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Posted 5/17/2013 2:30 PM (GMT 0)
Hey!   Just wanted to ask you all what you are doing for treatment?  a.) RT-Whole Pelvic Rad or what & when started?  b.) HT-What Kind and how much time & when started?    Also, wanted to ask how you have changed your diet?    I’m getting ready to see my Rad Onc and wanted men with my diagnosis who have experience to guide me with their own stories...successful or not!    Thank You SooooooMuch!
Posted 5/17/2013 2:47 PM (GMT 0)
My signature has my plan. I'm heading into my 3rd week on Lupron now, will go 2 years. I'm doing HT +RT as primary therapy.

Radiation onc said due to PIN on Bx, multiple 100% Bx cores, G9 in all of the positive cores, and 3T MRI indicated ECE+, we'll do 40-50Gy whole pelvic then dose prostate itself to 79.5 Gy. The horses are almost surely out of the barn...
Posted 5/17/2013 2:50 PM (GMT 0)
57  Thank You! Are u in a metropolitan area!  How did you decide on the Onc you would use!
Posted 5/17/2013 2:54 PM (GMT 0)
pT3aN0Mx here. Pre surgery PSA 23. 7/12 positive biopsy with up to 70% (Full stats included below.)

I had DaVinci surgery with clear margins with PNI and EPEs. It was suggested I have followup radiation. I heard that radiation often stops progress in the incontinence and ED departments, and since at 18 weeks I was still "blessed" with spectacular cases of both, I decided I would take my chances and skip it.
I'm at 4 years now and my PSA is <0.02, the minimum reported value at my lab. :-)

I still remember the conversation with the Onco and my decision to turn it down.

It's all a crap shoot and I happened to make point. Whew.

Jeff
Posted 5/17/2013 3:01 PM (GMT 0)
..Good question, I just got my post operation pathology yesterday pT3a, G9, 1 out of 17 lymph node positive. I'm still digesting this information. I will watch your posts and start making Oncologist / Radiologist appointments Monday for the days following to get their opinions. It seems you need some experienced info and so do I, brother..
...........Stay well........Nick.........
Posted 5/17/2013 3:01 PM (GMT 0)
Thanks Worried Guy!
Posted 5/17/2013 3:06 PM (GMT 0)
Appleseed!

keep me posted if you find some good stuff!

Posted 5/17/2013 3:30 PM (GMT 0)
My husband is a pT3a with one area of EPE but negative margins. His surgeon did not recommend any additional treatment, and he doesn't want any unless his PSA rises. At 5 months after surgery it was 0.01. He will have another PSA taken next month. His surgeon wants him to have PSA's done every 3 months because of the EPE.

He has changed his diet but only because I insisted on it. I don't care whether the data proves that a healthier diet helps prevent a recurrence or not - I turned his terrible diet around. He used to eat a lot of junk food and now eats no junk food (he is not overweight). We eat mostly organic food, almost no red meat (which I don't like anyway), organic chicken, fish, limited dairy, limited sugar, more fruits and vegetables, whole grain carbs (instead of white flour). We aim for moderation.

His surgeon has him taking Zyflamend, which is an herbal anti-inflammatory. His surgeon believes that inflammation fuels PCa. I am not a big believer in supplements (just my personal bias) but this supplement probably cannot hurt him - at worst it won't do anything. His surgeon plans to check his Vitamin D level when he does his next PSA. I am also not a fan of taking Vitamin D because I have heard conflicting views on it, but we will see what his levels are.

I try to keep any additional stress off of him, since he gets enough stress at work. He exercises as much as he can but due to the long hours he works cannot do it every day.
Posted 5/17/2013 4:44 PM (GMT 0)
Bluebird 123... Thank You! I’m doing about the same with my diet...  
Posted 5/17/2013 5:11 PM (GMT 0)
Hi 49,

I was born in 49! Wish I was 49yrs old again smhair
I had worse stats than you--with a positive lymph node and post op PSA. I started on Lupron right away. The Rad Onc wanted to do SRT right away and the U of Chicago Med Onc (who used the same horse out of the barn quote) said no to the radiation.
We stopped the Lupron to let the PSA return in order to do a C11 acetate scan. We leave Monday for Kansas Uni. MC. Hopefully the scan will show more than CT and BoneScans did and let us know if SRT will be in our future or just a lifetime of HT!
Then we're off to Marina Del Rey and Dr. Lam and Scholz for 4th 2nd opinion! I'll report back after that appt. on June 6th.
Doing the same as Bluebird with diet and Supplements.

Best to you all

Jim (and Marie)
Posted 5/17/2013 5:35 PM (GMT 0)
Thanks Wampuscat!!

Did u have surgery in Michigan at the Henry Ford there? 

Posted 5/17/2013 5:45 PM (GMT 0)
49yrsold,

My doctors are all part of the Vanderbilt University health system in Nashville.  So, the various oncologists and specialists are all there.  I've worked with ones that specialize in prostate cancer.  I found them mostly by their write-ups on the Vanderbilt staff pages (qualifications, training, specializations, history are available for all of them), and by talking to them and various physicians assistants and office people.

It seems you can get a feel pretty quickly for doctors you can work with, and those that aren't such a good match.  It's important for me to find doctors that will talk straight with me, and be willing to go into a lot of detail.  Otherwise, I can't get comfortable with what they're planning.

Posted 5/17/2013 5:49 PM (GMT 0)
Did you use Doc Cooksen?
Posted 5/17/2013 6:46 PM (GMT 0)
I don't recall being staged before surgery but I came out of surgery T3b. I had some insights that let me know that surgery was the correct treatment for me. Our local hospital(s) did not have a Divinci machine at that time so I never concerned myself with the type of surgery. I don't believe I ever discussed ART with anyone but was very positive so didn't worry (much) about it. I had SRT about two years after my initial surgery and, so far, am a happy camper. I got a not to schedule a check up next month so the anxiety level is nudging up a bit. I hate pass/fail tests. HT was not done in conjunction with my SRT.
Posted 5/17/2013 7:19 PM (GMT 0)
Thanks STW!

Did they do nerve sparing?

Posted 5/17/2013 8:02 PM (GMT 0)
ThankS Southern Comfort!
Posted 5/17/2013 9:08 PM (GMT 0)
49yrsold,
I am also pT3b with bilateral seminal vesicle invasion. I was 44 at Dx. My treatment combinations are in either link in my signature.

6 1/2 years later I'm doing pretty well...In full remission.

Tony
Posted 5/17/2013 9:33 PM (GMT 0)
I was T3B 11 years ago and did very well with surgery only until 3 years ago when I needed SRT. However, my only extracapsular extension was SVI on one side. I see that you have several additional focal points. Also when I had my original open RP, adjuvant radiation was less commonly used than it is now. I suspect that if I was being treated today with the same clinical signs I had then, I'd might be steered toward adjuvant radiation soon after surgery.
Posted 5/17/2013 10:16 PM (GMT 0)
I was pT3A at 47 and am now going on two years from surgery. PSA has been <0.03 so far. Good luck!
Posted 5/18/2013 1:05 AM (GMT 0)
I was a T3ber after surgery. On a Mediterranean diet.

Signature describes where I've been.
Posted 5/18/2013 2:43 AM (GMT 0)

49yrsold said...
Did you use Doc Cookson?

Yup, he's one of my docs. You'll see his name on the AUA guideline documents, panels, that sort of thing.
Posted 5/18/2013 12:25 PM (GMT 0)
Thanks 57
I was scheduled at Vanderbilt, but went to Sanjay Razden in Miami! Cookson has been published a lot!
Posted 5/18/2013 8:49 PM (GMT 0)
Hi 49yrsold,

I'm just on Avodart now plus the following supplement:


Resveratrol (Biotivia or Life Extension Foundation) 1 x 250mg;
Full-Spectrum Pomegranate (Life Extension Foundation or Pom Wonderful) 2x 1000mg;
Super Curcumin with Bioperine (Life Extension Foundation) 3x800mg;
Quercetin (Jarrow Formulas) 2x500mg;
Fish Oil capsules (Costco) 2000-4000mg;
Vitamin D3 (Country Life) 7000-10000IU; and
Calcium and Magnesium Citrate (Nature’s Plus) 1 x 500mg.


My latest PSA is 0.13. Not bad for 72gys plus 14 months triple block HT. I should go back on HT once my PSA reaches 2 which is about 8-9 years time. Diet is mostly Med diet based round chicken and plenty of oily fish.

Best wishes,

Paul
Posted 5/18/2013 11:18 PM (GMT 0)
T3B for me! Three months after surgery I did 7 weeks of radiation. Finished Halloween 2011. So far so good, but every PSA test is a bit of a challenge. I am currently awaiting the results of last week's test with fingers crossed. I'd like to think that cancer is all behind me now, but . . .

All the best to you and to all the helpful people here. I don't post often, but HW has been a great help to me.

Ivolgin
Posted 5/19/2013 12:35 AM (GMT 0)
49yrsold,

I had my radical prostatectomy in March, 2011. I was suppose to start HT and IMRT immediately after surgery since I was Gleason 9, outside of capsule, lymph node positive, etc. Somehow I had two years of non-detectable with the ultra sensitive PSA test.

I started HT this past January (got a six month Lupron shot and a Rx for daily cassodex pill). Started IGRT/IMRT in middle of March and had 38 daily (Monday-Friday) radiation sessions. The first 28 were wide pelvic and blasted the lymph nodes to you know where and then the last ten sessions were to the prostate facia (where the diseases prostate gland use to be).

I just finished the IMRT up two weeks ago.

Diet changes, my sister-in-law who is a pharmacists put me on a bunch of vitamins and minerals including anti-oxidants (which from reading posts are controvsial) but my R.O. said he was putting so much radiation into the cells that the little anti-oxidants I was taking was no big deal).

You won't notice much change in the first couple of weeks of radiation. about the third week you start getting loose stowels, then you begin to notice fatigue in the later weeks. You may see a little blood in your urine, blood in your stowels since they are dancing around those key intestines, stomach, urethra, etc.

I lost my appetite around the six week and lost about 10 pounds (I had plenty to loose) over three weeks that was a concern to my R.O. but then got my appetite back so all is well.

I have posted on a previous thread all the vitamins and minerals I started taking before and during radiation. If you can't find them, let me know and I will regenerate the list.

Best wishes.
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