Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

  DIAMOND  
This member is a YANA Mentor This is his Country or State Flag Member's Photo

Charlie D lives in North Carolina, USA. He was 64 when he was diagnosed in March, 2004. His initial PSA was 6.00 ng/ml, his Gleason Score was 7, and he was staged T1c. His initial treatment choice was External Beam Radiation (ProstRcision) and his current treatment choice is None. Here is his story.

George Carlin once said a dog's life is waiting. Waits to go in, go out, be loved, be beat,.... I choose at this early stage to wait, do supplements, eat copious carrots and wait to see what's up doc.

Initially, all I find are specialists pushing product, theirs. If my PSA goes north, I would probably opt out for the Laparoscopic Surgery trip.

Your website is the best I have yet to uncover in this emotional coaster ride. My thanks.

UPDATED

April 2004

Charlie says his staging is actually T1c and his latest PSA is 7.9 ng/ml.

UPDATED

August 2004

As of this date, 13 August 2004, my lucky Friday the thirteen, I have not had a PSA in over 45 days. So no news might not be good news. I have moved to Arkansas. Will get back to you all after the next PSA. Still leaning toward laparoscopic removal if the PSA levels indicate unusual elevation. Doing supplements, proper diet, exercise and plenty of positive thoughts and sex.

Attended my first person to person support group and was sad to hear the majority did not know their PSA numbers and other details of their diagnosis. Most all of them have had surgery and did so on their Urologists first recommendation. No second opinions, no complete understanding of their cancer, just a blind leap based on the Urologist. All encouraged me to reach a decision SOON.

I am not certain that I will return to the group. Hope I am not in denial, but I feel good about my watchful wait thing and will consider surgery if my numbers go north.

UPDATED

September 2004

My PSA first since May 2004 (which was 7.9 ng/ml) checked in at 5.8 ng/ml. Good news. More later.

UPDATED

July 2005

Urologist exam 28 July 2005, PSA holding at 6.5 ng/ml, DRE showing a little more hardness according to the Urologist.

Appears the cancer is within the Prostate, but then who knows for certain. I am certain the watchful mode is best for me at the moment. Still taking the nutricants, supplements, low fat diet, exercise and working on reducing stress levels.

Always looking for alternative treatments, the Ultra Sound method by USHIFU, not approved in the US sound encouraging. Anyone having experience in this area, I would appreciate input. My best to all, stay positive.

UPDATED

December 2005

Did the follow up PSA 8 Nov 2005. The Urologist gave me a blank look and told me, "It was the same as last time". So as usual the question for dice and slice was answered with a no from the dicee/slicee. As long as my PSA does not escalate, then I will assume that my cancer is within the walls of the Prostate. I realize this is going against the last four Urologists recommendations to remove, but it is my call. Doing a lot of mental and physical exercise. Taking the supplements . Closing in on March 2006 which will mark the anniversary of my first diagnosis. Hope all is well with my brothers.

UPDATED

December 2006

Returned from a eastern Europe trip in May 06, admitting that my regular "watchful wait" diet was difficult to follow. My urologist visit just days after my return to home, had my PSA at 9.9 ng/ml the highest ever. Jet lag and diet were the cause in my opinion. The Urologist asked me if I wanted to continue the course of WW and I confirmed. He told me, "Lets schedule an appointment in a year" I told him we were doing a six months exam and he tells me he remembers now, "yes in six months" He does not agree with my watchful mode. I did a test with a mail out PSA lab and it returned 4.7 ng/ml. This testing lab always comes in low and is done with a finger prick by mail. I scheduled an Oncologist visit. PSA was tested there and came in at 5.9 ng/ml! It is my present course to retain the Oncologist as primary and cancel the urologist, continuing my WW. Next visit with the Oncologist is Dec 11, and I will update accordingly.

My warm regards to those battling not only their cancer but the aggressive methods of the surgery boys.

Charlie.

UPDATED

January 2007

Had an oncology visit, December 2006, PSA 9.3 ng/ml. We decided to schedule another PSA lab test in three months, in office six months. I am concerned that my PSA is elevating, and considering the Radiology Clinics of Ga. I am moving up the bar for input.

My thanks to Terry for his prompt reply to a recent question asked.

My best regards for a positive 2007.

UPDATED

June 2007

My goal in watchful waiting was to redirect my treatment mode if PSA reached double digit. For approximately three years I seem to limit the PSA under 10. Diet, supplements, avoiding stress, and exercise were my basis for watchful waiting, and hoping that if PSA remained under 10 then it was contained to the prostate. I could not feel warm and fuzzy with the advice four urologists in three states advised, and that was doing the "GOLD" standard.

After a couple brushes with a 10 PSA, I focused on Georgia Radiotheraphy Clinic located in Decatur, Ga. This was a source that actually responded with data on cure rates, side effect reporting, ect. RC of Georgia has the track record and after careful consideration, I have done the seed implant and now in the second week of beam radiation therapy. GRC is transparent in my opinion and that is not the norm in my quest for knowledge and advice as it applies to PC. Prior to treatment, I had a bone scan, cat scan, and blood work.

Upon entering the treatment, Dr. Critz, the director of GRC predicted a 77% cure. Post seed implant and after review of the cat scans, he moved it to 85%.

The seed implant was a forty-five minute procedure. The only discomfort was the Foley catheter, which was removed the following day. I was told to resume anything that I was doing the week prior with the exception of bike riding. I drove myself 900 miles back to Arkansas for a three week wait period prior to the beam therapy.

So far, the only side effect I experience is a slight burring when I urinate. I am told this is normal for radiation and will go away eventually. My sex life is normal, and all systems are go.

If you have any questions concerning this procedure, you can go the web site of Radiotheraphy Clinics of Georgia or drop me an e mail.

UPDATED

August 2007

The first PSA test recommended was two weeks after the last of the 35 radiation treatments. The oncologist were looking for 4.1 to 10. My PSA came in at 3.178, which of course was good and under the normal. The next PSA will be three months post radiation, and then each six months. The Radiotheraphy Clinics of Georgia determine a cure if PSA remains under .2 for ten years. The caution that there may be a "bounce", but not to worry.

The only prescription drug I am taking is Flomax. I have been reducing the dose and expect to be off it entirely soon. I am not nor have I ever wore a diaper or had urinary control problems. My sex is normal. All systems are go.

UPDATED

March 2008

Nine months now after seed implant and six weeks of external beam radiation from the Radiotheraphy Clinics of Georgia, my PSA comes in at 1.22. On course and positive in regards to the treatment carefully (three years after diagnosis) chosen.

UPDATED

January 2009

Jan 7, 2009, 18 month PSA 1.09 which is down trending. My oncolgist tells me that the burn upon commencement of my urination is due to the radiation. Otherwise most systems are go.

My best to all this New Year.

UPDATED

May 2009

May 13, 2009 PSA 1.2, still an initial burn or sting with the initial urine stream, otherwise, the decision to seek treatment three years after diagnosis with Radiotherapy Clinics of Georgia in my opinion remains a comfortable choice.

To those that are recently diagnosed it does not apply to all, but to repeat, it was three years after diagnosis, that I found a treatment that was acceptable to me personally.

Go brothers, be positive,

Charlie

UPDATED

November 2009

PSA (November 18, 2009) at 1.03 is still down trending since the seed and radiation at RCOG. Looking for a PSA of 0.20.

ED a problem, all else is good to go.

My hopes for all are extended.

My best of regards,

Charlie

UPDATED

February 2010

Just a note to update my most recent PSA, down trending since my seed implant and radiation with RCOG May 2007. This is the first time my PSA has broke below the single figure, it is now 0.74.

ED is a problem, no luck with the drug companies solutions, the pump me up is cumbersome and inconsistent, and my age is probably not helpful.

Oh well, my best to all my brothers out there, and my continued thanks for YANA and all that you do.

Charlie

UPDATED

July 2010

Just posting my latest PSA, last was 0.74 now lower at 0.47

All seems to be well with the exception of ED, most of which probably being an ole fart!!

My brothers hang in there, my best of regards and thanks to YANA.

UPDATED

October 2010

PSA going south at 0.39, but hoping to reach the 0.20 number.

UPDATED

November 2011

June 1, 2011 PSA 0.53, Sept 2011 0.46 so long term down trend. All seems to be ok.

My best to you all,

Charlie

UPDATED

May 2012

PSA 1 May 2012 was 0.89, concerned with the feed back from the RCOG website that indicates this recent PSA reading has doubled in the last two years. that is 2010 my PSA was 0.49, 2011 0.46 I had feed back from a member on this site that this PSA was indication that the cancer was possibly still there and I should proceed carefully being attentive. My personal oncologist does not seem to be concerned. [There seems to be a gradual recognition tha Ultra-Sensitive PSA has some issues that need careful consideration.] My inquiring mind would like to have third party input. this is the response from a member of the support group:

"You should certainly be concerned, because your PSA is increasing, however, it is not increasing very fast (doubling time of about four years?), so if the increase is coming from cancerous tissue, it's not growing really fast. I would watch it carefully, and perhaps start thinking about what might be done if it keeps going up. There are some new imaging techniques being used that entail real time MRI that are being touted to be able to detect recurrence by showing vascularization better that Doppler Ultrasound."

My best to all, Charlie

UPDATED

October 2012

Recent August 2012 PSA rising again to 1.9, my oncologist does not seem concerned, he tells me I still have a prostate and it the rise appears to be normal but concerning.

UPDATED

February 2013

PSA today was almost double! since last done in Dec 2012, 3.4 concerned but optimistic. Would like to have some response from those of us that might have experienced an increase in PSA similar, I was diagnosis 2004, treated with seeds and radiation at RCOG 2007, PSA reduced to.39 9/20/2010.

My best all, Charlie

My sub treatment is visits to oncologist three month intervals, otherwise watching and waiting.

UPDATED

May 2013

PSA now at 5.3, my urologist and oncologist agree that Lupron would be the next treatment, any feedback as to what others might have experienced with Lupron would be appreciated, best to all, Charlie

UPDATED

February 2014

After PSA was elevated to 11.4 June 2013, went on Lupron, now Jan 2014 after 7 monthly Lupron injections, PSA is .1 and off lupron until next PSA is done. Been getting negative input concerning the Return Clinics of Georgia where my seeds plus radiation was done in 2004. One might examine the details on RCOG's data base prior to selection of this treatment done there in Georgia. I personally at this time am not warm and fuzzy over the data base they present. Otherwise, happy about the results of my Lupron experience, although now I am experiencing hot flashes and truly appreciate my opposite gender. My ED seems to remain the same, nothing going on down there. My best to all, Charlie

UPDATED

March 2015

PSA is now at .5 after six months of Lupron, down from September 2014 (10.7)

My best regards to all, Charlie

UPDATED

April 2016

Just off a six shot in the butt lupron lowering my PSA to 0.5, 12 years fighting the beast, obviously my original treatment did not work. If you consider RCOG look carefully, ask a lot of questions, get a third opinion from an oncologist, and make your decision yourself. My best to all, Charlie

UPDATED

May 2017

After a PSA reading of 12+- in July 2016 I did six monthly shots of Lupron lowering my PSA on Jan 7 to .5 , Stopped the Lupron. I took off for San Miguel, Mexico for two months. On my return my PSA was 1.6. The six months on six months off is working for me at the time, thankfully.

I wish all well, keep up the fight.

Best regards, Charlie

UPDATED

June 2018

My initial treatment was seeds and six weeks of radiation. 2007, Got an increase in my PSA and it was not a bump. Been on Lupron for five years. Initial one a month Lupron for six months, then six months off. Now on a 3 month dose. my PSA off Lupron increases to double digits and that is the signal to resume Lupron. So far so good. Not enjoying the hot flashes and emotional highs and lows but not complaining that I am above ground. My best to all.

UPDATED

July 2019

My hospital Mercy, switched from Lupron to effing, administered painfully in the stomach, after this change of brands my PSA goes to double digits, now my oncologist has scheduled a scan, ordered prednisone and an oral chemo frog, adaron,!!! Mercy tells me there is no difference in the switch, I say if it was that is Lupron, working, why change? Sounds like the dollar signs are moving the call.

UPDATED

August 2020

After one year of Lupron and Zytiga, my PSA is trending down to 3.7.

UPDATED

July 2022

My PSA is escalating, now 35. Never been that high. Last drug was Zytiga which created adverse side effects . Will see my onocologist tomorrow and will update after.

UPDATED

February 2023

Last PSA was Jan 2023 (246) my cardio system elevated receiving the rising PSA so my oncologist and I agreed since there are no treatments for my rising PSA that I not take PSA readings. Actually there were 3 treatments available:

1) chemo (side effects at my 82 years of age rule this out)

2) radiology shots, not clinical approval

3) hormones which I had bad cardio side effects

so I am waiting for cancer to spread. At this stage I have no pain, my plumbing works, and my mental attitude is okay.

My onocolgist and my cardiologist wrote a published paper (page1 -- page2 -- page3) on my reaction to Zytiga which put me in the ER.

Charlie's e-mail address is: charliebdavis1957 AT gmail.com (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS