I am scared and confused - recently diagnosed

Welcome to the Reluctant Brotherhood. Sorry to here of you diagnoses and we are all here for you. When I was diganosed with prostate cancer my urologist recommended that I read the book "The Guide to Surviving Prostate Cancer" by Dr. Patrick Walsh (a recognized expert in treating prostate cancer). This book is easy to read and discusses the disease and the treatment options that could be availiable to you. It will help you understand what the Dr's are telling you. I highly recommend you do your research and do not take council of your fears.

Based upon my research and the information found in the book by Dr Walsh,the following is what I can share with you:

1. The prostate is an origin that is gift wrapped in a layer of tissue. Even if there is perineural invasion there is still a good chance that the cancer is still confined to the prostate area which is called tissue confined cancer.

2. Like in all surgeries the success of the surgery and post surgery complications are depended upon the skill of the surgeon. Quiz the potential surgeon in his technique and his success rates. My surgeon utilized a technique that combined the robotic and open prostectomy procedure. The benefit of this techique is that the surgeon can see and feel the prostate as it is being removed (See Dr Walshs book). Also, with this technique the surgeon will be able to remove the seminal vesticals and a lymph node for the pathologist to review.

You are going through a very scary time, please remember your family is scared also and can help you through this. There is no shame in discussing your fears with your loved ones.

Good Luck and our prayers go out to you.

Rick

lewvino said:

Greetings and welcome to the
Greetings and welcome to the club that no one wants to belong to! I found out about my prosatate cancer at age 54 with similiar PSA and Gleason Score of 7 (4+3) though after my robotic surgery it was changed to 7 (3+4)

The good news is they have found your cancer and it can be treated. I was scared to death as others on this forum are when they first hear the Cancer word.

Do some research on your doctor and ask how many robotic prostatecomies has the surgeon performed? The more experience the better!

We all have the fear during surgery on 'nerve sparing' I believe one of the first words I asked after waking up was how many nerves were spared?

Of course there are no promises. I went to Vanderbilt in Nashville Tn for my surgery. The doctor spared 100% of the nerves on the one side and in his estimate 60 - 70% on the other side. I am able to have erections with the help of Levitra.

If you feel the need to talk to any of us that have been down this road before you just let us know. I can be reached by the CSN email option if you would like to chat.
Oh yes, you mentioned that you are worried about cancer outside of the prostate. I have a positive margin following surgery. I'm currently at about 18 months post surgery and pulling 0's on my PSA tests. Will it stay there? Of course I hope so but have decided that I can not spend my time worrying about it but instead choose to help others.

Just think after your surgery you will be joining another club and that is the Cancer survivors club!

Good luck to you on your journey
Larry

Welcome Jim
Jim. i was diagnosed 8 years ago. i was the same age as you. nobody likes to hear those three dreaded words "you have cancer". the shock will wear off and then it will be time to educate yourself. understand your pathology report completely. there are a lot of ideas and experiences thrown around here and you will find them very helpful. everybodys cancer has there own special circumstances. welcome to the club Jim.

Decisions
Jim, your post is a touching synopsis of what so many of us who have been diagnosed with prostate cancer go through after we receive the news that we have prostate cancer. I am sure that the conflicting biopsy reports have compounded your confusion and uncertainty about the right course of action and I fully understand your emotional reaction to your condition by wanting to get the cancer out of your body.

As you may know by now prostate cancer is most often a very slow growing disease and by the time it gets detected it has already been in your body for several years. The timeline from your diagnosis in late December to your decision point this month is very fast and I wonder if you have given full consideration to the wide variety of treatment options that are appropriate in your case. As a relatively young man the surgery choice you have made may very well be the right course for you to take given your desire to have the cancer out. I realize you have a date with a surgeon soon, but I would encourage you to slow down a bit and take the time to explore other treatment courses. A few more months at this point is unlikely to affect your ability to have surgery and I am sure that if you discuss a desire to explore other options for your own peace of mind would be something your surgeon would support as well. (If he doesn't encourage you to fully explore a full range of potential treatment options, I would start worrying about my choice of surgeons...)

Each treatment course has potential side effects that must be balanced between your personal priorities, quality of life expectations, and efficacy in treating cancer. I would encourage you to consider delaying your surgery for a few months to take the time to explore these other options. Since you will not have a chance to go back and do this over again, you really want to go forward with your eyes wide open after considering all the options and how the side effects of your final choice will affect each and every day of the rest of your life. If after looking at other options you still believe that surgery is the best choice for you, at least you will have the peace of mind of knowing that you have fully researched all the potential alternatives and you won't have buyer's regret downstream.

I know this is a very tough decision for you and your family and I wish you the very best no matter what your final decisions might be.

Best of luck and I truly hope that you soon gain the peace of mind that will enable you to return to a normal life.

K

newly diagnosed
Hello Jim, and welcome,
Being newly diagnosed (dx) with PCa is indeed a very scary and confusing time for you, as well as for your wife. My husband, PJD, and I have been there. His PCa stats were similar to yours when he was dx in Feb 2010: healthy, active & no pre-existing medical issues; 3 adult children, etc. Then: nodule found on DRE, initial biopsy report of G 3+3=6 downgraded to G 3+4=7 after 2nd opinion review at a well known reliable pathology lab; PNI identified (Perineural Invasion); 9/12 cores positive w/many at 70-100% involved, etc. Yes, different pathology labs read biopsies differently (downgraded, upgraded or confirmed results are possible) and, it is critical to your PCa staging that the lab doing the 2nd opinion is a well respected nationally regarded PCa pathology lab, such as Johns Hopkins.

While PCa is considered a “man’s” disease, it is actually a "couple’s" disease for a man and his wife/partner. In addition to many men, quite a few women are knowledgeable about PCa and have a valuable perspective to offer and share. Your wife will be an important companion and supporter on your PCa journey and it is key that she be included and educated along with you about everything PCa. One of the first things we did after dx and, which I strongly recommend for anyone newly diagnosed before making any tx decision, was to locate several face to face PCa networking/educational groups in our community/city. These PCa groups are free, offer valuable resources & info for beginning your PCa education and most groups welcome and encourage wives to attend. Some groups are better than others, so if you opt to attend, try to visit several different grps. In addition to face to face PCa info/networking, some groups may offer emotional support sessions to address the roller coaster of emotions that come w/ PCa, such as fear, anger, depression, confusion, coping w/ potential tx side effects, etc. You can Google “us too prostate cancer,” “The Wellness Community,” and/or also call the 800 # of ACS (American Cancer Society) to locate PCa groups in your area. Knowledge is power and will help in taming the fear factor. While the tx course that PJD chose is discussed elsewhere on this forum, it is intentionally omitted from this post, because whether you choose surgery, radiation, hormones or some combination of PCa txs, etc., each man is different and what may work for one, may not work or be right for another. Take some time, learn as much as possible about your individual stage of cancer BEFORE making a tx decision so that you, along with your medical team, believe it is the right choice with the best chance for successful outcome.

Making a PCa tx decision when you are under the duress of fear and confusion is not advisable. As indicated in your post, you still have many unanswered questions that need to be answered and discussed (pre-tx) with your current doctors, as well as with 2nd opinion doctor consults, about the accuracy/extent of your PCa staging, especially in light of the downgraded Gleason and PNI identified in the 2nd opinion biopsy report. When PNI is identified on the biopsy path report, as it was in PJD’s case, there is a LIKELIHOOD (not absolute) that the cancer is locally advanced and MAY have penetrated the prostate membrane nerves, possibly extending to the prostate bed, seminal vesicles and/or local lymph nodes. Given your revised 2nd opinion biopsy stats, additional pre-tx testing may be indicated in order to better analyze the extent of the PCa by identifying if the PCa is contained or locally advanced.

If indicated, tests such as a bone scan and a pelvic CT are usually standard tests (pre-tx decision) to rule out distant metastasis to bones and/or organs. Those tests usually result in negative findings unless the cancer is very advanced. In addition, an endorectal MRI with spectoscopy using Tesla 3 technology, is considered by many in the PCa medical community to be the gold standard in diagnostic tools for determining whether the PCa is locally advanced, such as to the seminal vesicle(s) and/or the local pelvic lymph nodes. The Tesla 3 is available at a limited number of teaching university hospitals nationwide and has higher resolution than the Tesla 2 version. Having this test was important in PJD’s case as it changed his PCa staging (pre-tx) from a T2 to a T3 and helped guide him and his doctors by identifying which tx choices might have the best chance for successful outcome with the least amount of side effects.

After initial dx, we took some big deep breaths and, more importantly, some time (3 months) to become educated about PCa before a tx decision was made. That time included research, add’l testing, developing a long list of questions and obtaining answers from multiple consults with a variety of different PCa tx disciplines (experienced and skilled open & robotic RP surgeons, radiation oncologists, PCa oncologist, urology oncologist, etc.) before PJD had enough info to make an informed decision and go forward with a treatment plan that was right for him.

At almost a year out from initial dx, PJD is doing very well. His PSA, Testosterone, DHT #’s all within acceptable stable levels, feeling very good, living & enjoying an active and healthy lifestyle. We are not naïve and know things could change in the future but, for now, life is good and I’m happy to report that there is a good life to look forward to after a dx of PCa.
Best,
mrs pjd

mrspjd said:

newly diagnosed
Hello Jim, and welcome,
Being newly diagnosed (dx) with PCa is indeed a very scary and confusing time for you, as well as for your wife. My husband, PJD, and I have been there. His PCa stats were similar to yours when he was dx in Feb 2010: healthy, active & no pre-existing medical issues; 3 adult children, etc. Then: nodule found on DRE, initial biopsy report of G 3+3=6 downgraded to G 3+4=7 after 2nd opinion review at a well known reliable pathology lab; PNI identified (Perineural Invasion); 9/12 cores positive w/many at 70-100% involved, etc. Yes, different pathology labs read biopsies differently (downgraded, upgraded or confirmed results are possible) and, it is critical to your PCa staging that the lab doing the 2nd opinion is a well respected nationally regarded PCa pathology lab, such as Johns Hopkins.

While PCa is considered a “man’s” disease, it is actually a "couple’s" disease for a man and his wife/partner. In addition to many men, quite a few women are knowledgeable about PCa and have a valuable perspective to offer and share. Your wife will be an important companion and supporter on your PCa journey and it is key that she be included and educated along with you about everything PCa. One of the first things we did after dx and, which I strongly recommend for anyone newly diagnosed before making any tx decision, was to locate several face to face PCa networking/educational groups in our community/city. These PCa groups are free, offer valuable resources & info for beginning your PCa education and most groups welcome and encourage wives to attend. Some groups are better than others, so if you opt to attend, try to visit several different grps. In addition to face to face PCa info/networking, some groups may offer emotional support sessions to address the roller coaster of emotions that come w/ PCa, such as fear, anger, depression, confusion, coping w/ potential tx side effects, etc. You can Google “us too prostate cancer,” “The Wellness Community,” and/or also call the 800 # of ACS (American Cancer Society) to locate PCa groups in your area. Knowledge is power and will help in taming the fear factor. While the tx course that PJD chose is discussed elsewhere on this forum, it is intentionally omitted from this post, because whether you choose surgery, radiation, hormones or some combination of PCa txs, etc., each man is different and what may work for one, may not work or be right for another. Take some time, learn as much as possible about your individual stage of cancer BEFORE making a tx decision so that you, along with your medical team, believe it is the right choice with the best chance for successful outcome.

Making a PCa tx decision when you are under the duress of fear and confusion is not advisable. As indicated in your post, you still have many unanswered questions that need to be answered and discussed (pre-tx) with your current doctors, as well as with 2nd opinion doctor consults, about the accuracy/extent of your PCa staging, especially in light of the downgraded Gleason and PNI identified in the 2nd opinion biopsy report. When PNI is identified on the biopsy path report, as it was in PJD’s case, there is a LIKELIHOOD (not absolute) that the cancer is locally advanced and MAY have penetrated the prostate membrane nerves, possibly extending to the prostate bed, seminal vesicles and/or local lymph nodes. Given your revised 2nd opinion biopsy stats, additional pre-tx testing may be indicated in order to better analyze the extent of the PCa by identifying if the PCa is contained or locally advanced.

If indicated, tests such as a bone scan and a pelvic CT are usually standard tests (pre-tx decision) to rule out distant metastasis to bones and/or organs. Those tests usually result in negative findings unless the cancer is very advanced. In addition, an endorectal MRI with spectoscopy using Tesla 3 technology, is considered by many in the PCa medical community to be the gold standard in diagnostic tools for determining whether the PCa is locally advanced, such as to the seminal vesicle(s) and/or the local pelvic lymph nodes. The Tesla 3 is available at a limited number of teaching university hospitals nationwide and has higher resolution than the Tesla 2 version. Having this test was important in PJD’s case as it changed his PCa staging (pre-tx) from a T2 to a T3 and helped guide him and his doctors by identifying which tx choices might have the best chance for successful outcome with the least amount of side effects.

After initial dx, we took some big deep breaths and, more importantly, some time (3 months) to become educated about PCa before a tx decision was made. That time included research, add’l testing, developing a long list of questions and obtaining answers from multiple consults with a variety of different PCa tx disciplines (experienced and skilled open & robotic RP surgeons, radiation oncologists, PCa oncologist, urology oncologist, etc.) before PJD had enough info to make an informed decision and go forward with a treatment plan that was right for him.

At almost a year out from initial dx, PJD is doing very well. His PSA, Testosterone, DHT #’s all within acceptable stable levels, feeling very good, living & enjoying an active and healthy lifestyle. We are not naïve and know things could change in the future but, for now, life is good and I’m happy to report that there is a good life to look forward to after a dx of PCa.
Best,
mrs pjd

Jim
I was where you are last fall and chose to go AS after looking at a lot of choice and met with many people. You will get good and bad advice,. and have to trust you're gut and believe in GOD to help sort it all out.

God bless you and hope you figure out the best for you.