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50 Year old struggling with Active Surveillance vs Surgery Decision

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Posted 12/1/2015 6:48 PM (GMT 0)
Rowen,

If you do decide to consider AS seriously, you should do the following first:

1. get a second opinion on the pathology of the biopsy from Bostwick or Epstein (I used Epstein; I was able to speak to him personally)

2. Get a 3T mp-mri done to make sure that more significant PCa was not missed

3. If you're still not sure, you can get a PCA3 test or PHI test as well.

As you can see from my signature below, I did all 3, giving me confidence to continue with AS.

Good luck

Posted 12/1/2015 7:35 PM (GMT 0)
Turp and all. I am so glad I found this site. I'd been reviewing posts for a while, but posting and receiving personal feedback has been incredibly valuable - especially from others with similar backgrounds. The handful of discussions I have had with friends and colleagues who have faced PC have all screamed GET IT OUT. When I inquire on their stats, they admit they were all at higher risk than I am (G 4+3 and higher) PSA > 10. Higher volume, etc. That wasn't helpful to me so I am glad I found HW. This has calmed my nerves and at least allows me to take a more rationale approach vs one driven by emotion.

I am meeting with my doc later today to discuss AS. Turp and Sue, I agree whole heartedly with the request for a second opinion on the biopsy results from Bostwick or Epstein. I will also get the mp-mri done. In the mean time, I know I've got more research to do... but also need to balance that with enjoying life and not letting the stress get the best of me. Thanks again for the great input and support.
Posted 12/1/2015 10:33 PM (GMT 0)
Thought I'd jump in here as one of the resident poster boys for AS. You've gotten a lot of good advise here and I would second the opinions regarding second opinions on the biopsy slides and perhaps even an MRI.

Please see my stats below as mine are somewhat similar. I'm a bit older, and they found less G6 (only 5% of one core), but that could very well be luck of the draw.

I think AS should seriously be considered and if all goes well, you may not ever need treatment. Worse case scenario you have months or years of "normal" life with a fully intact, unradiated prostate and all the good things that go along with that.
Posted 12/4/2015 8:58 PM (GMT 0)
Rowen-

Glad that you are giving serious thought to AS. There's plenty of time to chose the timing of any treatment that may be necessary. Just keep the "Active" part of AS up. :)

There's a lot of good advice and experience with the folks here.
Posted 12/5/2015 2:06 AM (GMT 0)
Rowen,

My story is close to yours, https://www.healingwell.com/community/default.aspx?f=35&m=3528051.

Just made my decision on the matter this week - AS.

Am a data/logic guy myself. After I removed the emotion/fear factor, here's my reasoning:

1) As others have said, the current AS data indicates 70% have yet to require aggressive treatment, and the other 30% that did, had the same positive treatment affect as doing it years earlier.

2) PC science/treatments (incl. AS) are improving "significantly" every two years. I want those improvement options. ex: RALP, may become a thing of the past.

By the numbers, the risk for SE's and a very different life is much greater than the risk of Death from a low grade (G6) PC. A "proper" AS program should catch the cancer progression long before a "travel" condition takes place. The cancer "travel" is what kills you, not the actual cancer in the prostate. Listen to me, am sounding like a doctor, of which I am Not.

That said, I will admit, willing living with cancer will be weird. Eventually, putting your full trust in the AS program will allow you to sleep at night. As of this week, all chips are in for me on the AS program.
________________________________________________________________________________
OCTOBER 2015
AGE: 59
PSA: Prior 3.0 elevated to 3.5 in (6) months
MRI: (1) lesion identified
Fusion Biopsy Results: Lesion benign, additional (12) Total cores = (1) core positive, cancer <5% of core
Cancer DNA Profile: size <1mm, DNA risk status unknown (to small to test)
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) : 12/9/2015 9:30:44 AM (GMT-7)

Posted 12/5/2015 5:42 AM (GMT 0)
Hi Rowan,

I am now 49 and was diagnosed at 48 in May with G6 and some G7, my PSA was under 3.0. There are other alternatives than the RP. My G7 required treatment but I wanted to minimize the side effects and maintain my quality of life. The surgeons all told me I was young and had a very good chance of a full recovery but they could not guaranty both my nerves would be spared.

After some research, I found and settled on Focal Laser Ablation (FLA). It was performed a month ago as an outpatient by Dr. Walser at UTMB in Texas. The procedure has only been around a few years and uses an MRI guided laser to target and destroy tumors. I had two bilateral tumors they were both ablated and it was less painful than my Trus biopsy. I view it as a middle ground between AS and Surgery. I have had NO incontinence or ED side effects.

You need to have a 3T MRI to find out if this is an option for you. You could choose AS until FLA is more proven and more insurance companies start to pay for it. There is a similar site to this called 'Inspire' with much more info on FLA. I found this site is geared more toward surgery.
Posted 12/6/2015 4:38 PM (GMT 0)
Rowan
You've received great advice above. I wish I had had the choice of AS, but I did not due to my bx. I can testify to the life changing side effects of treatment which if I had been age 50 rather than 69 at dx would gave been that much more awful. Even at age 69 I was very concerned about losing sex so I had a nerve sparing open RP. Guess what: no more erections! Then I needed radiation and have worse ED and rectal bleeding and urgency necessitating a return to pads to be sure I was not embarrassed if I could not get to a toilet quickly!
Doctors completely understate the nature and duration of side effects. If they spelled it out they'd have no patients!
Bottom line: every day without SEs is a day to covet and enjoy. We never know good we have it until we don't have it!!
Stay on AS as long as you can! Good luck.
Bob
Posted 12/7/2015 9:03 AM (GMT 0)
Hi Rowen,

Two other unknowns that may be worth discussing with your Uro while you consider your situation.

First, your rising PSA may be caused by prostatitis, and an aggressive course of antibiotics could be considered to investigate the chance. If you study prostatitis much, you'll find out that it's quite common, idiosyncratic, and linear increases in PSA don't rule it out.

Second, while a future biopsy may sometimes lead a G6 to be upgraded such as in Halbert's post-operative situation, that future biopsy may also detect no cancer at all. This is a possibility especially with a low Prolaris score. To give this some power of anecdote, this is thankfully what happened to me this year... so it does happen. And it's pushed me to enter a formal AS program, even with my fairly high PSA scores.

If you decide you are right for AS but want to be more aggressive anyway (because you can't sleep with it), then you might want to look into focal treatment for your small tumor. It's costly, but it is action. You can get free evaluations from the top focal laser doctors in the US by sending them a copy of your mri. These guys treat a lot of G7's as well as G6's. I would predict that you'll be considered a perfect candidate, just as you probably would be by every-conceivable-treatment doctor in the country.

Had I followed the recommendation of the first six prostate specialists I consulted with, I'd have a treated or absent prostate right now. Thankfully, I listed to a close friend and many on this website who recommended taking a slow and thoughtful approach. It seems like you're in a very similar situation.

Best wishes,
Jim
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