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Waiting For Surgery

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

I am new here and find this site very interesting. I was diagnosed in April and went to my second opinion on 6/11. I just got a call from the scheduler and my surgery is scheduled for 8/11. All of this waiting is driving me crazy but reading the posts on this site have given me a very good idea of what I can expect during and after the procedure (DaVinci) which is VERY helpful. I am so glad I found this site and I have actually read every post and response here. I plan to keep on board through it all. Thanks to all.

Ed

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

But we all wish you did not have to be here....You will find many very knowledgeable people here that have been through what your about to so ask away and we will see if we can help. What were your biopsy stats?

Randy in Indy

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

My first biopsy was 2 years ago and I am not sure the exact number but it was a low 5 PSA. The first came back negative but my doc said that doesnt mean it's not there. I went back in April (PSA about the same) and he put me out and took 36 samples. There were 3 positives 1%, 2%, 2% and a Gleason 6. I went to the 2nd opinion and now have surgery scheduled for 8/11. Sorry I dont have exact numbers right now, I am actually at work now. One of the questions that I really have in my mind is how much work can I expect to miss. I know that is something that cannot really be answered since everyone is different. I do have a desk job so that might help.

Ed

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

I work from home as I am as we type and I was at my desk pajamas and cath bag following on the 6 day from surgery. If I had to go into an office I would say the earliest you would feel like going is about 14 days out...but most places have to give you 6 weeks off if you need it. My employer was putting me on short term disability and I had the Doc/hostpital tell them to put me on half days for two weeks that way I could kinda work when I wanted and lay around when needed or go out and play also. We had a sales meeting I attended via telephone and gave a presentation on my Regions business instead of driving into the office. I was fully mobile with cath bag the second week driving around for errands (I had to keep my cath in an extra 6 days because they found a leak on day 7 when I went to get it pulled) Not sure you are supposed to drive with a cath bag on but did it anyway had things to do and places to go.

Hope this helps.

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Yes this does help. I am actually going to take vacation time for sugery so I will get paid while I am off. I do have the ability to log in from home and work which will also help. I am hopeful to get the cath out in a week as the doctor stated but I guess that can vary also. I did get the CT results yesterday and they said it all looks good and negative which makes feel a little better.

Thanks

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

This is a good thing...however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report. You are still at such a low invlolvement with extensive biopsy (36 samples) that I would expect a very good outcome with whatever treatment you choose. This beast is very peculiar though and has a mind of it's own. Did you consider getting an MRI with coil or spectroscopy...a test that can tell if the cancer is contained within the gland particularly when you have a palpaple nodgel. (tumor) You probably don't though.... Where and who is doing your DaVinci - how many has he done? What are his statistics with incontience and ED? These are all questions you might want to ask him prior to making a final determination of using him.

Randy in Indy

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

A few comments and direct questions.

It's a good idea to have a second opinion on your biopsy results, and send the parrifin blocks to an expert in the field.

How old are you, and what is your general health.

Randy gave you a very good suggestion to have an MRI with a spectrocopy.

What is your surgeons name, and how many surgeries did he perform.

Ira

Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

Here are some results of Lawernce Klotz,MD, well respected
new
active sureilance expert

protocol:

PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36

After 8 years:

- 55% remain untreated with stable disease

- 36% decided to have treatment(eventhough they did not have progression)

- 9% treated with surgery or radiation for increase in psa or gleason score

- none have metastatic disease
< 1% men died of prostate cancer

---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005

. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression

FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE

What types of treatment(s) have occurred?
In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.

There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

-----------------
MRI

There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

I am 53 and in decent shape but I have recently lost 20lbs and I have no idea why. Although I could stand to lose a few more I am certainly not trying or dieting. I did consider active surviellance but at my age I decided surgery was best for me and the thought of this inside of me and doing nothing about it just did not work for me. I do believe that if I was 10 years older I would have not opted surgery though. Sometimes all of this just gets so overwhelming and confusing and this site has helped me greatly.

Thanks to All,

Ed

hopeful and opt...
Posts: 1313
Joined: Apr 2009

robotic surgery............the number of operations previously performed is a large factor.........tell us about your surgeon..............Ira

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I wonder , can you give a reference for your comment " however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report"..........Thanks......Ira

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

I questioned at length DR, Koch of Indiana University on this very topic who has done a mirad of studies with Joseph Smith of Vanderbit University - go to vanderbilt University prostate studies with Joe Smith and find huge volumes of studies they compiled while Koch was learning with Smith at Vanderbilt. His take was that most often and the percentage he used is 2/3 rds of the pathology reports after surgery have upgraded the grade of cancer...that is why I am so concerned about you and always have been with the active survellance. Just from my own experience of knowing the people on here that had surgery most have been upgraded. I was I believe Jesse was, and many more. He said about 20 % stay the same and the rest are actually downgraded..but the overwhelming majority are always upgraded.

hope this helps. Randy

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

I have read that studies show a bit lower percentage...about 50% are upgraded but the point is still the same. A lot of pathologies are apparently more extensive than the standard biopsy cores show and tend to have more aggressive forms. All the more reason, in my opinion, to take a treatment step while the cancer is in it's earliest stages where it has the best chance of cure from either radiation or surgery. But I do know Ira's logic and he tracks it closely.

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

I am convinced he is as concerned as us if not more about the cancer in his body...and I trust he is doing the right thing with his choosen path...I just finished a chapter in the book Maria gave me about how over diagnosis is very much a reality and possible which leads to unessassary treatment ....mine was a much different case - palpable nodgel...in fact since I had the heredity for it with my father having it I am now warning my older brother who probably has a 50% or greater chance he will have it...as a result he's taking yearly PSA's and knows his reading and has actually been doing it for about the last 7 or 8 years.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Trying to put thngs together

The Klotz test comes up with this information,

After 8 years:

- 55% remain untreated with stable disease

- 36% decided to have treatment(eventhough they did not have progression)

- 9% treated with surgery or radiation for increase in psa or gleason score

- none have metastatic disease
< 1% men died of prostate cancer
--------------------------------------------------------
As stated by Randy and Kongo, upgrading for the aggressiveness of the cancer for those having surgery is somewhere between 1/2 and 2/3.......now not all of those having surgery are candidates for active surveilance with low numbers........maybe those with more involvement or higher gleason will tend to have upgraded cancer aggressiveness.

Also it seems that the Klotz study is pretty inclusive of all.....( of course the aggressiveness of individual cancer aggressiveness are not broken out)

I guess there is a lot of room for thought.

Ira

hopeful and opt...
Posts: 1313
Joined: Apr 2009

What is are some opinions on Avodart for those who are high risk, but have not been diagnosed, like Randy brother and our some of our brothers.

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

You know how you go back and re-read posts here...well I just saw this one about Avodart. What is that? A preventitive prostate cancer drug?

Randy

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I don't have the study in front of me.........but about a year or two ago there was a study done among men who were not as yet diagnosed with prostate cancer.....they were given this drug, and there was a statistically significant reduction in the development of prostate cancer for those who took the drug.....it was tested on men who had not been diagnosed.

There can be some side effects from the drug among a small percentage of men ......lower libido and sex drive( I think that there are some others, but I don't remember right now}...I read that the drug can be discontinued if this occurs.

The drug is fairly new, so should one take this drug if they have not been diagnosed?...there are various opinions.......the manufacturer does not come out and recommend this, however.....I'm thinking that it's more yes than no for those in a high risk group.

ALSO, what about those men who are on Active Surveillance like me?....I personally spoke to appr. 8 or 9 docs and I have received different answers.....about two of these docs recommend this drugs while the rest do not.......there have been no medical studies done among this group of men. (remember the initial study was done among men who have not been diagnosed)

I have decided to be conservative, and not to do this drug since it is fairly new.......however it is really a $64,000 whether to take or not take the drug.

There is a site Pubmed.com where the results of the study can be found. This will show the results of the study and not be opinionated, as I know this post is.

Ira

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Ed, Wishing you the best on this journey! I had my Davinci on 8/15 and was very happy with my choice. Hoping you can take over my spot in the 0 club and hoping that I can get back in at some point in time.

Larry
age 55

Davinci 8/15/2009

Gleason 7 (3+4)
Stage T2B
PSA 5.3 pre surgery
Cancer - 20% prostate involved
One positive margin noted in Right Apex
3 month PSA 0
6 month PSA 0
10 month PSA .1

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

I am very hopeful to join the ZERO club, but I do believe your spot will be open and waiting for you to get back. My DaVinci will be on 8/11 so it will be a bit before I can get in.

Thanks, Ed

chitown
Posts: 90
Joined: Mar 2010

ed - i have posted my 6/15surgery experience and may be helpful. Also during the 3 month wait for mu surgery, I had followed a mental and physical regimen that I had learned from this forum and other sources. Some of it worked for me and some did not. Be happy to any questions from my experience

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Chitown, I read your post and it sounds like all is going well for you. Like you, the wait is driving me crazy. I am 53 and active but I am not on any exercise program at this time. It sounds like your physical condition is contributing greatly to your recovery and if my wife reads any of this I am sure I will be exercising as soon as I get home tonight. Please keep us posted on the recovery.

Ed

chitown
Posts: 90
Joined: Mar 2010

I focused on only 3 areas needing toning for surgery

1. Pelvic - breast stroke swimming 3-4 time a weeks doing laps for 30 mins
2. Core - crunches, dumbell, machine at gym. 3-4 times a week for 30 - 45 mins
3. Cardio - Uphill mountain hike or climber at gym. 2 - 3 time a week 45-75 mins.

For me the physical part was easy..now during the post surgery contemplation I have found small gaps in mental strength during this past cycle that I am motivated to take care of for any future need. Yoga, meditation..here I come!!

Good luck and best wishes

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

1 week to go and I am starting to get nervous. Im not sure if it is nervs or anxiety but I just want to go to sleep right now and wake up in the recovery room with a great path report in my lap when I open my eyes. Of course I know it is not going to happen that way, but it would be nice wouldnt it? I'm going to spend this weekend making sure I have everything ready at home. I have an appointment monday with my GP to get a letter stating I am fit for surgery. Tuesday I will leave work early and start the internal pipe cleaning process and hopefully get some sleep for my 6 am appointment Wednesday with the big machine. Through my reading on this and other forums I have a very good idea of what to expect when I get on the other side. I am very thankful to everyone for all of the information, it has really helped me through this process.

Ed

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

Like you I was very greatful for all the help and info I received here prior to my Davinci as it certainly made it much easier taking away some of the unknown. We will all be thinking/praying for you on Wednesday along with the other brothers getting their procedures on 8-11. I have not posted too much lately as I have been very busy with work, family, and building Man Cave#2 at my home...Life is sooooo good with much to look forward to! I hope you have as good a result as mine!

Randy down the road in Indy

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Ed,
Good luck on the upcoming surgery. I know the nerves and anxiety can get to you. Take time for your self and family and do something fun together. My surgery was in Nashville so the night before had my last dinner before the clean out drink! My wife and I enjoyed walking around downtown Nashville.

Just think in a few days you will be on the other side 'a cancer survivor!'

Larry

griff 1
Posts: 114
Joined: Jun 2010

let us know how it went ed. goodluck griff

chitown
Posts: 90
Joined: Mar 2010

Ed - Visualizing every day prior to surgery, defining what to expect and getting ready for it, plus day of surgery and days/weeks after that got me in better mental state. Understand your anxiety..probably no one around you will understand but it gets better every day you get closer to surgery.

For me the surgery and post surgery experience was better than I expected. The day to day recovery was rapid. Now at 6 weeks I have very little incontinence (coughing, passing gas, while in the airplane causes a small drip, am pain free of any kind, sex is normal at 75% pre surgery erection..with a pill. Got 6 weeks PSA at 0. So the chapter of PCa hopefully is closed.

Wish you all the best and we are all here to make thing positive for you

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

You got that right, nobody around me understands the stress on me. My wife thinks it is all about her and we are in a battle over it right now. I am 6 days from surgery now and most likely on my own with a ride from the hospital and help during recovery. I am not very happy at the moment. Sorry about venting

Ed

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

your wife can't help with taking you to the hospital? If you need to talk just send an email offline...Would be glad to chat with you on the phone.
larry

chitown
Posts: 90
Joined: Mar 2010

Ed - My advise is to let go and lower your expectation. I went thru the same cycle with my wife and found its futile. Your wife is probably fighting her own demons in her own way and consumed in them to give the help you need. You can help her fight her demons so she is better equipped to help you...crazy logic but worked for me! Nobody is in your mind and body but you. My suggestion is to accept the limitations of others. What I did is took control of the planning, defined what needs to be done and told other what to do..my wife, sister, friends and they all did wonderfully supporting the needs.

Post surgery my reflections are really how each of are alone, how fragile is life, and how mind and body are totally separate from each other. Take care and believe me every new day will be a better day!

GolfWi
Posts: 5
Joined: Jun 2010

I think all of us have gone through the pre-op anxiety at some level, it's normal. There were days just prior to surgery that I thought I was going to get sick. I had complete confidence in my surgeon (Dr. Catalona/Northwestern)he has done over 5,300 RP's, but I was still nervous. The first few days were rough and the catheter for 11 days sucked, but those days are becoming a distant memory. I am three weeks post-op today and am feeling a lot better than I expected. I needed depends for a couple days after cath out, but have quickly improved to using just 2 small pads a day. I began doing my kegal execises in May when I was diagnosed and continue doing them still, I believe this has really helped with my quick continence recovery. I have a little pain in the groin yet but it's tolerable. I have gone to work for a few hours a couple days this week and am feeling better each day.

I haven't posted many times here but your comment earlier today cought my attention. It would suck to go through this alone and hopefully your wife will come around before surgery. Wheater she is by your side or not I think you have to stay focused on what you need to do to get through this with the best result possible. Do what is best for you right now and worry about the other stuff later if necessary. YOUR life depends on it. I wish you the best and remember it will all soon be a distant memory.

lew_in_marietta
Posts: 14
Joined: Jul 2010

Ed, chitown is right. It will get better. I'm sure people will surprise you in the days ahead. Good luck with the surgery.

YTW's picture
YTW
Posts: 64
Joined: Apr 2010

EJN:

All of us her I'm sure are wishing you the best of luck on your surgery next week. You've done your homework so dont look back. We are lucky to have been diagnosed now instead of 20,10 or even 5 years ago. We have caught "the beast" now and who knows what will be discovered in a few years or even in a few months to improve our outcomes. One thing for certain, by catching it early, we have given ourselves all important time...

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Thanks to everyone for the support. I'm sure she will come around before surgery. I am also sure that I am not the easiest person to be around in this situation. I am more of the keep everything to myself type until I know exactly what is going on and how to take care of it. At that point I tend to give orders instead of asking for help. Asking for help is very hard for me but I know it is something that I better get used to because it is beeter to go through this with loved ones rather than alone. I am still in the angry phase and just need to get past this surgery and move on to the next hurrdle.

Ed

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Ed, The 'c' word is scary for all involved. I'm sure your wife has fears of what might happen. From your picture it looks like you have a young son also. She most likely is wondering what the future will hold for your family. Hang in there, try and talk to each other openly, ask her about her fears. Yes you are the one with the cancer that will be beaten on Aug. 11th but it affects her and your son also.

My wife and I had some tension before my surgery but when I was able to set down and express my fears to her it helped us both.

My offer is still open if you want to chat. i've sent you my home, work emails and also home and cell numbers.

Larry

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Larry, Sorry I missed your call last night. I did send you an email this morning. The boy in the pic is my step son, I have 2 boys that are in their late 20's and have talked at length with them. I do have fears and I think you are right about sitting down and expressing them to her. I worry about making her affraid so I tend to keep things to myself. I guess it will be her choice how she reacts and I need to give her that chance. I will take some time this weekend and have a discussion with her, and I think it might be the answer. Her biggest problem is that I dont let her take control of this, but I need to let her know that for my own good I need to be the one in control. Thanks for your help.

Ed

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

You're on the right track. I'm FIERCELY independent and keep almost everything to myself. One of the best decisions I made through this whole ordeal was to open up. I shared most everything with my co-workers to eliminate "whispering" and "wondering what to say", handled things with humor, and basically included my wife in every step of the process including what to ask the doctor, doing research into the best options, choosing a treatment, discussing my own death, family finances, helping me during rehab, and unfortunately, included her with my loooong ordeal of dealing with incontinence and ED. She has been my most valuable asset. Again I say, YOU don't have cancer. You BOTH have cancer. Last night, she said the best thing I did was allow her to help.

Trew
Posts: 892
Joined: Jan 2010

Have you discussed treatment options with your wife? My wife seemed to favor surgery. I do know that consequences of treatment are a shared experience. I sure wish we could see down the road a few years and see what the outcome would be before we decide. Not possible so we do the best we can.

My wife has been hit hard by her share of stuff too. I have been on the other side looking at her and wondering if she would survive. Now she is supporting me. I love marriage!

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

I am scheduled for surgery on 9/14 and as anxious as you have been and over a month away! You will read this after you've recovered and are doing well, I expect.

Talk to you soon - Hopefully God Blessed you and I bet that you have a lot of people praying for just that.

griff 1
Posts: 114
Joined: Jun 2010

are you having robotic or what? i had it one the 23rd of june and it went well. 1 pad a day and still fighting on the ed. it is coming though. thank goodness they can save the nerves nowdays in the past they could not. anyway good luck man. griff

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