Quell my nerves PLEASE

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JustJulie
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Date Joined Mar 2006
Total Posts : 355
   Posted 7/5/2007 9:17 AM (GMT -7)   
Hey Folks:
 
After a vavourable PSA score of 0.61 at my husband's last appointment, this checkup yielded a rise to 1.78.  I think the doctor's assistant must have recognized the fear in my voice (or from the sheer silence at my end) and said "they do tend to go up and down" ... I guess I was just hoping for the ZERO score this time around.
 
We got no call from the doctor (and I'm sure she's seen the score) so I'm praying it was just a bump in the road but my heart jumped to my throat with the number.  While it's still under the "flag" number I really, really wanted a zero ...
 
If you can spare some thoughts, please keep my husband in your prayers and we face this bump in the road - although he can be stubborn, he means the world to me.
 
Many thanks,
 
 
JustJulie
 

myman
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Date Joined Feb 2007
Total Posts : 1219
   Posted 7/5/2007 9:28 AM (GMT -7)   
JJ,

I know your fear. Would you have the choice to have another blood test? As you've seen here before there are those whose numbers do fluctuate a bit. Remember everyone is different. When do you see your doc again? Call her if you want. See what she says instead of guessing, maybe that would help. I'll be looking for your reply.

All the best,
Susan

Dutch
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Date Joined Feb 2007
Total Posts : 400
   Posted 7/5/2007 11:35 AM (GMT -7)   

Julie;

Dutch-ESS here - these PSA tests are just as hard on us as the guys aren't they?  My husband had proton and we were told that with radiation the PSA would tend, in most cases, to go down slowly to what they wanted to see as a nadir of under 0.5.  We were warned that there could be some upward bounces - he has not experienced this, but have many friends who have had this happen.  Think one bounce in itself, while very scary, doesn't mean alot - should it occur a second time would be more alarming.  We were to have his PSA checked every 6 mos, but think if this had happened to him, we would have it done again in 3 mos.

Did you use the same lab as they also can vary?  We will keep you in our thoughts. 

Dutch-ESS 

After submitting this I had another thought - checked your well done JustJulie thread and did not find what your husband's original PSA was.  Is it possible that the first PSA he had done after brachy that came back as 0.67 could have been wrong, which means you would be using an incorrect point from which to gauge further testing?  I was under the impression that it took some time for the seeds to begin to build up radiation in the prostate, so the drops might not be too drastic at first.   Just a thought.   Think a deep breath and a hot cup of tea might be in order right now.  It is surprising how these old buggers grow on us isn't it??  Hang in there

  



Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
 
 

Post Edited (Dutch) : 7/5/2007 1:51:00 PM (GMT-6)


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 7/5/2007 4:08 PM (GMT -7)   
A definition of rising PSA is three higher numbers, not necessarily as consecutive readings as there can be fluctuations.

Gordy
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Date Joined Jun 2005
Total Posts : 528
   Posted 7/5/2007 4:15 PM (GMT -7)   
"We got no call from the doctor"

Call the doctor. Or, maybe it's better to ask a bunch of non-medically trained "experts".

-Gordy

jetguy
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Date Joined Sep 2006
Total Posts : 741
   Posted 7/5/2007 5:54 PM (GMT -7)   

Dear Julie, I don't know about the significance of the reading, but please call your doctor and find out what you need to know.  This will make you nuts, so please call your doc.  Then don't forget to let us know how things are.

Regards,

Bill


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 7/5/2007 6:19 PM (GMT -7)   
Hi JustJulie,

I'm so sorry that you're going through this stress right now. PSA numbers do tend to fluctuate post treatment so this could be very normal. Talk to the doctor and see what she has to say about this.

I'm not sure if this will help, but I put together a list of vitamins and foods that help fight PC, link is http://www.healingwell.com/community/default.aspx?f=35&m=844022. I would recommend the following for your husband:

Food:
* 1-2 tablespoons ground flax seeds (not oil) - daily
* 1 glass of pomegranate juice - daily
* jalapeno peppers
* tomato sauce

Vitamins / Supplements - Daily:
* omega-3 (cod liver oil / small fish – contains less mercury)
* garlic (kyolic)
* B-complex (50 mg)
* selenium (200 mcg)
* esther-C (500 mg)
* vitamin D - 1000 iu)

Big hugs to you.

AEG

bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 7/5/2007 7:32 PM (GMT -7)   

   :-)   Dear Julie,

 

As we have both shared with others…..

It’s time to  ~ Stop ~ and

             Take that deep breathlet it out and take another one!!!…      

 

Okay ~   Now make the phone call… get some answers…  as we all know you would be doing once you settled yourself down ~ with a little help from “friends”…

 

There is no doubt in our minds that the comfort you receive here is extremely important!!!  And that’s what ~ HealingWell ~  is….  All of Us  reaching out to help each other. 

You did right by reaching out to all of us so quickly!!!   yeah  

 

All of Our support (holding on to each other when we step on a slippery stone), 

All of Our compassion (sharing calm, kindness, and reassurance),

No matter what manner our support and compassion is given in ~ it is essential to  HealingWell. 

 

Heartfelt ~ thoughts and prayers coming at you full force dear Julie….

Keeping you and your husband  “extra” close ~ during this time..  Stay Close!!!

In Friendship ~ Lee & Buddy


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 7/6/2007 5:43 AM (GMT -7)   

Thanks for your replies. 

I know fluctuations are normal, I guess I was just hoping it wouldn't happen to us since the score was dropping ... Unfortunately this is as far as I can go - because of the privacy act restrictions up here I cannot speak directly with the doctor so I have to let me husband handle it from here - I guess I was just hoping for some information to see if anyone else had experienced same - I know you're not the "medical experts" but I value the input of your experiences.

My husband has a follow up with his Urologist next month and his Oncologist in December so I've given him both numbers.  His last physical exam was good according to his Oncologist.

 

 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/6/2007 8:30 AM (GMT -7)   
Julie,

Is it possible the DH will give permission to his Physician so that either of you may speak to him/her?
The HIPAA laws regulate who gets info regarding paitient transport and care. The laws do not regulate a patient giving express permission to a representative, such as a spouse for example.

I do hope this bounce is what they refer to when talking about "PSA Bounce." If the Doc said all is good for now, and hubby is okay with that, about all anyone can do is let him have these few weeks. Thankfully he sees the Doc again in a month. You will be there to ask questions then. Best of all good wishes.

Swim
 


bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 7/8/2007 8:08 AM (GMT -7)   

Dear Julie & Loved One,

 

Our thoughts and prayers have continued to (surround you).  I hope you feel our loving arms…   We have kept you extra close as we continue to learn about brachytherapy.  The last 2 days I have read and re-read several areas in Dr. Scardion’s book.  Each time I read it I feel a gentle calm come over me.  Realizing that there are things that must be monitored and things that do fluctuate… over a certain period of time.

 

I’ve decided to go ahead and send the information that I’ve been reading….  I’m sure you’ve read more than any of us on brachytherapy… but feel a need to share this.  It will help others in the future…. As they search for answers and I hope in my heart that you find some comfort in it.

 

The not knowing is the hardest!!! And your journey has you on a path that necessitates having to wait.  This is where we come in with support and calm…

Reaching out ~ was a precious gift you’ve given to all of us.  Thank you!!

 

Now let us give you back the gift of friendship ~ in the manner that each of us give in our own “special” ways….   

 

Give that man of yours a hug and tell him you’re hurting…. This is an Us/We journey and you need answers.  Follow up with getting whatever it is that you need to have some input into this matter.  Since it is you who will be each other’s caregiver as we grow into the golden years together…

 

I pulled a site with  Instructions for Obtaining Consent to Release Medical Information  http://www.spcbtx.org/forms/Consumer/medrelease.pdf

If you are not in the US ~ at least it can give you some guidance as to what the wording would be… 

 

I truly hope your husband fully understands the “trauma” you are feeling.  All you are asking for are answers that he too should want to hear….sooner rather than later...

 

Please know that I’m not trying to overstep any personal boundaries…. But I’ve continued to think about this as if it were me and my Buddy dealing with this situation.  So ~ please accept this in good faith as it is meant to be…

 

Keeping you extra-extra close as you move forward….

In Friendship ~ Lee & Buddy

 

Excerpts will be placed in the next posting below this one!!!


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/8/2007 8:13 AM (GMT -7)   

Please read the posting above as this is a continuation of that posting....

Excerpt from Chapter 20:  Rising PSA after Surgery or Radiation Therapy

“Dr. Peter Scardino's Prostate Book” 2006

Peter T. Scardino, M.D.

Chairman of the Department of Urology ant Memorial Sloan-Kettering Cancer Center

and Judith Kelman

 

 

PSA After Radiation  page 394-395

 

After brachytherapy or external beam radiation, it’s difficult to determine the cause of a rising PSA.  The prostate is not removed as it is with surgery.  Any PSA we detect may be coming from benign overgrowth or inflammation of normal prostate tissue, not necessarily from cancer.

 

As radiation kills cancer cells, the PSA slowly declines until it reaches its lowest level, which we refer to as the PS nadir.  During the course of radiation, the PSA may actually rise at first and not begin to fall until six months after the treatment course is finished.  The average time it take to reach PSA nadir is eighteen months, but it can take as long as three years.  Ideally, we want that lowest number to be 0.5 or less.  The PSA rarely becomes undetectable as it does after radical prostatectomy.  The nadir is predictive of how you’re likely to fare.  The lower the PSA goes, the smaller the chance that your cancer will recur.

 

The American Society for Therapeutic Radiology and Oncology (ASTRO) defines radiation failure as a PSA that rises 2 ng per milliliter above the PSA nadir. 1

 

Using this definition, it’s possible to ignore a tumor recurrence for a very long time and miss a second chance for a cure.  Ideally, the PSA should fall to a low and stay there.  If it begins to rise from the lowest point, is higher than 1, and reaches three new peaks or highs, even if they’re not consecutive, I’d advise you to meet with your radiation oncologist and urologist to consider the next steps.

 

The purpose of the three-peak rule is to make sure the PSA increase is genuine.  But if your level begins to rise above the nadir, I believe it’s prudent to wait three months—not six—to repeat the test with an eye to further assessment and possible treatment if you see three new peaks.

1        http://www.asco.org/portal/site/ASCO/menuitem.a3fb42726842a82627c4c291ee37a01d/?vgnextoid=d70b3608f9958010VgnVCM100000f2730ad1RCRD&index=n&pmid=15711272

 

 

 

NOTE:  Page 396

PSA can fluctuate for no reason from day to ay by as much a 36 percent for men who still have the gland in place after radiation therapy, so you’re bound to see some meaningless ups and downs. After surgery, the PSA should become undetectable and remain so.

 

 

 

PSA BOUNCE   Page 404-405

Though the reason remains unclear, in 30 to 40 percent of brachytherapy patients and 5 to 15 percent of men who have received external beam therapy (without hormones), the PSA level goes up for a while and then falls again without any additional treatment.  This PSA bounce tends to occur within the first three years.  The level can rise long and steadily enough to meet the ASTRO definition of a radiation failure (see page 395).  If this happens within the first two years, we have to consider that the PSA elevations we see might represent an innocent bounce that will spontaneously return to low levers.  Of course, an early rise may continue, indicating recurrent cancer.  The uncertainty of PSA levels after radiation can lead to a crucial delay in starting further, curative treatment.  Normally, a bounce doesn’t go very high and the slope is gradual, but the phenomenon confounds our ability to diagnose a recurrence soon after radiation. 13

 

If the PSA begins to rise two to two and a half years after radiation therapy, a biopsy may be in order.  If the results are negative, indicating no cancer, we would continue to follow the PSA and plot its doubling time.  Since with radiation the prostate and surrounding tissues were not removed and examined (as they are after surgery), we have no way of knowing whether the cancer had already spread to the seminal vesicles or lymph nodes when you were first diagnosed.  All we have to go on after radiation are your original PSA, the clinical stage and grade of your cancer at the time of biopsy, how low your PSA went after radiation (PSA nadir), the amount of time that elapsed after radiation before your PSA began to rise, and your PSA doubling time.  A high-risk cancer with an initial Gleason grade of 8 to 10, a PSA over 10, and an extensive tumor points to a higher risk of distant spread, as would a nadir higher than 1, a rise that begins less than two years after treatment, and a doubling time of less than six months. 14

 

13    http://www.medscape.com/medline/abstract/12394695

14    http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=retrieve&db=pubmed&list_uids=14767286&dopt=Abstract

 

 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/21/2007 7:59 PM (GMT -7)   

Julie

     We are “ Thinking of You

and wanted you to know…. 

 

Stay close … we are all here for you!!!!

Special thoughts and prayers are coming your way.

In Friendship ~ Lee & Buddy


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 7/23/2007 1:25 PM (GMT -7)   

Bluebird et al.

Thank you so much for thinking of me (us) and for your previous post - very informative and it helped me to settle just a little.  My husband will likely speak with his urologist next month and hopefully everything will be back on track.

I appreciate your well wishes and will continue to post to this and other posts if I can contribute any useful wishes and/or information.

Thanks again,

JustJulie


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 7/23/2007 4:11 PM (GMT -7)   

Julie:

So glad to see you posting again - had been wondering how you were doing.  My brother had seeds implanted on June 23 - he is not computer savvy, so I put together alot of info for him.  I copied your JustJulie thread and he received much info and comfort from it.  We need your posts, so don't be a stranger.

Thinking of you.    Dutch-ESS


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 7/24/2007 12:41 AM (GMT -7)   
Hello Julie,

Hang in there. These PSA tests are a worry because you have so little basis to gage their significance. I'm sure that after a few more the numbers will show a downward trend. We all pray that this slow healing process will finally achive success for both of you.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 7/24/2007 5:29 AM (GMT -7)   

Thanks everyone.  I knew there would be bumps in the road but we were on such a nice downward slide that I guess I was hoping it would continue the decline.  I now know of the PSA bounces and the fact that this process is in fact a long one and could take up to 3 years to yield the zero results we're hoping for.  I guess good things are worth waiting for in the meantime we'll take steps to continue with an upward attitude.

Hope all of you are doing well.

 

JustJulie

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