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Once again....

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

I have not been to this prostate discussion since Februrary. A PSA last week showed an increase from 3.7 (in February) to a current 4.6, or nearly a point in under a year.  I have never been diagnosed with prostate cancer, but as my screen name indicates, I had a run with lymphoma a few years ago, but thankfully have been "clean" of that for five years now.

I saw a urologist today. She did a digital exam, which she said felt normal, and a urinalysis, which was normal also.  I have been having pain in the lower groin for a few years, but past CTs confirm that I have had a markedly enlarged prostate since at least 2009 .  I went on Flowmax in February, and it has helped tremendously for the BEP. 

She has scheduled me for a "transrectal ultrasound" and biopsy in a few weeks. Apparantly she has substantial experience with prostate issues, and her bio states that one of her specializations is BEP.   She stated to me that my case history and work-up thus far does not scream "Cancer!", but stated that a biopsy is now clinically necessary. I am very proactive as regards dealing with disease, and agree regarding the biopsy -- I had actually planned to ask for one, unless she had a compelling argument against.

A perfect result would be for the ultra to look normal, and no cancer found on the biopsy. At the least I am praying for nothing worse than Stage 1 if it comes back positive at all.  I feel I most likely have a problem, although I have read that the very enlarged prostate could possibly account for my symptoms and results.

Any and all feedback from newbies or seasoned vets is appreciated. Some may remember me following  the course of my friend Gary here, until he passed in June of last year. His PSA was over 900 at one point, and I learned about all of the new pallative drugs for late stage 4, which he used.

Thanks in advance for any replies. I will definitely share what the tests show, but it will be mid-October befoe I get that information.

max

 

hopeful and opt...
Posts: 2237
Joined: Apr 2009

Max, if possible look into getting a directed biopsy using a 3T multiparametric MRI for guidance. This is cutting edge. It is done in one of two ways, 1) MRI looks for suspicious lessions; the MRI results are fused to a 3 dimensional biopsy machine that is able to  target any suspicious lessions,  if any.  Cores are taken., This procedure has the  abi;ity to go back to the exact same spot in a futre biopsy.

 

2) cores are taken with a Multiparametric MRI, able to use the MRI machine to back in real time to target cores.

 

These tests are superior to the 99 1/2 percent of the two dimensional ultrasound biopsy machines found in most urologist offices.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Hopeful,

I do not know what imaging they use, but will ask, and ask about if the 3T device is available.

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Regardless of the type of biopsy that is done, nothing can really be suggested until we get the pathology report.

Since you've dealt w/cancer before, a PCa diagnosis should not come as such a great shock to you.  My only cautionary note at this point would be to note that, when a PCa diagnosis is determined, many (if not most) urologists are VERY quick -- much TOO quick -- to recommend surgical removal.

I have no problem in saying that for most PCa patients surgical removal of the prostate is absolutely NOT the best choice.  It is an archaic procedure which presents all of the normal risks of surgery (infection & negligence being the greatest) and also present the greatest risk of ED and incontience following treatment for a minimum of 6 months to a year and (in the worst cases) permanently. 

There may be cases in which surgery is the best option (but I really can't think of any) and, given the current technology, radiation (especially CyberKnife SBRT) is a far suprior procedure.  All you have to do is troll the threads of this and other PCa forums and you'll find countless reports of FAILED surgeries that required follow up radiation (usualy IMRT) treatments. 

The first question that I asked myself when I was diagnosed w/PCa was, why should I subject myself to risks of surgery when I might have to have radiation treatment later AND my answer was there wasn't any good reason to do so.   That's why I chose radiation (specifically CyberKnife) and I am now cancer free w/o any side effects and have no regrets in making that decision.

It's undisputed that radiation techniques are now as good as surgery in terms of surviability for PCa and far surpass surgery in terms of minimizing side effects.  So, my word of warning to you is NOT to let your urologist bully you into a surgical solution until you have time to decide for yourself what treatment is best for you.

Upon hearing the PCa diagnosis, too many men just want the cancer gone and naively thing that surgery is the best option.  Surgery MAY be appropriate for your situation but you should do the research to learn about ALL of the available treatment options and then decide which method you want to choose.

Good luck! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Swingshiftworker,

I appreciate this informed feedback. I have already starrted studying prostate treatment issues.  Unlinke lymphoma, prostate has many very different treatment approaches (lymphoma has essentially only one: chemo; surgery is virtually never of any value in lymphoma, and radiation is seldom used either, except in very early stage).

The doc already said I was "getting way ahead" with questions, but what I have read about IMRT so far, I like. 

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Swingshiftworker,

I checked their web site, and my hospital (which is a teaching facility for a med school also) does IMRT in their radiation department. Is this a new technique, or in common use in most places now ?  The site did not mention IGRT, so I don't know if they have that or not.

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

IMRT is one of the most commonly available radiation technologies and it is often used for follow-up treatment following failed PCa surgery.  IMRT can used as a 1st option for PCa treatment but it is not the most precise method of delivery currently available (lack of precision can lead to some side effects) and requires 4-8 weeks of daily treatments (20-40) in order to complete the treatment program.  However, many men have been treated w/IMRT successfully.

Apart from IMRT, you should also look into low vs high dose brachytherapy (BT), proton beam therapy and CyberKnife (a form of SBRT - sterotactic body radiation therapy) as other alternatives.

CyberKnife is currently the most precise and advanced in terms of radiation delivery (which results in the lowest risk of side effects) and only requires 4-5 treatments over a week.  BT involves the temporary  HDR (high dose rate) and permanent LDR (low dose rate) placement of radioactive seeds in the prostate but problems can result for improper mapping, placement and/or movement of the seeds.  There are also PBR (pulse dose rate) and IG (image guided) BT which are attempts to "improve" the basic BT procedure but they require specialised equipment that is not generally available.  In initial studies, CK was most often compared w/HDR BT in terms of results and efficacy, becase they both involve the treatment of PCa with very high, temporary radation dosages within the entire protate capsule. 

Proton beam therapy (PBT) uses protons (rather than x-rays) to treat PCa but requires the use of a linear accelerator (ie., cyclotron) in order to generate the protons, which substantially limits the availiable treatment sites and greatly increases the cost of treatment.  Like IMRT, PBT involves a 4-8 week (20-40/day) course of treatment but also requires the patient to be fitted in a body cast to prevent movement and the insertion of a water ballon in the rectum to prevent damage to it during each treatment.  So, while apparently effective, it is also the least comfortable and convenient treatment of those mentioned.

IGRT involves the reimaging of the prostate w/ultrasound (or other methods) before each treatment is given.  3D CRT (conformal radiation therapy) maps the prostate in 3 dimensions prior to treatment but at only one point in time before treatment.  CK involves the imaging of the prostate during treatment (like IGRT) and 3D mapping of the prostate (like 3D CRT) but it does both of these things in REAL TIME during treatment.  So, it is a significant advancement beyond these and the other external beam radiation technologies (EBRT).

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Swingshiftworker,

You seem to have studied the RT initial response to PCa especially well. The following question is therefore submitted to you, but ANYONE with information is asked to submit their thoughts.

Are you familiar with NORVALIS IMRT treatments ?  I think it is mostly a bunch of bragging about proprietary equipment, which does not readily appeal to me, but it is (as best I can tell) a high-quality IMRT; a highly-contoured RT delivery device.  I just learned that my local center has it, and admit to not having researched it much yet.

Again, anyone who has gotten feedback regarding it from their oncologist is asked to share what they have heard, good or bad.

max

Old Salt
Posts: 720
Joined: Aug 2014

The Novalis instrument is from Varian. This company has been in the radiation/cancer oncology business for quite some time and equipment such as the Novalis system needs FDA approval (sigh of relief).

Looks nice to me (but pay no attention to my personal opinion): http://www.novalis-radiosurgery.com/clinical/prostate-radiotherapy/

A Radiation Oncologist should be able to give you a much better answer; mine is not based on even a superficial survey of the field. Cry!

 

PS; Here is a link to a (2008) comparison between CyberKnife and the Novalis (could be outdated!)

http://www.kumed.com/~/media/Imported/kumed/documents/novalistx_comparison.ashx

(much of this is beyond my pay grade!)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Old Salt,  I read your provided links. Thank you.  It seems Novalis may be an improvement in RT, but it is hard to decide what is a sales pitch verses independent evaluations. Everybody is wanting to sell their wares, whether it be surgeons, rad oncologists or medical centers.   Some impressive treatment centers have bought Novalis, but who knows what else they have, or how many of their doctors like it. According to the articles MD Anderson, UCLA, Duke and Vanderbilt all have them. Another complication is that there systems 'are used against tumors all over, and a machine useful against brain tumors might work less well on the prostate.   I know I am getting way ahead, but don't want to be totally uninformed when I get the biopsy done in a  few weeks.   I do not have the funds to globetrot for the best treatment on earth, and will need to know how to ask for the best treatment options at my local hospital group, which is also a teaching hospital, fortunately.  I suspect that since they have Novalis they will  try to sell me on it if I decide on RT.

Again, anyone who has used Novalis is asked to share their  experience.  

Max

 

 

 

 

 

hopeful and opt...
Posts: 2237
Joined: Apr 2009

Cyberknife versus Novalis.....aside from the machine that delivers there are various amount of Gys delivered, 4 days and 5 days of delivery, etc, etc....from discussions that I had , it's really Ford verus Chevy.

 
Back in July of 2012,  I looked into the differences of the two machines, at the cyberknife board, here are the answers at that time from some of their posters
 
 
I also poster the same question here at this board
 
 
.............................................................................................
 

 
 
Old Salt listed a multi institutional study about SBRT that combines results of treatments by the Cyperknife and the Novalis machines , 

Health-related quality of life after stereotactic body radiation therapy for localized prostate cancer: results from a multi-institutional consortium of prospective trials.

 
Here is the thread,
 
 
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Swingshiftworker,

I called my cancer center today and asked if a radation oncologist I met years ago does IGRT, and he does. He is one of the guys on the staff who has been around some time, and I had already learned that the new radation oncologists use IGRT, so it is common at their facilities.

You discuss several of the advantages of radiation over surgery. I read that a very large prostate is a better candidate for surgery than radiation, since it presents more space for "cold spots." Have you heard of this or do you have any thoughts ? Is this though outdated due to newer equipment ?  As you might have read below, the biopsy equipment calculated my prostate weight at 55 grams, or very large indeed.  I am a relatively small guy, 5'5", around 165. I have never been very overweight (I weigh more now that ever in the past).

max

Beau2
Posts: 261
Joined: Sep 2010

You are correct, a large prostate could account for all of the increase in your PSA. 

Before you do a biopsy you may want to talk to your doctor about a few non-invasive tests that might help you understand your condition; 1.) Percent Free PSA, and 2.) Urine PC3 Test.

Best wishes as you move forward.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

The urologist mentioned a blood tests that differentiated "bound protein verses unbound" for prostate cancer diagnosis. Is this the same thing as the Percent Free PSA test you mention ?

Living and learning,

max

Beau2
Posts: 261
Joined: Sep 2010

Yes, I believe we are talking about the same thing. Here is a link to a web page covering Free PSA;

http://www.medicinenet.com/prostate_specific_antigen/page4.htm

Glad to see that your doctor has already discussed this with you. Good luck!

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Max

This time the increase in PSA is very significant and you have chosen right in getting a biopsy. Recent 3T machines and non invasive techniques may diagnose PCa if the tumour is big, but if diagnosed positive you would want to know the aggressivity of the cells (Gleason rate) and that only the biopsy can provide.

I know you are already an experienced patient and caregiver of a PCa survivor. You are one step ahead of others and now you need to know more about the disease. Doing some researches about diagnosis and treatments will help you in understanding better the results of October. Enlarged glands may restrict treatment choices.

Your spirits are high and you worry in having a case similar to Gary but you have not been declared a PCa patient yet and I hope the tests come out negative. In any case, you can be acquainted with the latest developments in PCa, its analysis, therapies, risks and side effects.
Your comment in your previous thread;

"What are we waiting for ? For me to get too far gone to treat ?"

http://csn.cancer.org/node/267024

Best wishes and peace of mind.

VG

Old Salt
Posts: 720
Joined: Aug 2014

I don't agree that the increase in PSA from 3.7 to 4.6 is necessarily 'very significant'. Could be significant, but PSA tests depend on a lot of variables. Bike riding, recent sex, different labs, etc. PSA bounces without clinical significance also occur.

Nevertheless, getting a biopsy is the right approach to take and I hope that the results will be favorable.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

As mentioned, I am having a biopsy in mid-October. I began asking a few questions regarding treatments to my urologist and she (rightly) said I was getting too far ahead. I tend to be a "fast study," but am amazed as how much complex detail so many of you have learned in the course of your treatments.  As I also mentioned to Vasco, lymphoma is NOTHING like any organ cancer -- a whole new world.  It is as if everything I learned over five years is useless in the context of prostate cancer. My college "science" was biology, which helps a little, and I did electonics in the Navy for years, which also helps a bit (I worked around nukes, and have been trained in radiation health a little, but not in a therapeudic context).

Shiftworker: You mentioned "SBRT/CyberKnife" above. Are these one and the same treatments ? My oncology group does "SBRT", so is this "Cyberknife"?   They also do daVinci prostate surgery. Again, is this something different? 

Headed to Barnes & Noble this week for some prostate cancer books !

max

 

max

hopeful and opt...
Posts: 2237
Joined: Apr 2009

Great that you are interested in doing research. There are local support groups for prostate cancer, where knowledge and emotional support are availalbe. You can google for your area. There is an international  groupfor prostate cancer called USTOO that has local chapters. Google USTOO. They also publish a Hot Sheet on a monthly basis where there is up to date information available. You can also access on the internet.

Best

H & O

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

I went to my local B&N bookstore today and looked over the huge selection of prostate-related books. Well,  not really huge: they had one (1 !) book on the subject.  But, I might have got lucky, since the work is both very detailed yet easy to read. Dr. Peter Scardino's Prostate Book  (Avery, 2010).  Dr. Scardino is Director of Surgery at Sloan-Kettering.  I have dug in, and am startjng to get a better feel for the lingo, etc. Updated edition in 2010.

At just $20.00 it seems like a bargan.

Unrelated: I used to get responses from a "regular" named Kongo. I haven't  seen him since I came back to this board last week. Does he still contribute ?  Thanks in advance,  max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Haven't seen a post from Kongo for awhile. 

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

Swingshiftworker,

People migrate in and out of these sorts of Boards for their own reasons. Hopefully Kongo has just been well, and is taking a break. That is quite common at the Lymphoma site, for instance.  With Lymphoma, complete remission for years willl not uncommonly relapse, and then people return. There is no rest for the weary, it seems.  I never joined a Discussion group until I have been finished with treatment and in full remission for two years, so motivations vary.

I have found yor replies excellent and apperciate all of the feedback I have been getting from everyone. Every single answer  I have gotten hit a concern I had been dealing with like a bull'seye.

max

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

It is good to hear from you again, Vasco,

I am quite calm and OK with all of this. I do expect a postitive biopsy, but am hoping for a low Gleason, and Stage 1.  I know this disease is very treatable, and sometimes "curable."  I have learned (the hard way) that every type of cancer is very different.  Staging of lymphoma and leukemia, for instance is NOTHING like prostate cancer, and I suspect most organ cancers. In lymphoma, surgery is virtually never used, and radiation is uncommon, so the fact that surgery and radiation are the main tools against prostate takes a little mental adjustment.

Of five friends who are a bit older than myself (I am now 58), and who have had prostate cancer, two died, both after surviving about 13 years or thereabout, and the other three have had no recurrance or problems: two had surgical removal immediaely at around age 60, and ten or more years later are fine today, and the other, 72 now, has had nothing but "watch and wait," and is symptom free, and his PSA hardly changes at all from year to year.  So, the track record for men I have had direct familiarity with has been a survival rate (mostly without any symptoms) of at least a dozen years or more.   The future looks promising, at least for now, and new drugs are coming out all the time,

max

hunter49
Posts: 210
Joined: Oct 2011

Hey Max my story is similar with the bounce in PSA but had absolutely no symtoms other than peeing at night.  My DRE's (all 6 of them) were normal but my biopsy came back posative 3 out of 15 cores all same area 90% Gleason 3+4.  Had surgery and good thing I did the tumor involved both lobes and was upgraded to 4+3.  Lucky it grew inward and had no posative margins or lymph nodes. SO far clean almost 3 years.  One ppoint you did not mention is your age.  I would also state that most times your biopsy comes back clean so in short getting biopsy is a smart move.  Good luck

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Hunter,

My age is 58.  I had severe trauma 27 years ago (chest cavity crushed, and rod placed in femur; the incision in my hip is 11 inches long), and recurring prostate infections for about a year afterward, after having a 25-day cath removed when I exited ICU.  I had impotence for about a year, which the orthopedic surgeon said would "go away," which it did spontaneously. I mention this only because it involves prostate "issues" from years ago. 

I have had BPH for about six years (first discovered on CTs for lymphoma six years ago).  I have been lymphoma-free for five years, so that is not really an issue, or even perhaps relevant at this point (lymphoma seldom enters secondary organs, and virtually NEVER enters the prostate; when lymphoma does go into a secondary organ, it is almost always either the bone, or sometimes, the lungs).

I have PAIN occasionally throughout the lower pelvic area, and down the ureathra all the way to the meatus. I would say a few days out of the month.  A dull discomfort.  Asprin does not much help it, but then it totally goes away.  I have been treated with antibiotics for this several times over the years.

I am quite worried about the biopsy now (which I never was before).  It is WEDNESDAY, 8 October. 

I will share all results as soon as I have them. I hope to get my prostate WEIGHT (grams) on Wednesday, which I know now is quite significant in selecting a treatment option, if it ends up being cancerous.  I have read that a very large prostate recommends surgery verses radiation, but several factors would be involved in making that decision.  Any thoughts from anyone are very welcome.

Thanks to all,

max

hopeful and opt...
Posts: 2237
Joined: Apr 2009

 WHY BIOPSY

PSA is higher when one has BPH. The larger prostate puts presure on the uretha, and thus there is a higher PSA. . In your case the PSA's that you have are at acceptable  levels with an enlarged prostate.

 

There is another test called a PCA3 to give an indication if a biopsy is needed, if you so desire. This a urine gene test. The doctors vigorously massages the prostate, the patient give urine a, and then sent to Boswich labs for analysis. Please click my name for more information about this test.

 

I do believe that this doc does not have enough information to do a biopsy. I would call the doc to cancel the biopsy appointment.

 

 I agree with Beau 2

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

I appreciate your insights here, H & O.  I have previously read a little about the PCA3.  If I had to plan this thing again I believe I would do both a Free PSA (blood test) and the PCA3, and go from there.  My family doc and a lot of people in the medical community view  prostate biopsies as overutilized, and of course there is even a move toward minimizing PSA results in some circles.   I have learned quickly that prostate diagnosis and treatments are characterized by a vast number of choices and decisions, whereas many cancers often have only one treatment. They are no-brainer cancers: "Do this, or die" is the way a diagnosis is presented with them. Sometimes a "PS -- you need to start tomorrow" is added.

Between my recurring discomfort and the continuoulsy rising annual trend for my PSA (rounded off to about a point a year), she recommended the biopsy.  I suspect my family doc, if I had asked him about it, would recommend against. I know that most or all of my numbers and symptoms might also be explained by BPH, and hope that is what it is. And finally I know that biopsy is a "cash cow," but just need the peace of mind on a personal level. Combined, the Free PSA and PCA3 might have gone a long way toward pecae of mind, but I have not read anyone suggesting that they are as definitive as a biopsy.  Perhaps someday we will know that they are indeed as good.

I will share what, if anything, I have learned Wednesday evening, and the pathology results later.  Thank you again.  I will need your advice later, either way !

max

hopeful and opt...
Posts: 2237
Joined: Apr 2009

Dear Max,

Good luck with the biopsy, which will bring you peace of mind.

Don't forget to take the antibiotics.

I wonder does your doc give an extra antibiotic injection at the time of the biopsy.

Please make sure that at least 12 cores are taken.

You will do fine

Best,

Hopeful

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

The urologist did not mention an antibiotic shot, but there may be one. I'll know in 19 hours.

I will request that there be at least 12 cores, but I can't imagine a doc wanting fewer anyway. I also want to know my prostate weight before I leave her office tomorrow.

The guys who have told me about their biopsies all have claimed that it is not too bad.  In lymphoma, a bone marrow biopsy is common (but virtually never a bone scan).  The bone marrow proceedure requires that you lean over a table, and a rod is thrust into the top of the hip. The nurse then digs around inside the hip until she has enough tissue to submit to the lab.  It is staggering for many, but I do not recall mine being that bad.

All of this reminds me of a line in the old film Pulp Fiction: "We are gonna get medieval on your a-- !"

I appreciate your positive thoughts,

 

.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Hopeful and Optimistic and all others,

Home from the biopsy. It hurt much worse than I anticipated, very significant pain, but a small price to pay, I guess.

Twelve cores were pulled from the standard regions of the gland. The doc said she did not see any abnormalities or tumors, but added that that does not prove the test will be negative.

The gland is quite large, 55 grams.  As I mentioned, I have had BPH for years now.  Results in two weeks.

max

hopeful and opt...
Posts: 2237
Joined: Apr 2009

You probably know that at first there is blood in the urine, and blood in semen for a while. If you have pain , an aspirin or tylenol. 

Generally it takes a week for my results since  pathology is done within the hospital.

If your pathology is positive ask your doctor to send  the slides to a world class pathologist who specializes in prostate cancer, so that you are not under or over treated. (determining the results by a pathologist is subjective so you want an expert in the field to review the slides).

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3427
Joined: May 2012

Yes, bleeding during urination. Bright at the beginning of flow. Doc said this could last a week to several weeks. I understand that it is normal.

I am scheduled to go back in two weeks for results, although I know she will have them much sooner. I asked her, and my doc told me that she does NOT do prostate removal, and I am somehwat glad, since her personality leaves much to be desired.  I felt like a cadaver being carved on, and she was very terse in answering questions.  But, many doctors are like that.  I had already decided that she would NOT do surgery on me, even if it were necessary, and even if she performed them.

I appreciate your discussion regarding pathology.

Walking the prostate assembly line,

max

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