46 & Recently Diagnosed

[jsmoorejr]

I am 46 and was just recently diagnosed. My Gleason score is 6 and my PSA was 5.5 at the time of diagnosis and has been as high as 7. I am not going through any treatment as of right now, just doing a lot of research and appointments with various doctors. So far, both my Urologist and the Radiologist I spoke to have recommended surgery. I have two more appointments in March, one to see a Naturopathic Oncology doctor and another Urologist for a 2nd opinion. After that...who knows.

[behavit]

I was diagnosed at age 49 (Gleason 6, PSA 4.0)...cancer was considered to be near the margins of the prostate...that was back in 1997. I am alive today after successful surgery (cancer was confined to the prostate luckily for me). I cannot advise on whether surgical technique is truly better now...it probably is.

The bottom line is that I am alive.

That is not to say I am not impotent (3 units of blood lost during traditional surgery) and the urologist saying that it was very difficult to see the nerves...think about getting a graft prior to surgery...Dr Mulhall in NYC is well up on this and other sexual issues.

Also have minor stress incontinence issues due to the surgery.

Good luck, whatever choice you make!

[Magnus1964]

I was diagnosed at age 46 with a gleason score of 9, my doctor gave me 5 to 10 years to live. I am not 70 and still battling the cancer. I had surgery at Johns Hopkins but the cancer spread to the lumph nodes so they did not remove my prostate. I did have the orchiectomy and a few years later radiation to the prostate. For the next 17 years I moved from one Hormonal oblation drug to another. Last year I had the Provenge treatment. So hang in there. I am sure the treatments have improved over the last 20 to 24 years.

[ezrared]

How heavy is your load in the biopsy?

[jsmoorejr in reply to ezrared]

What do you mean by "how heavy is your load in the biopsy"? I am very new to this so I really don't know what that means.

[ezrared in reply to jsmoorejr]

Ok...the load is what percent of each section was affected

..also you can get an mri to see if any cancer is pushing the prostate margins

You should not rush into surgery

[jsmoorejr in reply to ezrared]

I don't plan to rush anything, lol. As for the other info:

Sections A-F (Not sure if that is a standard labeling or sectioning of the prostate or not.):

A: Carcinoma 3+3, 20%, 20%

B: Benign

C: Carcinoma 3+3, 5%

D: Carcinoma 3+3, 30%, 10%

E: Carcinoma 3+3, 10%

F: Atypical glands

I asked the radiologist about an MRI or scan of some type that could see the cancer, but basically she told me that isn't necessary in my case. I am sure I am not stating that correctly, but that is basically what I got from it.

[pjoshea13]

JS,

Interesting that you have two recommendations for treatment (surgery) with a GS of 6. One of the reasons that PSA screening has been criticized is due to the over-treatment of GS=6. Dr. Charles Myers, in a vblog post, said "Don't call it cancer!" I disagree, given that 25% of GS=6 will progress.

I have a good friend with PCa who was diagnosed with GS=6 five years ago. His PSA was high enough to prompt a biopsy, but has been static ever since, Nonetheless, his urologist keeps giving him a hard time because he has refused annual biopsies.

There is something sad about the 75% of such men on active surveillance getting unnecessary annual biopsies. I gave him a link to the 4Kscore test:

clinical.opko.com/4kscore-t...

(Insurance doesn't cover it yet.)

It seems to me that the 25% of GS=6 that will progress need some up-front warning that progression is probable. & the other 75% need reassurance that wait-&-see is a good strategy. I think that 4Kscore might be very useful in this regard.

I suppose that active surveillance was discussed with you? Any reason why immediate treatment was preferred? Age? Family history?

One reason why, after ~30 years into the PSA era, we need a new test (or a panel of tests that include PSA), is that many men have elevated PSA because of chronic BPH. With a PSA that bounces around (e.g. 7.1 down to 5.5, as yours has), maintaining a graph of PSA over time might make it easier to separate the noise caused by an inflammatory condition from any PCa trend.

I'd be interested in your 3rd/4th opinions. The disgraceful thing about treatment recommendations is that urologists & oncologists are not on the same page. Statistics show that oncologists are far less likely to recommend surgery, whereas the studies that I have read show a survival advantage for surgery.

Best, -Patrick

[jsmoorejr in reply to pjoshea13]

I haven't had annual biopsies, only one, which was on the 4th of this month and I was told I have cancer on the 10th. 4 of the 6 sections that the biopsies were taken from showed cancer. We did discuss active surveillance, but my doctor recommended against it because I was too young (I am 46). He didn't suggest immediate treatment, but he did say that he recommended surgery because it appears to be contained within the prostate. My father also had prostate cancer and he had surgery.

[tetech in reply to jsmoorejr]

30% of a core being cancer is high, and appears to be in both lobes of Prostate. Inheriting PCA so young (me, too at 43) also adds to significance. I had similar biopsy showing Stage 2B. Had Robotic Prostatectomy ASAP in 2-2007 with PSA at 3.8 and the cancer nearly escaped the prostate with a 0.01 CM margin; 4 weeks after surgery undetectable <0.01 PSA. 2.5 years later it became detectable 8-2010 at 0.02; rose to .43 11-2014 and I was advised to and agreed to get salvage radiation before a PSA of 0.5. Radiation IGRT (Image Guided; a CT scan is done a minute before each radiation beam treatment) and 6 months Lupron 12-2014. Happy to report that my Testosterone recovered and the PSA is undetectable.

[Umpire20 in reply to jsmoorejr]

Most surgeons recommend Surgery! You are Very Young but time is on your side to explore other options to surgery or radiation! 

[Umpire20 in reply to pjoshea13]

I love this response. I am wondering if anyone suggested a Second Opinion on the biopsy slides themselves by a world class expert such as Dr. Jonathan Epstein at Johns Hopkins? Gleason scoring is not an exact science. I was diagnosed with a Gleason 7 ( 3 + 4 ) but Dr. Jonathan Epstein determined it was a Gleason 6 ( 3 + 3 ) which has led me to entering the 10th year of Active Surveillance! 

[cpl901 in reply to Umpire20]

What did you do ? Surgery ? Active surveillance ?

[JEKNY]

Do your research I have often thought would I have been better off by opting for watching and waiting option.

It has been one of those things for me I have done what experts say to do to give you the best outcome, only to be disappointed.

Looking back the measures I took were not followed by the best life style choices.

If you opt for treatment follow it up with a prostate cancer healthy diet and exercise.

Good Luck

[SMTX65]

I am 50 and was diagnosed at 48 (19 months ago). My Gleason at the time was 3+3 but was nonetheless there at a young age. I visited with the folks at MD Anderson in Houston and decided on getting the robotic prostatectomy. I asked about watching it but my surgeon explained that considering my age and otherwise good health, it was highly recommended that I NOT wait. Assuming that it took 12-15 years to progress to the point of killing me, that is still a very young age.

I am thankful that I took his advice as the final path report changed the diagnosis to T3A with a Gleasson of 4+3 and the cancer was well on its way to killing me in a very short time. I9 months later my PSA is still undetectable, but I have to be checked every 4 months due to the aggressive nature of the cancer.

My advice for anyone that chooses to go with the robotic prostatectomy is to find the most experienced surgeon you can locate. My surgeon had completed just under 10K procedures using the robot and my results are beyond anything I expected. I attribute that to God's blessings, a highly skilled surgeon and the fact that I am in otherwise great health.

I was basically fully continent after 5 weeks with the exception of an occasional dribble. I have had absolutely no issues with ED which was a huge concern for me. I attribute a lot of the continence success to doing kegel exercises religiously before and after surgery just like the surgeon instructed.

I am an open book when it comes to discussing my experience with prostate cancer. Feel free to ask questions and I'll share anything I possible can.

[KC18 in reply to SMTX65]

Did you have your surgery at MD Anderson or somewhere else? What are the questions to ask a surgeon to make sure they are "the best?" Thank you!

[ProstateC45 in reply to SMTX65]

Did you have any other risk factors with regards to having the surgery obesity? My dr has suggested that since I am overweight that I lose some weight prior to surgery to help with ease of surgery and help prevent complications such as incontinence and ed.

[Umpire20]

I have been on Active Objectified Surveillance since diagnosis in December of 2006! My prostate cancer is also Gleason 6 low-grade non-aggressive prostate cancer! Hope that Active Surveillance is an option for you. I had only two cores positive at 10% or less. But, and it's a big BUT, I was 59 at diagnosis!  Is there a family history. Did you have more testing than just a "blind biopsy". Also check out "Prostate Cancer Support Group" on Facebook. Feel free to contact me for more info on my Prostate cancer journey realizing every man, every PcA unique. 

[tetech]

I was 43, had DaVinci prostatectomy with my Gleason 3+3 PSA at 3.9 and rising. 7 years later I had 38GY radiation to my small prostate bed. With PSA at 0.4 (Dr. wanted to start radiation at a PSA of 0.1 for best chance of cure but I delayed due to fear of Radiation) I started Cassodex & proscar for a week, then started 2 months radiation & lupron and proscar for 6 months. 18 months later, my PSA is under <0.02 and Testosterone recovered. I was on Avodart before my surgery. Prostatectomy Surgery not usually possible after radiation, so a lot of young guys do the surgery first.