Another newbie joins the ranks

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 said:

Welcome

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

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 said:

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

 

 

 

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.

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 said:

My numbers

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

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!

PhoenixPhred said:

Gratitude

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.

 

 

 

 

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!

PhoenixPhred said:

Alternate therapies?

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?

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