Questions: Husband's recent diagnosis

Hello Debralyn and Husband, welcome to the greatest club no one ever wanted to join. I am sure you will find a lot of great information, support, and love in the posts to follow.

We have all been here before, you are facing a firehose of information, your heads are spinning, you just want a simple answer and to charge at it! Most of us here will say that you were actually very well served by your urologist who refused to give you that simple answer, because the answer to which is best for your husband (and you) depends on many factors beyond just the information you presented so far. From what you have said it sounds like your husband has favorable, intermediate risk, PCa. With only that information, indeed the long term outcome wrt likelihood of cure is similar between radiation and surgery, so your decision needs to be made on many other factors that only apply to you and your husband. These other factors include side effects, age, general health outside of his prostate, your physical location (proximity to care facilities), and most dastardly, your health insurance.

I am sure you have read some of the "To the newly diagnosed" thread pinned to the top of the forum. Here are some additional threads you may find helpful from my journey from diagnosis to decision and a few others after me that I offered some thoughts.
https://www.healingwell.com/community/default.aspx?f=35&m=4247527

In this thread, the patient's uro gave the answer you sought, "Do Surgery. Period." Of course, urologists are surgeons, that is what they do, and some are notorious for pushing surgery, perhaps to promote their own business.
https://www.healingwell.com/community/default.aspx?f=35&m=4257142&g=4257174#m4257174

Here is another similar pathology to your husband's recently going through the same journey.
https://www.healingwell.com/community/default.aspx?f=35&m=4258012

Again, slow down, take a deep breath. You have plenty of time to learn all of the implications of treatment options on the both of you, and to make the right choice. Good luck on your journey, we are here to help you through.

It was just one year ago that I received the same diagnosis. My head was splitting as I dealt with accepting it. To my mind, cancer was a death sentence.

Blissfully, I was wrong.

The diagnosing Uro was a proponent of surgery. With he, himself, wielding the scalpel. I would come to later discover that his "firm" had a reputation as being a "one-stop shop." And that angered the hell out of me and my wife.

Being a breast cancer survivor, my wife contacted her oncologist. He referred us to a radiation oncologist at Monmouth Medical Center in West Long Branch, NJ.

We met with Dr. Sang Sim and were impressed. From his knowledge to his bedside manner, it was clear he was the way to go.

My PSA was 8.7. Gleason was 3+4=7. I was 71 y/o at the time of diagnosis.

After forty-five radiation treatments, I began the six-month wait for the "jury to reach its verdict." That PSA was drawn in my new Urologist's office. The doctor told me it would take twelve minutes for the result.

Those twelve minutes were an eternity.

The verdict? Down from 8.7 to 2.8. Now, one year afterwards - - 1.2.

There are no double your money-back guarantees with either route. You amke an informed decision; part of which includes knowing if there is a secondary path should the first lead to a dead end.

Yes, it is totally in your hands. What worked for me might lay an egg for you. Certainly, the after-state of your sexual abilities, et al. can play havoc. Only a liar denies that is part of the panic for most afflicted men. I know it sure was for me.

Yes, it is YOUR husband's choice. And he WILL choose wisely.

Praise the Lord that he has you at his side.

Godspeed.

NJ Fred

Hello Debralyn and welcome. First of all, your PCP make a HUGE mistake; if mine did that I would look for another doctor ASAP. Checking PSA is doctoring 101 and if he/she can't get that right what else are they missing. Secondly, while I get that you are frustrated that hubby's urologist won't make the call you should be grateful. The "usual" case we find here is that a urologist (surgeon) has said surgery is your best option and we are trying to slow the member down and have him explore all of his options. All of us who have been thru this have learned that the good news is that there ARE options and we must become educated patients to make the best decisions for ourselves.

So getting educated on our disease is your/his first step which I see you have started. Read the sticky thread at the top of our forum that is designed for new patients. I recommend three books which will give you broad perspective, (1) Dr. Walsh's, "Guide to Surviving Prostate Cancer" (more of a surgical perspective and (2) two books by Dr. Scholz, "Invasion of the Prostate Snatchers (a little old but still good) and his more recent book, "Keys to Prostate Cancer".

You already know about getting an expert opinion on the biopsy slides. Go ahead and do that ASAP. Dr. Epstein is "the man" and once you have his determination you will be better equipped to make a decision...the Gleason score can indeed make a difference in which treatment you choose.

Re treatments, I certainly agree with your urologist, i.e. given hubby's scores most treatments are likely to cure him equally. Surgery has its advocates (not me) but if you he must know his exact pathology and/or he just needs to "get it out" that may be the choice. Beware though of the potential onerous side effects of incontinence or ED that may occur. Radiation has several options of its' own and you will likely need to go to several different doctors (or a center of excellence) to get proper perspectives. SBRT, LDR Brachytherapy and HDR Brachytherapy all seem like reasonable options to explore. You will also want to look at traditional IMRT but that may be overkill for your situation.

It would be nice if this was easy; it's not. But the most satisfied patients and spouses seem to be the ones that are willing to put in the hard work of getting educated, seeking alternative opinions and making a decision that fits their particular situation.

Good luck and stick with us. We are here to help you get thru this.

Jim

Hi Debralyn. At the first of my two post-biopsy visits with my uro/surgeon to discuss treatment options after my G10 (5+5) biopsy, he presented the RP vs RT options to me and told me either was a valid choice, and it was a choice that I had to make. We discussed treatments and their pros & cons at that and another visit. It was only when I pointedly pressed him that he said for someone with my diagnosis "if it were my brother, I'd recommend surgery." Keep in mind my uro is a surgeon. But I've known and respected him for years, and that figured into how I weighed his opinion.

After going over his outcome stats (at an interview, always ask a surgeon about their oncological, urinary, and potency outcome stats for men with your specific PCa profile), my preliminary research, and my own preferences, I opted for surgery (also because I had a great results from the TURP he performed a few years priorm and he has done a high volume of RPs for many years.)

Two men with identical PCa profiles can make different treatment choices for many reasons. It can be a difficult choice for the reason that we (fortunately) do have choices. And the RT choice involves further decisions, as you probably know by now.

As you do your research, ask us and the docs you consult with more questions. Write them down and bring them to appointments -- otherwise I can all but guarantee you will forget some. As your questions are answers you will have new ones. Get complete copies of all tests and reports (not summaries) for your records!

All the best,

Djin

Thank you everyone!!!

You are all so great. Your replies mean the world to me. I have already followed some of your advice. I've begun filling out the form for Johns Hopkins to receive a second opinion on the lab work. I've ordered the books and have begun reading Dr. Scholz's book, "The Key to Prostate Cancer." Well written and extremely helpful. The other two books are on the way. I've also received a recommendation from my personal doctor for one of the best prostate surgeons in our area - Dr. Jason Hafron. A friend is going to recommend us to a top urology oncologist who performs RT.. I'm working to build an A Team. I will be going to the beginner post you suggested next.

To be more complete about Jeff's situation, here are his complete results:
Positive cores, 4 out of 12
Highest Gleason Grade is 3+4=7 (ISUP Group 2)
PSA 9.94
DRE normal T1c
NCCN Guidelines: tumor intermediate risk
Speculated TNM stage = T1c NO MO
No extra-prostatic extension is identified
Gleason 4 ranges between 0% and 40% of tumor in these cores
Cribriform pattern 4 is present

One of the things Jeff and I also have to consider and how it impacts the above information, is the added burden of having an aggressive form of genetic cancer. Following is information from that report:
Genomic Risk is High - 83rd percentile of risk
Risk of Metastasis (with RT or RP) in 5 years is 1.6% and in 10 years is 3.8%
Risk of prostate cancer mortality (with RT or RP) in 15 years is 6.0%
Risk of Adverse Pathology at RP is 35.8%

90% of radiation oncologists recommend the addition of ADT to radiotherapy when the 10-year risk of metastasis is is greater than or equal to 5%.

My immediate questions are:
1.) How does this genetic information change how we think about the other results from his biopsy, etc?
2.) Has anyone on this forum faced similar genetic risks?
3.) Our new urology oncologist surgeon cannot see Jeff until October 11. Is this too long considering the Genomic Risk?

It's a struggle to know how to think of all of this and the timeline for when he should be engaging in the treatment stage of this process.

Thank you in advance for any thoughts or words of wisdom you might have to share.

Thank you again, with gratitude,
Debralyn

Thank you, Halbert, your words are very helpful. I am learning from all of you that decision making is a journey. I initially thought it would be a clear-cut recommendation, and we would just follow it.
Your last three words – "Try to relax" – will be my mantra

Debralyn,

I am really new here (like you) so I am not sure I can answer anything. I do come to offer my data for comparison...and to be honest, to see your husbands, neither now make sense to me!

Here's what I mean, I will embed my data alongside yours for easier comparison. Keep in mind, I did not have needle biopsies as my biopsy was of surgical tissue since mine was discovered during TURP surgery.

Debralyn said...


Highest Gleason Grade is 3+4=7 (ISUP Group 2)
PSA 9.94
DRE normal T1c
NCCN Guidelines: tumor intermediate risk
Speculated TNM stage = T1c NO MO
No extra-prostatic extension is identified
Gleason 4 ranges between 0% and 40% of tumor in these cores
Cribriform pattern 4 is present

One of the things Jeff and I also have to consider and how it impacts the above information, is the added burden of having an aggressive form of genetic cancer. Following is information from that report:
Genomic Risk is High - 83rd percentile of risk
Risk of Metastasis (with RT or RP) in 5 years is 1.6% and in 10 years is 3.8%
Risk of prostate cancer mortality (with RT or RP) in 15 years is 6.0%
Risk of Adverse Pathology at RP is 35.8%

90% of radiation oncologists recommend the addition of ADT to radiotherapy when the 10-year risk of metastasis is is greater than or equal to 5%.

My Decipher Score:

Clinical Stage: T1c
Gleason Score: 3+3
NCCN Risk Category: Very Low/Low (Honestly, I have NO IDEA what this score pertains to!)

As you can see, we have the same Clinical stage (T1c)
He is Gleason 7, I am Gleason 6 (that will most certainly go up with me after further biopsies, but, I really don't know as I am not sure of the difference in accuracy of needle biopsies or my tissue biopsy.) My tissue was 45g!! So there was a great deal of tissue for them to examine...not sure if that makes mine more thorough or what.

The part that is of most confusion for me is the Decipher scores for your husband and me:

ME:
Genomic Risk is High - 0.71 (96th percentile of risk)
5 /10 Year Metx Risk: 1.5%/ 3.5%
15-year Mortality Risk - 2.8%
Risk of Adverse Pathology - 40.6%

JEFF:
Genomic Risk is High - 83rd percentile of risk
5/10 year Metx Risk: 1.6% / 3.8%
15-year Mortality Risk - 6%
Risk of Adverse Pathology - 35.8%

So, from our reports, I am higher risk than Jeff but my Metx risks are both lower, albeit, marginally, as is my 15 yr mort. Notice my adverse pathology is higher than Jeff's.

So, as a novice lay person (not a doctor), I am unsure as to why I am higher risk but have same or lower numbers and what that all means. Not sure if this helps but it is a pretty similar comparison as that is what you asked about. Hopefully, this can start to shape your questions. What I am learning from this forum and speaking with others dealing with this is there is a great deal of optimism and hope for Jeff and I as this is very slow moving and these reports don't always translate to what we are actually facing. At least I am not sure that they do since I am no where near an expert on this.

Take some deep breaths, as other have said (I struggle to take my own advice, so trust me, I understand what you are struggling with. That much I know! ) and know that this is very treatable. Oddly, and perhaps a bit morosely, my own Uro/oncologist, who did my TURP surgery, said "Listen, you don't have brain or lung or pancreatic or all those other terrible versions of cancer. If you are going to get diagnosed, this is the one you want!" Not sure that actually made me feel better but as I ponder it, he is right. Just get educated and over time, I think for Jeff, you, my wife, and I, things will calm down a bit and we will get on a track and start living again. Something someone from this forum said that stuck with me is for us newly diagnosed, this will cause you to reel for up to a year before you get your head (and emotions) back on track...

We are all in this together and we are all here for you. I am very appreciative of these guys who are kindly and gently answering my flailing questions about my diagnosis and stroking my nerves to help calm me down. It's a natural reaction. When my doctor told me (twice) "You are going to be just fine" it didn't sit well with me but perhaps he is right. He's been doing this for 30+ years so he has seen this many times so perhaps he does know...

Stay in touch...I'll gladly exchange info and chat as you need.

Chip

Debralyn - My husband has a mutation called RAD51c - His sister also has RAD51c - she's an ovarian cancer survivor. The mutation is under the BRACA family and basically means nothing to any of our PC oncologists. We were hoping that more information would be out there because it's been 2 years since they found the mutation in my husband. The genetic testing will be helping for our children who will test and make informed decisions if they carry the mutation. There are so many variations of PC cancer. This is not the cancer we want. It's horrible.
Wishing you both the best in your treatment decisions.
Brooke

Debralyn…Welcome to the forum. I hope you find it a great place to assist you and your husband in this time of need. I believe at one time or another the folks on this forum have bee in the same place you guys find yourselves in now.

Although no one can tell you what’s the best treatment decision we can share our experiences and possibly help you make an informed decision. For most low and intermediate risk guys either surgery or radiation have very good success at eliminating cancer. My experience is in SBRT and I can share it’s a great choice. I chose it since it had what I believe to be the highest rate of cancer control and it also had a relatively short treatment time. It also had the lowest rate of nasty side effects. For my case I saw no value in a pathology report. I also realized that no doctor can tell you, “we got it all”. I also liked the fact that today’s RT (especially SBRT) is extremely precise and treat not only the prostate but the area around the prostate as well while attempting to reduce damage to nearby organs.

The negative side for our situation was there were no centers nearby that offered SBRT. I believe in hindsight this location issue become a big plus. We ended up traveling to Cleveland Clinic almost three hours away for treatment. We found the very best can make a big difference. I’m glad you and your husband are putting together an A-team. I always recommend no matter what treatment you select to find the best practitioner and team available.

For some intermediate risk situations a short course of ADT may offer some security. It’s my understanding that the ADT makes the effectiveness of the radiation even greater. Good luck and keep us posted.

To all of you, I cannot tell you how much you all mean to me. That you are so dedicated, generous, smart, and thorough. I feel as if it weren't for all of you, I would be wandering around in complete darkness with no way to know where to go. You all are beacons of light in the darkness. I hope you know what a tremendous gift you are to people like me and my husband. Your kindness makes me weep. Thank you from the bottom of my heart.

Lapilot, your post is super helpful. We have been leaning toward surgery (in a wobbly – are we thinking correctly about this? – sort of way) and have an appointment with a top robot surgeon. Jeff is 66 and super healthy in every other way. He has never had any health problems. He doesn't smoke. He got into recovery in his mid-20s, so he hasn't had a drink or drug in decades. He's clean living all the way. We have a great life and great careers that we love. Lots of life to live. From my perspective, having a doable salvage treatment is optimal. The scary thing is that we might miss a piece of the puzzle and make the wrong choice. So, we are following the good advice here and doing our homework and asking questions. Thanks for the responsiveness. It helps immensely.

Debralyn, I'll give you some counter points to those raised re the appropriateness of choosing surgery:

1. Choosing surgery because there are salvage options is a false choice. There are salvage options for failed radiation that are as equally good and effective as salvage options after a failed surgery. Ask your RO's about this so that you have a good medical opinion.

2. Secondary cancers from modern prostate radiation are very rare. They are about as common as patients dying on the table during prostate surgery. This should be very low on your list of concerns.

In my 12 years on this forum I have seen far too many heartbreaking stories of men who are incontinent, impotent or both from their surgery. Also stories of bent or shortened penis, difficulties with implants or devices to help with continence and lost self esteem. Only occasionally do we hear of issues from men who have selected radiation as their primary treatment. I'm not saying it doesn't happen, it's just that the disappointments with surgery are by far the most common.

IMHO, a patient should focus on finding a treatment that will be curative first time out. Then worry about the major side effects like incontinence or ED. Way, way down on the list of concerns are things like salvage options, secondary tumors and dying on the surgical table.

Anyway, that's my take. I'm definitely not balanced...I would not recommend surgery to anyone unless for some reason radiation was off the table for a medically defined reason.

Nevertheless, whatever choice you guys make you can expect lots of support from me and the others on our site.

Jim