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Making Decisions Regarding Surgery

pwright613
Posts: 2
Joined: Apr 2010

TO EVERYONE OUT THERE, BEFORE YOU MAKE A DECISION TO DO SURGERY FOR PROSTATE CANCER THINK VERY VERY VERY VERY LONG AND HARD before you proceed. The quality of your like will be significantly down graded. TAKE IT FROM ME I am not speculating, I am stating a fact,this is a bad decision and if I had this insight that I am now proving I would not opt for surgery. I know it IS A bad DECISION. That was my decision and I think it was a terrible decision all because I bought into the hipe and I am yet to see any of the benefit. The hipe about robotic surgery is complete non-sence. I personally did not benefit from any of the benefit described.

Trew
Posts: 892
Joined: Jan 2010

Wish you had given us a little more background to your case. Personally, I am not a big fan of surgery any more, either. That is also after the fact.

A lower gleason and proton therapy would have been my preferred route.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Sorry to hear you had a bad experience with surgery. Many do not have a bad experience me for one. Most often it has a ton to do with the experience and skill of the surgeon....also at what stage you are with the desease. Can you give some further information...here's mine:

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
da Vinci 12/29/09 - Dr. Hollensbee & Scott
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
Virtually Pad free 2-20-10
Next PSA scheduled for 5-26 Results 6-2-10
Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery had usable erections. Currently only need ¼ pill to get usable .

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

how experienced was your surgeon, how extensive was your cancer. Experience is an excellent teacher, perhaps you can enlighten us as to the details.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

You (hisname) made the right choice for you... I have no more cancer, because I had it removed....every less than zero PSA I get is confirmation of that...

Swingshiftworker
Posts: 657
Joined: Mar 2010

I haven't had any form of treatment yet, but I agree that the risks of surgery are so potentially debilitating that I'd only consider it as a LAST RESORT.

I also think that the fact that the medical profession continues to promote surgery as the "gold standard" for the treatment of "young" men (like me) with early stage PCa (like me) is not only counter-intuitive (ie., it doesn't make sense) but is also borderline fraudulent, given proof that non-surgical treatments achieve equal results with such patients with fewer quality of life issues. I've stated this opinion here before and and I'm glad to hear from someone who has actually received the treatment who is willing to speak out against surgery as the "obvious" FIRST course of action.

I'm not saying that surgery might not be necessary for some people, especially for those with more advanced cancers who are unlikely to be helped by less invasive procedures, but for early stage PCa patients, surgery is entirely unnecessary when there are other proven forms of radiation treatment that yield equal results without all of the negative quality of life risks that surgery presents -- namely prolonged incontinence (necessitating the wearing of pads and diapers) and ED (necessitating the use of ED drugs and penile injections) -- and, in the worst cases, the need for penile and/or urinary sphincter implants.

So, I agree. If you are considering surgery to treat your cancer, think "LONG AND HARD BEFORE YOU PROCEED" because the "cure" of surgery can sometimes be much worse than the disease itself.

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

Like Swingshiftworker, I have yet to decide on a course of treatment but have determined that surgery is not a course I am likely to puruse. For men with early stage cancer (Stage T1, PSA < 10, Gleason <7, and small involvement) the literature is pretty clear that there is no difference in outcome between radiation and surgery with respect to survival rates at 15 years. Active surveillance also has high survival rates only slightly behind surgery and radiation. I have consulted with five specialists in the month since my diagnosis and they have all reiterated these facts yet my urologist and one oncologist both recommended surgery because of its ability to eliminate cancer with a low chance of recurrence.

What the doctors I've consulted with are reluctant to talk about it unless pressed are the side effects of surgery. Almost 50% of men with surgery have some sort of incontinence issues, either outright loss of control or occasional stress incontinence. A high percentage have ED issues and many remain completely impotent, particularly if the cancer site is near the apex where most of the erectile nerves are. The measure of sexual potency following RP is "the ability to achieve an erection sufficient for penetration at least once a month." (Huh? Once a month?!!) As indicated by many, many posts in this forum many men cannot achieve an erection post surgery without pumps, injections, implants, or Viagra-like drugs. There are also issue with the atrophy of the penis, the apparent shrinkage of the penis due to the shortening of the urethea when the postrate is removed which tends to draw the penis up into the body. There's also the sterility issue, the dry orgasms, and the difference in orgasms without the prostate spasms that men without RP enjoy.

I know many, if not most, men who post here have had the DaVinci surgical procedure and seem happy with it yet a recent study of over 9000 men in the Medicare database indicates that robotic surgery leads to higher incidences of incontinence, ED, and nearly twice as many urinary and genital issues as open surgery. http://www.webmd.com/prostate-cancer/news/20091013/robot-prostate-surgery-more-ed-incontinence

One of my doctors told me that "this isn't going to kill you, but at your age you will eventually need to deal with it." At 59, she meant that given the histology of PCa and even the relatively long PSA doubling time and low PSA velocity that I have, at some point I will need treatment. I would rather have treatment while relatively young than later when some other unforseen issue may preclude an option.

I am considering Novalis Tx 5-day radiation treatment, Cyberknife (both are essentially the same procedure), and Proton therapy and will complete my consultations this week and then make a decision about what I think is best for me. Certainly, radiation has its downsides with respect to incontinence and ED but at much, much lower rates than surgery. The new technologies represented by Novalis and Cyberknife deliver the radiation at sub-millimeter accuracy which minimizes the potential damage to the colon, seminal vessels, bladder, and erectile nerves surrounding the prostate. But there is still risk.

I also investigated cryosurgery, hormone blockage, HIFU, tomotherapy, and homeopathic courses of therapy.

I would never question a man's decision in combating this disease as long as it was made deliberately, with his eyes wide open after doing the requisite research. We are all different and each of our cancer paths is unique. We all view the world from different perspectives. One may want the cancer out of them while another is comfortable with it inside knowing that it is slow growing and though 1 in 6 men will get PCa, only about 1 in 35 will actually die from it.

We don't get any Mulligan's on our decison so we need to be informed and knowledgable when we make it. But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen.

Diagnosed March 23, 2010
Dx PSA: 4.3
Gleason: 3+3=6
Stage: T1c
1 of 12 biopsy cores positive with 15% involvement
Perineural invasion not seen
Prostate volume 47 ml
Bone scan, chest x-ray, and blood panel negative
DRE normal
PSA density: 0.092 ng/ml/cm3
PSA velocity: 0.23 ng/ml/yr
PSA doubling time: 9.28 years
No physical symptoms or issues with urinary or sexual function

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Kongo said something in his comments that I think we all need to keep in mind as we make our own posts:
"But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen."

This is so true. Each of us has our own circumstances, our own thought processes. For example, I could have gone the Active Surveillance route, but I know the way I am. Waiting for those test results every few months would have been brutal for me. Even though my numbers were low (2.9, one core positive), my post op path report showed that 35% of my gland was cancerous. So for me surgery was the right course. I am 47, married for 20+ years we have two kids (19 and 16), no plans for any more. I have had some minor incontinence issues and some minor ED issues (meds work great). So I am pleased with my choice.

That may not be the right choice for everyone, we have so many factors to weigh. Age, general health, family, PSA level, biopsy results, what treatments are out there, what will give me the best chance for recovery with the least impact.

We are all brothers from a different mother as they say, united by something that I know each of would rather not be dealing with, but yet here we are.

Let us all continue to support one another, be there for one another, pray for one another. I thank God every day that I was able to find this group and talk to others who are experiencing these same problems.

God Bless and Good Luck to all of you,

Joe

JR1949
Posts: 230
Joined: Jun 2009

I apree with what you said. Everybody has their own circumstances and you need to weigh all the factors like your age, the gravity of your PSA and involvement of the cancer monster, biopsy results, general health. I was 60, I had a PSA that rose from 19 to 22 in about 3 months and biopsy 12 pin with all 12 cancerous. Thus I decided on RP surgery. So for me it was quantity of life not quality of life. I have 3 grandchildren that love me and I want to see them grow up. I believe I can beat the incontincy and if I cannot beat ED, my wife of 36 years, God bless her, has told me that we have had a good sex life for 35 years and if we cannot have sex again, that she will still love me as much as she always has.

I am thankful that I found this group for help, support, ideas, etcetera.

Good luck to all of you in this discussion board

steckley
Posts: 100
Joined: Aug 2009

You mentioned that this method minimizes damage to the seminal vessels,erectile tissue, etc. I am guessing you feel, based on your biopsy, scans, et.al., that these areas are not cancerous.

Based on what I've read, biopsies numbers are often times upgraded (ie. the cancer is more widespread, aggressive, in the seminal vessels, etc.). The biopsy numbers were low due to the limited extent of biopsy sampling. This is usually found post-op when the pathologist slices and dices the prostate .... and a back up plan is developed (i.e. SR).

If PSA increases after Novalis what is the back up plan? SR?

Also, I agree that you should treat the cancer while you are relatively young. Watchful waiting did not make sense to me .... In my mind it was like giving the cancer time to establish a beach head in my other organs ... while I grew old and less able to fight it.

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

I do believe based on the pathological evidence in my individual case that the cancer is confined to the prostate. With Gleason <7, PSA <10, and stage T1 the odds of it having moved beyond tghe prostate capusle are less than 1%. I am having a second opinion on the biopsy but I do realize that many cancers are upgraded after removal.

If Novalis or Cyberknife "failed" I suppose a backup plan would be cryo but I am pretty confident that in my case at least, the radiation will get it the first time around.

Swingshiftworker
Posts: 657
Joined: Mar 2010

Kongo, FYI, I was advised by my CK specialist that, if CK fails, he would recommend brachytherapy (BT) as opposed to Cyro because Cyro is certain to cause permanent ED.

BT has it's own problems, of course, but between BT and Cyro, it is the least detrimental alternative. If BT fails, Cyro is still possible, as is, salvage surgery (depending upon the amount of tissue damage caused by the radiation) and HIFU (if you can afford to pay for it yourself since it is not yet covered by any insurance carrier in the USA).

This all assumes the cancer is still confined to the prostate. If not, then chemo and EBRT would probably be mandated depending upon where and how far the cancer has advanced.

Let's hope we never have to address these alternatives!

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

All good points, Swing. I guess for me, I believe that the overwhelming research shows that for early detect, low grade cancers like mine seems to be, just about any type of radiation works fine achieving over a 93% success rate. While the long term evidence for Cyberknife is still sketchy, its comparison to HDR Brachy and other dosage protocols strongly suggest similar success.

Interestingly, 23% of all surgeries require a radiation follow-up within two years.

I'm leaning toward Cyberknife now after my consultation yesterday.

jjt93000
Posts: 1
Joined: May 2010

I see a lot of debate going on about surgery vs. radiation. Has anyone been pitched right out of the gate surgery, radiation, hormones and possibly Chemo all from the get go as I was from a prominent cancer institute in Boston. I was recently diagnosed. T3, PSA 37 Gleason 8, 10 out 12 cores, Clean Bone/CT scan & MRI age 43, I could get more specific but you get the idea. The chemo thing is just a suggestion and I’m not really thinking too much about that now but it’s the surgery I’m having trouble with knowing that radiation and hormones are pretty much a definite for me. Again I have been told about how there is no evidence that mixing in the surgery will make my chances any better and even they tell me that it is overkill. I just keep getting that at my age they want to do all they can to increase my chances even though there is no evidence it will. I know there is always a chance of needing radiation and hormones after surgery but I am being told it’s not a chance I WILL and DO need it and I agree that I do given my situation it’s just the surgery I am having trouble with when I KNOW radition and hormones are in my future anyway.

hopeful and opt...
Posts: 1360
Joined: Apr 2009

"One of my doctors told me that "this isn't going to kill you, but at your age you will eventually need to deal with it." At 59, she meant that given the histology of PCa and even the relatively long PSA doubling time and low PSA velocity that I have, at some point I will need treatment. I would rather have treatment while relatively young than later when some other unforseen issue may preclude an option."

Two doctors that I spoke with at ucla have a different opinion based on my situation which is very similar to each of you.

Based on this input, you both probably have indolent cancer, that is not like to spread, and you probably require no other treatment than watchful waiting in a qualified active surveillance program........I just enrolled and was accepted in one at ucla, join me.........the biopsy is three dimenisional, before each biopsy is a mri, and a digital rectal and psa on a regular basis.....there is an mri and biopsy on an annual basis for the first three years,with an extra one in six months of the first year.

The program that am in is a research directed, and one has to qualify to be accepted.

Ira

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

Interesting perspective and one that I have leaned toward frequently as I go back and forth with my decision. One question -- I seem to recall that most men who pursue AS are older and that 30% of them end up going for some other treatment within the first two years. My supposition is that the younger the patient the more likely there will be a need for some form of treatment but haven't actually seen that in any study. Are you aware of any studies that track the age of the man instead of just the stage and symptoms?

hopeful and opt...
Posts: 1360
Joined: Apr 2009

I would think that the primary date from the studies that were done include the patients age, and other criteria.......I guess if you are interested in age you can contact the doctors who did the study(s).

True..........a large number of patients drop out of active surveillance programs........I think, mainly because the stress can be great when one does the active surveillance, and influences of others who have choosen other methods. Also some take longer to make a decision.

In the studies that I read it says that these men dropped out of the active surveillance program eventhough they were still quailified to remain in the study.

Yes.......I also believe that active surveillance is more appropriate for those who are older, that older people are more likely to die with the disease than younger people, but I also believe that active surveillance is a appropriate for many men who are younger.

Kongo, remember once you have radiation you cannot go back to active surveillance, but you can choose radiation or another treatment option after active surveillance.....for example you tend to like novalis.....the procedure will be more established in a few years.

Ira

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

Ira, I hear you loud and clear.

AS is the only option that keeps most treatment possibilities open as you go forward. On the other hand, many studies show that the earlier you treat the disease the better the prognosis for long time cure. The really tough thing about PCa is that there's a downside to every single option. Even with AS and a disciplined monitoring routine, you run the risk that the cancer will move outside the prostate and if that happens, your treatment options become very limited.

The factor that is driving my decision is that surgery, radiation, and AS all have similar long term survival statistics...with AS being slightly less than either surgery or radiation which both have close to 99% survivability for T1C, PSA <10, Gleason <7 cancers. Realistically, I would be astonished if the disease didn't progress in the next 20 years or so. The strong liklihood that I would eventually have to seek treatment is the only thing that is keeping me from AS. Once I made that call, it became a matter of choosing the course that had the least onerous side effects. Surgery seemed to me to have the highest potential for negative side effects without offering any better long term survival than radiation. Although radiation also has its share of side effects, they are generally less severe and more treatable than complications from surgery. On the other hand, should radiation fail...there are diminishing options for treatment.

Would love a crystal ball but I'm not one of those who is sitting around in agnst worrying about the cancer inside of me thinking I have to GET IT OUT OF ME NOW although I appreciate that sentiment in others. It's just not me. Now that I understand PCa about as well as any layman can I don't fear it or fear the unknown. I don't feel rushed. I just want to move on and not have follow-ups and the possibility of having to do something hanging over my head while I make plans for other things.

hopeful and opt...
Posts: 1360
Joined: Apr 2009

True, no treatment is a good one. I choose active surveilance , and hope that I will have a better quality of life than if I choose a different treatment that is likely to have side effects, both short and long term.

"Realistically, I would be astonished if the disease didn't progress in the next 20 years or so. The strong liklihood that I would eventually have to seek treatment is the only thing that is keeping me from AS"

(Disease with men on active surveillance can progress)

This is where we differ.........I believe that even if the disease progresses, I can make treatment at that time.

In the article that I listed about active surveillance, it was discussed that many men died with the disease, not from it.

You went to experts in different disciplines such as radiation , proton, etc......Did you go to an expert in active surveillance?

Ira

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

I did talk to an AS expert. One is the author of The Big Scare: The Business of Prostate Cancer. Anthony Horan. Very good and knowledgeable but he seemed to have an axe to grind with the medical establishment for what he considers an epidemic of over treatment, particularly with respect to surgery. Also spoke with an oncologist who felt that I was a strong candidate for AS but he agreed with the radiologist that told me I was going to have to deal with this at some point. I have not spoken with a specialist that deals only with AS like you seem to have found at UCLA.

hopeful and opt...
Posts: 1360
Joined: Apr 2009

I have not read this book, but I agree with Anthony Horan......I also believe that there is an epidemic of overtreatment........I had a side conversation with the surgeon at ucla who said that many docs in the la area are finacially motivated to do over treatment......when I read betweem the lines in this forum I come to the same conclusion for some of the posters....my take.

To be honest, I may be very strongly advocating active surveillance because this is what I am doing now,,,,,and maybe i'm justifing my decision....who knows.

I wonder, if you did consider active surveillance.......how long a time frame would you be comfortable with? 1 year, 5 years?. ,more or less?

Ira

mrspjd
Posts: 693
Joined: Apr 2010

In one of "swingshiftworker's" posts in this thread, he states: "I'm not saying that surgery might not be necessary for some people, especially for those with more advanced cancers who are unlikely to be helped by less invasive procedures..."

RP surgery is especially NOT indicated in advanced/high risk PCa (some T3b's and most all T4 clinical stage PCa) and if a doctor has recommended RP for those stages, it's time to get some other opinions, change doctors and start doing your homework!

chitown
Posts: 90
Joined: Mar 2010

My father had massive mets by 57 and he died a very painful death at 61. My uncle (mother's brother) died before 60 in a similar way. I am 48, gleason at 3+3, had no symptoms, PSA of 2.1 and a palpable nodule during DRE led to a biopsy. Found 6 of 15 core cancerous. Left, center and right lobes.

Going for a da vinci surgery in June. Am very healthy and athletic and going with a very positive mind for surgery and recovery, followed by long, fruitful and healthy life.

We all have different stories and plans, but we are all brothers needing support for each other more than we think.

bdhilton
Posts: 759
Joined: Jan 2010

I was not going to comment on this one but perhaps this is some twisted entry…think about it “p wright”…Just negativity with no details or response to the groups inquiries…

If not, sorry but I would suggest some counseling…just my 2 cents...best to all

Swingshiftworker
Posts: 657
Joined: Mar 2010

The initial post by P Wright very well could have been a troll, but I don't see any point in attacking the the poster.

Trolls are very common on all forums and, if you don't rise to the bait, nothing will come of it. In this case, it has just brought out comments that reflect our own biases (both positive and negative) about surgery as a treatment option, but this conversation has not been personally antagonistic (only the attacks on PW have been). If fact, a discussion of our "brotherhood" has developed out of it the thread, which I think is beneficial for all of us.

So, rather than calling P Wright out, I think we should thank him for initiating the discussion about the risks of surgery and for the resulting conclusion that we are all in the same boat together, despite which treatment we individually choose (or chose) to use to fight our battle with prostate cancer.

Thank-you, PW!

pwright613
Posts: 2
Joined: Apr 2010

Making Decisions Regarding Surgery
BDHILTON’s, ridiculing PWright’s comments regarding surgery as an option for prostate cancer treatment, is indicative of one who has something to lose, other than a prostate. BDHILTON, you need to be more prudent with your feedback and you can learn how to do so, by reading input from Kongo and Swingshiftworker. If I wrongly insinuated your prostate situation, my apologies and you can completely ignore the comments that you describe as negative, then proceed with you surgery option. Good luck. You may have better luck than I did.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I have to agree with BD....You offer nothing but negative about surgery yet you still have not told your whole story..when the rest of your story may be the cause of the outcome...what was your pre-surgery stats....how experienced was your doctor - How many da vinci's did he perform...if you say less than 300 or even 400 there is a huge learning curve on that which I am sorry you did not research out prior to choosing? See now, I am just assuming that...look how stupid that makes me look. However, those two things alone you fail to comment back to multiple inquires...based on that I guess no one has any reason to believe what you post - simple logic. It's pretty presumptious of you to say surgery IS a bad choice....when what you should have said was, "Surgery with who I choose and for me was a bad choice." Sorry I call it like I see...always have and always will ...life is too short. You can read many stories...on here and in factual books of successful surgeries with prostate cancer...I was one.

Randy in Indy

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Pwright613,

Your advice to think long and hard really hit home. Thank you, because this forum helps everyone to do exactly that! I did indeed think long and hard about those options, including HIFU, radiation and watchful waiting (active surveillance)... which I was actually doing for about six months before settling on a choice that was right for me.

I chose laparoscopy surgery to remove my prostate. That was done in November 2007. I'm sorry to find out that it was a bad decision for you. However, I'm thankful that it was certainly the right one for me. My wife is thankful too.

Len

griff 1
Posts: 114
Joined: Jun 2010

i do feel bad for you pw613 having complications and such on your surgery, but like they all say whats good for one might not be for the other. i hope you pull out of this and have a good life.

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

That's a pretty bold statement. I have seen (it seems like one million posts...) and I don't get this sentiment. I've tried to rationalize with this understanding and come to terms (and respect...) the decisions that many of us make. When you state that surgery is a bad decision...you arbitrarily are making a statement that I've made a bad decision. My decision was prostatectomy via Da Vinci. Worked best for me and my situation...trust...I did tons of research. ALL alternatives have their drawbacks. It is my belief that our jobs here are to help those that are uninformed become educated to make the well-informed decision. I was diagnosed in March 2010...Age 40 (...yes my jaw hit the floor on the diagnosis...utter disbelief...), PSA 2.2, Free PSA 10.3, positive biopsy (5/12 cores), right mid; 2 of 2 cores- 3+4 (13% of needle core tissue), right base; 1 of 3 core - 3+3 (7% of needle core tissue), and left mid; 2 of 2 cores - (2% of needle core tissue) - Pathological Report - Gleason 7, Clinical staging - T1C. Consultations stemmed from providers performing Proton Therapy, Radiation Therapy, Cryotherapy...from Miami Florida to New York City. All consultations resulted in this for my own well-being - I could have chosen ANY treatment, but if I elected removal as a second choice...there would have been no turning back to use it as an option later on. Surgery was performed 29 Apr...I was home on the 30...the following week on wednesday (7 days later...) the catheter out...life is good. As expected, I am experiencing incontinence, but each day it gets better and better...don't know about the ED yet... but currently "the man" appears responsive. (...Who wants to get with the "get down" a week after surgery anyway...) I continue to get better each day...(The day after the surgery...I walked for 1 1/2 miles....., I taught my 5 year old how to ride his bike the day after...) With the way things are going...i'm optimistic that this will be a success story. My only challenge initially...finding someone (the best) to perform the surgery and advocate my well-being for the best outcome. I was told...find someone who has done over 1000 of them...personally I don't think this is realistic. Da Vinci was approved for use in 2001...do the math...every hospital doesn't have one (a robot) with surgeon(s) who can perform over 100-120 a year (2-3 times a week)...divide that up between a couple of oncologists...those numbers go down pretty significantly. I think a realistic number for greatness regarding proficiency is around the 500 area. The only guy I know that has done 4/5x that many is Dr Samadi up in New York (and he's good...)...he's got over 2400 touches...I don't know how, but he has. My doctor had performed over 450...and had participated in over 900. He was realistic and explained ALL the facts. When it got right down to it...the radiation oncologist had a great sell, the proton therapy oncologist had a great sell...everyone advocated why their product was the best...and they are all good. I simply got back to the basics on what had been proven for total eradication. This is me though...I KNOW I made a well informed decision...one which was carefully thought out based on 6 or 7 consultations based on my own personal situation...I understand everyone is different...

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

No doubt the original post was made out of frustration and disappointment. I hope he comes back and fills us in more. And I hope his situation turns around and goes in a more positive direction.

I appreciate the follow up posts too. Although I don't expect (or even want) every post to be an inspirational 'feel good' account of things, with my surgery three weeks away the first post kind of upset me.

Dan

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lewvino
Posts: 1007
Joined: May 2009

Dan, I assume by now you know from reading that with Surgery go with Experience in particular if you have Davinci. I've been 100% pleased with my results. Surgery Aug, 2009. I could have gone back to work in 3 weeks but took the full medical leave that I was due from Work.
Results - Used 1 pad total the day the cath was removed and that was that. Been 99.9% dry with no need for pads since. Erections working with use of Levitra. No promises just telling you how it was for me.

I'm always curious on some that 'post' scare stories and then leave and we don't hear from them again. Some will have problems but they still stay on the forum and offer their wisdom and experiences. Rather then 1 or 2 posts and poof are gone. It seems that they attack 'surgery' yet I don't believe I have ever read anyone on here attack radiation, or seed implants or other treatments. We all openly discuss hifu yet don't 'attack' it like others due surgery. Best wishes to you and please keep us posted on how you do with your upcoming treatments.

Larry

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

No doubt PWright expressed his frustrations from a very personal experience that did not go well for him. I don't think he's expressing that anyone else who chose surgery made a bad decision per se, it is just that it was a very bad decision for him based on the outcome he has experienced.

There is indeed a lot of hype about surgery, and radiation, and other forms of treatment. PCa is big business in America and it will undoubtedly grow as more and more men become aware of the disease and get testing.

We all need to carefully choose our treatments. As many have pointed out, each treatment course has drawbacks. Regardless of the stats, if it doesn't work for us, it's 100%.

Trew
Posts: 892
Joined: Jan 2010

PCa is a business? Like Sickness is a business? When I got back from Loma Linda and radiation treatment I had the opprotunity to sit with a man dying of PC. It was a very rough death, lots of pain, very hard to watch. I do not think doctors are making a bussiness out of trying to prevent that from happening to all of us. Which treatment is the best? Still hard to tell. This section of ACS Discussion Boards is full of the after effects of surgery, but there are also after effects of radiation and seeding and even proton therapy. Doctors are trying to do the best they can- some of them get PC, too. I have read their testimonials about their proton treatment on the Loma Linda Proton treatment news letter.

This is just a rough cancer for most of us. Is the use of the word "most" right? I know I have had a rough time. I had my lower end root canal last Friday and I am scheduled for a repeat in 3 weeks. The doc is trying to get that BIG o' scope into my bladder to look around. Leakage, Ed, hormone treatment- Stress syndrome, it sure isn't easy!

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

Agree with you Trew that most physicans are caring people who work hard to save their patients. On the other hand, the technolgy underlying most treatments today is very big business...There's a great book on the subject...The Big Scare: The Business of Prostate Cancer by Anthony Horan. I think it's a must read for anyone in our situation.

Trew
Posts: 892
Joined: Jan 2010

I can see we all would be relatively easy victims. But I am very skeptical of anything that smells/sounds like a conspiracy theory.

I do hate PC.

I do sympathize with those who have it.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

On the statement about it being a business. In my case I never once had that feeling. Every specialist tends to lean towards their form of treatment, but if they didn't, how would we ever get their expert advice about our particular case? If you went to a surgeon, I don't think you are there to find out if Proton is best for you ! Or lets go to a radiation specialist for surgery advice !!! Come on, each specialist is going to give you his particular opinion on his form of treatment. It is up to us to do our own research, what each one of us is mentally prepared for, and make a informed decision..That was why I talked to each, in his own field, about treatment choices. I felt that each one truly wanted what was best for me, in fighting my cancer. Never a "Hard sell" tactic. I wasn't so much worried about side effects ( ALL form of treatment has some) than I was about a cure for the cancer. I think it redundant to post that, " each Dr in his field will recommend his form of treatment" HELLO, isn't THAT why you went to him??? To find out if this or that will give you a better cure %... Let us not make this any harder for the new members, than speeches about some Dr being skewed about " IT's A Business"...
Just my opinion....everyone has one....like a_ _ h.....well you know

Jim
( Big Ugly Biker)

Trew
Posts: 892
Joined: Jan 2010

The appraoch to specialists you describe is the one Robert Marckini described in his book "You Can Beat Proton Cancer." And each specialist recommended his specialty- Imagine that! But each specialist was also interested in a cure- helping the patient.

In my first Uro's office I felt processed in a bussiness like way- but I think the doctor was a little over extended and was losing that personal touch. I do not feel processed at all in the new uro's office. Maybe more a matter of style than actual indifference implied in a business like attitude.

Good discussion here.

griff 1
Posts: 114
Joined: Jun 2010

i to am going for surgery in 3 weeks, it was scary reading that post, hopefully he is doing better. are you going for open or davinci? i did want to go da vinci route now i have read a few things and the open sounds just as good. griff

griff 1
Posts: 114
Joined: Jun 2010

i am glad to see a post that is positive in what he decided to do. it will help me in thinking my decision was the right one my doctor has done 600 of the da vinci surgeries, yes i think you are right in saying 500 is realistic. my doc is also very up front in saying the surgery is not easy and it can be bad for some. i guess what comes comes. good luck.

genek61
Posts: 3
Joined: Jan 2010

Each of us is unique, my father had prostate cancer and went thru experimental treatment and chemo before removing the prostate after he had been in remission for almost 2 years. He died within a year after removal due to spreading of the cancer that was not showing on any tests. That was in the early 90's.

I had my prostate removed due to cancer at 47. I previously had Hodgkins at age six. The surgery was robotic and there were complications for months after. I am doing okay now. Each individual should ask for a second opinion if they are not familiar with their primary DR and weigh all the information available to them. I would never recommend or not recommend surgery.

There are newer methods used now, am not sure if they are used in the USA, but one is freezing, and another is laser. Before making a decision please get all the info you can and tell others about prostate cancer.

God Bless

The Nev
Posts: 50
Joined: Sep 2009

Well not trying to scare anyone or create controversy but I work with a girl and her father was diagnosed with PCa he had a Gleason 7 don't know much else. He elected to watch and wait 1 yr later he was having problems and started treatment 1 yr after that he was dead. This is a fact! Post mortem Gleason 9. It was recommended he have surgery from day 1. Now he was a rare case no doubt probably less then 1% which is great odds unless you’re in the 1%. The problem is you never know. No one thought he would die in 2 yrs.

So fast forward I decided to go with surgery when I was diagnosed, not saying it’s for everyone just a little more food for thought.

Also I could be wrong but when I was trying to decide I was told that BT would also cause incontinence and Ed is that not what others have found?

Kentr
Posts: 111
Joined: May 2009

You stated, "Also I could be wrong but when I was trying to decide I was told that BT would also cause incontinence and Ed is that not what others have found?"

BT (brachtherapy) MAY cause the problems you mention but it's not a "given." I suffered from extreme urgency relative to urinating but it didn't last that long and terazosin (2mg) solved that little problem. As far as ED goes, at my age (68) it's hard to know if it's a natural occurence or if it's somehow related to brachtherapy.

BRONX52
Posts: 156
Joined: Apr 2010

TO ALL
YOU ALL CONTRIBUTE VALUABLE INFORMATION AND IT DEFINITELY HELPS THOSE STRUGGLING WITH TREATMENT DECISIONS. EACH OF US HAS TO MAKE OUR OWN DECISION BASED ON LAB REPORTS, BIOPSIES ETC; I WAS GLAD I CHOSE SURGERY. CLINICALLY, I WAS DIAGNOSED AS T1C AND A GLEASON OF 7(3+4). 2 OF 10 CORES POSITVE AS A RESULT OF THE BIOPSY BUT BOTH SIDES OF THE PROSTATE INVOLVED. TYPICALLY, THIS MEANS THERE IS A GOOD CHANCE THAT IT IS ORGAN CONFINED. WELL, THIS WAS NOT THE CASE FOR ME.PSA PRIOR TO SURGERY WAS 5.1. AFTER DAVINCI SURGERY IN FEB-10 THE PATHOLOGY REPORT REVEALED THE FOLLOWING--- GLEASON SCORE WAS STILL THE SAME, 2 POSITIVE MARGINS,PERENEURAL INVASION AND EXTRAPROSTATIC EXTENSION. LUCKILY ,LYMPH NODES AND SEMINAL VESICLES WERE CLEAR.PROSTATE WAS 75% INVOLVED !! STAGE WAS CHANGED TO T3A. SIX WEEKS AFTER SURGERY MY PSA WAS UNDETECTABLE BUT DUE TO THE POSITIVE MARGINS, EXTRAPROSTATIC EXTENSION, I WAS ADVISED TO CONSIDER RADIATION WITHIN THREE MONTHS OF THE SURGERY. I GOT A SECOND AND THIRD OPINION AND BOTH DOCTORS AGREED THAT I SHOULD GO WITH THE RADIATION. SORT OF LIKE A KNOCKOUT PUNCH TO ANY REMAINING CANCER CELLS. I'VE GONE THRU 32 IMRT TREATMENTS WITH 6 TO GO. NO REAL SIDE EFFECTS. SO FOR ME HAVING SURGERY FOLLOWED BY RADIATION WAS THE RIGHT CHOICE. THAT MAY NOT BE THE RIGHT DECISION FOR OTHERS BUT YOU HAVE TO TAKE EACH CASE INDIVIDUALLY, WEIGH THE PROS AND CONS AND MOVE FORWARD. JUST THOUGHT I'D SHARE MY JOURNEY WITH EVERYONE SO ALL OF THE OPTIONS ARE PUT ON THE TABLE--DAN

bdhilton
Posts: 759
Joined: Jan 2010

Thank you for your response and it sounds like you had great advice and doctors…

Yes that is what my surgeon (William Catalona) and my Urologist recommended adjuvant radiation in the first 90-120 days since I had a positive mid right margin, Right Seminal Vesicles involvement, Perineural Invasion on my pathology report based on initial studies showed that adjunct radiation with positives margins were showing better results…

However, after I got my first PSA back at Zero in April I talk with my Urologist and he agreed with me that if he were me he would wait to see a rise in my PSA before I elect to have radiation because you are better off if you do not need it …so you are damned if you do and damned if you do not…but seriously it is a percent or so difference if you catch the rise under .02 between adjunct vs salvage…but the most interesting thing I have read in these studies is that if your margins were negative then this local radiation therapy is not going to help you…Anyway I still have about 35 days to think about this…I hate this PCa

Prostatic Cancer Staging Summary:

Tumor Type: Acinar with Focal Ductal Differentiation

Gleason Score
Primary + Secondary: 4+3=7
Tertiary: Pattern 5

Location Main Tumor: Prostatic Base
Location Additional Tumor Nodules: Left Apex, Right Apex, Right Mid, Left Mid, and Left Base

Extraprostatic Extension
Focal (<2 Microscopic FOCI): N/A
Established (Extensive): Present and Extensive

Margins
Apical Margin: Free of Tumor
Bladder and Urethral: Free of Tumor
Other Surgical Margins: Positive, right mid Prostate

Seminal Vesicles: Positive for Carcinoma
Location, If Involved: Right Seminal Vesicles

Perineural Invasion: Present

Lymphatic/Vascular Invasion: Not Identified

Total Lymph Nodes: 2
Number positive: 0
Tumor Volume Approximately 18%
Tumor (T): pT3b
Metastasis (M): pMX
Nodes (N): pN0

Prostatic Cancer Staging Summary:

Tumor Type: Acinar with Focal Ductal Differentiation

Gleason Score
Primary + Secondary: 4+3=7
Tertiary: Pattern 5

Location Main Tumor: Prostatic Base
Location Additional Tumor Nodules: Left Apex, Right Apex, Right Mid, Left Mid, and Left Base

Prostatic Cancer Staging Summary:

Tumor Type: Acinar with Focal Ductal Differentiation

Gleason Score
Primary + Secondary: 4+3=7
Tertiary: Pattern 5

Location Main Tumor: Prostatic Base
Location Additional Tumor Nodules: Left Apex, Right Apex, Right Mid, Left Mid, and Left Base

Extraprostatic Extension
Focal (<2 Microscopic FOCI): N/A
Established (Extensive): Present and Extensive

Margins
Apical Margin: Free of Tumor
Bladder and Urethral: Free of Tumor
Other Surgical Margins: Positive, right mid Prostate

Seminal Vesicles: Positive for Carcinoma
Location, If Involved: Right Seminal Vesicles

Perineural Invasion: Present

Lymphatic/Vascular Invasion: Not Identified

BRONX52
Posts: 156
Joined: Apr 2010

SOUNDS LIKE YOU HAVE DONE YOUR HOMEWORK AND HAVE WHAT YOU NEED TO MAKE YOUR DECISION. NOW COMES THE HARD PART---DECIDING WHAT TO DO !! GOOD LUCK!!! I THINK IT IS FAIR TO SAY THAT WE ALL HATE THIS PC THING----SUCH A SMALL GLAND AND SO MANY TREATMENT OPTIONS---UGH !!!!

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