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No formal diagnosis but I dont know where to turn.

airborn1
Posts: 14
Joined: Jan 2019

Im concerned about my latest PSA test; total PSA 6.05 and free PSA 8%.

This is the first time my primary doctor ordered a free PSA.

1) 2016 PSA was 4.70 age 50

2) 2016 a weeklater it dropped below th lab cutoff of 4, and was 3.85 age 51

3) 2017 PSA 2.95 age 52

4) 2018 February PSA 3.86 age 52

5) 2019 January PSA 6.05 w/ free 8%  age 53

 The doctors explained that since it was under 4, they werent concerned about this.

Everything I have read point to doom and gloom, my anxiety level is soaring, Im a single dad raising a 16 year old gal, she is so precious to me,

Everythning I see her shows cancer spreading in the PSA 3.0 range.

I had another PSA test in June Im trying to get the record, the urologist moved and now works for the healthplan I have, i believe it was 3.5'

So in essence, my PSA jumped from approx 3.5 to 6 in six months.

Everything Ive read states that a jum of 2ng is always fatal, and an 8% free PSA reading is associated with a 63% definitive prostate cancer diagnosos according to the lab associated with the most recent draw.

 

Am I premature? Or do I need to start getting my stuff in order and see id I can get to MDA?

thank you foryour understanding

PAtrick

Old Salt
Posts: 752
Joined: Aug 2014

your findings need follow-up, but it's way premature to conclude anything. 

1. For instance, prostatitis (inflammation of the prostate) can cause PSA swings such as the ones you described. 

2. There is no precise level of PSA that defines cancer because some prostate cancers put out very little PSA

3. The aggresiveness of prostate cancer can be derived from the Gleason score of a positive biopsy, not from the absolute level of PSA, especially when it is under ten.

Did your doctor or urologist do a digital prostate exam? That is definitely warranted.

One can follow up with a prostate MRI, but the only real test for prostate cancer is a biopsy. Be aware though that a negative outcome does not rule out cancer because the biopsy needle may have missed cancerous loci.

More in general, it's time to get educated about prostate cancer. 

airborn1
Posts: 14
Joined: Jan 2019

Hi Old Salt,

the urologist did a DRE in 2016 or 17. but not recently. Im trying to get educated, but the internet is bringing me down,

thank you

Georges Calvez
Posts: 172
Joined: Sep 2018

Hi Patrick,

Welcome to the board.
We are not doctors but we are experienced at living with or surviving prostate cancer, we have friends that have or have survived prostate cancer, etc.
Looking at your numbers, you may not have prostate cancer, you may have BPH or prostatitis.
First thing up; go for a DRE, this may not find anything at your level of PSA but it is worth a go.
Try a urine test for bacteria, if they are found then you can try antibiotics.
Next up is an MRI and/ or an ultrasound to try and spot any lesions.
After that you are looking at a biopsy, either general or guided.
If you have cancer it is more than 95% likely that you have caught it early and you will be completely cured.
You are very unlikely to die of prostate cancer.
We are all here for you, we even joke around a bit as it helps relieve the tension.

Happy New Year,

Georges

airborn1
Posts: 14
Joined: Jan 2019

Georges thanks for your insight. I'll keep you posted. 

Patrick 

MaryONeal28's picture
MaryONeal28
Posts: 4
Joined: Apr 2015

Hey Patrick,

Take a deep breath, exhale and becareful what you read.  My husband was disgnosed in 2004 with a Psa of 14.  I too read everything that I could on PSA what the numbers meant......and all the horror stories, that ANYONE had ever put on any page that said anything about PC.  I found out more on here with men that knew what they were talking about, they assisted me in what questions to ask the doctor, what i need to look for, hope and FAITH! I haven't read all the comments that were on here, so i may be repeating alot of them, sorry!  You are being premature and I totally get it.  My husband didn't want to read, talk or see anything about it.....but I felt it was my obligation to read EVERTHING!  Big mistake, I was on the verge of a breakdown!  So I just wanted to give you some sound advice, take it all one day at a time.  Gary had his surgery in 2004 and we are fighting his PSA again, but this time I won't let this ruin the thoughts of any future we have together!  I hate this disease, I hate it with a passion!!  But heads up my friend.  Find a good mentor on here an look for a good doctor!  We did all of our stuff at St Louis, Mo at Barnes and our doctor was out of Siteman Cancer Center.  The internet isn't always good, but you found a great place here to get support!

Blessing

Mary

airborn1
Posts: 14
Joined: Jan 2019

Thanks for sharing Mary. I'm pulling for Gary and you!

Patrick 

airborn1
Posts: 14
Joined: Jan 2019

Thanks Old Salt, Georges and Mary!

Im so grateful, thank you guys.

Im in Albuquerque, and I have Presbyterian Health plan but Im not too comfortable with their plan, Im sorta stuck with them but they do have some kind of articulation agreement with MDAndersen, I think it their training. But I callled MDA today and got set up in their system and gave them all my numbers and filled out a records authorization. Im letting my anxiety get the best of me and this is usually the case. The other thing I forgot to mention is I have low T, all the doctors are aware, I was on TRT back in June dor 7 weeks, and they took me off because my PSA was rising and hematocrit was high after only 7 weeks, I have heard that folks with low t have a skewed PSA, with it actually being higher than whats reported, I read that too on the net in a cople of studies. This would mean my PSA is actually higher, but who really knows, I know if i told these Drs here they would probably not know, hence the reason I reached out to MDA.

thanks again, I appreciate your guidance, Im just waiting to see what the primary says about the plan with the recent test,

Patrick

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3116
Joined: May 2012

Patrick,

I agree with most of what the other guys (and one wife) have written so far, with some slight variation. 

1. While a DRE is useful, as is an MRI, the only definitive test is a biopsy.  A DRE lets an experienced doctor assess the size of your gland (in grams), and also allows him to detect any tumors in the lower-rear, but will not detect anything in the upper-front region, so it is ineffective in 50% or more cases.  Many, many men with PCa have negative DREs; mine was always negative, despite Stage II disease.  But, a DRE is almost free, and only takes a minute to perform.  There is absolutley no reason to not get one soon.

2. A biopsy, relatively speaking, is also low in cost, at least in the world of medical screening and imaging. It is a quick, outpatient proceedure, with few side effects for the overwhelming majority of men.  There is no reason to accumulate other, expensive imaging results to "justify" a biopsy; suspicious PSA patterns are more than sufficient. Very rarely, but occasionally, men will get a post-biopsy infection, but the percentage for this is tiny, and usually easily treated. Most urologists give pre-proceedure antibiotics anyway, to lessen the possibility of this. A biopsy will yield more actionable information than an MRI. 

3. "The Internet."  You express concern over reading online. GOOD ! You should !  Ninety percent of online "health information" is garbage and medically wrong.   The ONLY sites you should read are Medical Center sites:  places like Sloan-Kettering, MD Anderson, The Cleveland Clinic, The Mayo Clinic, Johns Hopkins Hospital, Emory University, and your own local hospital's, for that matter.    Yet even at theses sites, the information will be part very generic information, part bragging rights.  Almost every cancer center of any size in the US states on the web page that they are "rated among the very best in the Nation", and list various accrediations that they hold.  The other useful source of good information online are professional medical Journals.  This info is often highly technical, but cutting edge.

What should be avoided at all cost are, generally, anyplace discussing "naturlistic" or "holistic" healing centers, clinics, or nutrient scams, and most of all, "reefer cure" pages.  These are the modern-day versions of snake oil, magic elixer shows in the mid-1800s.  

Simple cases of early-detected PCa are common, and can be professionally treated at virtually all cancer centers of any size and accrediation. There is almost never a reason to globe-trott or travel the nation to seek out "the best center in the world."  For a straightforward case of disease, what they do will be identical to what is performed at a good regional hospital; no more, no less.  Plus, regional centers tend to be less of a cattle-call in dealing with patients. The care closer to home is almost always more personable.  And of course a regional center will cost much less, and have fewer insurance hassels.   

A place like MD Anderson is to be recommended in some cases, like late stage, highly aggressive disease, or complex cases of relapse.  Like every guy here, I will stress that I am a LAYMAN, with no medical training.

A fairly common reaction among guys not officially diagnosed is for them to never have enough information, and to agonize endlessly over this-or-that result, this-or-that test.  There is one, and only one, quick, easy, and relatively inexpensive way to get to the truth: a biopsy.  Why guess and speculate, when you can know what's going on today ?  Wating a few months for another PSA is fine, but if it is still trending upward, I would get the boipsy scheduled then.

max

 

airborn1
Posts: 14
Joined: Jan 2019

I appreciate your insight. Im meeting with the urologist tomorrow. I understand about not having enough- its driving me nuts, my anxiety is through the roof. My daughter who is 16, keeps telling me to remain calm, go figure, no matter what I do I cant control my anxiety, hence the reason I reached for MD Anderson. How does a teen know whats best and how to keep things in perspective..?

I m worried these guys here are going to botch something up, I had a 4 PSA for 4 years, and the same response from 2 different urologists: "Im not at all worried about that PSA"?

They are pretty incompetent and have me spooked.

Secondly the free PSA part is scaring me also since there is a benign and cancerous proponent. And its Harvard Medical speaking about the probability...

Patrick

Old Salt
Posts: 752
Joined: Aug 2014

to reach out to MDA. In the meantime, try to relax. Prostate cancer typically is slow growing and there's a reasonable chance that you don't have the disease. Let's hope for the best!

 

 

airborn1
Posts: 14
Joined: Jan 2019

Indeed, Good Advice! Im trying!

thank you

Patrick

Clevelandguy
Posts: 384
Joined: Jun 2015

Hi Airborn,

If it were me I would request an MRI and see if your doctor agrees. The MRI will detect any suspicious areas, it could be as said above it's just BPH but the MRI should give you a clearer picture.  Just my 2c worth.....................

Dave 3+4

airborn1
Posts: 14
Joined: Jan 2019

Yes I am leaninig in this direction, i hope I find consensus.

Patrick

Georges Calvez
Posts: 172
Joined: Sep 2018

Hi there,

I agree with Max that you should have a biopsy as soon as possible with one caveat.
If you can have a DRE, usually free with your first visit to the urologist, ultrasound or an MRI before the biopsy to find an area of interest then you may avoid the dreaded negative biopsy but still have cancer so another biopsy beckons.

Best wishes,

Georges

airborn1
Posts: 14
Joined: Jan 2019

Yes this is what I have been researching Georges, on a couple of studies, resercher and specialist have said: "if your urologist says we need a biopsy first then its time to find another urologist".

Do you mind if I rely on you for support? As a mentor so to speak, if your plate is full I get it,

thank you

Patrick

Georges Calvez
Posts: 172
Joined: Sep 2018

Hi Patrick,

No problem, I am likely to be here for a long time, I hope.
The other guys will all chip in as well, I reckon we have man centuries of experience of prostate cancer, being treated for prostate cancer, etc, between us.
Hell, we might have a decade or two of experience of catheters! :-)

Best wishes,

Georges

SantaZia
Posts: 69
Joined: Apr 2018

Patrick, you don't have to worry about your rising PSA you just have to get more information.  They have a T3 MRI at UNM which should be covered by your insurance. Since Presbyterian has been trained at MD Anderson you don't really need to go to Houston for your diaganostic workup. Of course if your UR can not feel anything with a DRE that is a good thing, but it doesn't mean you won't need more data. To ease my mind I would also want to have a bioposy. Having the MRI first allows the UR to find the right place to target, especially if you have a large prostate. Of course at this point you don't need treatment and you don't have PC. If you do have it a great surgeron is Dr Satyan Shah. Also a great radiation oncologist at UNM is Thomas Schroeder. He also commuicates on email with patients and is involved in a lot of reseach and clinical trials.  I also used MD Anderson's proton center with my diagnoistics however I ended up having RT in Santa Fe based on Thomas recommendation from UNM.  So you don't have PC yet and hopefully you won't but if you do this is a good place to find information. I must admit worrying is something I do to, but as Mark Twain said, "I am an old man and have known a great many troubles, but most of them never happened. Worrying is like paying a debt you don't owe. I have spent most of my life worrying about things that have never happened. Drag your thoughts away from your troubles... by the ears, by the heels, or any other way you can manage it."

Tech70
Posts: 47
Joined: Nov 2017

I have had two positive biopsys, 2 cores less than 10% each, Gleason 6 while a 3T MRI showed no visible lesions.  I would suggest doing an MRI before the initial biopsy may be premature.

airborn1
Posts: 14
Joined: Jan 2019

Yes this is the direction I am hoping for with a Tesla 3 MRI.

Patrick

airborn1
Posts: 14
Joined: Jan 2019

You hit the nail on the head for me. I was looking for the Tesla 3 parametric MRI, but when I did a search, UNM didnt come up, but it makes sense. Im speaking with my urologist tomorrow but he is with Presbyterian which is like hitting a brick wall. Very difficult to nail down and obstruction at every junction.

Great point about the T3, much appreciated.

I need a referral first but lets see what the Dr says. His name is Stephan Gutow.

thanks SantaZia

airborn1
Posts: 14
Joined: Jan 2019

You hit the nail on the head for me. I was looking for the Tesla 3 parametric MRI, but when I did a search, UNM didnt come up, but it makes sense. Im speaking with my urologist tomorrow but he is with Presbyterian which is like hitting a brick wall. Very difficult to nail down and obstruction at every junction.

Great point about the T3, much appreciated.

I need a referral first but lets see what the Dr says. His name is Stephan Gutow.

thanks SantaZia

 

SantaZia
Posts: 69
Joined: Apr 2018

Airporn you aren't limited to what Presbytian has to offer and they may not have a particilar diagnoistic or protocal for treatment that you might need or want.  I  receommend consulting with both Dr. Shah UR and Dr Schroeder RT at UNM after you T3 MRI and biopsy. They may also recommend gentic test off the biopsy.  These visits may be covered by your plan since it is a second op.  Also UNM Cancer will look at your pathology report. You will need a referral to UNM hospital for the T3 MRI. If you do need a biopsy John Hopkins will review the results for $250. Hopefully you won't need any of this so take your time.  Just wanted to provide you the information. 

airborn1
Posts: 14
Joined: Jan 2019

I just sent a message to my PCP requesting a referral to UNM. Does he need to do a secondary referral for the MRI? My insurance doesnt approve MRIs, or the doctors dont know how to do the notes correctly. I assume I would get the standard referral from my pcp and not the urologist. Pres uses RAA imaging i think,

Who could put in the referral for a T3 MRI?

Georges Calvez
Posts: 172
Joined: Sep 2018

First we had Grinder, now we have Airporn!
I have changing my moniker in anticipation of developing moobies in my last nine months on Firmagon.

Yours in anticipation,

Toby Juggs

Old Salt
Posts: 752
Joined: Aug 2014

A 3T MRI is expensive and some insurance plans don't allow it prior to a biopsy. 

I am not arguing that a prostate MRI might be useful, just pointing out that not getting one isn't the end of the world. And, as has been stated, a negative MRI doesn't prove that there is no cancer in the prostate (see Tech70's post). Also note that the results of a prostate MRI are expressed in probabilities; the PIRAD score. 

SantaZia
Posts: 69
Joined: Apr 2018

Airborn I agree with Old Salt if you can't get an MRI now because it isn't covered don't worry about it. Here is an article on the MRI coverage problems https://www.radiologybusiness.com/topics/healthcare-economics/prostate-mri-coverage-poses-problems-patients-providers I would still follow up with your visits at UNM these second opinions should be covered by your insurance. You don't want a bunch of out of pocket expenses.  So I would expect if you PSA continues to rise that a biospy would be the next step. However see what your UR and the UNM folks think. Best wishes. 

airborn1
Posts: 14
Joined: Jan 2019

I met with Pres UR yesterday, He did a DRE and said he didnt feel anything out of the ordinary but he didnt say it was normal, but he said by the time he can feel anything its ususally more advanced. He said PSA and Free PSA retest in 3 weeks, then meet with him again, MRI I suspect. He said RAA has a T3 MRI.

We'll see, more waiting to come.

 

Patrick

Georges Calvez
Posts: 172
Joined: Sep 2018

Hi there,

I agree with everybody that not getting an MRI is not the end of the world and there may be problems getting one in some places.
It is possible to do a biopsy without an MRI first but I would argue if it is available then it can be an aid in avoiding the dreaded false negative in which the needles miss the area of interest and another biopsy is needed.
C'est tout

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 133
Joined: Feb 2018

There are many medical approaches to this cancer.  I do not know of a one approach that fits all.  I do know what I did.  So, I will tell you.  PSA 4.72; GP sent me to an urologist.  Urologist did a DRE and a urine flow test.  Urologist recommended a biopsy.  I requested 3T MRI.  Fusion biopsy performed.  Prostate cancer confirmed.  Surgeon recommended removal; raidology onocologist concurred with surgeon. Prostate removed 3/20/2018.  My decision based on the facts presented to me.  If you have surgery, you need to know, some of the potential side effects (incontinence; ED; shortening of the urethra).  At this time, I am fully continent.  I do still have some ED issues, but I am able to have sex with add-ons (Viagra/Cialis).  More importantly, my PSA is undetectable.  At this time I am a NED (no evidence of disease).  I am 68.  My surgical procedure and post biopsy of tissue is on this site.  I had a robot assisted surgery.   You are still who you are and have always been.  So do your due diligence.  Hopefully, you are worrying about nothing.  Good luck on your journey.

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