New to here, just got the bad news

Hi All,

I was diagnosed a year ago, 1/10 cores on left, Gleason 3+3, PSA~ 3.5. I'm 49 years old now.
Today got second biopsy results, now 3 cores, left, center and right. all three G3+3. Curiously my PSA has gone down slightly over the year (3.5-3.4-3.3-3.2). Based on the PSA, I was hoping for better news today.

Doctor recommended next step--either radiation or surgical removal.

Needless to say, I'm freaked out all over again. I'm in Hawaii so I don't trust that we have surgeons here with the volume of experience compared to the Hopkins/Sloan Kettering/CTCA type centers on the mainland. Does anyone know if the top places are Blue-Cross providers (my PPO is)?

I could use some encouragement in the incontinence/ED department.

Also could use some feedback on the surgery versus radiation options.

Thank you.

Get a second opinion on your slides. I wouldn't do anything until you have confirmation of 7's. MD Anderson of Houston is a BCBS provider.

Get an opinion on your slides either by Bostwick or Epstein. They are the best to use.

If you are a true G6, you should first pursue AS. Even if AS is not for you, there is no reason to rush to a treatment plan. Time is clearly on your side. G6 does not become G7 or worse, does not spread as it can't live outside the prostate, and won't cause you harm. Most all G6 do not need aggressive treatment, especially surgery.

If you are as low risk as you appear to be and you just have to treat the cancer because you can't pursue AS, then use the treatment method that presents the mildest side effects. That would be either SBRT or High Dose Rate brachytherapy. To learn more about HDR Brachytherapy see www.cetmc.com the website of Dr. Jeffrey Demanes who has pioneered HDR and used it for more than 30 years. He also was the head of radiation at the UCLA Medical Center. TallAllen can provide more specific information about SBRT.

In my opinion, surgery would clearly be too invasive for you and raise high probability of incontinence and ED, side effects you are wanting to avoid. Assuming you are a true G6 using surgery you become the poster child for the overtreatment problem associated with prostate cancer.

However, if the second opinion on the slides indicates a more serious G score, then you have to consider treatment methods based on the actual findings. No need to speculate, just get the second opinion.

Sorry for your recent news,

May I ask, a little more info on the current condition. What percent of cancer in core samples?

If you have >1mm in sample size, you may want to have it tested (Oncotype DX) for type of cancer (nonaggressive vs aggressive) by gene markers. Your uro should be able to process the Oncotype DX test. A gene cancer type finding could provide added value to your treatment decision. If nonaggressive, why take aggressive treatment???

Others more knowledgably than me, will probably suggest that the low PSA (<10), Gleason 6 (3+3), cancer samples <50%, makes you a good candidate for AS. A good AS program will catch any cancer progression long before a "travel" condition takes place. You need to ask your uro these questions. He should explain "why" the aggressive treatment now. Seams a little early for aggressive treatment. You could have several years of AS (with no SE's) that would not increase your risk of future cancer treatment failure.

Access my AS story link in the below signature. You need to create a data history signature, so others fully understand your current condition to help.
________________________________________________________________________
OCTOBER 2015
Age: 59
PSA: 3.0 elevated to 3.5 in (6) months
3T-MRI: (1) lesion identified
Fusion Biopsy Results: Lesion cores benign, additional (12) cores = (1)5%
Pathology Summary: Grade Group 1 (GS6:3+3), 2nd pathology verification
Clinical Stage: T1c

Genetic DNA Profile: Above average risk for Aggressive PC (deCode Genetics)
Existing Cancer DNA Profile: DNA risk unknown (Oncotype DX test cannot be performed, <1mm)
High Grade Biological Score: 27% aggressive risk (Mi-Prostate Score)
Other Health Conditions: Diabetes Type II (DX 2000), on meds & insulin

PCa Treatment: "Active Surveillance"
Risk: Undetected Cancer Progression
Risk Likelihood: LOW

My Story: https://www.healingwell.com/community/default.aspx?f=35&m=3528051

Post Edited (NewDay) : 2/25/2016 8:55:15 AM (GMT-7)

Welcome,

2nd opinion for sure. Treatment depends on what you personally can handle. With the G7 I had, AS wasn't really an option in most opinions, but even it were I personally just wanted it out. I have family in the medical field who pointed me to the best surgeon possible and I have no regrets. I'm a little over 4 years out and no issues at all as far as incontinence or ED. There are a lot of people like me who have basically moved on and only post occasionally, but know that the odds are you will be fine with whatever treatment you choose.

Good luck,
Tom

There is a guy who posts here under the name of Hawaii Guy who was treated only about a year ago and may be able to advise you on local providers from the research he did. Though he elected to be treated at UCLA.

Best of luck.

Above all else, realize that you have plenty of time to make a decision that is best for you. You are a prime candidate for AS, in fact you have essentially been on AS for 1 year now. You have apparently gotten away with that choice with no harm done PC wise and no SEs from treatment, so so far so good.

You say that you had hoped for better results since your PSA actually went down a bit. That is not really a big surprise that PSA went down while Bx results got a little worse. Just consider that it was also quite possible that even though you had the exact same amount and aggressiveness of PC 1 year ago, your 1st Bx could just as well have shown ZERO PC, which would make your current results look even worse by comparison.

IOW, Bx is hit or miss, a shot in the dark more or less. Unless you had some super duper newer hi tech form of Bx, they are just taking X amount of needles and sticking them into the most likely spots, and/or randomly trying to cover everything, hoping to hit what may well be microscopic areas that have PC cells. Hence your PSA has not gone up and has actually gone down a smidgen with each consecutive test, not usually expected if there has been no treatment and cancer size has increased, especially if there is an aggressive cancer present. As you can see, it is not at all unheard of for a person to have PC and for the BX needles to miss it and give them a zero PC or negative result. A false negative. It happens. So as far as you know from this Bx, you do not really have anymore or any worse PC than you had a year ago, it could just be the doc got a little luckier with needle placement.

I'm not saying you have not gotten a little worse, but I am saying that either you have not actually worsened or worst case you have advanced a very small amount. In either case, you still have a relatively blessed situation: a very low risk PC, assuming your Bx results are correct. Additional evidence on your side is that your PSA has not increased at all and actually gone down(and I suppose your DRE has not worsened?). That proves nothing but it is one more piece of evidence on your side, which might keep you from leaping into unneeded treatment.

So as others said, get a 2nd opinion on the slides(and even other doc's opinions), and DO NOT rush into treatment and possible SEs until it is certain that you need it. As you continue your AS, research treatments pros and cons and relative SEs, As you are doing this, you might buy 1 more year- or 10 more years- of SE free life. Research how many people diagnosed with a G6 low PSA PC ever actually die of PC, even with NO treatment, you might find that an eye opener.

I realize it is possible that there is a more aggressive PC in you than a G6, which the needles missed. Of course that is possible. But would that not be equally possible if your Bx was negative? Yes, it would, but you would not be seeking any treatment with possible SEs if you were negative, even though it was still possible you were a missed G9. In the meantime, just watch the PSAs and DREs and maybe the occasional BX if needed, research treatments and lifestyle(diet exercise etc) changes likely to help. And take a deep breath relax, and celebrate that G6!( I know, am I crazy, celebrate PC? No, but celebrate you are not G9 with rapidly escalating PSA and a bad DRE, because that means you have plenty of time! )

Good luck on your journey!

Bill in MS

Sorry about your diagnosis, but glad you found us. I'm in violent agreement with pretty much all of the above. Get a second option on your biopsy slides from Epstein or Bostwick and if it's still G6 (which is likely) I would consider AS.

Now some guys aren't cut out for that physiologically, which I completely understand. But based on the handle you chose for yourself, that's certainly the best way to make sure you don't have ED as a side effect. It's also a very safe protocol for low-risk guys like you based on a 20-year study by Johns Hopkins. Essentially, the death rate was the same between guys on AS and guys that chose surgery or radiation. (And it's very low...I think it was 2%).

You have lots of time to make a decision since PC is very slow growing. Use that time to learn as much as you can so you can make a wise decision. Good luck to you and let us know how we can help.

I'm sorry you were diagnosed with PC at so young an age. It seems that you think that because they found only one core with cancer a year ago, and now they found 3 that you think this is evidence that the cancer is progressing - you would be wrong to assume that. Biopsies are just a random sample and often miss the cancer. With a GS 6, it's much more likely that they just missed it in some places the first time. Your low (and decreasing) PSA provides further evidence for that.

Even with involvement in 3 cores, you continue to be a good candidate for active surveillance. However, you should have a multiparametric MRI-targeted biopsy next time if that's available in Hawaii. Many AS programs don't recommend treatment until some GS 4+3 is found.

If you haven't already, read the following sticky:
Newly diagnosed with PC? – read this thread first
It includes links for getting a second opinion on your biopsy slides from Bostwick or Epstein.

There are a lot more options than are dreamt of in your Urologist's philosophy, but it is up to you to go out and talk to specialists in each option. There's no such thing as one-stop-shopping with PC therapies. You can often get a telephone consult to start with.

I don't think you will find an expert specialist in high dose rate brachytherapy, low dose rate brachytherapy or SBRT in Hawaii. Will your insurance allow you to travel to California for therapy?

49DontWantED,

Glad you are here, sorry you have to be here at the same time.

I'm young like you, younger in fact, see my sig for details. I was in your boat back in Nov 2013 and chose active surveillance. If it's possible I would recommend a fusion MRI targeted biopsy. I had mine at the NIH because it's only a couple hours sways from where I live. I'm not sure if this would be available anywhere in Hawaii but I'm sure certain large centers on the west coast have this newer and more accurate type of biopsy now available. I see a few of the guys that received treatment from UCLA have already replied with good wisdom.

I will reiterate the need to get a second opinion on your slides as the next logical step - from Epstein or Bostwick.

Check out the sticky links on just diagnosed for great info on how to proceed and what questions to ask along the way.

I chose HDR BT, a type of radiation therapy, and literally just had my last implant done yesterday. You can read my recent thread for the blow by blows. I chose it in large part due to the low rates of side effects especially for ED. Feel free to ask any questions, but most of all know that you have the gift of time to decide on what you want to do. I chose AS up until my targeted biopsy in May 2015 when a few cores had >50% cancer, again see my sig for details, after which I started pursuing treatment options.

God Bless.

ASAdvocate is 100% right on the Hopkins criteria. I can however speak from experience that they are slightly bendy in some cases; my PSA Density didn't fit them either but Dr Carter accepted me anyway. Part of that was his assessment of the amount of white around my eyes.

Point being - no matter where you go, these things are part of a conversation between you and the Doc and your fears, feelings and attitude play into the decision.

... the thought (abject terror) of not being able to push my lovely wife around the carpet any longer... :o)