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Update from Lewvino

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I have taken a break for the past three months from the forum. I did think of everyone though!

My last post was back in October when my PSA measured .2 following three years of zero's post Davinci Surgery.

I had my retest this week per the Doctor's suggestion. The good news is my test came back again as .2.

So no increase in the past three months.

The Doctor is trying to determine a doubling time since the increase has been from 0 to .2 from Oct 2011 to Oct. 2012 (Sometime during that period it raised)

So the plan is to set back and wait and retest again in late July. That will be close to 2 weeks shy of my four year surgery anniversary.

I'm happing with this plan. If / when radiation is started I would rather know how aggresive this appears to be.

Lewvino (larry)

Swingshiftworker
Posts: 620
Joined: Mar 2010

It's statisticallly impossible to determine a "doubling time" based on a zero baseline.  Was it reallly ZERO or just a low number that they rounded down to zero? 

As I recall, 0.2 (which is where you're at) is the redline for concern for possible PSA recurrance post-surgery.  So, it's obvioulsy good that your PSA has not changed in the 3 months since that reading in Oct 2012.  Hopefully, there will be no further change in July.

Good luck!

 

 

Trew
Posts: 891
Joined: Jan 2010

Lew, I hope you can avoid radiation.  Maybe only get a few hormone shots?

Radiation is rough.  No kidding.

 

Not meant to scare you, but radiation can do things to you.

 

I am hoping and praying for the best for you.

 

 

 

 

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

I'm praying that the .2 stays right there or lower, Zero. Maybe HT is a better choice than radiation. I know with your experience with this monster has been a long road.

Good luck

God Bless!

 

ob66
Posts: 214
Joined: Apr 2010

Wow. Every body is obviously different. In a different thread I described how easy lupron was for me, and how I loved it and called it my "lupron vacation" as lack of worries about PSA rise for two years. Now with RT, I can say it was a walk in the park. Hardly noticed it other than having to show up 38 days in a row for 15 minutes. Now Trew, you and i shared AUS surgery....That was a b*tch.....Testicles swelled and turned purple black. Pain near over the top, but then even that settled in 2-3 weeks....Maybe I am just and optimist, or maybe I am lucky with pretty good protoplasm, but some of these warnings I see are just not so in my case....JMHO

hopeful and opt...
Posts: 1282
Joined: Apr 2009

 I thought of you several times during the last few months.

I notice that you will be waiting 6 months for the next PSA; have you considered 3 months?

I wonder, who is managing your case, is it a medical oncologist tha speicializes in prostate cancer or another professional that you consider to be qualifed, why so?

My thoughts and prayers are with you.

steckley
Posts: 100
Joined: Aug 2009

Larry,

Sounds like a good plan.  

All the best to you.

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

Yes it is difficult to calculate your PSADT but the PSAv is Zero. You will need three results to verify aggressiveness. In any case let's hope for a continuing indolence status.

Don't rush.

VG

Trew
Posts: 891
Joined: Jan 2010

You haven't been around for awhile.

 

Hope it isn't because of bad news.

 

 

BRONX52
Posts: 156
Joined: Apr 2010

HAVE NOT BEEN AROUND FOR AWHILE BUT I'LL BE ROOTING FOR YOU. OUR CASES WERE SIMILAR IF YOU REMEMBER AND WE HAD SURGERY AROUND THE SAME TIME . KEEP US INFORMED OF YOUR PROGNOSIS.  KEEPING YOU IN OUR THOUGHTS AND PRAYERS.   DAN

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

Be alert and watch it; but little or no concern yet.

I agree with Vasco; avoid radiation if possible.

Good to see you back on the board, Larry.

Jerry

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

I goofed. I mistakenly said Vasco recommends no radiation. It was Trew who said that. I apologize to Vasco and Trew.

Jerry

ob66
Posts: 214
Joined: Apr 2010

Seeing the new posts on your thread Lewvino, i imagine you are getting near that next testing. Hope all holds well and/or improves. Waiting and anticipating PSA results post surgically is the worst. Wishing you all the best.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Yes, I had my blood drawn this past Monday. I see the Doctor this coming Monday (July 29) to get the result.

I've taken a break from the forum for awhile.

Thanks for remembering me OB66 and others! How you doing Trew?

 

 

 

 

Trew
Posts: 891
Joined: Jan 2010

Trew is going backpacking in a few weeks in Colo.  Be gone 2- 3 weeks.

 

Been thinking of you often, Lew.  Post your blood results when you can so we can be concerned or rejoice together.

 

 

 

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I met with my urologist yesterday for the news on my latest PSA. August 12  is my anniversary of having Davinci Surgery as my primary attack plan in 2009.

Gleason was 7 (4+3) Pre surgery and changed to 7 (3+4) Post surgery with Positive margin noted.

For those that have been following or asking for an update. I had taken a break from the forum for several months but actively think about many of my friends on the forum.

My PSA was at .2 in October 2012,

Again a reading of .2 Jan. 2013 and

The latest reading for July 2013 is .3 so an increase over 6 months time. Of course that is not the news one wants post surgery but

I will be meeting with a radiation oncologist on Tuesday August 6 to discuss next steps.

My urologist said of course I could do nothing or if I do something he strongly recommends doing so before hitting .5 for the best results.

He believes it is a local recurrance in the area of the prostate bed where the positive margin was noted.

Some may ask why didn't I start radiation immediately following note of positive margin?

I have followed the advice in Dr. Patrick Walsh's book that he sees no significant difference on outcome if radiation is started immediately or wait until the rise occurs. Of course though with keeping close tabs on the PSA levels So I chose to wait and test frequently.

I am very familiar with the different types of Radiation including Proton. My step daughter is actually in her third year of Med School at Loma Linda Univeristy and my father was treated for his prostate cancer at Loma Linda via Proton several years back. I was just in the Loma Linda area about one month ago to visit my step Daughter. Also My Oldest son is also third year med school at Cornell University NYC. So of course both of these future doctors are interested in Dad's health and have been speaking with doctors at both institutions about my case and care.

A final decision has not been made by me but initially my Insurance denied PROTON treatment. I know each of us have strong personal feelings on pros and cons of treatment but ultimately we each have to decide on our attack plans for figthing this.

Thank you all for keeping me in your thoughts! It really means tons to hear from many of you whom I have corresponded frequently with in the past.

I will keep you posted after my visit next week with the Radiation Oncologist.

Beau2
Posts: 228
Joined: Sep 2010

Larry,

Thanks for the update.

Sounds like you are getting a lot of good advice and are moving forward.

Best wishes and good luck!

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

Larry

This increase may confirm the recurrence status, however, I agree with your doctor suggestion for a salvage treatment when the PSA reaches close to 0.5ng/ml. This threshold seems to be still far from occurring. The pattern of the PSA increases seems to provide a full one year which you can use to research on details and decide on a salvage protocol.

Some guys like to do “it” earlier but there is no conclusive definition of the best timing or time that the expression “earlier” refers to. Typically urologists recommend starting a treatment when a patient reaches the PSA = 0.4 (This is also recommended in the book of Dr. Walsh) but radiologists would care more to have a target then a PSA number to define the treatment.
Without that “visible” they only can follow past experiences and direct the rays to typical areas such as the prostate bed. The “work” is done on guessing.

The oncologist DR. Myers believes that PCa firstly spreads and stays in the lymph nodes during years before it advances to other parts of the body and tissue. I think that there are enough reasons to believe in that theory and I would recommend you to inquire in your next meeting with the radiologist about the field he/she would be including in the protocol. You could inquire if he would recommend you to have an image study to locate the regional lymph nodes (microscopy PCa may not be detected yet but the nodes will) so that he better could plan the therapy.

Better preparedness leads to better outcomes and to lesser side effects.

My best wishes in your decision process.

VGama  Frown

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Met with the radiation oncologist yesterday. She has 17 years experiencing in treating cancer. WHen I asked her how many prostate cancer patients she stated too many to count.

After review she and I believe its a local recurrance. She was not pushy at all but I believe this is the best option for me. She did state we could wait and see what happens but I would rather knock this beast out for good.

The thought process is local recurrance since all my lymph nodes were clean post surgery, I did have a noted positive margin in the apex, 4 years post surgery to reach this point of .3 and I did have scattering of cells graded as 5 though the majority were 3 + 4 post surgery examination of specimens.

At any rate the plan is to start IMRT sessions the last week of August. She is recommending a total of 38 sessions. This Friday I go to get the cat scans, tats, mold that I will lay in, etc done and then start up the treatments in a couple weeks.

 

lewvino

 

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