Husband possibly has PC....freaking out!

Alison, with 1 G6 core at 14%, that's almost as minimal a cancer a guy can have. He's going to be around to torment you for a good long while to come. Dr. Samadi is a great doc, so I've heard. At the same time, get a referral to the radiation experts in NYC too, as well as the AS programs, just to round out your research.

Again, you have plenty of time to work this through. The true first decision to make is whether you'll go aggressive or not. And, don't make that decision for sure until you understand what that means.

Allison,

Sounds like your husband got the best report he could get with PC. My current story is very similar to his:
https://www.healingwell.com/community/default.aspx?f=35&m=3528051

As you will tell from my thread, right or wrong, AS became my choice. The reason why everyone is recommending a second pathology opinion, is because the pathology assessment is a "human" visual perception of cancer cell appearance and pattern. Because the cancer tissue size is probably greater than 1mm, I would get a Oncotype DX cancer DNA test. The biological DNA test will give you a gene cancer type reading for aggressive or non-aggressive makeup.

If the cancer DNA test supports the current G6 reading, non-aggressive cancer, you can start to evaluate the Risk of physical treatment (SE's/Quality of Life) vs Risk of death from a non-aggressive cancer. Remember, a Active Surveillance program is the close monitoring of existing cancer to catch any progression in the cancer behavior. "If", and I mean If, the cancer moves the "slightest" way bad (Biopsy G7, PSA 10, cores >50%), take it out then. Studies say, the AS progression catch and action thereof will have the same results as taking aggressive action (ex: RALP) on day 1 of PC diagnoses.

The veteran members comments on such things have tremendous merit. You guys have time to make a decision based on data/logic or emotion/fear. Think about it . . . . .
__________________________________________________________

OCTOBER 2015
AGE: 59
PSA: Prior 3.0 elevated to 3.5 in (6) months
3T-MRI: (1) lesion identified
Fusion Biopsy Results: Lesion cores benign, additional (12) Total cores = (1) core positive, cancer <5%
Cancer DNA Profile: DNA risk status unknown (cancer tissue to small to test, <1mm)
Gleason Score: 6 (3+3), 2nd pathology confirmed GS
Clinical Stage: T1c
Other Health Conditions: Diabetes Type II (DX 2000), on meds & insulin

Post Edited (NewDay) : 12/17/2015 7:57:42 PM (GMT-7)

1) He doesn't have an aggressive cancer now (pending 2nd opinion)
2) If you do AS, the first word is "active," which means that you keep on top of it, if it does become more aggressive you can treat it then
3) If it does become more aggressive in 10 years or so, he has 10 years with no SEs. And in 10 years, treatments will almost definitely be better than they are now
4) It wouldn't be too late as being on AS is safe. In the Johns Hopkins study of 1,298 men on AS for 20 years, 2 died of prostate cancer. That's 0.2%. This is not a risky protocol.

Just some food for thought. I know it's confusing and I know AS isn't for everyone. But your husband's diagnosis is pretty close to textbook for AS. And we're here to help no matter what you decide.

Allison
Only you and your husband can decide what is best. But please take your time to step back, explore your options, and weigh your risks and benefits. With a biopsy report that shows just one out of 12 cores positive and that one a Gleason 6, your husband, in my opinion, is the poster boy for active surveillance. Please don't rule it out without serious consideration and discussion with his doctors. At age 49 with what all signs, thus far, indicate is not an aggressive cancer, aggressive treatment at this point may be delayed for many years and may never be needed at all.

Speaking from experience, as someone who had a more aggressive version of PCa and having had both surgery and radiation, active surveillance if it is medically a reasonable option, will preserve sexual function and urinary continence, and will not impose the (admittedly small) risk of damage that can occur on the rare occasions that radiation treatment goes wrong.

I'm not complaining and not trying to scare you or anyone away from necessary treatment. In my case I had no choice, and even so, a bit of dribbling when I sneeze is a small price to pay. And even if eros is not what it once was (from everything working perfectly before surgery), it isn't entirely impossible, even with damaged equipment. But were I in a position to have an option, I would very seriously weigh a very low risk of life-threatening disease against a very high risk of decreased quality of life.

You and your husband have to decide together. No one here and no doctor can decide for you. You have my, and I think all of our, support in whatever decisions you make. But please don't decide in haste or out of fear.

Jim

I am definitely going to bring this up with the doctor next week. How do I go about asking for the samples to be sent to Hopkins? Do I have to call the lab that did them or does the doctor do that? I saw the website and I have the address to send them to.

Allison... I just asked my URO to send my slides to Johns Hopkins for a second opinion and he did.

Hi again...ok, we had the appointment this morning.

Regarding the second opinion on slides, the doctor said that he personally did not feel it was necessary based on his experience with this lab (he has never had a patient get different results when they sent them to a specialist) and the fact that the cancer is so early stage. He said we are free to send them if we so choose to, however.

He went over the three options, active surveillance, RALP and EBRT and went into detail the risks and benefits of all three...maybe a little much too detail. I cringed more than once. He spent quite a lot of time with us and answered our questions, although to be honest, I had very few questions based on what I have learned here and elsewhere on the Internet.

As of right now we have chosen..........(drum roll)...........AS!!! He said that was a fine choice and although my husband is younger than most men who do this, he understood our concerns about the risks and side effects of the other two options. He actually said he wants to call it "delayed treatment" and that he will have a PSA and DRE every 3 months and we'll go from there. The doctor also said that because of this choice, he is doing some sort of DNA testing on the biopsy? He also wants my husband to see a radiation oncologist just so he can get more details about that option.

So, that's where we stand at this point. The doctor was very positive and upbeat about this whole thing and I feel like there is no need to panic right now.

Any comments are welcome!

I'm glad to hear your visit went as well as it did. It sounds like you have a uro who is truly looking out for your husband's best interest and not trying to rush you into treatment or steer you toward his own specialty. Talking with an RO is good advice so you can have an opinion from another point of view. At the time of my original diagnosis 13 years ago my uro set up an appointment for me with a medical oncologist also, so I could have the judgment of another doctor who didn't have a bias toward his specialty. I appreciated that he wasn't trying to steer me into surgery just because he was a surgeon. And I've also kept tabs on that MO, who has moved on to Dana Farber in Boston, so I can ask her for another consult if needed, which in my case, may be on the horizon. Though with your husband's biopsy results and with a bit of luck he may very well never need any further treatment.

Jim

Allison,

You know by my previous posts that I'm happy to hear AS is the choice. Am encouraged that the doctor is sponsoring a cancer DNA test (profile). The biological data "should" match the non-aggressive G6 status.

Right or wrong, we are now in the AS club. Keeping up with PC research/advancements/tests, a good doctor with a solid AS program is the club's goal.

"Constant Due Diligence" is the game plan.

Merry Christmas, time to enjoy the holidays.

Allison, it sounds like you guys made a good choice and it makes a lot of sense. Hopefully all will go well for MANY years to come. I have a couple more suggestions:

1. Notwithstanding your doctor's recommendation on the slides, if I were you I would still go through with getting the second opinion from Epstein or Bostwick. I have seen far too many changes not to make that suggestion.

2. Again, with all due respect to your doctor, there are likely other choices for your husband other than the ones he mentioned. HDR Brachy, LDR Brachy and SBRT would all likely to be curative. It is rare that one practitioner will have the knowledge to understand and explain all of the options so due diligence generally requires that we consult with the various specialists. It may be premature for you to do that now but please keep that in mind if and when AS ceases to be your best option.

Good luck and Happy Holidays.

Jim

Allison, congrats on developing a rational plan. Keeping an eye on things is what AS is all about, and taking action when (or if) something develops. You've got reasonable odds that nothing will happen for several years. Enjoy life! Help him empty that prostate as often as possible.

Wishing the best for your husband, Allison! It sounds like you made the right decision! Happy New Year!

Hi everyone. We saw the radiation oncologist today and he recommended AS as well, so we are even more sure of our decision. He said PSA's every three months another biopsy in a year. He was a really nice guy and we felt very comfortable with him.

He said should my husband need his services some day he would recommend seed implantation as it's less likely to cause ED. I found that interesting so I mentioned that his urologist said brachytherapy was not really even being used anymore and the RO said that's because no one is as good at it as he is!! He has a high success/low side effect rate. He also mentioned that cyberknife has a higher incidence of side effects than regular EBRT. Anyway, it's not even something we are going to think about at this point.

Happy New Year everyone and I wish you all happiness and healthy prostates for 2016.