Multiple Opinions Received

Mike

Welcome to the board. Hopeful gave you excellent advice and he is questioning about missing data in your descriptions. You need a clinical stage to proceed with a decision on a treatment. Typically this is done adding image studies and bone scan results. Surely any other issue regarding other health problem and fitness will be considered in the decision.

The second opinions you have received may be confusing but they are needed and will help you to understand your status. My recommendation is that you should not rush without knowing the facts, the risks and future consequences. A young guy has much to lose in quality of living with radical approaches; however these are the only ones that can provide cure.
The side effects from treatments may become permanent nightmares. Such may be at lesser risk when the team of physicians and facilities we use are specialized in the care of PCa. Not just during the diagnosis process but in the treatment and in the period after that.

I wonder how you look alike at 350 pounds (160 Kg). You could be fit and healthy (like the young Sumo wrestler), but if you are obese the diagnosis exams and the way to treat become conditional. You would need to find that doctor who has experience in treating obese PCa cases.

http://theweightofthenation.hbo.com/themes/what-is-obesity

In obese persons surgery (RP) can be done but the convalescence period may take longer. The radiation (RT) is also subjective to the planning field. In any case, the positive DRE and Gleason grade (5) may suggest spread to which condition radiation treatment seems to be more recommendable. Surgery would be a choice to debulk the biggest tumour but not with intent at cure. The patient would require salvage RT latter. Cases of incontinence are typical in RP therapies. One will lose the possibility in fathering a child and the joy of sex suffers. RT may cause incontinence, proctitis and cystitis. It is not recommendable for patients with cases of ulcerative colitis.

I could not understand the meaning of your comment when you say “…and opening up the prostate bed to more efficient radiation…”. I wonder if the doctor is planning to dissect any obstructing tissues apart of the prostate gland. I never heard that surgery would turn a latter radiation attack more efficient.

Regarding the clinical trial suggested by doctor Partin, I think it as an excellent opportunity for you to consider deeply. Clinical trials are safe and free of charge and the patient is well looked after for years to gather evident data. In any case, you should get details about the purpose of the trial and its protocol: which chemo drug is used, and the type (EBRT, IMRT, etc), gray-dose and field of radiation. Certain chemo therapy drugs in PCa are well established so that one should not accept newer drugs.
There have been similar clinical trials for the combination therapies of chemo plus hormonal and hormonal plus radiation to treat advanced PCa cases, and the results were suggestive of higher benefits in the outcome.

You can read about trials using combination treatments in this link;
https://clinicaltrials.gov/ct2/results?term=prostate+cancer+Radiotherapy+Plus+Chemotherapy+&Search=Search

I would suggest that you get more blood tests to verify your health status (lipids, heart health, diabetes, etc). You should check for existing colitis.

A good book to introduce you to the problems of prostate cancer is; A Guide to Surviving Prostate Cancer by Dr. Patrick Walsh (third edition). You should prepare a list of question before meeting the doctors you are visiting. Your wife is the best counsellor/partner in making decisions.

Best wishes and luck in your journey.

VGama

Whisky,

You are off to a good start with so much professional imput from the doctors.  You write very well, and are obviously smart and engaged in figuring out how to win this  battle.  I would side with the doctor who told you that your clinical presentation shows very aggressive disease, and although PCa usually allows a lot of deliberative thought, you perhaps should move faster on deciding on an approach than most guys.  My personal experience with friends and one relative was that they all three died of the disease, one relative in his late 40s, and he was at MD Anderson in Houston.  Therefore, the old adage that "men die with PCa, but not from it," is not true in my limited, immediate field. 

All four doctors with whom I consulted when I was choosing treatment agreed that there are three things to consider when treating PCa:

1. Curing the cancer; 2. Urinary continence:,and 3. Sexual function.  And, they all added that "these three things must be prioritized in that order."   In other words, all else is mute, if you do not survive.  Actually, I have met people who disagred with this, and said they would "rather die than use chemo," or "Would die before they would knowingly use diapers for life."  It is their choice to make, and I respect them all.    But I have have stood at bedside and watched men die of PCa.  

Me, personally: with a Gleason of 9 and a sharp doubling rate on your PSA -- good sex a few years from now would not be my main concern.  It remains relevant and important, but it is definitely "#3." 

In traditional literature, most doctors I think would sugggest good, heavy radiation as stage one of your treatment.  But, I do not know how the weight issue skews this; I have never read about that as a complication (I am sure it IS a complication, I just have not encountered discussion about it in the little bit I have read).   I have heard of debulking, especially in breast cancer treatments and some other organ cancers (lung, for instance), but it is not mentioned a lot here at this Board.  Tumor shrinkage via chemo before radiation or surgery (this is called 'neoadjuvant therapy', and is common against advanced breast cancer) might be wise but would take time itself and will leave you weakened and miserable.  Taxotere (the most common FIRST chemo drug used against PCa for patients who need chemo) and the others are terrible drugs to endure, and their effectiveness agains PCa vaery widely.

Continue this dialogue with your doctors. Undoubtedly there is an "Overweight patients, Aggressive PCa" specialist out there somewhere.  Meet with a MEDICAL ONCOLOGIST also:  A doctor who treats PCa with drugs (chemo, hormonal, but not radiation himself; he might send you to a radiation oncologist as necessary).  A medical oncologist specializing in aggerssive PCa is going to end up being on your treatment team anyway. 

As you can see, the feedback you receive here has commonalities, but we all differ a little in emphasis, or how we read things.   You might view me as the guy whose position is summarized as "You need to get your **** moving."  I am not saying panic or become frantic (do NOT do those things), but the old truism that "You can take six months and meditate over all of this stuff" may not be really applicalbe in your case.

I pray for your success. I hope you stay on board, since newcomers who are very young with highly aggressive clinical results are a minority here.   The norm seems to be guys around 60 at diagnosis, with early-stage, somewhat indolent disease.

You mentioning phonetic use of "W" reminded me of my late father, since he was a retired FAA air traffic controller, and used to take me to work with him at times when I was a kid, and also because I currently work around law enforcement all night in my own current job. Dad received a wall letter from President Bill Clinton for 32 years of combined air-force/civilian service.   Also, I am a former fast attack submarine guy (weapons systems electronics), and the Navy has its own vocabulary full of acronymns -- sailors hardly ever speak straightforward, layman's English.  And what they do say is usually not printable !

max

WhiskeyMike said:

Additional Info

First of all thanks for all the information!  I have gathered up some more information to fill in some blanks that I had left.  But first of all, I just got off the phone with one of the Hopkins Dr's (Ross) who straigntened my head out from yesterday's information overload. Bottom line, is he feels the plan for sugery followed by likely radiation is a sound plan given my particulars, and offers me a good chance since I am willing to deal with the cumulative effects of the multi-modal treatments. It was a long phone call to get there, but he answered all my questions. So for tonight anyway, I am at relative peace.  I will meet with my original urologist Friday armed with all my research and lay out my thoughts. At the moment surgery is scheduled for Oct 22, so unless my regular urologist introduces new information I will be starting my pre-op activities. For you Max, suffice to say that my lady and I have been "making memories" at a furious pace.  I may just die before I even make it to surgery, but sheet, I'll go with a smile!

 

To answer some of the previous questions:

I cannot tell if Jon Epstein reviewed the pathology, it does not really say. But I kind of feel whats the difference between an 8 or a 9. Its serious business either way. Of course I'd have preferred the original lower value, but hey, I'd also prefer to have none of this!

Other tests. Bone scan, CT with contrast, lumbar x ray. all negative.

Weight. Think of football player, not michelin man. (OK former football player).  All I read showed no real weight "limits."  Some increased surgery time, and difficulty was shown though.  The info about big people having more agressive types, and greater recurrence in the future was there.  But I kept looking to see of the return of cancer to the bigger guys was only if they never lost the weight and corrected nutrition & excersise. I could not find anything that said they remained fat, or the incidence of the cancer returning even if they got healthier. One would think that would make a difference. I am choosing to get healthy regardless. Nothing like a subtle wake up call.

Side effects.  I'm not too worried. I am also not too proud to wear a diaper. I'll cross my fingers on the erectile function. The doctor I will probably use is big on rehab, I'll do everything I can to get it back. Additionally, see paragraph one. I'm stocking up, and those were not earthquakes last weekend.  Either way, survival is my first order of business.

Other blood tests good, no problems. Lipids could be better, but I'll get that.

Books & literature.  Yes, including Walsh and Mulhall. 

Biopsy: first interpretation said 3+5/8, 4 out of 12 cores positive, 15-20% involvement, periprostatic fat invasion, seminal vesical invasion, lymph - vascular, perineural invasion all "not identified."

Second interpretation: 5+4/9, 20% of specimen, seperate intraductal carcinoma of prostate, PNI invasion Identified.

I probably left something out.

You guys are great, thanks for the nice welcome to your club.. With luck I'll be sticking around a while.

 

Bill (aka Whiskey Mike)

PS. Max, I do the same thing as your dad did...  32 years and counting.

To be honest, as I understand, having radiation and hormone treatment will achieve the same results as if you would to also have surgery, without cummulative side effects.  There may be something that I am missing, can you let me know the logic that Dr. Ross has given for this cummulative treatment? What about Dr. Partin, what does he say?

Remember that urologist, in general recommend surgery, because that is what they do. Dr. Ross is a urologist.

I recommend that you find a medical oncologist the best that you can find and afford to lead your medical team. This is the doctor best qualified to administer hormone treatments. You will also, probably be able at this time to receive an inpartial recommendation as to treatment.

Bill,  I strongely believe that   surgery is a detriment for you in this situation, however, if you do decide on surgery first, so you will not be totally screwed, I do know about the  various surgeons who excell above the others, so I will mention an "artist" , a "rock star"  .  One who will make a difference between success and failure.There is a difference between surgeons.

 There are a few in the United States who shine above the others.......probably the one that shines the most is Dr Tewari, NYC. 

http://www.mountsinai.org/profiles/ashutosh-tewari

Basically you want an "artist" for each treatment type that you will receive.

Are  you aware of what to look for in a surgeon, or are you blindly following what is recommended by the good old boy network? ie. number of surgeries performed , surgical margins, support personnel, hospital setting.

..................

Heart healthy is prostate healthy......studies have shown that those diagnosed and treated for prostate cancer have less recurrance with a heart healthly diet......I for one have become a vegetarian, no dairy or meat............however I do eat fish on occassion. Others here also made changes. Some follow a mediterrain diet. There are a few books, The China Study by T. Colin Campbell and Eat to live by joel furman which you may wish to review. There is also a DVD that you might find at the library or netflicks  FORKSoverKNIVES. Generally, Prostate Cancer patients are more likely to live longer than the general population since we are likely to make life style changes toward diet and exercise, and not die from diseases such as heart, diabetics, etc which are epidemic in the USA. You are more likely to die from these disease than Prostate Cancer.

............................\

There are image tests that you might want to investigate Pet Scan, MRI to let you know what is going on, so you can limit your treatment choices to what is necessary, not superfluous

.......

Bill I know that I am an unknown layperson who you never met; not a fancy doctor at Johns Hopkins, making a million dollars a year or more,  but do yourself a big favor and get other opinions about treatment choice.

Best,

H

Bill (aka Whiskey Mike)

Thanks for sharing the details.

I also smiled at your comments and admire your positiveness in confronting the problem. From your words, it seems that you nailed the details and have reached to a decision. Confidence and trust is a leap step for the successful outcome.

I understand that ED (erection dysfunction) is an issue to you to which the nerve spare technique (you commented in your first post) could be a choice but such procedure is usually reserved to contained cases when one knows that cancer has not spread out of the prostate (and to the nerve bundle). I wonder if such procedure is recommended to you in view of what the doctors commented regarding the need of an extra salvage radiation, post surgery.
In fact the details of your diagnosis (Gs8, DRE, etc) and the comments from your doctors are suggestive of existing extra prostatic extensions. In such case the nerves surrounding the gland (the ones that control erections) should be dissected to warrant cure. Leaving them untouched would line the outcomes through ward future recurrences similar to RonDeF’s case above.

I believe that one should aim cure but it should also aim a post op life with assured quality. RP patients must realize that sex will never be the same and the young ones surely will miss it and have nostalgia of those lovely moments. Pumps, injections or Viagra and the alkies do not serve as substitutes.
I am 15 years “on the run” in those nostalgias. Surely I am still alive and kicking but the bandit is also still there demanding continued attention and treatments that will cause me additional risks and side effects. Minimizing these should be prioritized at the first steps when making a decision.

One note on the negative image studies is that the traditional CT, MRI, etc are known to give false negatives. I and Ron (above) and the other thousands of PCa patients had them negative but we were found having metastases.

Best wishes and luck in your journey.

VGama

WhiskeyMike said:

I'm taking in every word

I have read, and re-read everyone's input. I cannot thank you enough for taking your time to enter your reasoned and supported comments. I am listening to everything each of you are saying. That's not something I generally do on message boards; that is to give credence to all the comments.  

Today, I am going to just breathe. I happen to be a big fan of breathing.  Breathing is good.  In, out, repeat.  (Reminds me of an old joke. I'll spare you the agony since I dont know the audience well enough yet).  However, I am also big fan of mindfulness.  And lately, all this due dillegence has taken me off track and brought me to places I have no control, i.e., future worries, past regrets. So for this moment at least, there are chores that need doing in the garden and pullin' weeds is what I do best.

When I think about it, it is not all that different from PCa, really. Delete the bad guys, and make the soil happier for the good guys. I can watch the weed grow until it bothers something, or I can radically remove the offending growth by hand, with a power tool, or even nuke it with a spray. Heck, I can even do both. This time though, since it's my veggie garden I am referring to, I'm staying organic and no chemicals.

If only the rest of lifes decisions were so clear...

WM,

It is just too cool to me that you are a Controller. As I mentioned, my dad would at times take me or my brother to work with him, and we grew up knowing all of the men in the Tower.  He did most of his career at Charleston (SC), where the FAA guys control all civilian and military traffic (Charleston is both an International terminal and MAC Air Force Base).  His previous assignment at Robbins AFB in Georgia was similiar.  He talked in the first-ever C-5A landing at an operational Squadron (Charleston was the site of the first C-5 Squadron decades ago when it was a new jet). All of the three networks were there to film the landing, but a wheel flew off the jet, and flew down the runway, fortunately with no injuries.  Time to check the lug nuts !  A horribly loud jet, with a distinctive whine.  It is so large, that at a distance it looks stationary in the air, as if it is not moving.

Not trying to read anything in to your last post, but the Buddha wrote a major sutra (teaching passage) titled "In and out Breathing."  He also had as a core teaching regarding "Right Mindfulness."  I am not Buddhist myself, but studied it extensively in college.  All a coincidence, most likely.

I hope you choose to continue to keep us up to date.

First operational delivery: June, 1970.    http://www.aviastar.org/air/usa/lok_galaxy.php

max

WhiskeyMike said:

Post Op Update

Well, here I am one-week post op.  The doctor feels quite strongly that he "got it all" and at this point there will not be a need for radiation. I guess the follow up PSA will tell for sure. 

Every day post op I am feeling better, looking forward to loosing this foley, it is quite the PITA,. (Or is it PITP?)

So far, I feel as if I choose the right Dr and the right approach. For now it's one day at a time, but admission to Club Zero sounds good too.

Whiskey Mike (Bill),

Used to work at local airport so I understand your name.

I am so sorry to hear of your diagnosis.

I wish you the best of luck and a good recovery and long survival.

I was diagnosed with Stage 4 PCa in October of 2013.  I had a PSA of 69, and Gleason of 7.  I hade a radical Prostsectomy in Dec of 2013.  Pathology showed 40% involvment of the prostate with a prostate the size of a small orange, and one very small spot in one lymph node. No spread to the margins.  No spread to bones or any other place in my body.  As of October 2015, I still have a PSA of <0.010.  I went through 8 weeks of follow up radiation (40 teatments), and have been on Lupron (ADT) for two years.  I am now on what is to be my last 4 month Lupron shot (so we hope).  Now I will be off the Lupron, and we hope I will remain at a <0.010 PSA number.  If so I can stay off the Lupron. The side effects of the Lupron are rather nasty.  Make sure and research all of that so you know what to expect. I am 6ft 2in tall, I was at a weight of 210 lbs when diagnosed. I was a road cyclist and weight lifter.   So far I've been able to keep my weight pretty much under control, but have gained about 15 pounds from the Lupron.  Much if it is muscle mass, so they tell me.  I'm in Physical Therapy for the muscle weakness in my legs (from the Lupron).  I go to PT twice a week.  I also continue to ride an indoor trainer bike ( Schwinn IC Pro Spinner) for up to 100 minutes per day, plus I continue to do all of my weight lifting etc.  My trainer at PT has just put me on the weight macchines as of last week.  So, I assume I may gain a little more weight (muscle mass) before this is all over.  My Trainer and Therapist are laughing becasuse my thighs have increaded in size from what they are doing with me.  I had to switch to Relaxed Fit Jeans to get my legs the jeans.  My Oncologists are all starting to use the word Remission at this time.  They are now talking 10+years down the road as we make future plans.

So make sure you study everything you can.  Get started, as soon as you can, on a good solid exercise program.  My doctors had me back on a tread mill two days after my 5 1/2 hour robotic surgery.  Then I was allowed to get back on my spinner bike 4 weeks ahead of schedule.  I continued to exercise all throguh the radiation therapy, and have continued all through the two years of Lupron.  Some days it is very hard, but it has all paid off with good recovery and test results. 

It's a long, hard battle, but the harder you fight, the better you will feel.  Seeing progress day by day is the best medicine.  Find things you really enjoy, and do them.  Going for drives, looking at the scenery, enjoying the company and companionship of your significant other.  As I was told in this forum by another survivor, enjoy every day, one day at a time, and look for things to celebrate.  The simple things are the best. 

Best wishes for a speedy recovery.  May you soon hear the word REMISSION from your doctors.

Peace and God Bless

Will

Max Former Hodgkins Stage 3 said:

Super

W-M,

Very glad the operation went well.  The pathology study gives an excellent read of whether all of the cancer was removed, so you should become an "Undetectable" on your PSAs.  

When my cath was removed, the RN got a "spray," so watch out for that !

 

.

Bill,

I believe that your doctor's comment is based on the pathologist's report. They may have found clean margins and no extra prostatic extensions in the specimens (prostate, seminal vesicles, nerves and lymph nodes). The PSA will add more information to the status. Typically the body takes about 10 days to clean those "pieces" of circulating serum, providing a reliable test from blood samples obtained after two weeks.

Adjuvant radiation is usually administered three months post op to allow healing. In any case one would not loose much if the rads are applied latter as a salvage treatment within 18 months. The radiation provides cure by disrupting the normal life cycle of cells. The achievement is equally successful if the rads are administered the soonest, however, recovering tissues at the sphincter, urethra and nerves may be damaged if not allowed to heal fully.

Best wishes for full recovery and to a remission level in the PSA (<0.06 ng/ml).

VG