Newly diagnosed

pcav8r · New User Joined: 20 Jul 2009 Posts: 5

I was diagnosed with PC 2 weeks ago. PSA 4.5, Gleason 6 (3+3). I went in for a physical because my blood pressure was somewhat elevated (you ought to see it now Smile

). The pathology report reads 3 of 5 cores involved on the right lobe and and the left lobe only says focal glandular atypia. I turned 56 a couple of days ago. I met with the urologist the end of last week and he wants to do the traditional RP. He doesn't like robotics. I asked him for a name of a radiation oncologist also to get another opinion as his group are only surgeons.

My question for those in my situation and those who know also, what did you do? I kind of don't like going to different specialists around town and was thinking that one group with different options would be better to meet with to discuss. I live in the Kansas City area and don't know the "best" facility to talk to. I have read about MD Anderson in Houston and RCOG in Atlanta as well as Johns Hopkins are excellent facilities and am willing to travel if need be. I have also read about cryotherapy at Columbia Urology of New York-Presbyterian Hospital and was wondering if anyone had opinions on it. I just want to make sure that my final decision is the best for me and my wife.
With my numbers it seems that I have plenty of time to make a decision.

Any advice would be appreciated.

Thank you

Replicant · Moderator Joined: 01 Nov 2006 Posts: 850

One thought would be to use the US News & World Report hospital rankings, at least as a starting point. http://health.usnews.com/health/best-hospitals

I see that Barnes-Jewish, at Washington University, St. Louis, is in the top 25 for both cancer and urology.

If your insurance covers Mayo and you don't mind traveling to MN, I would consider that, too.

You do have plenty of time, and just about any option is open to you. I would read widely, chart out what is important to you in terms of side effects and so forth, decide which option(s) appeal to you most then seek out the best doctors in your area.

You might be interested in HIFU. It has shown a lot of promise in cancers like yours. There's a lot on the web about it. It's non-surgical, non-radiation, and fairly non-invasive. HIFU is not available in the US except as part of a clinical trial, but it is available in Canada, Mexico, and other countries.

There's a guy in your area, David E., who knows a lot about prostate cancer. He's active on HealingWell.com. He has a blog here: http://prostatecancerat42.blogspot.com/ . He's in a different situation than you are, but he spends a lot of time in the prostate cancer arena, doing advocacy and fund-raising, and maybe he would have some ideas for you. I see from a recent post that he's going to KU Cancer Center.

Best wishes.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

johnT · Senior User Joined: 27 Apr 2009 Posts: 233

With a G6 and low psa, just about any local treatment will give an excellent chance for a cure. You are borderline for wachful waiting because of the number of cores, but you have pleanty of time to research all optons.
Surgery is a good option, but the probability of permanent side affects is high. You have to consider quality of life issues as well as probability of cure in making your decision.
Cryosurgery has a high incidence of ED, but a good cure rate for localized PC. Seeds are also a good choice for a localized G6 and have the least side affects; a 2 hour procedure and you're back to work the next day.
Get as many opinions as you can. The Prostate Cancer Research Institute has a good section for the newly diagonosed.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

srtimmons · Posted: Tue Jul 21, 2009 1:55 pm Post subject: God is fully in control

I had robotic surgery yesterday by Dr. Slawin in Houston. all went well and i get released today. i opted for the robot for the faster recovery and lesser side effects. i lost one nerve bundle, but slawin is an expert at nerve grafting, so he did that as well.

I am thanking God for a full recover and another 25 yrs. or more. am 57 now.

good luck with your decision.

pcav8r · New User Joined: 20 Jul 2009 Posts: 5

Replicant:
Thanks for the info and the US News link. For some reason my research keeps taking me back to MD Anderson and I see US News ranks them at the top. Coincidently my wife spoke to a doctor friend today (ER Doc) and asked him what he would do if this were him. He said he would go to a facility with a panel and many options and then said "like MD Anderson". I think I will contact them and at least start discussions.

johnT:
Thank you also for your insights. Yes, there are a lot of choices and quality of life will enter as a big part of my decision.

srtimmons:
Glad to hear you came through the surgery okay. Hoping for a fast recovery for you. Keep me updated please.

One of the immediate "side effects" of this is I am a private pilot and own a plane.The second I received my diagnosis, under FAA rules, I lost my medical so I can't fly. A few days before the diagnosis, my wife and I were flying in the clouds dodging storms (I'm instrument rated) and today I can't legally do a touch and go without a licensed pilot sitting next to me as pilot in command. Very frustrating.

Once this is behind me I will be able to get my medical back and fly again but will take awhile.

srtimmons · Posted: Tue Jul 21, 2009 9:02 pm Post subject: my advice is

not to think you have plenty of time. there are too many varients with PC and too many different opinions. be aggressive in tackling it!

I chose prostate removal as i feel it gives me the most 2nd options - I can always follow-up with radiation and then chemo. I was dx on june 15 with psa at 7.1 and 9 of 12 cores affected; gl 7 (3+4) and 6 (3+3). no symptoms at all.

I also chose the davinci robot and a top surgeon as my insurance would cover it and i feel it gives the best recovery and fewest side-effects.

Day 2 after surgery at Memorial Hermann and i still feel this way.

GL.

pcav8r · New User Joined: 20 Jul 2009 Posts: 5

[quote="srtimmons"]not to think you have plenty of time. there are too many varients with PC and too many different opinions. be aggressive in tackling it!

I chose prostate removal as i feel it gives me the most 2nd options - I can always follow-up with radiation and then chemo. I was dx on june 15 with psa at 7.1 and 9 of 12 cores affected; gl 7 (3+4) and 6 (3+3). no symptoms at all.

I also chose the davinci robot and a top surgeon as my insurance would cover it and i feel it gives the best recovery and fewest side-effects.

Day 2 after surgery at Memorial Hermann and i still feel this way.

GL.[/quote]

GL,

My wife and I have been planning a European cruise for over a year that is scheduled to depart the first part of August. I have decided we are going to do this cruise and then I will jump all over this when I get back. I emailed MD Anderson tonight to schedule a consultation. Hopefully I will hear back from them in the next couple of days.

Paul

srtimmons · Posted: Wed Jul 22, 2009 4:04 am Post subject: hello

enjoy your cruise. you neeed to do that. with a psa of 4.5, you have likely caught it early, but as i said, be on the attack!

also, you can't do better than md anderson. if you want to chat, i live in houston and can be reached at 713-806-3720. anytime.

Day 3 after robotic surgery for me.

best of luck and trust God in this !

Steve Timmons

lauriejo · Posted: Sat Aug 22, 2009 9:39 am Post subject: HIFU

My husband was recently diagnosed also. We have done extensive research and we have opted for HIFU because of the lower side effects and similar success in curing the cancer. My husband is scheduled for September 25th. It is expensive, but what is your quality of life worth?
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

johnT · Senior User Joined: 27 Apr 2009 Posts: 233

While you are waiting consider changing your diet. Lay off the red meat and dairy and cut back on sugars. Supplements like pomegranite extracts; Vit D and C, and lycopene are helpful in slowing the growth of PC.
I waited 7 months before treatment with a psa of 40. Diet and supplements reduced it to 30 in a couple of months; also helped my cholostrol and other heart related stats.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

Hawk · Senior User Joined: 22 Nov 2006 Posts: 424

JohnT

My radical change in diet (or fate) also dropped my PSA from 16 to 8 before the biopsy that found cancer. I have a friend in watchful waiting that cut his PSA from about 7 to under 3 and has held it there for a few years.

While there is a ton of information on the need for vitamin D (especially for us north-easterners and those using sunblocks. The jury seems to still be out on vitamin D and those that HAVE Prostate cancer.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

pcav8r · New User Joined: 20 Jul 2009 Posts: 5

I haven't been on for awhile but wanted to give an update. I am starting proton beam therapy tomorrow morning at MD Anderson. I explored all options and after spending much time here with the Docs and others, this seems to be the right thing for me. I will be down here in Houston for about 8 weeks, 5 treatments a week , Mon -Fri

I am looking forward to getting this behind me.

Thanks all or your comments and support, I will keep you updated

Paul

Replicant · Moderator Joined: 01 Nov 2006 Posts: 850

Good luck, Paul. I look forward to reading your reports.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

pcav8r · New User Joined: 20 Jul 2009 Posts: 5

The first treatment went well to day. I was very nervous going in there but the procedure wasn't quite as bad as I had expected. Tired this afternoon but I think that is more from getting over the stress of starting than the procedure itself. Time will tell.

There was a five year old girl there "graduating" today (last treatment). It is traditional at the proton center at MD to ring a Japanese gong upon completion. The gong had been covered with balloons and gifts for her. Pretty much everybody in the center, staff and patients, came in to watch. It was quite moving for all.

Paul

kayamore · New User Joined: 04 Oct 2009 Posts: 2

[quote="lauriejo"]My husband was recently diagnosed also. We have done extensive research and we have opted for HIFU because of the lower side effects and similar success in curing the cancer. My husband is scheduled for September 25th. It is expensive, but what is your quality of life worth?[/quote]

My husband has been recently diagnosed. Where did you have the HIFU treatment?

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