CSN Login
Members Online: 13

Looks like its back

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Just got home from my post three year checkup. Actually 38 months. PSA came back at .2 History is Davinci Surgery in Aug 2009
Gleason Pre surgery 4+3 7
Post surgery 3+4
Positive Margin Noted in surgery.

Doctors plan is to wait 3 months and retest psa on Jan 21.

Any positive comments are welcome

lewvino

havit2
Posts: 21
Joined: Jul 2010

You were one of the first to welcome me to this site as you have done with so many others. My thoughts and prayers are with you

havit2
Posts: 21
Joined: Jul 2010

You were one of the first to welcome me to this site as you have done with so many others. My thoughts and prayers are with you

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

It is interesting how a common problem will bind people together. I am relatively new to this board but feel like I know you and a few of the other folks who post here and offer advice. Hopefully the second bullet will get the beast this time.

Best of luck! We need you on this board!

David

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I have appreciated help others gave me in the past when I was diagnosed and that is why I have stuck around on the forum for three years. I don't always post but I do read the posts frequently. At any rate I'm keeping my chin up and waiting till January to see what the next PSA read will be.

lewvino

starr15
Posts: 31
Joined: Oct 2011

With positive margins, did you have radiation treatment?

starr15
Posts: 31
Joined: Oct 2011

Duplicate.

BRONX52
Posts: 156
Joined: Apr 2010

Sorry to hear about the change in status but I am sure you'll come out ok. As you know, we both had similar stats and I too am waiting on results from the lab. Just keeping my fingers crossed for both of us. Take care ---Dan

caseyh
Posts: 63
Joined: May 2002

Your history is not unlike mine. I was 4+3 after surgery, but without any indication of capsule penetration. My recurrence was also .2, but after 2 years not 3. I am now 10 years post recurrence and we have been able to keep it pretty much under control. This is a funny disease. It stresses the heck out of you and consumes much of your life, but it is manageable for most of us. I've known a number of people who were in good health when I was diagnosed that are no longer with us. Your odds for the future are excellent. Stay positive.

hunter49
Posts: 205
Joined: Oct 2011

when was your last PSA and what was the number??

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Answer to the questions asked -

My primary Treatment was davinci surgery in Aug 2009 at Vanderbilt. Positive margin noted.

PSA history - checked every three months, then every six then once a year.

All PSA's have been 0

The last test was done in October of 2011.

So only a .2 rise in the last year.

No radiation treatments so far.

Lewvino

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Larry,

I'm so sorry to read of this development. You already know the standard responses to a developing situation like this and you have the background to know your options.

My only question at this point is why are you waiting for three months to see what the PSA is doing? Unless the PSA test was a fluke or a lab error you know that waiting three months is not going to change anything. I know it's easier to give advice than to follow it but I do hope you get a second opinion on the way ahead.

Best of luck as you sort through this. You are in my thoughts.

K

hopeful and opt...
Posts: 1493
Joined: Apr 2009

for this number.

Is it possible to have another psa test now to confirm or not confirm these results

My thoughts and prayers are with you

Samsungtech1
Posts: 351
Joined: Jan 2011

Lewvino,
I know you know what you are doing so willnot go there, but what about your diet? Do not want to second guess you because I know you are ahead of the curve. The raise is not great, but a rise is worrisome. There are plenty of other reasons that can cause a rise. Sometimes we do things that is a daily thing and do not even think about it. Personally my HT treatments are wiping my memory clean. Could be dementia but it does not act that way.

If your memory still works think back and see if you changed things in your diet.

I wish you well.

Good luck,

Mike

garrho
Posts: 5
Joined: Oct 2012

Hi Mike...I having rising PSA's 11 years after surgery and must a choice between hormone or radiation therapy..any opinions or side effects of your HT....Thanks..Gary

hunter49
Posts: 205
Joined: Oct 2011

Lew it is not fast growing which is obviously good. Hopkins is doing great work with vaccines on a reoccurence, you may want to look into it. I have contact there if you are interested. Told him about your situation and believes it will respond very favorably to treatment. You a good guy and were great help to me let me know if I can help you.

steckley
Posts: 100
Joined: Aug 2009

Sorry to hear about the rise in your PSA. Please keep us informed. You're a good man. Best wishes as you go forward.

mrspjd
Posts: 694
Joined: Apr 2010

Hi Larry, 

To me, you will always be the unofficial CSN welcoming committee of one!  Not trying to speak for the group but I think its safe to say that many of us here have you to thank for graciously welcoming us to this forum with realistic hope, even though none of us, man or woman, wanted to be a part of this PCa community.  From day one, when I first posted about my husband's T3 stage PCa dx, you have been open minded & impartial in your acceptance of ALL posters, no matter their gender or cancer status.  That respect has been non-judgmental and without bias. Thank you for that.

Do you remember how we both agreed that we were the "worriers!"  From one worrier (me-who has perfected worrying into a fine art) to another (YOU), things will work out with your PSA--Post Surgery Anxiety ;) as well as with your other PSA--Prostate Specific Antigen blood work results.  For some, remember that today PCa can be tx'd as a chronic disease much like other chronic diseases such as diabetes.

One suggestion I might offer is to schedule your next PSA testing in 45 days, & another 45 days later, rather than wait 90 days for the next test.  Look for trends in measuring amount & velocity of rise from three results (rather than two).  Its still early, but be proactive & research which imaging tests, if any, might be best, if necessary. Those tests results may help in evaluating your options & deciding what comes next. Be flexible, have a Plan B, should one be necessary, and try to stay focused on the "now"--the present moment, as much as possible.

Most importantly, be well.  

mrs pjd

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Lew, hang in there, donot let this get you down, keep up the fight. We are here to support you.

Kurt

Gmad
Posts: 8
Joined: Sep 2012

I'm sorry it's back. There is so much more that can be done now. Fight...fight..fight!
Hugs
Diane

newporter
Posts: 5
Joined: Jun 2012

Sorry to hear that. Your case could be a slow rise so, perhaps you could try take some diet supplements if you have not already done so. Two studies one from UCLA and the other from Johns Hopkins both indicated pomegranate juice slowed PSADT and perhaps prolong time to full blown met so you can delay taking hormone.

Good luck.

Old-timer's picture
Old-timer
Posts: 156
Joined: Apr 2011

Seems that my story is much like yours, except that I am much farther down the road than you are. I am a 21 year survivor of prostate cancer. The early years were much like yours. I'll give highlights and a few details.

1991, PSA 4.0, biopsy showed cancer, Gleason score 3+4 (7). Radical prostectomy. September
1991. After surgery to 2001, PSA 0. 2002, PSA .1. Early 2003, PSA .2. At 3-month intervals in 2003-2004 it climbed to 1.16. In early 2005, I underwent external beam radiation (35 sessions). The radiation did not do the job because the cancer had traveled outside the pelvic area. The PSA continued to rise until it reached 20.4 (in June 2008). I then went on hormone therapy. PSA dropped to less than .01 (undetectable) and has remained there for four and one-half years. At my recent appointment, my urologist said he no longer needs to see me. I am 86 years old and continue to be relatively active. This is a true story.

Side effects? You betcha! But I am living a great life. Yes, I could have done without the cancer. But what the heck! In some respects, I feel that the cancer enriched my life. It caused me to wake up and smell the roses!

I predict that you will be alright.

In any event, I wish you success.

Jerry

rappa
Posts: 6
Joined: Apr 2012

HI I am over in the UK , 62 years young and all about the same as you, gleason 7, cancer stage T3A, just busting out! had radical open job done may 2011, no nerve spairing all taken away . had psa taken after 3 months 0.1 then again 3 mths 0.1 the surgeon then said would i go to another hospital for the psa which i did it came in at 0.05 which he was happy with , back to original hospital and 0.1 it can be down to the machines they use and the operator so dont worry (i know its easy to say) but i have been there, going back in november this year for another go! take it easy until your next test, they gave me 8 years to live before so any advance is a bonus, my brother has got it at 70yrs old and is on hormone theraphy they say old age will get him before p/cancer its very slow growing my neighbour has psa of 14 and just gets on with life he doesnt wont to get involved with surgery or other treatments that may change his way of life you takes your chances etc! you will be ok! have faith brother thinking of you best wishes.

garrho
Posts: 5
Joined: Oct 2012

Hi Jerry....I had surgery 11 yrs. ago and now my PSA's have returned and rising (last was 1.12-having doubled in 15 mos..Now I must make a decision-radiation or hormone therapy...One urologist says its all in the pelvic area & radiation would work..the second urologist says no-and i should do HT...Any opinions. what were your side effects with each? THANKS Gary

VascodaGama's picture
VascodaGama
Posts: 1734
Joined: Nov 2010

Larry

Sorry for the PSA result.

You are an experienced survivor and I believe that you are aware that recurrence is not declared by a single test but from a series of continuous increases. Probably the PSA started its climbing along the past 12 months but you got only one result and you surely will not lose anything by waiting for a confirmed rise and recurrence.

I think that your doctor’s opinion is reasonably rightful in suggesting you to wait, even if the last result may already indicate recurrence.
You may be anxious and want to start a salvage treatment the soonest, however, the chances to hit the cancer with a dose of radiation are not dependent in low levels of PSA. The success is expected if the radiation manages to destroy the DNA of the cancer cells where they may exist.
Similarly to cases of RT alone (CK or IMRT) as prime treatment, the success is not dependent on the PSA level but on the perfect hit. The PSA could be 2, 3, 4 or 5 and one still get cured with RT.

It may be time for you to consider reviewing the results from surgery, particularly the pathological report. The positive margins commented in your post do not confirm existing extra capsular extensions, if they are apparent in both places of dissection of the prostate, namely at the rectum and bladder sphincter. These are typical spots of apparent margins because after cutting the outer skin may slightly retreat which is seen under the microscope and therefore reported by the pathologist.

Your path report at the time of biopsy is more worrisome because it indicated perineural invasion. Typically in such cases, spread of cancer may have occurred, even before surgery, through the path of the nerves controlling erection. That could lead to metastases far from the prostate bed.

In any case, your three years in remission shows that your cancer is slow growing. You can try to get it with salvage radiation attempting to cure or you may delay the RT treatment with hormonal therapy.

I suggest you wait for recurrence and to such an extent, in getting more than one second opinion on your diagnosis before committing. The side effects will superimpose on the ones you got and such is also important to consider.

I wish you find an answer to your quest and get peace of mind.

The best of lucks in your continuing journey.

VGama

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I read your response several days ago but have been on the road out of state working on a contract. When I get home this evening I will get out my post surgery report and share in the next day or two.

I'm comfortable waiting till the 90 days for another test. Though I do appreciate others suggestions.

Lewvino

mrspjd
Posts: 694
Joined: Apr 2010

Larry,

You posted: "The last test was done in October of 2011. So only a .2 rise in the last year." While everything so far may indicate a slow growing recurrence (or even the possibility of lab error), here's an hypothetical "devil's advocate" question to consider:  how do you know that the .2 rise took place over one year (October 2011-October 2012) and not over one month, say from September 2012 to October 2012?  This was the reasoning for suggesting you consider your next PSA test @ 45 days and one more @ 45 days after that one--to understand the trend in rise, both in degree and velocity, and even rule out a rapid rise or lab error.  If it "looks like its back" as your thread title indicates, seems like you'll need to be making some important decisions sooner than later. Obviously you can still do the next PSA test in another 90 days and again, another 90 days after that.  If your comfortable with the passage of 3-6+ mos time, kudos.  

I hope that you seek out second opinions, especially from knowledgeable and experienced medical oncologists with a specialty in PCa.   Please know that no matter how you proceed or which decisions you make, I support your choices. Best of luck. 

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Yes mrspjd i've thought about your scenario that you have brought up.
Decisions to make of course will be made in January time frame. I've read enough to know that .2 is considered a recurrance. I will be posting my original 'notes' in another thread.

When I get the second reading in January then I will seek out second opinions. I had four opinions for my first treatment 3 years ago!

Larry

mrspjd
Posts: 694
Joined: Apr 2010

Thanks, Larry. Appreciate your reply. Will be thinking of you and hoping for the best. Warm regards to you and yours.

Old-timer's picture
Old-timer
Posts: 156
Joined: Apr 2011

Sorry I did not respond sooner.

First, I will talk about side effects. My uro who did the prostectomy said he did nerve sparing suergery. After surgery, he said he was not able to save one of two nerves because the tumor had engulfed one of them. This left me with good feeling but only a semi erection. Incontinence, not good the first few weeks, then a pad a day until radiation. After radiation, ED remained about the same. Incontinence gradually became severe during and after radiation. Scar tissue in the urethra appears to be the cause of this.

On hormone therapy, ED is total and incomtinence is about the same as it was after radiation and before HT.

You may find this difficult to undestand, but I am more or less OK with both of these conditions. I continue to enjoy hugging and playfully engaging in sex with my bride of 63 years. In fact, I enjoy the hugging more than I sometimes did before HT. I can now hug as long as the two of us want. By the way, orgasam still lives. I might add that I still enjoy looking at and teasing the ladies, whenever it seems appropriate. Really though, I am not a dirty old man. But I continue to enjoy living.

Concerning the incontinence, I seriously considered the AUS 800. I decided against going that route priamrily for two reasons: (my age) and (I live in a continuing care retirement center and it is reasonably conmvenient for me to "diaper myself," so to speak. I alternate using Depends-type undies, pads, and Cunningham's clamp. Thankfully, I do not leak at night while in bed, so I use no protection then. Wehn I get up in the morning, I squeeze my penis to prevent leaking as I walk to the bathroom.

What advice do I have for you? I do not choose to give advice. The only step I took that turned out to be sour was the radiation. But it seemed that I needed to do that, because there was a 67 percent chance that it would have worked. I was in the 33 percent group. But I am not bitter about it.

I wish you success.

Jerry

Samsungtech1
Posts: 351
Joined: Jan 2011

Life is either a trial or a blazing path of fun. We can not change our personalities unless we really work at it. I can not answer for anyone else, but I feel that everyday I try to change my thinking. Hard to change your outlook, but I work on it. Life is a gift. I am sure that I am not a posture child for clean living, but I work onmit everyday. Do the best you can. Enjoy life. I am sure you do, but there are at least 100 things or friends we could do more with that would give us joy. Worry about what you might miss if you do not do,it while you can.

Mike

garrho
Posts: 5
Joined: Oct 2012

hi jerry..thanks for sharing your story...I have a recurrance, with rising psa's, 12 years after surgery..one urologist is recommending radiation , my second opinion urologist recommends hormone therapy...any opinions and would greatly appreciate what side effects (level of severity) you experienced with each...thanks again...gary

Old-timer's picture
Old-timer
Posts: 156
Joined: Apr 2011

First, I will talk about side effects. My uro who did the prostectomy said he did nerve sparing suergery. After surgery, he said he was not able to save one of two nerves because the tumor had engulfed one of them. This left me with good feeling but only a semi erection. Incontinence, not good the first few weeks, then a pad a day until radiation. After radiation, ED remained about the same. Incontinence gradually became severe during and after radiation. Scar tissue in the urethra appears to be the cause of this.

On hormone therapy, ED is total and incomtinence is about the same as it was after radiation and before HT.

You may find this difficult to undestand, but I am more or less OK with both of these conditions. I continue to enjoy hugging and playfully engaging in sex with my bride of 63 years. In fact, I enjoy the hugging more than I sometimes did before HT. I can now hug as long as the two of us want. By the way, orgasam still lives. I might add that I still enjoy looking at and teasing the ladies, whenever it seems appropriate. Really though, I am not a dirty old man. But I continue to enjoy living.

Concerning the incontinence, I seriously considered the AUS 800. I decided against going that route priamrily for two reasons: (my age) and (I live in a continuing care retirement center and it is reasonably conmvenient for me to "diaper myself," so to speak. I alternate using Depends-type undies, pads, and Cunningham's clamp. Thankfully, I do not leak at night while in bed, so I use no protection then. Wehn I get up in the morning, I squeeze my penis to prevent leaking as I walk to the bathroom.

What advice do I have for you? I do not choose to give advice. The only step I took that turned out to be sour was the radiation. But it seemed that I needed to do that, because there was a 67 percent chance that it would have worked. I was in the 33 percent group. But I am not bitter about it.

Hope this is helpful to you.

Jerry

garrho
Posts: 5
Joined: Oct 2012

hi jerry..thanks for sharing your story...I have a recurrance, with rising psa's, 12 years after surgery..one urologist is recommending radiation , my second opinion urologist recommends hormone therapy...any opinions and would greatly appreciate what side effects (level of severity) you experienced with each...thanks again...gary

garrho
Posts: 5
Joined: Oct 2012

hi jerry..thanks for sharing your story...I have a recurrance, with rising psa's, 12 years after surgery..one urologist is recommending radiation , my second opinion urologist recommends hormone therapy...any opinions and would greatly appreciate what side effects (level of severity) you experienced with each...thanks again...gary

Trew
Posts: 892
Joined: Jan 2010

Hi Lew,

At almost 3 yrs at .001 my PSA this past month was .1.

It does get one's attention, for sure. And its such a small number, too.

Trew
Posts: 892
Joined: Jan 2010

I had bladder neck in invasion.

Searching the web I discovered that bladder neck involvement is rather uncommon. Statistics on it are therefor limited. Of those with bladder neck involvement after 5 years 50% ......

So my search went.

So not quite 3 yrs out and I see a movement in my PSA.

And yes, this whole thing can be a bit scary at times.

Timon
Posts: 7
Joined: Nov 2012

I am new to this so excuse my ignorance, please. In December 2010 my PSA was 5.55 so I was referred to a urologist for biopsy. I had 10/12 positive cores all with Gleason Score of 8 (4+4). Bone scans and MRI were negative so I opted for Da Vinci surgery in March 2011 at age 62. Post-surgical pathology report showed no evidence of cancer in the lymph nodes or bladder neck. The prostate weighed 28 grams and Gleason was downgraded to 7 (4+3). Report said invasive tumor involves 50% of prostate, is multifocal, bilateral and present from apex to base. Margins involved by invasive carcinoma, multifocal, right and posterior lobe. Tumor also comes multifocally within 0.5 mm of the margin. Pathologist noted lymph vascular invasion and perineural invasion and staged the beast at pT3a (extraprostatic extension), however he also concluded, "...entire base of the area of seminal vesicles is submitted without definite involvement of a scant amount of seminal vesicle tissue present."

After 8 hours I was returned to my room and, inexplicably, the catheter came out sometime during the night and they were unable to reinsert it properly. A day or so later it was reinserted with the aid of a cystoscope and I was discharged after 4 days in hospital. I remained catheterized for about 4 weeks and have remained severely incontinent ever since despite thousands of Kegles and even physical therapy.

My first post-op PSA was July 2011 and it was 0.00. The second was in March 2012 and it was 0.12. (Urologist said that was insignificant.) I went back in October for another check up and he suggested that if the incontinence was not cleared up, we could consider the "sling" or the AUS; he did a PSA and a few days later I was informed that the result was 0.22. His plan is to "observe for now" and retest in April 2013.

Seems like I'm a bit more concerned about this than he is. I can handle the continued incontinence if I have the sure knowledge that the Cancer is gone. But now, I'm not even sure of that! Is this 0.22 PSA something to get worked up about? Thanks for any advice!

VascodaGama's picture
VascodaGama
Posts: 1734
Joined: Nov 2010

Timon

Something is producing the PSA serum. After surgery the level should keep constant at lower than 0.06 ng/ml. The two increases may be due to recurrence if lab error is ruled out.

I would suggest you to get another PSA test (in three months) sooner than what your doctor's suggestion, and then decide from there. While waiting you could do some researches into salvage treatments. Check about the side effects that will superimpose to the existing ones.

Try getting details about the effects of radiation on the AUS implantation.

Get second opinions on your present status.

Wishing you peace of mind.

VG

Timon
Posts: 7
Joined: Nov 2012

VG

Thanks for the advice and kind wishes.

T

chitown
Posts: 90
Joined: Mar 2010

Got into this site after many months and sorry to see this direction of progression. I have been following the technology and skills improvement since my surgery 2 years ago...and there has been vast improvement in dealing with things like these. So its all positive. Fight a good fight!

bdhilton
Posts: 759
Joined: Jan 2010

Hey Larry….Sorry about the not so good news then again “it is what it is” and I know you will deal with it the best you can. I had my “failure” one year ago in my August 2011 test (about 18 months after surgery). Aug 2011-0.02, December 2011-0.1, April 2012-0.15, August 2012-0.3 and I am late going in this month for my Dec 2012 test…

My oncologist is not suggesting or pressing any other treatments at this point but I am sure other options will be discussed with me at some point (and the longer I can delay the better for me personally)…I continue my vegan diet (yes I cheat on occasion and have a piece or two of cheese pizza) with the exception of sockeye salmon/sardines…

All the best in your journey and give me a call if you want-Peace

bdhilton
Posts: 759
Joined: Jan 2010

Hey Larry….Sorry about the not so good news then again “it is what it is” and I know you will deal with it the best you can. I had my “failure” one year ago in my August 2011 test (about 18 months after surgery). Aug 2011-0.02, December 2011-0.1, April 2012-0.15, August 2012-0.3 and I am late going in this month for my Dec 2012 test…

My oncologist is not suggesting or pressing any other treatments at this point but I am sure other options will be discussed with me at some point (and the longer I can delay the better for me personally)…I continue my vegan diet (yes I cheat on occasion and have a piece or two of cheese pizza) with the exception of sockeye salmon/sardines…

All the best in your journey and give me a call if you want-Peace

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network