CSN Login
Members Online: 16

You are here

Please send Membership Card

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

I just got home from the urologist's office with my biopsy results. Please mail my Prostate Cancer Board Membership Card.  I am beginning a new thread, since I am moving into a new stage of the discussion (my previous Thread was at Once Again , for anyone who wants to trace my history there).

My results were about as good as you can get and still have cancer.  My most recent PSA from two months ago was 4.6, with a history of increasing about (approximately, not exactly) 1.0 points a year over the last two years; this is what motivated me and the doctor to do the biopsy.

Results: one core of twelve positive ("Left Lateral Apex").

Cell type: Adenocarcinoma

5% of core ("Linear extent of 2 mm")

Gleason: 3+3= 6

Some "minor chronic inflammation" is present (probably explains my UT pain throughout the ureathra which I have had for years).

One other area shows "minor nuclear atypia."

Because of my five year remission, previous lymphoma is NOT considered a co-morbiditiy.  Doctor told me I would need some advanced imaging of the gland (she mentioned some form of MRI).

My age is 58.

I had determined beforehand that if ANY cancer was detected I would not consider Active Survellance. She agreed that I was generally too young for that protocol, but she was also very calm, and said I could very safely take my time to make a decision. No "rush to the operating room" reaction.

I have an appointment with a radiation oncologist next week to discuss RT therapies, espepcially IGRT.  Depending on what he says, I may also consult with a urological surgeon. My gut recommends RT to me, but I am open to RP as well.  One of the urological surgeons at my hospital claims to have performed "one of the highest numbers of RPs in the US," with excellent outcomes, so he has done a lot of them.

Any and all feedbacks appreciated. A penny for your thoughts !

max

 

 

hopeful and opt...
Posts: 1999
Joined: Apr 2009

Dear Max, I am sorry for your diagnosis, however the biopsy shows a low aggressive, low volume cancer. At this time you are a perfect candidate for Active Surveillance. It is very possible, about 70 percent of the time, that your cancer will not progress, and you will die with PCa, not because of it.

I strongly suggest that you have a second opinion on the pathology of your biopsy, since determining Gleason scores are subjective, and it possible that you may not have any cancer. I suggest that you have your slides sent to a world class pathologist, since there is a difference in skills among pathologist, as well as other doctors.

An MRI can show if there is extracapsular extension, that is , if the cancer is outside the prostate , if there are suspicious lessions in one lobe or two, the extent of the suspicious lessons. There is a difference among MRI's. I suggest that you ask for an multi-parametric MRI with a Tesla 3.0 magnet. This MRI shows very high resolutions. It is the best that I know of that is in clinical use.

The findings of an MRI shows "suspicious" and is not documented by a biopsy. In the previous thread that made, I recommended having an MRI, then a biopsy of the suspicious lessions. If you decide on an Active Siurveillance program, this is a preferred method. Having an MRI before a biopsy is  part of what I am doing to monitor my cancer. So far I have been in an Active Surveillance program for the last 5 and 1/2 years. Please click my name to see what I have done and pertinent information to choosing an Active Surveillance program.

"Active surveillance with delayed treatment if necessary" is a valid treatment option where one can avoid the very possible side effects of Active treatments. These side effects can include, but not limited to incontinence and ED.  An Active Surveillance protocol can last  a life time , or if treatment is necessary, studies have shown that a man  who is in a valid  active surveillanc program, can still choose his initial treatment choice if desired without any negativities to the results of treatment.

A man who is 58 years old is candidate for Active Surveillance. Where I am treated , in an active surveillance protocol, there is also a  man who is 35 years old who is in the same program.

A few years ago there has been a recommendation not to do a PSA test among various groups of men, in my opinion mainly because there has been much over treatment of men who are eligible for Active Surveillance as you are. Many of these men have had side effects from the treatments. 

Lately with increased techology there are more men, who are eligible for AS , who are following this protocol. As I understand it is about 20 percent now. About 5 years ago when I was diagnosed only 10 percent did AS. Much of this is as a result of unreasonable fear of the patient, and of urologists leading the patient into treatment, becasue this is 'what they believe in or can make a profit from"

Additionally please be advised that you are in no rush to make a decision since you have a low volume, low aggressive disease.

Best

 

 

VascodaGama's picture
VascodaGama
Posts: 2542
Joined: Nov 2010

Max

I took you as a member of the club for the long assistance you provided to your friend with the cancer. It is most unfortunate that you will continue within us. I am sorry for the positive diagnosis.

In any case, you know that the info collected so far points for a low aggressive form of cancer which progression may never border your life. Treatments will surely prejudice your status (QoL) but they may free you from the cancer for good. You need to get second opinions from specialists and family, and need to know exactly about the risks involved in each treatment. This is a difficult decision that only you can take.

The PSA value is not totally produced by the cancer. The inflammation may be accounting for a big “chank” in the total serum. The "minor nuclear atypia” may refer to gleasons patterns lower than 2.

We want to help you so you should shoot your questions.

Best wishes in your continuing journey.

VGama

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Vasco and H&O,

Thank you, guys ! It was highly beneficial that I began studying this stuff over a month ago, or the Biopsy Report would have meant nothing to me.  As I said above, the urologist did say to take my time with this decision. She briefly discussed Active Surveillance at the beginning, and I know that this is a more proactive approach than when it was called Watchful Waiting, years ago.  She agreed with me that my age is perhaps the strongest counter-indication of doing that, which Dr Scardino's Prostate Book agrees with (I plugged in my values to the Assessment in his book, and it suggests against AS in my case, although it appears "borderline". But it is a reasonable option.  He is one opinion among many others. I mentioned his book before, and he is Chief of Surgery at Sloan Kittering. (Avery Press, Revised Edition, 2010.)

A current close friend (now 72) had a biopsy four years ago with one positive core, and another a year later, with NO positive cores. He has been in AS these 4 years, and is very satisfied with it, and of course has had NO side-effects.  On the other hand, two other friends both had RPs immediately after diagnosis at around 58, and both died at 72.  Amazing, how almost identical their clinical paths were.  Both were symptom-free and had great lives for over 95% of the time between surgery and the end.  Neither had any pain or real problems until the last six months or thereabout.

My urologist's office got me an appointment with a radiation oncologist on Monday (faster than I expected), and I will get his assessment. I know they do IGRT and IMRT, and also have the Varian TrueBeam System (similiar to Cyberknife). I met this doctor years ago when I first got lymphoma, because there was some thought that I might need radiation, but never got any. He is very relaxed and optimistic, which I highly prefer in a doctor.

Regardless of what he says, I will also meet the surgeon who I mentioned before, who says he had done many, many hundreds of RPs. Looks relatively young on his video.

A lot to figure out.  I hope SwingShiftWorker might comment on what he thinks of possible RT, given the specifics of my results.

max

Swingshiftworker
Posts: 1002
Joined: Mar 2010

Thanks for asking for my opinion.  Vasco and H&O have already given you good advice.  Your PCa diagnosis is very similar to what mine was and sounds very minor.

I think you would be a good candidate for AS and I'm not sure why your doctor recommends against it.  Personally, I rejected AS because I did not want to have to go through the surveillance process and have to constantly worry about what the result of the next PSA test would be and what treatment I would have to choose if it rose too much and what might happen if I waited too long. 

Like other men, I just wanted the PCa gone BUT I didn't not want to have surgery because of all of the risks involved in that.  So, I looked for another method of treatment that would provide the best possibility of success in eliminating the cancer with the fewest potential side effects -- most importantly ED and incontinence.  That turned out to be CyberKnife for me. 

I was diagnosed in Jan 2010, treated w/CK in Sep 2010.  After some worrying irregularities, my PSA finally dropped below 1 in Dec 2013 and dropped lower in June 2014, whch indicates the the cancer is in remission.  Due for another PSA test in Dec 2014.  I also had an MRI/MRSI scan done a year & 1/2 ago, because of increasing PSA levels in mid 2013, which found no evidence of choline (an indicator of cancer) in the prostate or adjoining areas.  So, as far as I know, I am now currently free of PCa and I am much happier and relieved knowing this.

However, the current "policy" thinking in medical circles is that too many men are treated "unncessarily" for PCa and that early treatment of PCa by surgery and other methods is a waste of money and, in the case of surgery, subjects too many patients to unjustified risks and harm.  

For men who are thinking of choosing or know of no other option than surgery, I heartily agree that AS would be the better option. However, for men who are considering CyberKnife or other advanced methods of radiation treatment, I can see no reason (other than $) not to receive the treatment, given the high probability of success w/o the risk of surgery and w/mininal risks of debilitating and life changing side effects.

So, YOU need to decide whether AS is something you want to do or not.  If not, I'd recommend you investigate the Varian True Beam system to see if it is truly comparable to CK or not and, if it is, I would recommend that you chose it for your for treatment.  If not, I would recommend finding a site where you can get CK instead. I would not recommend, IGRT and IMRT unless you have no other choice.  They have been used successfully for the treatment of PCa (often after failed surgery) but do not deliver radiation to the prostate as precisely as CK does and require many more treatment sessions than CK does (usually 40 vs 3). 

Good luck!

 

 

 

 

Old Salt
Posts: 478
Joined: Aug 2014

With a Gleason score of six, the CyberKnife (CK) protocol would involve five treatments of  ~7 Gy each. The protocols vary a bit from site to site with the intent to limit injury to adjacent tissues.

You wrote that you didn't want to consider AS. How did you come to that decision? I agree with the earlier posts that AS appears to be an alternative.

Swingshiftworker
Posts: 1002
Joined: Mar 2010

With CK, you'll get either 4-5 treatments every other day in order to avoid radiation toxicity/damage.  My reference to 3 was a mistake.  However, your estimate of only 7 gys per treatment is way off.

Here's what I said in another thread about that:

"There is some confusion about the reported radiation dosage for CK prostate treatment and there has been a lot of variation in the radiation dosages adminsitered as indicated in Table 1 of Katz's Oct 2010 report. The closest treatment to mine was listed at the 2nd to the bottom in Table 1 of Katz's report.

See: http://www.firstdaytoncyberknife.com/images/pdfs/ckprostatetcrtak.pdf

CK is generally administered in dosages of 35-40 gys/treatment (usually in 4-5 sessions) BUT the total daily dosage is actually hypofractionated and delivered in 20-30 smaller doses in the 1.5-1.8 gy range (all around and at different angles of attack) AND the total BED (biological equivalent dosage) of all of the treatments is around 92 gy (or at least it was for me) but from Table 1 in Katz's report the BED has ranged from 87 to 125 gy."

So, it is the BED (and not the daily or hypofractionated radiation doseage) that is MOST important to note and BED is the ONLY meaningful measure of the total radiation dosage delivered for comparative purposes between difference radiation technologies using different fractionalized radiation dosages and delivery methods"

CK as designed to replicate the use of HIGH dose Brachytherapy.  See, for example: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746400/

In any event, I chose CK over AS for the reasons stated.  I wanted the cancer GONE and I didn't want to bother and worry about constantly monitoring my PS every 3 monts FOR LIFE (n addition to the annual or bi-annual biopsies that are usually required) if there was no change or until the PSA level went up to a level (or a later biopsy revealed a maglinancy) that required treatment later when it might actually be TOO LATE to treat the cancer.

It's bothersome and worrisome enough to check my PSA every 6 months (currently) to see if the reading is at or below the last one, but at least I know that the last reading was below 1 and that my MRI/MRSI scan a year and 1/2 ago was clear of cancer.  So, I don't dwell on it the way I might if I was in an AS program. 

CK was available to me and was covered by Blue Shield, so I went for it and don't regret it one bit.

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

 

Thanks for the updates, Old Salt and Swingshift.  Not only do we have to sort these decisions out beforehand, but we have to be OK with them afterward. Or at least live with them.

I re-read the chapters in Dr. Scardino's Prostate Book regarding choosing a treatment and the pros and cons of each, and find that he has not only profound technical expertiste, but a lot of common sense and appreciation for how hard these decisions are. He writes in several locations that there is almost never only one good decision available.  Re-reading the Active Surveillance chaper I was struck at how I had overinterpreted when he advises againt it, and it is clearly reasonable in my case. 

His reasons for why the men opt against it reads almost verbatim with some of what SwingshiftWorker just posted: Peace of mind, the idea that a guy would rather have the disease gone than live in worry, although everyone worries anyway.  The doc also mentions that a significant percentage of men who begin AS later opt for radiation or surgery, even with no worsening of their annual surveillance results (30% within five yeas). They just sort of "lose their nerve." I understand that, and that still leaves AS as a valuable tool during the time they utilized it. His main negative toward AS is that it may be quite hard to know when to transition to a curative therapy, and in some cases the window of opportunity for cure might slip by.

I tend toward anxiety and worry anyway, and as I have stated, will choose between radiation or surgery, after I talk to very experienced practicioners of each.  I have ruled out Brachytherapy, although he says it s often a reasonable option in indolent disease, but adds it is counter-indicated for men with significant flow problems, such as I have had for several years now.  The doc further states that these decisions should include family (Vasco mentioned this recently also), and my wife is just not comfortable with AS. 

Swing, you mentioned the anxiety of follow up tests for wellness. After several years at the Lymphoma Board, I must say that that is probably the most common issue discussed there; what I call Relapse AnxietyIt is just a universal thing, but diminshes with time.  I do not believe it ever goes away totally.  Another attribute of the evil known as cancer.

Please keep those thoughts coming folks,

max

Swingshiftworker
Posts: 1002
Joined: Mar 2010

I should also mention that if CK had NOT been available to me at the time, I probably would have opted for AS, because my PCa was relative low risk and NONE of the other options were acceptable to me in terms of the risks or other factors involved.

The only other option that I might have persued then was Proton Beam Therapy but it was NOT covered by Blue Shield, the out of pocket cost was around $50k and the closest PBT center to me was in 400 miles south in Loma Linda, CA, where I would have to rent a place to live for the 8 weeks of treatment   Could have done that if necessary, but fortunately CK was available to me instead.

Also, I really don't think about my PCa status much anymore.  It only comes to mind now when I'm due to take my next PSA test.  Then there is some anxiety before taking the test that is only alleviated after the test result is received.  Then, as long as the result is what it should be, I can forget about it again until the next test.

The only difference between this and AS testing is that w/AS you know you still have the cancer and are worried when (if ever) it might get worst and whether you will still be able to treat it effectively when you find that out.  After treatment, if it was successful, you know you've been "cured" (for now) but still worry whether it will return. 

So, I guess the "worry" factor isn't all that different w/AS or post-treatment.  It just depends on which kind of "worry" you can live with best.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Well said, SSW.

I totally understand your points here.  Actually, I have been in remission from lymphoma about the same length of time you have been free of Pca, and I now have very little anxiety when I go in for my annual lab work at the cancer center. This stuff is all "old hat" to me now. "Cancer ? No cancer?" -- I give it all a big yawn.  I am not apathetic, but I am in tune with my mortality.   

Lymphoma is followed (in most cases) with CTs for the first two years, and then blood panels; there is no singular test for lymphoma, the way that PSA is for prostate disease.

 As we have discussed before, my local cancer center, which is part of a teaching hospital, has the TrueBeam System, which is quite similiar to Cyberknife.  I will know more Monday.

I thought I would link the book I have been using since I started researching Pca. It seems like probably as good an Introduction to the field as exists in English. It has really helped me.  I know that with your level of knowledge you are past what is in this book.  I submit it for the newcomer to this Board. The author is director of surgery at Sloan Kittering in NYC.

http://www.amazon.com/Peter-Scardinos-Prostate-Revised-Edition/dp/1583333932

Old Salt
Posts: 478
Joined: Aug 2014

As you already know, there are several options to 'manage' your situation (Gleason = 6). Pick the one that you (and your spouse) are most comfortable with, after doing as much homework as you can stomach.

I would like to point out that reading the personal experiences on forums such as this is interesting, but doesn't give a statistically valid picture of the success, or failure, of various treatments. The reason being, that patients with successful outcomes usually do not report their stories. They are enjoying life.

Doctors are supposed to present a more balanced picture of the alternatives for someone like you, but some of them are gung-ho on whatever method they practice routinely and may not give you a proper perspective of alternative methods. For instance, some won't mention SBRT because they prefer (and have access to) the more expensive IMRT methodology. Some urologists will point their patients towards surgery and may not, or barely mention radiation options.

In this context, a forum such as this with non-expert opinions does offer the advantage that it is likely that different options to address the many forms of prostate cancer will be mentioned.

 

PS: I concur that a second opinion on the pathology slides from the biopsy is advisable.

 

VascodaGama's picture
VascodaGama
Posts: 2542
Joined: Nov 2010

Max

I enjoyed reading your post. You are well aware of the pitfalls of being a cancer patient; however, this new chapter in your life may become worse than what you have experienced previously. The problem is that, as upto this precise day, there is no feasible silver bullet to round off the prostate cancer. And then we ask why?

 

And the answer; …….because, treatments do not address the cancer itself. These are done homogeneously to all patients, in a guessing mode, in spite of exist several types of cancer and people. They are the best available tools but do not assure the desired goal. We will be faced with the consequences that can be good but also become permanent nightmares.

You probably heard that cancer makes part of our aging process which progressive instructions have been encrypted in our gens, existing from the very first moment of conception, even before we are born. The human blocks, the cells, got the means to persist in living as well as the “switches” that can be turned OFF when a particular function is no more necessary. This procedure in cell’s behaviour gives the impression that the cells for no particular reason decided to live "la Vida Loca", which consequencies are  obvious recurrences. In other words, cancer can be dormant for life until we die from other causes. But it can be awaken (switched ON) following the imprinting “instructions”, or it can be “whipped” by a stressful moment in life or an inducer from outside sources (pollution, radiation, chemo, etc, and the environment). Healthy ways of living is probably, for the moment, the best we can chose, until we find a treatment that addresses the cancer itself, those cells living La Vida Loca.

There is a factor of luck in the outcomes of present treatments. Some do better than others and may never find the desired peace of mind.
This that you discussed above is reached when we feel that we have reacted and did what we think to be the best, in the best of our acknowledge. It may be your present stance confronting the cancer. You set it nicely.

"Cancer? No cancer? -- I give it all a big yawn. I am not apathetic, but I am in tune with my mortality.”

In my case it took me some time to reach that peace of mind. When I heard the words “You have Cancer”, I went bananas. In fact I still  do not recall the period between leaving the hospital and arriving at home (6 stops on the subway). I just remember to turn my back to the doctor and then see the face of my wife staring at me. I realized I was at home, but didn’t know how I got there. Cancer was equal to death in my thoughts, so why should I have it? I was not a sick man, very young (50Yo) not a bad boy (maybe a few times), so…. There was an error in the results, they mixed my biopsy needles with the ones from someone else.
Well, now I see it as a joke. How far away was I at that time from the reality.

Here is a very interesting link summarizing Cancer Dormancy. It all became possible for the many researches done in the study of the human Genome and behaviour of cells.

http://en.wikipedia.org/wiki/Cancer_dormancy

http://en.wikipedia.org/wiki/Cell_cycle

 

 Best

VGama  Cool

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Thanks for this one, Vasco. You know all of the science, but the deeper stuff as well.  I will look at the links.

It is so disjointed, how the experts describe Pca. On the one hand, it is usually extremely slow-moving and indolent; on the other hand, they are always warning that in the US alone  it "kills 30,000 men a year, and is the second-leading cancer cause of death in males."  With AS, the warining is always "do not wait past the point at which you can be cured."  It is a schizophrenic star chamber world in which the Pca patient lives.

My buddy Ed (not to be confused with Gary).

When I met him at work, he was a full-time Pca "counselor" to all of us younger guys. He knew every fact, every probability. Ironically, he always had a cigarette in his hand, but he was encyclopedic about Pca.  He was rich, and at the end did home-hospice at his lakeside home, looking out over the water.  His last e-mail said the morphine could no longer "touch the bone pain." Nothing from him for a few days, and then his daughter e-mailed all of his contacts that the end had come.  I wonder how much different his path would have been if he had known nothing.

He lived 13 years following RP, and was a joy to be around, and helped everyone he could. 

When in ICU in 1986, at the age of 30, the doc went out and told my mom and aunt that "I had maybe 30 minutes to live," due to a recollapsed lung, blood clots in my lung, going on life support, pneumonia, and a heart rate of 180.  

When a surgeon looked at my first lymphoma CT in 2009 that had been e-mailed to him, I asked how bad it was, and he replied (without a lot of tact), "Look at it ! It is everywhere !" He then added, "It might be treatable." I went home feeling the way you described so well above.

The numbers suggest I can and will get through this current thing, and I am working toward that.  I pray so, and feel OK about it at the moment, but nothing is a certainty in this business, or any other.  I have been told way worse. The urologist coming in and saying "there is some cancer" was about like hearing "you may have a touch of arthritis," or something similiar.  It was just another stop for a few minutes on my busy day.

Thank you again.

max

https://www.youtube.com/watch?v=oJ-5DQ0MmKI

 

.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Met with radiation oncologist today, very cordial .  Said my apparently minor disease  should be very easily killed with rad. Said they have a brand new Calypso system, but I am disinclined to be a patient during their learning curve. I believe Calypso is another Varian innovation.  Recommended IGRT with fractional delivery over 38 days, for a total of 76 Gr. He said his department does do 5-day also. Said IGRT involved daily updated imaging for each treatment.

Did DRE because he  considers ultrasound-generated gland weights to be quite inaccurate. Asked a lot of Urinary health/BPH questions. Our session lasted 75 minutes, and he was very patient.

Stated that regarding first-line therapy,  IGRT now matches RP within 1% in long-term survivorship.  Welcomed me to see a surgeon and weigh options.

All thoughts ENCOURAGED, especially regarding Calypso, which I had never heard of. Said it involves placing actual transponders inside the gland for stunningly accuate delivery. 

VascodaGama's picture
VascodaGama
Posts: 2542
Joined: Nov 2010

Max

The system is not new or a pioneering innovation. Fiducials are part of the real-time tracking system when delivering radiation. This is the main purposes of IGRT (Image guided radiotherapy). Calypso uses sophisticated equipment that tracks with GPS coordinates.

The results of the treatment in IGRT are all the same. It permits accuracy alignment which in turn lowers the risk of radiating unneeded tissue. One of our comrades that used IGRT-IMRT is Radiation hopeful which threads you can follow since the start, two years ago.
CK also uses real time imaging. In my case of SRT (IMRT) with no prostate in place, IGRT systems had no utility but they marked my body with sort of permanent ink to align the radiation equipment at each session. This alignment was verified on real-time (3D) by the staff in the monitoring control room. Every two weeks I would do an MRI to check alignments for the newer fields of attack.

I like the way you move. Getting the best information before a decision.

VG

Old Salt
Posts: 478
Joined: Aug 2014

Fiducials are used to track movement of the prostate during irradiation to minimize irradiation of adjacent tissues. In my humble opinion, this is the way to go.

And yes, your prostate does move as you breathe, even when you lie still on the treatment table.

Although some people have experienced the placement of the fiducials as less than pleasant, when done by an experienced doctor (either a radiation oncologist or a urologist), the procedure can be easy for the patient. In my case, I got sedated, and before I knew it the procedure was done with. Because of the anesthesia/sedation, I couldn't drive home and had to be accompanied by another person; this is standard procedure. The fiducials (4 or 6, usually) then have to stabilize before the radiation treatment can begin.

Your specialist recommended IGRT (38 treatments). Considering your Gleason score of 6, SBRT (CyberKnife) should be considered as well (5 treatments). The latter is obviously more convenient for the patient and less expensive (to you, the 'system', or both).

Anyway, your prognosis is good, although the radiation oncologist went out on a limb when he said that he can kill the cancer. A percentage success rate would have been more scientific.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Thanks to Old Salt and Vasco for these most recent thoughts. 

I am just going to sit on this for a week or two.  I am not positive that I will even schedule a surgeon for consultation now. But,  knowing me, I probably will, if only to hear his sales pitch for RP.  I am not jaded, just tired.  And a little depressed.  Trying to climb this third medical mountain in my life has caught up with me for the moment (severe trauma, lymphoma, Pca). 

I feel I need to take a short break to get all of the ideas in perspective. At the moment, I am strongly leaning toward the IGRT, subject to change. I like the Radiation Oncologist a lot, and feel he is totaly honest and forthright, and I know that counts for something. He has a huge amount of experience in Pca.

He made an interesting comment, when I asked about any future need for salvage therapy: "You are many times more likely to have lymphoma relapse than any further issues with prostate cancer."  Geeze; sort of a backhanded reassurance, but I know he was just trying to reassure me regarding the Pca.

max

CC52
Posts: 92
Joined: Nov 2013

Max,

I am so sorry for fact that you have had to, once again, face a threat from cancer. With reget, I welcome you to the club.

I can relate to your need to push away from thinking about it for a time - as I did while I considered my options. You are welcome to follow my story here: http://csn.cancer.org/node/264905 .

You have already gotten good advice here, and fortunately your Pca is a low grade/low volume and you do have ample time to consider how to proceed. The varied treatment options for your Pca, along with any potential side effects, can make the decision more difficult.

I would have preferred AS, however the number of positive cores (3 of 18), and 2 second opinions with increased Gleason scores from highly respected teaching hospitals forced me away from that option.

I ruled out surgery (either robotic (DaVinci) or open) immediately. Far too many risks.

IMRT was an option, but I didn't like the potential for damage to nearby organs and the up to 8 weeks of daily treatments.

Never really considered brachytherapy - didn't care for implanted radioactive seeds.

My choice was to go with CyberKnife (SBRT). The implants (fiducials) were placed with NO discomfort at all.

Each of us have to make the best decision for us. What works for one, may not be the choice for another with a similar Dx. And none of us (or our treating physicians) know with certainty if the Pca will kill us - or if we can live with it and die from something else. It seems you are a perfect candidate for AS, but you've stated you will not go that route.

Whatever choice you make, know that we will respect your decision and support you along your journey.

Take care,

CC

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Thanks for joining in on this thread, CC.  Like you, everyone who has commented on CyberKnife to me has been glad they used it.

It is not available at my local teaching hospital group, which is large and top quality, but not a famous name.  They have about 30 oncologists on board, and do serious research and clinical trials, but thankfully trials are not something I have needed. And my insurance, while excellent, is linked to the hospital itself. I can go out of system, but only with a substantial financial penalty. If my case were a lot rarer or complicated I might look elsewhere.  The hospital does have a Varian system which more or less is a competing system with CyberKnife, and most reviews conclude it is equal in quality and technology, but I have not studied it a lot.   One of the guys sent me several articles discussing these at my previous thread here at the Prostate Board, which was entitled "Once Again," if you are interested in researching it further.

max

Old Salt
Posts: 478
Joined: Aug 2014

It seems that the treatment plan is falling into place.

Active Surveillance is out; brachytherapy is out; Cyberknife/SBRT is out, and you have confidence in the IGRT proposed by the specialists at the teaching hospital.

Moreover, you don't have to decide 'tomorrow'.

Best of luck with the treatment. If you need more info on IGRT just ask.

Swingshiftworker
Posts: 1002
Joined: Mar 2010

Based on my reading of the thread, it seems to me that Max still has a choice to make between AS, Varian True Beam (which he is told is comparable to CK) and/or IGRT.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

You are both corrrect:  the clinically appropriate options are narrowing, but I still have to make a final judgement between rad options and surgery.  I see a urology surgeon on the 11th.  States he has done hundreds of laproscopic RPs wih good outcomes. I will make the final call within a few days of speaking with the surgeon.    I asked the radiation oncologist what salvage therapy is availabe if the IGRT should relapse years later, and he said "Hormonal."  Is hormonal curative, or just a palliative treatment ?

Max

Swingshiftworker
Posts: 1002
Joined: Mar 2010

Still considering surgery?  Interesting . . . 

The option after failed surgery is radiation and hormone therapy.  Why bother w/surgery & the risks involved when you can get a radiation treatment as effective w/o the same risks? 

If radiation fails, further additional radiation treatment may be possible as well as adjunct hormone therapy if need be.  Surgery is also a consideration after failed radition but usually isn't chosen because of the difficulty in the procedure & the associated risks involved.

Good luck whatever you decide!

Old Salt
Posts: 478
Joined: Aug 2014

To my knowledge, hormone treatment is palliative. Unfortunately, at some point, the cancer may become independent of testosterone and the hormone therapy won't work any more; your cancer has become 'castrate resistant'. Several treatment options are available at that point and more are coming along, it appears.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Hey guys (and to the many wifes who read and write here),

Since my last post my wife and I visited a Pca surgeon to discuss RP. I also called my old medical oncologist to hear his thoughts in my particular case both for and against both RT and RP.  He has been since Day 1 in my Hodgkin's journey a source of comfort to me. Since I am in long-term-followup with him, he did not require a consultation, and actually gave me a call on the phone.

Decision: The IGRT described above.  Quite low probability of relapse, no need to be cut. Chances of rectal or bladder secondary cancers being caused  <2%.   2 Gr each in 38 sessions, for a total of 76 Gr.  Based upon the general guidelines in Dr. Scardino's Prostate Book , this or RP were my best available choices. Five year cancer-free rates for first-line IGRT and RP are virtually identical now in the best academic studies.  All four doctors with whom I spoke agreed that seed RT was not an option, due to UT issues, and a relatively large gland.  My clinic now has Calyspo, but I chose to not add that form of Guidance.

Treatment "Planning CT" in January, and then begin treatments a week thereafter. Any thoughts welcome, as always.  A blessed holiday season to all,

max

Swingshiftworker
Posts: 1002
Joined: Mar 2010

Did you mean that RP was NOT an option because of UT issues?  Assume so.  Good luck w/the IGRT treatments!  Keep us informed about your progress.  Take care.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

All of the doctors I spoke with agreed that surgical removal (RP) is actually the best option when flow problems are an issue; the surgeon said with the gland cut out I would pee like never before ! All also agreed that Brachytherapy was impossible due to these BPH symptoms.   But, the radiation oncologist said that the IGRT should work very well, even with the BPH, and that is the choice I made.

Thank you for your wishes,

Max

 

Old Salt
Posts: 478
Joined: Aug 2014

'Congratulations' doesn't quite seem like the right word, but you have come to a thoughtful decision. I wish you strength as you move forward.

Protocols for IGRT vary from institution to institution (diet, bladder full, or not, etc). I am sure you will be told what to do (and what not to do) to minimize problems.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Thanks Old Salt. I will share what I learn when I learn it. I do not begin until January though. My frst step will be the "planning CT" which treatment is designed around. 

Max

VascodaGama's picture
VascodaGama
Posts: 2542
Joined: Nov 2010

Maybe you can use this period while waiting to research about the RT procedure and what you may gain by avoiding some “items” in the planning. You should be involved in the planning and discuss with the radiologist about what you might want to avoid with no prejudice to the therapy’s final purposes. Some physicians do not include the lymph nodes in the protocol but these are the areas at risk for metastases and latter recurrence.

Everything starts with the CT to “design” the isodose curves, angles of attack and the scope of the irradiation field. It will be now that the radiologist will make the decision and such can vary if one wants it.
Most probably in your low risk case, the focus will be the gland alone. They may even avoid regions in the gland that were not identified with cancer in the biopsy, or the whole of the seminal vesicles.

You are not an expert on the matter so that you must trust the radiologist but you will be the one risking the consequences. It doesn’t hurt to have a conversation with him on the matter. You can also inquire about preparedness affairs; what to eat or avoid, etc, which drugs he recommends to counter the side effects, etc. The risk to lose the fertility is high in RT, so that one should be prepared if he wants to have assurances for fathering a child. Many physicians recommend patients to stop taking supplements (antioxidants, etc).

http://csn.cancer.org/node/289301

http://www.pcf.org/site/c.leJRIROrEpH/b.5837043/k.B194/Loss_of_Fertility.htm

You are in my thoughts.

Best wishes and luck in your journey.

VGama

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

I will read and act upon all that you have forwarded here, Vasco.   What you have been doing for the men here for years is priceless....

max

hopeful and opt...
Posts: 1999
Joined: Apr 2009

Max,

I wish you well. Please keep in touch, and let us know your progress. Good thoughts for you and yours.

Best,

Hopeful

 PS Use of Avodart before radation can reduce the size of the prostate and make things a little easier(urination during treatment). You may wish to discuss this with the doc. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

I am totaly serious: the insights from all of you guys who responded here at the Board were all significant in assisting my decision, including any recommendations for surgery.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

I have not checked in here for several weeks, and want to give a little update.

First, please don't think me lacking in resolve, but some time back I cancelled the RT and scheduled for RP.  I had not even been for a planning CT, so there was not an insurance or money issued involved. The surgery is set for January 28.  I have been to a training session for the pelvic floor exercises ("Kegel") to assist in continence after the removal.

I had a couple of reasons for the decision.  The main one is a continuing, serious flow issue, which the surgeon assured me the removal would solve. This makes sense of course.  I have read of RT occasionally worsening this situation.

A second, perhaps related issue is my chronic prostatitis  ("chronic prostatitis/ chronic pelvic pain syndrom ['cp/cpps'], Category III) and associated pain.  There is not a lot of information readily available about how, of if, radiation would affect this.  Like most chronic prostatitis mine never tests positive for any bacteria, and is unreactive to antibiotics. I have done the Cipro thing several times in the past few years with no success.  But my biopsy did show "chronic inflammatory tissue."

The pain has worsened for no known reason over the last month or so. I called the surgeon last week to ask about trying antibiotics or pain meds, and he said he would prefer to not give me either before surgery, but why the nurse did not explain. He recommended just continuing with Motrin or the like for the present.  Every office visit they do a routine urinalysis, and nothing has been showing up.  While the pain is usually dull, I will occasionally feel a "needle prick" sensation.  I know prostate cancer, especially very minor cases , does not reportedly ordinarily cause pain, so I am wondering if this sound like symptoms of chronic prostatitis worsening.  Not wanting to get into "TMI," I have also on occasion had serious pain during sex. Never common, but on those few cases it was bad.

If any of you have been through anything similiar before treatment, I would be interested to hear about what was determined. Needle stabbing sensations, perhaps once a week. Sometimes fairly marked, but always instantaneous, and then gone. I have never had two of these episodes back-to-back, or even in the same day.  Another possibility I will float is this: We all know of biopsy "false negatives," but I have read that post surgery it is not too uncommon for the lab to discover that there was significantly more disease present than the biopsy results indicated. Has anyone experienced that also ?  A friend is 72, and during his first biopsy about four years ago he had one positive core, unsure of the percentage. He went on AS, and his second biopsy was negative for any cancer in all 12 cores.  So, missing disease (we all know) does happen. His PSA is not rising and has never been over a 4, and the doctor said he sees no need to do any more biopsies unless his PSA begins to climb, which so far it has not.  Personal note: when I was having my biopsy, after the 11th corer was drawn, the gun malfunctioned. I had to lie there on the table while a nurse went to get a tech to come into the room and "fix" it, whatever the problem was.  I was about ready to ask the doctor to just be done with it and forget the 12th core, but it was drawn.  My one positive core was #12.

Wish me luck. At least I will have the Holidays still in one piece !

 

max

Swingshiftworker
Posts: 1002
Joined: Mar 2010

I, of course, wish you luck w/your decision to go w/surgery instead of radiation. 

Although I think you may regret it in terms of urinary flow, because instead of low flow you may end up w/unlimited flow, you obviously took a lot of time and put a lot of thought into making the choice that you thought would be best for you.  I hope that it works out as planned.

Please keep us informed of your post-surgical progress.

Beau2
Posts: 261
Joined: Sep 2010

Max,

In answer to you question, my post surgery gleason was the same as my pre surgery gleason;however, the Cancer was found in more of the Prostate then originally thought.

You discussed the flow issue. For me, one of the benefits of the surgery was increased flow. I can now empty my bladder in a few seconds .... no more standing at the urinal for minutes! Also, no more getting up several times during the night. I had no problem with leakage after the operation .... I did not use a single pad or diaper. I do think the Kegels helped. For the two or three months leading up to the operation, I did them several times a day. I did them when I walked, when I watched TV, etc. etc. 

Hope everything works out for you. Good luck as you move forward!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

The da Vinci machine starts cutting around noon tomorrow (January 28).  I'lll share how this new road leads following...

max

hopeful and opt...
Posts: 1999
Joined: Apr 2009

Best wishes

Swingshiftworker
Posts: 1002
Joined: Mar 2010

Hope everything works out well for you. 

Josephg
Posts: 108
Joined: Jan 2013

I wish you good luck and the best outcome.

CC52
Posts: 92
Joined: Nov 2013

I hope the surgery went well today Max, and that recovery proceeds as expected. Best wishes Laughing

CC

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Got through surgery ok. Doc did not see anything surprising.  I did not see him after will ask if he was able to spare the nerves later.  Hurts very bad, looped on oxycodone at moment.   Thanks to everyone for kind wishes.  

max

VascodaGama's picture
VascodaGama
Posts: 2542
Joined: Nov 2010

It is wonderful to read your news post treatment. I hope you get better and that you return your membership card. I will be expecting to read more on your healing progress.

Best wishes,

 

 

VGama 

 

 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Vasco and all others,

I spoke to the surgeon today, before heading home from the hospital. He said that he was able to spare the erectile nerves.

I am on a cath/bag for one week.  I have had an odd sensation: I feel like the bladder is full all the time. This, despite the cath bag filling pretty fast, and they even did an ultrasound, which showed the bladder empty. One RN said it is most likely the balloon inside the bladder, but my NP said it is spasams, and she gave me a med for that, which has helped a lot. The doc agree with the sensation being from trauma and spasams, and agreed with the NPs perscription. He added that this feeling is very common immediatley after surgery.

The biopsy/analysis of the removed gland should be there when I go back in in a week.

In recovery, the RN said I was talking about a date I had had with Lindsey Lohan and Paris Hilton.  Talk about an hallunication !

max

.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

 

Went for my urologist's appointment today, exactly two months since surgical removal.

PSA: < 0.01, or "Undectable."  I had prayed and hoped for a "0.0," and got it...  The doc said that based upon my clinical particulars there is a 90% likelihood that I am clean of PCa for life now.

Continence is well ahead of schedule -- I wear only a very thin liner, and have very few accidents.

ED always lingers longer after surgery, frequently a year or more, even though he was able to do "nerve sparing" in the surgery.  I go back in three weeks to be tested with a needle injection of some sort, which I have not read about yet. 

I am quite thankful. Best of luck to everyone reading this in their own battle,

max

.

hopeful and opt...
Posts: 1999
Joined: Apr 2009

Great number......congratulations

VascodaGama's picture
VascodaGama
Posts: 2542
Joined: Nov 2010

Max, this is a wonderful moment. The expected truth; Remission.

They never say it 100% but I believe you are at the mark. Congratulations.

Regarding ED, I would suggest sort of daily massages or pumping and weekly Viagra to avoid “death” at the penile corpora cavernous. (http://www.medicinenet.com/script/main/art.asp?articlekey=3299)

Thanks for providing us one more party. Let’s get drunk.

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

 

Yes, I've already done a 12 pack of my beloved Pabst !

The doc recommends a "Trimix" injection in three weeks....what say you  ? (anyone)  I am wholly unfamiliar with Trimix.

 

max

Subscribe to Comments for "Please send Membership Card"