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Another newbie joins the ranks

PhoenixPhred
Posts: 6
Joined: Mar 2014

Hello in there.  I feel as though I'm walking into a meeting hall where people shuffle in one door, mingle for some time, and eventually leave at the other end.  I'm 69 years old, otherwise healthy, recently diagnosed with Gleason 8, stage 1c and a recommendation for prompt surgical prostatectomy to 'nip it in the bud'.  My frantic search for resources brought me here.  I've been reading the scores of posts and am impressed with the level of compassion and thoughtful intelligence offered by those who are further along in the process to us newbies.  So to start, I just want to say 'thank you', in advance.

kmclark1
Posts: 12
Joined: Dec 2013

It is unfortunate that we meet under these circumstances, but I have found this dicussion to be helpful and re-assuring.   My best advice is to be your own best advocate, do not be limited to a singular doctor, get your hands on a copy of all your records, and live your life to the fullest.   To quote an old footbal coach or maybe it was Patton "The best defense is a good offense."

 

Mike

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

Phoenix,

Welcome to the forum and I'm so sorry that you have to find yourself in this club. But now that you're here I am sure you will find much sympathy and information that you will find useful as you address this disease.

It would be useful if you could post other information about your diagnosis such as your PSA history, any other prostate related issues such as BPH or irregular urinary functions, and details about the biopsy that confirmed your diagnosis.  Any other health issues also impact on the types of treatment that might be best for you.

Frankly, I would be nervous about any physician that used a term like "nip it in the bud" when recommending surgery for a Gleason 8 cancer. Gleason 8 cancers are well advanced and surgery is often thought not to be an ideal way to address the issues of an advanced cancer becuase of the liklihood that it has spread outside the prostate gland or the possibility that surgery could cut across a cancerous margin and contribute to the spread of the cancer.  

Please consider getting second opinions from radiologists and oncologists on how to treat your cancer.  I expect that you will find very different recommendations among the experts about what the best course of action might be. 

I would also encourage you to educate yourself about the nature of prostate cancer.  This forum is a good place to start you knowledge journey but if you peruse several post postings you will soon have a list of several excellent books that you ought to study.

One thing I believe to be very important in dealing with prostate cancer is to know and fully understand the side effects of the various treatment methods.  No treatment is without potential serious side effects that can affect the quality of your life.  Surgery, in my opinion, carries more risk of side effect than any other common treatment and they include impotence, incontinence, penile atrophy, and  other risks associated with major surgery.  These are particularly relevant for a man your age and many surgeons simply will not perform surgery on a man older than 70.  Please think about your quality of life priorities as you consider your options and insist that doctors be open and honest with you in this area as they often tend to gloss over side effects.

Best of luck to you as you determine your next steps.

 

K

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

Welcome to the board.

I like the way you introduced yourself. Let us know more details about your case and "toss" the questions.

VG

Da Wizzard
Posts: 8
Joined: Mar 2014

Hi, 

I'm no expert but can recommend the following book as it helped me understand somethings about prostate cancer.

It was a quick educating read and basically in laymans language but it is also techinical to some degree.

Book Author = Dr. Peter Scardino, M.D.

Title = The Complete Guide to Overcomung Prostate Cancer, Prostatitis, and BPH

 

It's well worth the price and I suggest that you get a second opinion fron a Urologist pronto.....

Good Luck

 

 

 

hopeful and opt...
Posts: 1315
Joined: Apr 2009

Determining Gleason is subjective, so in my opinion is it critical for you to have a second opinion on the pathology of your biopsy by a world class pathologist who specializes in prostate cancer so that you are not under or over treated. Johns Hopkins is one, Boswick is another. Simply contact your doctors office and instruct them to sent the slides to one of these centers of excellence.

 I wonder if you have had any other diagnostic tests such as MRI T-3 or a pet scan, etc. the results of which may or may not show extracapsular extension . At any rate we can give greater insight to your case with more shared information.

We are here to help.

PhoenixPhred
Posts: 6
Joined: Mar 2014

Gentlemen,

Thank you for the warm welcome, and the early words of advice and encouragement.  I will post my numbers when I'm home again.  In the meantime, here's my personal history:  

69 y.o., 5'-8", 155#, neither sedentary nor uber-active, employed fulltime with crappy insurance, limited finances, using the VA medical system.  No extreme vices beyond nicotine addiction (stopped smoking 10 years ago, occasionally cheat with a cigar and I alternate among patches, gum & electronic vaporizers).  Healthy foods & lifestyle last 10 years, probably too heavy into supplements (always seeking the Silver Bullet).  Had developing heart, arthritis & COPD issues 10 years ago, all have subsided to near-zero with lifestyle change.  Reasonable pain tolerance.  I enjoy sex but no longer 'need' it; wife ditto.  Wife is a nurse; we've been together 3 years.  I'm an electrical engineer with the requisite investigative interest and 'cut-to-the-chase' approach to life.  I'm generally cheerful and upbeat, yet I take meds for depression.  I'm reasonably smart and forward-thinking, yet I have made a number of disastrous personal and financial life decisions that I am only now resolving.  I'd be delighted to last another 20+ years, will be grateful with 10, and intend to be running full tilt when I hit the wall.  I plan to work as long as it remains fun.  Just now I work because I must, and I'm grateful that it remains fun.

I can't afford to go outside the VA system; frankly I don't have a problem with them (other than the snail's pace of their processes).  My urologist is an outside contractor to them.  I've googled and snooped him: he appears to be neither a rock star nor a dud; 20 years in the business and 5 years/500 procedures with daVinci robot.  Favorably reviewed on Angies List (I have reservations about the commercial review services).  Seems like a solid guy.  The 'let's nip it in the bud' remark was mine, not his.  

I am one of those guys who will be treated in and by the mainstream medical system.  I won't be going to one of the centers of excellence, I won't be recruiting the finest surgeon or radiologist in the region.  I have had what now seems like a prescient interest in prostate health (saw palmetto and pumpkin seeds by the handfull) so I'm not clueless about my condition.  When my PSA shot up abruptly a year ago and I started clamoring for a urologist referral, I also read up on the various treatment options, their risk/benefit ratios, and the fallback options if the selected method proved insufficient.  When all the scholarly discussion is finished it seems to distill to two sets of choices which we really must make on our own:

1.  Decide whether you really have an aggresive form of cancer.

a.  Make a best guess as to whether it is still contained within the prostate.

2.  Remove the offending organ or treat it in place.

a.  Ensure there is a Plan B in case Plan A doesn't work out.

Well, that's me and this is where my head is at.  I'll post the numbers as soon as I can.  One more thing: I have tentatively scheduled robotic surgery for the end of April. if I'm gonna do this, I want to do it soonest.  I'll be making up my mind right up to the moment I walk into the hospital (or not).

Thanks for reading.

 

 

 

 

Swingshiftworker
Posts: 634
Joined: Mar 2010

Quote:

"When all the scholarly discussion is finished it seems to distill to two sets of choices which we really must make on our own:

1.  Decide whether you really have an aggresive form of cancer.

a.  Make a best guess as to whether it is still contained within the prostate.

 2.  Remove the offending organ or treat it in place.

 a.  Ensure there is a Plan B in case Plan A doesn't work out."

 

That about sums it up. 

 

"One more thing: I have tentatively scheduled robotic surgery for the end of April. if I'm gonna do this, I want to do it soonest.  I'll be making up my mind right up to the moment I walk into the hospital (or not)."

 

This seems pretty impulsive and quite dangerous.  As Kongo pointed out earlier, prostate surgery is risky enough even when you know that the cancer is still contained w/in the cancer BUT to undergo surgery when the cancer has already spread beyond the prostate NOT only puts you at risk for the consequences of surgery but also fails to deal with the greater scope of the cancer.

It's your life, but I hope that you are NOT serious when you say that you'll just make up your mind about going ahead w/the surgery when you walk into the hospital.  That sounds really cavlier to me and that kind of decison should not be made on a whim.  I hope you'll take the time and obtain the advice & info necessary to make a well thought out decision that will affect you (and your wife) irrevocably.

Good luck!

 

 

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

At your stage often rushing into anything is be a mistake.  It is also what most "Newbies" do in the beginning.  It was a mistake I made due to my error of judgement and the doctor's desire to fatten his bank account.  There is plenty of time.  Best of luck.  love, swami Rakendra

PhoenixPhred
Posts: 6
Joined: Mar 2014

Thanks to Swingshiftworker and Radenkra for adding your thoughts.  I believed that I had studied it all and come to the only logical conclusion, but your comments, added to those previously posted, make me wonder if I am indeed rushing.  These are my numbers:

PSA = 5.5.  My first readings 10 years ago were in the 1 - 1.5 range; slowly crept up past 2.5 until last spring when they went to 3.5, then 5.5.

Gleason:  (18) cores in 12 sectors.  All (6) on the right hand lobe and the upper (2) on the outer left lobe are all benign.  Inner left top: 3+4=7 (45%, 2of2 cores); inner left center: 3+4=7 (33%, 2of2 cores); inner left bottom: 4+3=7(10%, 1of2 cores); outer left bottom: 4+4=8(1%, 1of1).  All (3) of the inner left sample include "perineural invasion"; the outer left bottom does not.  The greatest cancer length is in the inner left top: 1.35 cm.; the least length is outer left bottom: .016 cm.

Staging:  Diagnosed as T1c: no palpable nodularity.

My reaction  to to the Gleason 4+4=8 has been to get it the hell out of me (surgery) before it spreads.  The "perineural invasion" suggests that it may already be spreading via nerve tendrils to the left nerve bundle (I understand this is the erection nerve set).  My thinking is that if the nerve-sparing surgery is successful, I'll learn to pee again and will learn to achieve erection again.  I hope the cancer has not spread, or if it has it is confined to the left nerve bundle and if so, I can follow the surgery with small(er) doses of radiation directed at this bundle only.  This thinking is based on the understanding that radiation can generally follow surgery, but that surgery generally cannot follow radiation.  And I must admit - I am fearful of radiation therapy.  That's a gut reaction with no scientific basis.  I fear it will have the same consequences as surgery, I fear it won't 'get it all' and I fear there is no fall-back procedure other than drugs if it fails.

I believe I should do something, and sooner than later.  That said, I welcome any advice to the contrary.  As has been pointed out, whatever I decide to do is irreversible.  Rakendra, you cautioned against rushing with the words "you have plenty of time".  Do I?  Thanks again.

Fred

Swingshiftworker
Posts: 634
Joined: Mar 2010

Fred:

Have you gotten a Second Opinion yet on your biopsy slides? 

If not, before you do anything else, I suggest you do that 1st.  Although you have been classified as a Gleason 8, which disqualifies you for certain procedures, you may actually be only Gleason 7 which would make you eligible for other treatments.

I had my slides reviwed by Dr. Jonathan Epstein at Johns Hopkins, who is considered among the best pathologists at assessing prostate cancer biospy specimens.  You can find info at the "Second Opinion" program there here:  http://pathology.jhu.edu/department/services/secondopinion.cfm.  And, here's a puff piece describing Dr. Epstein background and experience: http://www.hopkinsmedicine.org/hmn/F02/feature2.html.

As noted in the puff piece, the result of the Second Opinion could be HIGHER than the original assessment BUT, if that's the result in your case, you'll also have better infomation on what to do next.  The prognosis for a Gleason 9 is MUCH different than for a Gleason 7.

FYI, regarding surgery, there is a very high probability that you will NEVER be able to get an erection again after surgery (especially if "nerve sparing" is attempted because of botched attempts at "nerve sparing") and you are likely to be incontient for a signficant period of time following surgery which may also become permanent.  I have read many more "horror" than success stories in this regard and you can just troll through the posts here and on other PCa patient sites to see what I'm talking about.  So, I would caution you about rushing into surgery before fully assessing the risks of that procedure.

Not sure where your fear of radiation treatment comes from BUT the radiological treatment of PCa has seem many advancements in recent years.  IMHO, the best radiological treatment for PCa is currently CyberKnife Radiosurgery (CK)  Kongo, I and others here have been treated successfully with it without ANY side effects -- no ED or incontinence.  However, the men eligible for CK are usually limited to those w/a Gleason 6 or 7, T1c and a PSA less than 10. BUT, if you are at Gleason 7 (instead of 8), you may qualify for CK too.

It also is NOT necessarily true that you cannot surgically remove the prostate after radiation treatment.  Actually, a decision is usually made that it isn't medically necessary to remove the prostate after radiation because of the subsequent spread of the cancer beyond the prostate, which would make the trauman of removal unnecessary since the prostate can be treated w/hormone inhibitors and the cancer w/chemo or additional localized radiation treatments.  However, the prostate CAN be removed after radiation, if necessary.  It just isn't often considered necessary.

I know that it's the 1st instinct of many men, like you, to just want to get the thing (the prostate) the "hell out of me (surgery) before it spreads" but that may not necessarily be the best choice in your case.

Your PSA is only 5.5 and the PCa is only diagnosed as T1c.  The only thing "wrong" about your diagnosis is the Gleason 8 and you need to get a better handle on whether it really is an 8 or not and what steps you can take to treat this disease without making a decision that you may regret for the rest of your life.

Getting a Second Opinion on your biopsy would be a step in that direction.  Good luck!

 

 

 

 

 

 

 

 

 

hopeful and opt...
Posts: 1315
Joined: Apr 2009

Swingshiftworker is right on with his comments to you.

To add, the American Urological Association recommends a bone scan for patients with Gleason 8 and above. Ask your urologist to prescribe this test.

Additionally I recommend that you speak with your urologist about prescribing a Tesla 3.0 MRI for you. This test is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, any evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet. In my layman’s opinion it is advisable to have such a test before any surgery or another active treatment. If the cancer is outside the prostate surgery may not be the best decision for treatment

PhoenixPhred
Posts: 6
Joined: Mar 2014

Gentlemen,

Thank you for your continued interest.  I was under the impression that only surgery could determine whether cancer had progressed beyond the prostate itself and my present urologist (also a surgeon) didn't offer the additional testing information that you have. You have convinced me that I must get a second opinion.  I will get one and let you know the prognosis. 

PhoenixPhred
Posts: 6
Joined: Mar 2014

At the risk of seeming like a pingpong ball bouncing among treatment decisions, I am also looking into alternate therapies - not so much to avoid intervention (surgery and/or radiation, etc.), but as an adjunct to possibly weaken the cancer.  The very subject seems a bit wacko, but beyond the semi-religious hype about its benefits and evils, there appears to be a glimmer of science too.

Does anyone have an opinion/experience/reference regarding cannabis, circumin, and such?

hopeful and opt...
Posts: 1315
Joined: Apr 2009

Alternative therapies 

I do not use any alternative therapies, only therapies based on medical research. What I and many others of the posters here, have done is to change our life style habits so we are eating heart healthy and exercising regularly. Even those of us who have been diagnosed with Prostate Cancer are more likely to die from heart disease than this beast. Additionally various epidemiological studies indicate that a heart healthy life style is beneficially for avoidance of prostate cancer. I for one now am pretty close to being a vegan, no dairy, no meat, red or even chicken, and some fish on occassion (and  this is  less and less).

Here is a discussion about life style that you may find useful.

http://csn.cancer.org/node/236984

 

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

PP

Some guys have reported about alternative medicines but none has gone far to explain about the benefits in the short run. There is a series of books on products and diets claiming to be good against cancer. Some of these in fact are good because it addresses healthy issues making us to feel better, even if one just got the sense that is doing something over the PCa issue. At the cellular level there are noticeable changes and that makes doctors to recommend certain supplements. In PCa affairs, Pomegranate juice, Curcumin and Fish oil are the “wave”. Trials on daily Aspirin (100 mg) and certain low grade statins have shown decreases in PSA. Here you got a forum link discussing supplements;
http://ask.lef.org/7696/Supplements-and-Prostate-Cancer---Dr.-Myers-interview#bm8121

Treatments for prostate cancer are sort of primitive methods where one cuts off the “rotten” flesh or “burns" it for good. These are the only alternatives to get rid of the problem and most of the times are administered on guessing. They call it radicals. Surely in this “fight against cancer” damages will occur, so that one should consider about what is acceptable for living with because later one will never return to its previous status, even if cured. The young old guys newbies and healthy are the ones to suffer the most. Their aging process has just started, they may not want it but a series of health events may be developing in the background just at the age one wants to enjoy quality living.

Your above Two Sets of Choices are correct if based in diagnoses that have been achieved from the upmost ways in analyses. Doctors refer frequently to past experiences rates when recommending decisions which makes it difficult to be 100% certain that the cancer is contained. Many are also biased and recommend therapies of their trade (urologists=surgery; radiologists=radiation). They really try to help you but do not know or can assure you the perfect outcome.

Surgery in a case of existing metastases is done with debulking intent. It will not provide cure but it may extend life. Radiotherapy aims to destroy the DNA of cells. It will damage them indiscriminately. High radiation dose kill them all but at certain Grays, the “good” cells somehow manage to repair the “wounds” and strive. The “bad” ones die. The Gy dose and field are important elements and may be chosen to cover the whole area (though to be) infested with the cancer, or just to cover the areas less subjected to collateral damage. The later is usually combined with neoadjuvant hormonal therapy to turn the cancer more sensitive in absorbing the radiation.

Gleason rate 4 is for an aggressive type of PCa. These cells may produce lesser PSA serum, even in the presence of high volume of cancer. This is your case with 6 out of 18 positive needles, all with Gr4 grade. T1 stage is for the negative DRE but cancer was found on both lobes but if your comment on the “spreading via nerve tendrils” is found to be correct then you got a clinical stage T3.
You need to decide on a treatment the soonest. I would advance with all missing tests and image studies. You can also hold the bandit with an initial protocol of hormonal medications while deciding on a radical. This could be a daily Casodex 50mg pill or an agonist shot. HT would not alter or interfere with the decision of a later radical.

I would recommend you to get additional tests, not PCa related, to complement your present medical status. Bone health (DEXA scan), lipids (diabetes) and ECG (heart health) may be needed in future PCa medications. MRI and PET are useful now and can be used in future comparisons.

Here is a good book that may help you in understanding details of treatments with intent at cure. It is biased through surgery so you must disregard those “lines”, including the preferences given to surgery simple because it could be “salvaged” with radiotherapy later. Radiation could reach to that accomplishment in one initial goal, avoiding the risks of surgery;
“Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition)

Best wishes and luck in your journey.

VGama  Wink

 

Jacquet
Posts: 22
Joined: Jan 2013

I would definately get the 3 Tesla MRI, it will tell them a lot. My doctor was recommending surgery but as a confirmation had me get the high powered MRI. What it showed was that the cancer had not spread outside of the prostate but was close tot he nreves so instead of surgery they went with Radiation and HT. All is well now as PSA is unmeasurable and no surgery.

PhoenixPhred
Posts: 6
Joined: Mar 2014

I am going forward with the decision for a radical prostatectomy via DaVinci.  From here on, I guess this will be a diary/commentary - perhaps of specific interest to VA patients.

Status:  I am a VA patient; no alternative without selling the house (although Medicare may kick in once the heavy lifting begins).  The Phoenix VA hospital does not have a urology department and has a sluggish outside referral process.  Based on my abruptly rising PSA (3.0 to 5.3 in 12 months), my biopsy and diagnosis would probably have been 6 to 12 months earlier in the private community.  Diagnosis a/o 02/20/2014: right half = benign; left half = several sectors 3+4 or 4+3 plus one 4+4; possibly spreading via nerve tendrils.  I opt for cut and hope; if too late, then try some combination of radiation/hormonal/chemo for the next step.  I will follow VGama's well-presented suggestion and request a prophylactic Rx of hormone therapy while waiting for surgery.

Changes:  Upon making my preliminary decision for surgery, I asked my urologist to establish a tentative surgery date of late April: 8 weeks post-biopsy - the standard waiting period to allow biopsy-induced inflamation to subside.  I have since had a 2nd opinion (also a urologist) and have decided to have this 2nd doctor perform the surgery.  He is more experienced and I have a higher confidence in him overall.  I am about to ask the VA for permission to change horses in mid-stream.  Since VA has yet to formally approve the initial surgery request, this may prove to be an easy switch or it may really gum up the works.  If the latter, I may have to go the Medicare + out-of-pocket route for the surgery.  For selfish economic reasons, I prefer the VA path:  I am told that once they acknowledge a condition, they sort of "own" it and will continue sponsoring treatments.  I do not know their guidelines nor their limitations, but the copays and prescription costs are modest.

Reasons for changing horses:  The 2nd opinion urologist asked about my heart condition (fine except for left bundle branch block which has not been an issue to date) and scheduled me with a cardiologist for a pre-surgery sign-off.  He also intends to tookalook inside my bladder to better prepare himself.    He has privileges in most of the area hospitals; he uses his own surgical team and leaves the choice of hospital to me (and of course the VA).  All of these raised my confidence level.  None of these was discussed by the first urologist.  First urologist is deemed competent and well experienced, with good outcomes (whatever that means...).  However, he was adamant that the surgery be performed at a specific hospital, which has less-than-stellar surgical infection scores.  He didn't mention he is on the board there.  Not necesarilly a bad thing, but it put me off enough to seek a second opinion.  In the end it is just a 'gut' decision: I like #2 bettwer than #1.  That seems like a very solid foundation for a surgical decision, yes?

Notifications:  I have not yet announced my intention to my original urologist on the premise that he was good enough for me until I met someone better (this sounds like a romance story...).  If I cannot get a prompt surgery date with my preferred doctor, I may go forward with him.  It's a bit selfish, but I don't think it will harm anyone's checkbook in the end.  What I don't want to do is dither when there remains a chance that the cancer is still contained.

Sidebar:  My wife and I are taking a 2-week vacation in a few days.  It was scheduled before all this came up and doesn't interfere with the 8-week post-biopsy surgical waiting period.  We are going to an island in the Caribbean (it is GOOD to have a rich cousin) and I expect this to be a calming and restorative period.  The possible downside is that I won't be here to pester people and agencies to keep the ball rolling.  We'll see.

A continued thank you to all.

Fred

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