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oncologist put options to me by life span expected my T2C how do I pick?

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Posted 2/1/2013 2:44 AM (GMT 0)
I am 70.5 , all my men kin have kicked it in by 75. dad at 68, all heart, no pc ever
I think I am stronger and healther though, My guess/hope is 80+?

If I expect less then 10yr then , no treatment required ? not recommended! not my choice either
else
RT(daily IGRT with IMRT/3D-crt) short term neoadjuvant/concomitant/adjuvant ADT (4-6 mo) +- Brachytherapy

If I expect greater then 10 year lifespan then
RPg + PLND if predicted probability of Lympf node metastasis >= 2%

or
RT(daily IGRT with IMRT/3D-crt) short term neoadjuvant/concomitant/adjuvant ADT (4-6 mo) +- Brachytherapy

He said I Pick by the side effects I can live with, radiation results have been very good. seeds have been amazing. Surgery is fairly final for Erectal Function. His clinic statistics has shown a 90% maintainence of function for radiation, but bowl problems, burning, frequency, etc

The surgery stats are amazing, laproscopic, in today out tomorrow, one doc!!
The doc says it is an out of body experience for the surgeon, he is very good and only 45!

it will depend on all the scans , he expects them to be negative but he gets a surprise once in a while and the T2C goes up! more to be scared about!!!!
But he said a lot of good doctors to help me and they are havig great results fighting this thing and getting me the time I need!!!
Posted 2/1/2013 12:08 PM (GMT 0)
I bet this is so confusing. I hope you give yourself enough time to make the right decision. The process of seeking 2nd and 3rd opinion, hearing the experts, having time to think about it, may all be helpful when making the decision.
Posted 2/1/2013 1:35 PM (GMT 0)
I've studied the illness for 3 years, read 20 - 30 books. PC is just so variable.most my family of men have their heart attacks and kick it at 74-75?
I would like to think I am in robust shape.but doc is concerned about my unexplained weight loss?
But I told him I don't eat much anymore, and exercise treadmill daily.
these are the 10 year lifespan protocol, if less then 10 then  procedures can be eliminated.


NCCN protocol, They throw everything at me but the kitchen sink because of the aggression factor I have.
1) radiation, seeds and Andregen protocol. lots of bad side effects but function can be saved.
    hair loss, burning on pee, bowel problems, pain.
    with time problems start to increase in some. delay effect of tissue diing.
but everyman is different , every cancer is different.
or

2) if I qualify and mets are at a they do laproscopi surgery here, in one day out the next,
   catheter one week usually.
   complete loss of erections. after surgery time heals wounds, all functions normalize except erections.
more cancer returning can then be treated with surgery radiation meeds.

the second option buys the most time, until death depart. with cancer
he also said protocol 1) would buy me the time, I could maintain function but side effects may be many.
 everybody is different and every prostate cancer is a different beast.

urologist has done 50 surgeries here and my neighbor is thrilled with it.
the onocologist said he is real good! age 44.

so I think the quality of life would be better with the surgery.
But I have a friend of a dear friend in Calif that does the laproscopic.
since my life is in his hands! I might trust him more.
Plus the one week of recovery I would have daughter and son-in-law.

very hard to chose huh???? radiation is an iffy field.
they do not do protons her, or cyberknife, or calypso. IMRT here.
seeds are stranded, they do about 3 seeds plants a year, most here chose surgery.
I am leaning to surgery now and never was.

rodg
Posted 2/1/2013 1:59 PM (GMT 0)
Find a surgeon who has done at least 750 surgeries. If the one you are consulting has only done 50 he is still in the very first part of the learning curve.
Posted 2/1/2013 2:10 PM (GMT 0)
I second what JNF just said. I wouldn't let an open surgeon work on me with only 50 surgeries let alone a Robotic surgeon. Pick a big hospital in a big city that has the Davinci if that is the way you decide to go. Call them up and ask for the operating room. When you connect to the operating room ask for an operating room nurse. Then ask the OR nurse who she would want to recommend if the patient was her dad, husband or brother. That will probably get you a good surgeon with the experience you need.

Good Luck with your decision
Posted 2/1/2013 2:51 PM (GMT 0)
Berdoo,

We'll give you a lot of advice here. Do remember that it won't hurt our feelings if you ignore it. Statistically, a patient is better off if he seeks a high-volume surgeon (someone who has done hundreds of procedures in his career and currently does four or five a week) but that is statistics. We haven't met your surgeon. We don't know your oncologist. We can give you perspective but it is your decision: not just in the "make your own bed because you are the one who will have to lay in it" sense, but because you've talked to these guys and we haven't.

When I was looking at surgery as an option I found it hard to put the issue of ED in any sort of perspective. I already sorta-kinda needed PDE5i drugs for sex before surgery and I knew that regaining potency after surgery was a long shot for me (maybe one in three). When I thought about the possibility of permanent impotence a line from the movie "Alien" would go through my mind: it's the scene were a character summarizes his situation "Whoa! Game over, man!"

What helped was looking at what other men here had done when they found themselves in that situation. I read up on injections and inserts, just in case. I convinced myself that the game would go on with a few new annoying rules. It helped me balance that possibility against the benefits of surgery as seen from my individual point of view.

I don't know if ED is a game stopper for you. You can do the same with other side effects that worry you. Look at the options that will be available to you if you don't get lucky on the first move in the game. It's a bit like looking ahead a few more moves in a game of chess.

If I were you I would tell them I planned to live to be 85. I could put up with the side effects of treatment if I knew that they were the price I was paying to see what happens a few more years out. Clinging to life once it can no longer be lived properly is cowardly. But, on the other hand, I never leave a movie early and there are lots of sub-plots in my life that I want to watch unfold.
Posted 2/1/2013 3:19 PM (GMT 0)
Gee, still some problems with what you are posting, of course, its your job to decide what is best for you. No one here is a doctor or even a medical professional.

However:

I would never go to a surgeon who only had done 50 surgeries for this. He is but a beginner, he may be a great beginner, but you are dealing with what is considered one of the most major and complex surgery.

You assume you will have ED if you have surgery. That is not a fact. Most men have some degree of temporary ED after surgery. Yes, there are men that have long term and even perm. ED post surgery, but its randomly distributed. And there are men, who have zero ED post surgery, I am one of them.

Also, you mention a week of recovery? I assure you, even with robotic surgery, you will need a whole lot more than a week of recovery. You may only need 24 hours in the hospital if you are fortunate and all goes well, but even with robotic surgery, you will be looking realisticially at least 2-4 months of recovery.

Most men are on the catheter for a week to 10 days but if there are complications, that may turn into 30 days or more.

Things aren't as cut and dry as you state, there are so many variables, and so much varies from patient to patient. There are no guarantees of any particular outcome. Reading about it in a book doesn't translate to how it will turn out for you.

If you are looking for the least amount of QOL issues on the front end, then some variation of Seeds might be the best option to look at.

However, radiation side effects can take months, even years to develop. Again, too many variables.

I know this is probably turning out to be one of the hardest decisions of your life, so keep doing what you are doing, study it closely, then choose wisely. There is no "re-set" button if you make the wrong choice, or if you make the right choice, and things turn south.

david in sc
Posted 2/1/2013 3:41 PM (GMT 0)
If QOL of life is a high priority for you and it was for me, at your age I question having major radical surgery. It's one thing to recover from major surgery at 44 and quite another at age 70. There are valid reasons many urologists won't operate on men 70+. In my 5+ years here most guys your age if electing treatment choose seeds for the QOL issue primarily and the fact as states above many won't operate at your age. My cousin at age 69 had seeds and two days later was playing golf. Whatever you decide take your time in choosing. There are no do overs. Also here's a tip and what I did. When you decide just take a week off and go somewhere do something whatever gets your mind off your Pca. Then after a weeks rest and a fresher perspective revisit your decision. If you feel the same go ahead without looking back. But IMHO your young doctors are giving you the best case scenarios of recovery but not the more common ones of men your age.
Posted 2/1/2013 3:43 PM (GMT 0)
http://www.mdanderson.org/patient-and-cancer-information/patient-care-essentials/your-first-appointment/index.html

Information that you may find useful, if you decide to go there.

It will be in the 70's all this week in Houston TX. cool

Post Edited (Sagittarian) : 2/1/2013 8:46:58 AM (GMT-7)

Posted 2/1/2013 4:10 PM (GMT 0)
Berdoo, You are probably one of the most informed posters i have encountered here on the PCA subject.
You are getting great advice from this forum as indicated by responses above. The surgeons experience is invaluable, as is the experience of the " treaters" of what ever treatment you choose.
I would not limit my self to any span of life, if so, go for 100, I am. If at the end, I die from PCA, I am willing to give the the "devil" its pound of flesh. I in no way would go for no treatment and just hope for what ever the fates allow. Personally, I still lean toward BT, IF, your stats are solid. Surgery is a strain on you body and the side effect of incontinence, is extremely dependent on your fitness level going in and the skill of the surgeon who makes the reconnection of the urethra. Good luck in your decision making conundrum. My edumacated guess is PCA, if treated by any of the options, will not be the cause of death.

PS. If the subject of your post is basically on the subject of the your initial thread, you do not need to give it a new header. I f it is drastically different, thats when you initiate a new thread, by clicking "new" post. If not just "reply" on initial thread with any new aspects of the Initial thread.
Posted 2/1/2013 4:16 PM (GMT 0)
Berdoo, I see the wheels are still spinning in your head at about 100 miles per hour! You're in that place that I like to call "paralysis by analysis" - but that's o.k.!

I think that David's (Purgatory) post from 9:19 AM this morning is 100% spot on - and would encourage you to read and re-read that post - excellent advise / guidance from one of the "Sensai's" out here.
Posted 2/1/2013 4:21 PM (GMT 0)
My sister, who is a physician, did some research for my husband and I about the point at which a robotic surgeon becomes proficient and she found that 600 surgeries was that point. I would look for a surgeon, whether open or robotic, who has done 600 surgeries.

My husband and I were told by the surgeons and radiation oncologists that we interviewed that in a very general sense, 65 years old is the cutoff age at which radiation (or brachytherapy) offers advantages over surgery. Radiation has less side effects than surgery. Surgery is often recommended to younger men for 2 reasons: 1)because you can do radiation as a backup if the surgery fails over time and 2)because any radiation caused secondary cancers tend to show up around 20 years after radiation. These 2 advantages are lost on older men. In addition, younger men are better able to tolerate and recover from surgery.

In our circle of acquaintances, most younger guys opted for surgery and most older guys did radiation or brachytherapy.

Post Edited (bluebird123) : 2/1/2013 9:52:25 AM (GMT-7)

Posted 2/1/2013 4:45 PM (GMT 0)
bluebird, great information on the number of surgeries required before proficiency can be considered, I would agree it's at least that 600 number - with any treatment option. Equally important would be how many done currently, and as I have stated many times out here - what are the specific outcomes of the practitioner you are considering. Global statistics are a good place to start, but I would also find out the exact stats for regression free, continency, ED, bowel - and also to define for example what "continent" means - i.e. "only one pad per day, or only drip/leak under stress or strain" is NOT continent!

I would also respectfully add to your input about surgery vs. radiation - yes, you can do radiation if surgery fails, but that doesn't mean there are no options IF radiation fails. Also regarding radiation as a cause of secondary cancers - here is some of the data I found when doing my research:

Right up front while there is a relationship between the potential for secondary cancer after radiation treatment for PCa, this should not preclude Brachytherapy as a preferred treatment option. We don't want the hysteria-effect to overshadow the reality of the chance of the occurence of a secondary cancer.

"© 2011 by American Society of Clinical Oncology - Prostate Brachytherapy and Second Primary Cancer (SPC) Risk: A Competitive Risk Analysis. Conclusion: Overall, we found no difference in SPC incidence between patients with prostate cancer treated with prostatectomy or brachytherapy. Furthermore, no increased tumor incidence was found compared with the general population."

"A large analysis of 33,831 patients who received radiation for prostate cancer did not reveal the presence of measurable risk for the subsequent development of rectal cancer [Kendal et al. 2006]."

"Epidemiological studies show a higher rate (5–6% versus 3.7%) of bladder cancer in patients receiving radiation for prostate cancer compared with patients who underwent surgery or watchful waiting [Moon et al. 2006]"

So then yes, certainly weigh this issue in as part of the educational process towards deciding on a treatment, but keep everything in perspective as well.
Posted 2/1/2013 5:20 PM (GMT 0)
berdoo,

still thinking about you.

I rarely make direct reccomendations, but based on your age, and the fact that you are a heart attack survivor (and I don't know if you have other health issues), I would be leaning strongly toward Radiation via Seeds. Probably be as effective on the cancer as would surgery, but spare your body the shock of going through a major operation at your age. And should give you a better break over the more serious side effects risks of surgery, i.e. ED and/or incontinence.

Either way, its our custom here at HW, to respect the treatment choices of our members, and will back you regardless of what you choose in the end.

david
Posted 2/1/2013 5:25 PM (GMT 0)
Aloha,
It all boils down to how long you want to live and how agressive your PCa is projected to be. My choice of EBRT caused serious difficulties, & 5 years later at 71, had bladder & prostate removed. I agree, choose a doc with lots of surgeries, hospital 7 days before passing gas (nothing by mouth), out in 9. It has been 6 months, I feel great, now I can work like a normal human.
Life is great,
Joe
Posted 2/1/2013 6:50 PM (GMT 0)
berdoo / rodj,

Like I said before it is your decision and we can't make it for you but, just in case you are keeping a tally, here's my two cent's worth.

Mark me down as another vote for brachytherapy as your primary treatment, along 6 months ADT and possibly adjuvant RT, depending on the results of the scans. I know you are leaning toward surgery. That is one of the reasons that brachy is such a good fit for you. It's a lot like surgery. Since the radiation is delivered internally the areas to be treated are treated thoroughly and nearby structures are largely spared. Your surgeon's one-day-in, one-day-out prediction sounds a bit like salesmanship to me. Waking up from a prostectomy feels a bit like being hit by a truck. You sound like a reasonably fit guy for your age and you would probably do OK with surgery but why put yourself through it when brachy offers essentially the same control of disease? It has a different time-line for when you can expect side effects and some of them do come later with brachy than surgery but they are comparable or better and don't involve the hit-by-a-truck thing that younger guys can shrug off quicker than the more mature ones.

Three seed implantations a year? Hmmm. Remember this mornings discussion about looking for a highly experienced surgeon? It would apply here, too.

Like David said, we'll stand by you with your decision no matter what it is. Actually, all of your choices are good.
Posted 2/1/2013 7:36 PM (GMT 0)
I concour with Peter.

Observation: Many here have 10-20 years to get to your age.

Posted 2/1/2013 8:40 PM (GMT 0)
a note from Chicago prostate, not good! scarey in fact!!!
I shared your email with Dr. Moran. He would recommend trimodal theapy (hormones, external radiation and implant) over surgery. The reason is because with your pathology the likelihood of needing post surgery external radiation is approximately 60%. And getting the radiation after surgery definitely increases your complications.

If you decide to go forward with trimodality treatment you could have the external radiation in your area (51/2 weeks) and then come here for your implant. ( 3 seed implants a year is not a good thing. We do 600-700 per year.)
Posted 2/1/2013 8:44 PM (GMT 0)
Berdoo,
Lot of good experience based advice coming your way here. I had DaVinci surgery in 2005 by a VERY experienced surgeon at 57 with absolutely no issues regarding ED or continence. My point being, if your doc is telling you that your sex life is over after surgery period, run, don't walk to another surgeon. My dad who was diagnosed after me?? in his mid 70's had standard radiation. Other than some fatigue and loose bowel issues during the treatment he has had no other issues. He is now 86.

Lots of options for you but I think the main thing to take away is that, whichever route you choose, make sure your doc has a LOT of experience. It can make all of the difference in the world in your QOL.

Post Edited (Jmon) : 2/1/2013 1:48:26 PM (GMT-7)

Posted 2/1/2013 8:59 PM (GMT 0)
Berdo:

I had somewhat similar stats (G 4+3) and chose surgery (by a world-class surgeon). I don't regret my choice one bit. Here is why I chose surgery. But keep in mind I was 63 at the time and in excellent health otherwise.

Let me point out that the outcomes I wanted in order of importance were:

1) Cure the Cancer (way out in front -- unfortunately I we failed in that)

2) No incontinence (succeeded totally)

3) No ED (a distant third -- I'd say somewhat succeeded)

The reasons I chose surgery:

1) SE are immediate but will get better. I did not want to have to deal with bowel or other problems a few years down the road and those problems might not get better.

2) If surgery fails, I do have SRT to fall back on (unfortunately, surgery failed and so did SRT)

3) With surgery, I get it out and they can do a thorough pathology so I have a very good idea what I am dealing with.

4) Surgery will still debulk the tumor. In my case, my PSA went from 4.19 to 0.01. Unfortunately, it did start climbing soon thereafter, but I think starting at 0.01 did buy me some time.

Anyway, that's just me.

In terms of the surgeon, I researched it a lot and narrowed it down to two. One was robotics, the other did either. While I preferred robotic surgery, I was totally going to choose based on who was the best surgery, as best I could determine. Incidentally, I did meet extensively with a radiation guy too. In fact, it was the same day, at the Univ. of Michigan Comprehensive Cancer Center. That day I met with a surgeon, then a radiology guy. I was then supposed to meet with a prostate cancer oncologist (Dr. Hussein, who I eventually did see a year later) but cancelled that as all my questions at the time were answered. The next day we met with the other excellent surgeon, Dr. Menon. He did my surgery. No regrets. I had ZERO complications and recovered well.

Unfortunately, in my case the PC may do me in...BUT NOT TODAY!

Keep in mind that I am not recommending any specific modality. I'm just communicating my own reasons.

Mel

Posted 2/1/2013 9:02 PM (GMT 0)
Berdoo:

I wanted to add one more comment: SLOW DOWN. At times, your posts run on and seem hysterical. You have to try and relax. Saying it will not do it, but eventually for your own peace of mind, you have to find the way.

I know for me, I get that way somewhat. Usually, I'll study the situation to death (poor word there), but once I make a decision, I am much more relaxed.

(Maybe I should say: do as I say, not as I do?)

Mel

Post Edited (compiler) : 2/1/2013 3:01:51 PM (GMT-7)

Posted 2/1/2013 9:22 PM (GMT 0)
Berdoo - sounds like you got a good overview from your communications with the Chicago Prostate Center. You should do the same with MD Anderson, and other recognized Brachytherapy treatment centers. In fact, IMHO you should start making appointments with some of these facilities to help you narrow this down. And if/when you do meet with medical professionals for God's sake take someone with you that will take good, detailed notes!!!!

I would think it would be pretty clear to you by now that with your stats and health history that surgery is probably not the path you want to take: Perineural invasion, T2C, your age, and most importantly the fact that you are a heart attack survivor would absolutely steer me clear of surgery.

Again - YOUR choice, no one else's, but at some point you need to start narrowing down your search and treatment options.
Posted 2/1/2013 9:42 PM (GMT 0)
berdoo / rodj,

If you found the note from Chicago scary try calming down a bit and reading it again.

It is a lot like my recommendation (above). Actually, it is a lot like the treatments I personally received for my cancer except that it substitutes seeds for surgery. I had DaVinvi surgery, ADT, and IMRT. He recommends ADT, IMRT and Seeds. I found the IMRT very tolerable. My main side effects were hemorrhoids which were managed nicely with medication. There is a small chance that it will cause bladder or bowel problems down the road but nothing like the chances that my cancer would come roaring back if I didn't have the radiation. I have to admit that I don't like the ADT at all but it is only temporary and it does make the surgery and RT more effective.

His trimodal treatment plan is aggressive but should offer excellent chances for long-term disease control with tolerable side effects.

And, didn't you have a sister in Chicago?

Just a few more things to think about.
Posted 2/1/2013 10:49 PM (GMT 0)
yes sir! sister and niece, great place to visit. Oak park! beautiful homes, great food. and he bluse I need da blues!!! I feel pretty good, just absorbing at this point. keeping most options on the table till all the scans are complete. The doc has a huntch they will be negative based on my path and psa! but he never knows. They have a really good program here, but Frankly Chicago prostae and MD Anderson and Loma Linda are heavy duty!!! big time. But I believe all doctors are great, and I'm sure experience helps. The uro here has done 50+ laproscopic but the ACS thinks it takes 250 to be proficient. My oncologist has done 500 imrt's but he has no calypso. MD Anderson is anxious to talk to me. That asked that I not do a MRI because they need a coil based one? and medicare won't pay for 2. Anderson has asked for a consent form , which I signed. They want to redo the path!! Thats great I want a 2nd anyway. very critical step. all my docs said take my time plenty of time to think. I must accept the side effects of the path I choose. One thing about Anderson is they plug you in and do it all, and place all options on the table and evaluate the best survival treatment. I like that. Loma Linda was different they will take the path as it stands. question how do they know there is a 60% probability of escape beyond the capsul? probably a math thing with psa dbling, gleason, stage, symptoms. I do have various infected nerve symptoms, above pelvis. My butt still hurts from the 16 core. and it's been 3 weeks???? Like I sat on a nail 6 inches long on a bench seat??? when does that go away? I took a codene/tylenaol last night and slept like a baby! Thanks guys you are real realy helpful. as they say been there done that!!!!
Posted 2/1/2013 11:00 PM (GMT 0)
also ED is not a game stopper for me, at 70.5 and allready have difficulties, which viagra is amazing. but hey, I can give that up and not be sorry. If the nerves are infected and they say they might be? But radiation does leave em be. My fear with surgery and I told the doc that, is to cut and still have to radiate. I WILL absolutely listen to the advice here. You guys have been there and done that. I am basically thinking when I write. I have an appointment after the scans for MD anderson. some of the docs are swamped down there. They can get me into protons very quickly if they decide. they can't do protons without a colonoscophy! gads, If it ain't one thing its another.
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