe in your first post, that it rates the cancer aggressive. This genomic test is typically used for predicting adverse pathology (AP) at radical prostatectomy. In other words, it predicts a worst case scenario once we got the gland specimen (and other parts) under the microscope.

I have noticed that you commented in having a clinical stage cT2a but the biopsy report signals positive cores at both lobes. That would classify your case as cT2c instead. Probably it may be advisable in getting a second opinion on all the biopsy cores. You also indicate the finding of Perineural Invasion present which gives the probability for existing extraprostatic extensions. Invasion in seminal vesicles and the nerve bundle is usually taken into consideration as an escape route of the cancer. The term “No extraprostatic tumor is seen” is ambiguous as it covers a very low percentage (0.03%) of the capsule. You need assurances that your case is contained otherwise surgery alone would not be the best option.
I recall my diagnosis when the urologist suggested in our first visit as T1 (based on PSA, DRE and image studies) then it move to T2c (adding the biopsy results) and after surgery it become pT3a pN0 MX.

Second opinions are good even if they create confusion. It is common to find the urologists recommending surgery as much as radiotherapists recommending radiation. A medical oncologist specialized on PCa may be helpful in formulating a final decision. You have time and use it wisely.

Best wishes and luck in this journey.

VGama

ucsf is a center of excellence. As a patient, I am happy to be enrolled in a sister hospital...ucla.

I attended lectures by mack roach who is radiation oncologist at ucsf. I found his knowledge to be impressive. He specializes in IMRT and Brachy therapy, not SBRT. He is a source that you might want to consider.

As robotic surgery has been in existance for a while now, there are various docs who are excellent. Up until about 6 years ago, I spent a lot of time exploring the reputations of the surgical leaders in this specialty. The one that stood out to me was a Dr. Tewari in NYC. He did lots and lots, and developed a procedure, that would diminish erectile disfunction. I don't know about the surgeons in san francisco area, but in LA there is a dr Reiter at ucla who I think is a genius. I spoke with him a couple of years ago. He told me that he uses mri guidance to reduce his surgical margins...I think that his was 05 By comparison top surgeons ranged from .12 to .18 Also at usc, there is this guy Dr Gill who was brought from  the cleaveland clinic to develop a first rate department,  who is a top surgeon..at any rate the dos he brought here are first rate as well. The team is among the best......I am giving you this info so you can do your due dilligence, but to be honest, I'm not a fan of prostate surgery.

.....................................

General

Not only are men in your family more likely to be diagnosed wih prostate cancer, but there is a correlation between prostate and breast cancer, so the women(your daughter and others) in your family need to get those mamograms.

Diet 

There have been studies among prostate cancer patients who have had prostectomies, that indicate more aggressive recurrance among those who eat red meat and high fat dairy.....basically heart healthy is prostate cancer healthy, so you and all your family members need to eat in a heart healty way.....

Heart disease.....is epidemic....so all of us are more likely to die of heart disease than prostate cancer......so we need to follow a heart healty life style.

Hi All,

 As I have stated before choose wisely on the treament that is the best for your set of circumstance whether it be surgery or radiation. With Surgery you will know within a few months if your cancer is gone(several zero psa tests) and radiation has a longer cancer die off time due to the slow kill of radiation(many months). The effectivity of Surgery vs Radiation on the long term "kill" rate will always be debated as many people who post here have had both treatments protocols report excellence results.  Its funny that the people who have not had either seem to be the experts on which is better.  Kinda like a person who has never played football telling you how to run your High School football program.  Choose wisely and study all the the side effects for both treatments before you choose, they are not reversible at a later date.

Dave 3+4

Hi Asa,

When I'm getting some plumbing work done I will always choose the experienced plumber not the one who has just "studied" on the subject.  Studies are fine reading but I would rather get help from someone who has gone down that road firsthand to see how it really was.  Radiation or Surgery are good tools and if I was coming to this board for advice and I did five years ago, I would much rather hear from first hand accounts rather than someone who has studied peer reviews.  Not right for you to bad mouth surgery or radiation based on your opinion.  Nothing snarky about my comments just real experiences based on my personal journey.  Hopefully some of the radiation folks will chime in to give Payne some real life info on how they went through radiation.  None of us are doctors but real life survivors or either radiation, surgery, or asa treatments and if I was looking for advice I would want to hear from people who have walked the talk as they say.

Dave 3+4

The key to prostate cancer by mark sholz md(world renown medical oncologist who only specializes in prostate cancer presents 30 experts who explain 15 stages of prostate cancer

Here are some comments made in the book about the side effects of surgery for your information. Of course you need to read book so that you will make your own deicsion, to determine  if these comments are appropriate.

"only about 15 percent of men will have the same erectilefuncion two years after surgery as sthey had prior to surgery" Kelly Chiles md and john mulhall md in the chapter about sexual dysfunction...these docs specialize in sexual dysfunction

With reference to incontenence

"high bladder pressure with muscular spasmss of the the bladder that develop as the bladder fills occurs in 50 percent of men. It is possible athat these bladder spasms are related to nerve damage from protatectomy."

Damage to the sphincter muscle occurs in 35 percent of men after surgery"

"A combination of bladder spasms and sphincter damaage occurs 10 percent of the time"

Gary Leach,MD (chapter on surgical side effects affecting urination) He specializes in the diaagnosis and treatment of incontinence--the above quotes talks about his patients.

"In contrast to surgery, IMRT is noninvasive, with no need to make a single cutor remove an entire organ from the body. Because of this IMRT has a much lower risk of bleeding, pain and infection that surgical approaches. Furthermore, given that the urethra runs through the prostate, surgical removal of the prostate requires removal of part of the urethra, then stitching the cut ends back together, leaading to risk of urinary leakage that may requrie wearing  pads throughout the day. Surgery can also lead to to shorti=ening of the penis. By contrast, IMRT has a much lower risk of urinary leakage and essentially no risk of penis shortening"

Zacgary Zumsteg md and howard sandler md, both radiation oncologists, one at cedars sinai

The above are various non scientific based comments , not random study based, that simply show that major side effects are prevelant with surgery. Generally there are sub industries that developed to treat men that experienced side effects from surgery. This is written so you will think two, three or four times before you decide on having a prostectomy.

At this site there are a few men, like cleveguy above, who have have surgery, and think that it's better than apple pie, so I am sure will provide you with comments

You made some good points...thank you for the input

Best