Making Decisions Regarding Surgery

Kongo said:

Agree too, but...
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</p>

kongo and swng
"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 said:

PCa Is Personal
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%.

PCa is a business? Like
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!

DanKCMO said:

No doubt the original post
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

Dan, I assume by now you
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

Trew said:

PCa is a business? Like
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!

Trew, I agree with you
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)

Kongo said:

Ira
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?

Hi
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 said:

Loud and Clear
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.</p>

It's difficult for me to reply
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 said:

AS Expert
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.

The Big Scare
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

The Unknown
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?

The Nev said:

The Unknown
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?

The Nev
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 said:

TREATMENT DECISIONS
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

Thank you for your response
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