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Newly diagnosed and don't know which path to take

FifthWallfacer
Posts: 2
Joined: Aug 2021

Hi all, first post. I was recently diagnosed with prostate cancer. I'm 45 years old. My primary care doctor first gave me a PSA test about 3 years that showed an elevated PSA (4.9). I didn't think much of it and for a few years, I did regular PSA testing, all of which was remarkably consistent. Then last fall, my PSA went up to 5.59 and my primary care doctor suggested I see a new urologist. I did, and that urologist order an MRI. My MRI revealed a lesion with a PI-RADS assessment level 2 (low, or clinically significant cancer unlikely). I thought that sounded good, but my urologist ordered a biopsy. The biopsy found cancer in all the cores precisely where the MRI said the lesion was. All the cancerous cores were Gleason 6 (3+3). My doctor sent the cores off for genetic testing to see whether the cancer was likely to be aggressive. Those results came back that my cancer was likely to be slow growing. I was sent for genetic testing to see if I had any genetic mutations that might be cause for concern (BRCA, etc.), and I have no genetic mutations to be concerned about. In other words, all the tests came back as good as possible.

As a result of all this testing, my doctor has said I have two choices: I can remove the prostate now, or I can choose active surveillance. I need to make a decision, but I find myself going back and forth. Every day that passes I feel no closer to a decision. That's why I'm here. I don't know if anyone can really help me make this decision, but I need to at least talk to others who've gone through or are going through this decision.

A little about me might be helpful. I'm 45 years old and otherwise have no other health problems. I am happily married and we do not plan to have children. I have a great sex life and value this deeply. Because of my age, my doctor says that even if I choose active surveillance, I will eventually have to have my prostate removed. So I go back and forth between just wanting to get the surgery over and done with while I'm young so that I have the best chance of minimizing side effects, or doing active surveillance so that I defer the risk of side effects for as long as possible.

Anyone here been in similar circumstances? What helped you make your decision? Are you happy with your decision? What questions should I be asking that I'm not asking?

Sorry for the essay, but I would appreciate any advice or support that I might find here.

Clevelandguy
Posts: 703
Joined: Jun 2015

Hi Fifth,

First of all the choice is yours made by consulting your doctors(Urologist + Oncologist) and discussing with your family.  At 3+3 you can stay on AS and be monitored via biopsies for sometime in the future. The only real problem with AS is repeated biopsies and the chance of infection which could put blood in your seamen and urine. Now is the time to look into the two main options to kill your cancer which are surgery and radiation if you want that path. Great doctors + great facilities = great results.  Results from either surgery or radiation vary from person to person.  I chose the surgery route and had very good improvements on both my Ed and urine leakage problems in about a year and a half.  I wanted the best chance of removing the cancer and getting on with life even with some side effects.  My Ed is gone and I still wear a light pad for an occasional drip or two during heavy lifting.  Radiation is a slow kill over months or years depending the type of radiation you choose.  Surgery or radiation will give you side effects, some with almost none long term some with diasterous long term. I consider myself lucky and do not have any limit to my activites and several radiation patients have the same results.  Surgery gives you Ed & urine leakage right away with improvements where radaition usually giving you less of those two problems immediately but can worsen over time.  Again everyone has different results and different healing rates so results will vary. It you and your families choice based on the info you gather.  I am a strong beliver that if you do a lot of research and pick the best doctors and facilities, your journey down the path you chose will be sucessful.  Good luck....................

I have included a link to get you started.

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

Dave 3+4

 

 

 

 

 

eallenwish
Posts: 5
Joined: Sep 2010

After a LOT of research, this was the option that my husband went with and it has turned out to be a great decision. My husband did telehealth appointments with many of the leading doctors from all over the US on several different type of treatments and did a lot of online research as well. This is what we went with-  The type of machine that delivers this method of radiation is called a Viewray- it's like a cyberknife but has an MRI built into it so it can gives more precision radiation.  There is a type of treatment that can be done for prostate cancer that only involves 2 weeks  or slightly over that , to do the entire prostate.  The radiation is given in slightly higher doses but has less chance of problems afterwards due to the precision of the placement of the radiation.  They avoided the ureter, nerve bundle etc.  My husband only had tireness and some soreness during the treatments and NO effects afterwards and had a  totally successful outcome! There are several locations in the US that has a Viewray machine. Again we did a lot of research, telehealth conferences with doctors and we choose to go with Dr. Parikh in Detroit ( we are in TN).  We could not be happier with the care of the entire team. Since we were there they have also opened a new treatment building with a new machine and in that same facility they have efficieny apartments for out of town patients to stay in for very reasonable costs.  At your age I would be concerned with treatments that could have long term  complications. The Viewray would be an option that would decrease those and would also be a quicker treatment plan.   Dr. Parikh does telehealth 2nd opinions with patients so you don't have to travel there for your initial visit.    Just wanted you to know about that option in case you need that now or later.  Surgery can have more complications.  It wouldn't hurt to get a second opinion from one of the doctors using this type of radiation delivery method. Our local urologists were not familar with this type of treatment.  Just off the top of my head, I'm thinking there is around 16- 18 machines in the US so there may be one near you.  A couple of the locations would not do a telehealth appt initially so if you need that you will have to ask the location you are looking at if they can do that for you.  

lighterwood67's picture
lighterwood67
Posts: 300
Joined: Feb 2018

If it were me at your age, I would go in this order AS;  Radiation; Surgery.  Please do not get me wrong on this.  This is your decision. I am 70 years old. I had the surgery in March 2018;  At this time my cancer is in remission.  For the past 3 years PSA undetetctable.  I am fully continent;  I am intimate with my wife, when I can catch her.  She is awfully fast.  Good luck on your journey.

hopeful and opt...
Posts: 2335
Joined: Apr 2009

I was diagnosed in March 2009 with two out of twelve cores at a small amount of 3+3=6. At that time I sought out a major center of excellence UCLA and entered a program with them to monitor my disease. During the years,  some more aggressive changes were found in my case, however I am able to continue with the program ... there are specialists at various major centers that specialize in active surveillance for prostate cancer. These centers have the latest and greatest equipment to monitor. 
I am still in the active surveillance program. No physical side effects from active treatments. 
Every major medical organization to include but not limited to the American Urological Association recommends Active Surveillance for those who qualify. 
Suggest that you get a second opinion from a major center of excellence 
Also suggest that you receive a second opinion on your pathology. Have your doctor send the slides to Jonathan Epstein at JohnsHopkins, a renowned pathogist apathogist who is an experts expert. All decisions that you make is based on your pathology

Another suggestion is to request an MRI hopefuply with a Tesla 3.0 to see if extra capsular extension may exist. 
Best

H

eallenwish
Posts: 5
Joined: Sep 2010

My husband did the second opinion on path with John Hopkins as well. Definitley a good suggestion.

 

ego
Posts: 6
Joined: Aug 2021

See my comment "Prostate Removed"

FifthWallfacer
Posts: 2
Joined: Aug 2021

I posted this on Sunday and walked away for a couple of days. Just logged in and very grateful for the generosity and support of this group. This has been an emotional time and to be going through this during the pandemic has left me feeling extremely isolated. I've had my diagnosis for 6 months now and still only a handful of people outside my family even know I'm going through this. You've already given me some food for thought and whatever I decide, I know will be a very personal decision based on a whole heap of factors, some medical, some not. For instance, I'm in NYC and feel good about my doctors and the quality of care here. But what if I decide to move and lose my doctors and my current health insurance? Then will I still want to do active surveillance? Just so many factors and things to consider. What I am grateful for is that I have the gift of time to decide. I know many do not have that on their side. And yet, I don't want to agonize over this decision for a long time. I just want to get to a place where I can feel like I am owning my decision.

eallenwish
Posts: 5
Joined: Sep 2010

One of our top choices for the Viewray was the one in NYC and the doctor there that does it has a fantastic reputation.  If you  want to talk to a doctor about  Viewray radiation for prostate, you are in a great location.  I'm sorry I cannot recall the doctor's name off the top of my head. if you need it let me know and I can look it up. I believe he was in on some of the studies of the protocals with this type of tx.  Best wishes and you are doing exactly what you need to - a lot of homework! It was overwhelming at first but the more we asked and the more we learned we became very comfortable that we were making the best decision for my husband. you will get there as well for your own situation.  

 

PayneOrtho61
Posts: 15
Joined: Jul 2020

Dear Fifth,

I was diagnosed at 59 yrs of age last may.  I had a very similar experience with a PSA hovering around 2 to 4 for about 2-3 years and then it started to climb.  My MD recommended that I see a local urologist for an exam.  The urologist recommended a new type of urinalysis called ExomeDx, which can detect more significant high grade prostate cancer.  I took this urinalysis and it indicated a very high chance of PCa.  I was referred to get an MRI and biopsy.  4 of 10 cores of the biopsy revealed cancer with two scoring  Gleason of 7(3+4).  I also had genetic testing to find if there was a genetic predilection for cancer and this came back negative. The cores were then sent for genetic testing and the results showed a high degree of high grade cancer. I am telling you this, because before getting the genetic test, my urologist felt even with the Gleason score of 7 he felt that I should follow with AS.  However, after the high Decipher score he felt I should have definitive treatment.  I chose the surgical route and I am doing very well.  I have full continence 4 months after surgery, but I am still impotent.  I am hopeful this will return along with my sex life.  I am married and have two grown children, so I feel happy with my decision despite impotence. This is a very personal decision but I think you have some time, so I am sharing my story not to tell you what to do, but to let you know that no matter what route you take there is a light at the end.  I have had two blood tests showing undetectable PSA since my surgery and will continue testing regularly and I am very hopeful.  Best of luck on your journey.

Clevelandguy
Posts: 703
Joined: Jun 2015

Hi Fifth,

 Very important to own your decision, do your homework and make a decision.  Do it and live and adjust your lifestyle with your decision. I have not let my decision slow me down at all, keep on keepin on...........

Dave 3+4

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