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Live Out Loud
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/22/2013 3:35 PM (GMT -7)   
My husband was diagnosed with PC three weeks ago and is scheduled for robotic surgery at the end of next month. 16 out of 16 of his samples showed cancer. If you have been through this surgery, what was it like post-operatively? How can I best help my husband during this time? How long will he have the catheter? I am currently planning on taking a week off after the surgery...should I be with him longer than that? Any advice would be most welcome.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 8/22/2013 3:44 PM (GMT -7)   
Hi!

Do you have more stats? Gleason core etc?

Have you guys looked into all possible forms of treatment? Depending on the type of cancer, there are multiple effective ways to tackle this. The effectiveness of these very much dictated by our individual particulars. Please share more information.

I'm a veteran of surgery and things could not have gone better for me. The short story is that my cancer was contained, I'm creeping up on 3 years of scoring zeroes (fingers crossed) was never incontinent from minute 1, and was having sex with my wife at the 30 day mark with meds and without meds within months. The PSA anxiety has greatly diminished (for now) and the PTSD seems to have subsided. Things went extremely well for me.

I had the catheter for a week. It was uneventful, albeit a nuisance I was thrilled to shed. I'd say taking a week off is about right. He'll really need you those first 1-4 days when the soreness is still annoying.

Let me know if you want the longer version and we'll email.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4454
   Posted 8/22/2013 3:57 PM (GMT -7)   
Here's a link to some general info concerning some of the treatment options, including robotic and open surgery.

www.healingwell.com/community/default.aspx?f=35&m=1717641
James C, 66, A Better Man /Injections? Read This
One asks, Several answer, Many learn
4/07: 7.6, 3of16, 5% GS6
9/07: ORP, pT2c, 110 gms., Prob. micro.inv.-left apical mar. G6
5 Yrs: .04,4/10-.06, 12/10-.09, 5/11-.08, 9/11-.14, 7/12-.13, 11/12-.16
06/13-.22 Waiting

Fauntleroy
Regular Member


Date Joined Dec 2012
Total Posts : 206
   Posted 8/22/2013 4:04 PM (GMT -7)   
16 of 16, you guys need to be investigating other treatment methods

Reltnie
Regular Member


Date Joined Feb 2013
Total Posts : 499
   Posted 8/22/2013 4:07 PM (GMT -7)   
Everyone heals differently.  My wife stayed home for a three days until I got used to the catheter and dressing with it, etc.  I probably could have done it myself, but it was sure nice to have someone help put my socks on--little stuff you take for granted until you're unable.  Robotic surgery usually is a fast recovery, but of course that depends on your husband's age and level of fitness before surgery.  My catheter was in for 11 days.  Some guys are a few days shorter--some longer.  Just her being there was nice.  Once I got my pathology report, which was thankfully good, I felt much better physically and emotionally.  Rest assured that there is every likelihood that he will recover quickly.  I was out walking 3-5 miles daily at three days post surgery.
 
Good luck,
Tom
Age:60 Diagnosed: Jan. 2012, Age 58
Original PSA Level 3.9 ......Gleason: 3+4
Biopsy results: 3 of 12 tested positive for cancer
Da Vinci Surgery 2/10/12
Negative Margins, cancer contained to prostate
Continent after 3 weeks
Sexual function fine with Cialis and now without meds at all:)
PSA undetectable for over a year now.

Live Out Loud
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/22/2013 4:10 PM (GMT -7)   
davidg, you were diagnosed so young! I am very encouraged by your post. Dr. Samadi will also be doing my husbands surgery. He sat with us for nearly 2 hours going over the test results and presenting the options. I recall a series of 3+4 and 4+4 numbers. I didn't ask too many questions because I was afraid I would start to cry. It's a female thing, I guess. My husband said he was already pretty sure that the diagnosis would be cancer...just from knowing his body and how he is used to feeling.

I did google diets for prostate cancer patients. My poor husband thinks the new diet will kill him before the cancer does, but I just feel the need to do what I can to help. He has a bone scan scheduled for next Friday. He is 53 years old and began having abdominal pain a year ago. We've been married 32 years and I'm hoping for an additional 32 years before I make up my mind if it's going to last. :}

Live Out Loud
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/22/2013 4:13 PM (GMT -7)   
Fauntleroy said...
16 of 16, you guys need to be investigating other treatment methods


Like what?

Live Out Loud
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/22/2013 4:14 PM (GMT -7)   
James C. said...
Here's a link to some general info concerning some of the treatment options, including robotic and open surgery.

www.healingwell.com/community/default.aspx?f=35&m=1717641


Thank you so much.

LupronJim
Veteran Member


Date Joined Apr 2013
Total Posts : 1393
   Posted 8/22/2013 4:15 PM (GMT -7)   
If you are new to the forum, you may not have noticed the Search function on upper right, third one in.

Besides current topics that appear in forum 35 prostate cancer, you can do searches and read past topics.

other then new drugs, for the most part the issues and experiences do not change all that much.

There is also the very top thread on page 1 of table of contents for those recently diagnosed.

Another good source is Dr Charles "Snuffy" Myers videos. While I am not one of his patients, many on this forum are. You can page back and find just about any PCa topic you care to learn more about.

http://pages.prostateforum.com/trk?t=2&mid=NTIxLUdKTi0xNzE6NDI0OjE1NDc6MTMzMjowOjEyNDk6Nzo3NTc2MTpqaW1jcm90dHk0NjNAeWFob28uY29t&&&https://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonvqjOZKXonjHpfsX%2F7usrWLHr08Yy0EZ5VunJEUWy2YEFRdQ%2FcOedCQkZHblFnVkKS62yVq4Nq6IM

welcome BTW. We are all here not by initial choice but find the comradery very beneficial, given that we have this ugly PCa to deal with.

LupronJim
65 - DX 64 Feb 2013 PSA 3.68 (6 mo doubling) Gleason 9 (4+5)

T1CN0M1B stage IV w. 7 of 12 cores worst ones 70% right perineural Invasion PNI

oligometastatic 5 tumors 1 right sacroiliac, 2 thoracic vertebral bodies (spine), 2 right posterior ribs

1st Lupron 4 month 3-28-2013, 2nd Aug 1
PSA 3.68 down on 07-08-13 @ 0.2, T=24

UF & Shands treating w curative intent, not just palliative.

LupronJim

Live Out Loud
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/22/2013 4:16 PM (GMT -7)   
Reltnie said...
Everyone heals differently. My wife stayed home for a three days until I got used to the catheter and dressing with it, etc. I probably could have done it myself, but it was sure nice to have someone help put my socks on--little stuff you take for granted until you're unable. Robotic surgery usually is a fast recovery, but of course that depends on your husband's age and level of fitness before surgery. My catheter was in for 11 days. Some guys are a few days shorter--some longer. Just her being there was nice. Once I got my pathology report, which was thankfully good, I felt much better physically and emotionally. Rest assured that there is every likelihood that he will recover quickly. I was out walking 3-5 miles daily at three days post surgery.
Good luck,
Tom


This information is very helpful. I'm praying for similar results for my hubby.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1791
   Posted 8/22/2013 4:16 PM (GMT -7)   
Live Out Loud, sorry we have to meet under these circumstances. I'll let the guys deal with the nitty-gritty of your husband's diagnosis; I'll focus on the practical side.

As a wife who saw her husband through surgery 5 years ago, I'll help you "prepare" for the event and deal with caring for your DH afterwards.

I wound up being home with him for 6 days. You wrote that you plan on taking a week off from work, and that should be OK.

He will likely have the catheter in about 10 days. The hospital should give you two bags: an overnight one (holds more urine) and a leg bag (holds less but is smaller and more discreet and can be attached to the leg under pants so he'll be able to get out).

Once your husband is home, he'll likely be on a liquid diet until he has his first BM. Stool softeners are a must to avoid putting too much strain "down there". Don't be alarmed if a bit of blood comes out of the tip of the penis during a BM...that's normal and very common.

Once the first BM has occurred, he will likely be able to introduce soft foods (soft boiled egg, pastina with broth, etc.) to his diet. Gradually, you should be able to add in his normal foods.

Make sure your husband has a pair of very loose, comfortable elastic-waist pants. If your husband is having robotic surgery, the incision and staples will be around his navel, so you don't want anything tight or constricting. Also, the looser the pant leg the better to hide the smaller catheter bag.

The hospital staff had my husband up and walking the following morning. Walking is key...helps the body heal, especially the sensitive urethra which will take a beating during surgery.

I'll stop here but ask any questions you want, and I'll gladly answer.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 8/22/2013 4:19 PM (GMT -7)   
You'll get those years, don't worry. Your husband is also very young, too young for this. You're in great hands with Samadi, he really did right by me and continues to be a friend and an advocate for me. He'll be there for you all along and well after your surgery. It think it's wise that you're doing the bone scan, that's a good prudent call before the surgery.

Did he discuss diet change with you guys? I noticed on his social media sites how focused he is on healthy living. I didn't get that talk almost 3 years ago, I'm jealous.

It's okay to cry, probably good, but rest assured that you are at one of the hardest parts of this journey and that things will get easier and you'll get stronger. As a bonus, post surgery rehab is a blast. I hope you've met Helen already, she's my angel.

Let me know if you want to email.

David
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

Live Out Loud
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/22/2013 4:20 PM (GMT -7)   
LupronJim said...
If you are new to the forum, you may not have noticed the Search function on upper right, third one in.

Besides current topics that appear in forum 35 prostate cancer, you can do searches and read past topics.

other then new drugs, for the most part the issues and experiences do not change all that much.

There is also the very top thread on page 1 of table of contents for those recently diagnosed.

Another good source is Dr Charles "Snuffy" Myers videos. While I am not one of his patients, many on this forum are. You can page back and find just about any PCa topic you care to learn more about.

http://pages.prostateforum.com/trk?t=2&mid=NTIxLUdKTi0xNzE6NDI0OjE1NDc6MTMzMjowOjEyNDk6Nzo3NTc2MTpqaW1jcm90dHk0NjNAeWFob28uY29t&&&https://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonvqjOZKXonjHpfsX%2F7usrWLHr08Yy0EZ5VunJEUWy2YEFRdQ%2FcOedCQkZHblFnVkKS62yVq4Nq6IM

welcome BTW. We are all here not by initial choice but find the comradery very beneficial, given that we have this ugly PCa to deal with.

LupronJim


I am new to the forum and I thank you very much for your tips in finding helpful information and navigating the site. Thanks for taking the time!

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 4148
   Posted 8/22/2013 4:26 PM (GMT -7)   
Hello Live Out Loud,

Welcome to the forum! Sorry you find yourself here -- nobody wants to wind up here -- but glad you found us.

Excuse me for asking a bunch of questions you've already answered. I type slowly...

Let me start by repeating what DavidG said: it would help us know what to tell you if we knew a bit more about your husband's cancer. Since all of his 16 cores were positive we can probably skip the part where we try to figure out if he needs to be treated at all. He
does. But if we knew his Gleason score that would help us understand his situation a bit more clearly. A Gleason score is a number in the range six through ten that is the sum of two other numbers (three through five) that are also given. For instance, my Gleason score is written as 9(4+5) but most men will have a score of 6(3+3). We'd also like to know how the doctor who looked at his samples described the percent of the samples that was affected. This all makes a difference in terms of how likely it is that he will have side effects from the surgery.

There are a few thinks you can do to get ready for his surgery. When he comes home from the hospital he will have a catheter (which he will hate, by the way) and will need to spend a lot of time laying down which tends to be boring. It helps to have a recliner where he can see the television with a table beside it where he can put a stack of books and the TV remote. He won't be able to help you move furniture after the operation so best to do it before.

He will also need to take frequent walks. Around the house for the first few days but then around the neighborhood as he heals. He'll still need to recline between outings (to keep the swelling down) but you should have a few routes picked out. As he heals he will probably graduate to a leg bag -- a catheter bag that straps to his leg. That will make it easier for him to get out and about. He will need loose pants to go over the bag and what is really good is a pair of pants where the legs come off (zippers or velcro) to convert to shorts. Those are really handy for giving him access to the leg bag.

A week should probably be enough. He will be able to move around the house after he has been home for a week. He can warm up his own food but shouldn't stand on his feet for long periods so pre-prepared foods that he can warm up without a lot of cooking will be good.

When he goes to get his catheter out (often seven to ten days after surgery) be sure to take a pair of high-absorbencey pull-up incontinence pants for him to put on. Most guys leak pretty much at first and that will get better slowly.... most of the time.

Good luck. Let us know how we can help you.
60
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg (some inflammation),
2)neg,
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
4)neg.
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT3 7/26/12
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Leaky but better, Trimix, VED
Forum Moderator - Not a Medical Professional

Post Edited (PeterDisAbelard.) : 8/22/2013 4:29:13 PM (GMT-6)


DougInLA
Regular Member


Date Joined Apr 2013
Total Posts : 102
   Posted 8/22/2013 4:33 PM (GMT -7)   
Hi LOL -

Glad you found us, sorry you have to be here. You've already started getting some good advice...more will be forthcoming!

I'll address the diet question. I don't know which cancer diet you found, but personally I think most of them out there smack of quackery. That said...there is a school of thought that many cancers might be triggered by the body's response to inflammation - and a poor diet can be a factor. Food allergies (especially things you don't know you're allergic to), processed foods, sugar - these things can all contribute to the inflammation problem. And while a change in diet is unlikely to have any affect on cancers that are currently in the body, cutting down on those kinds of foods certainly couldn't hurt - at very least, they might lead to the shedding of some extra pounds - and at best, they might help a person feel better in a general way.

In my own case...from the time I first had an inkling that I might be looking at a PCa diagnosis (end of February), until my surgery (July 1st), I lost 15 lbs by cutting out gluten (discovered I was allergic) and drastically reducing my sugar intake - while at the same time increasing my intake of fresh fruits and vegetables, and limiting animal fats. It might sound drastic, but it was actually very easy. Anyway, I was very happy to be going into my surgery with a smaller waistline - and the fringe benefit is that I felt (and continue to feel) really good. I have been able to maintain the diet afterwards, and consider it to be a permanent lifestyle change. Needless to say, my cardiologist is thrilled.

In terms of recovery...I needed a lot of help for the first week to 10 days (my cath came out at a week - not a big deal) - and I was back at work (I work at home) 2 weeks after surgery to the day. There are several shopping/supply lists floating around the site - my wife took all the info and turned it into a nice clean document - if you'd like a pdf copy, let me know!

I'm currently 7 1/2 weeks out - no incontinence or ED - no pain from the RP (I also had a hernia repair done, which still smarts a little) - and hopefully, cancer-free. My first post-surgery PSA test is at the beginning of October - hoping to join the "zero club" then, and stay a member for a long time to come.

Best of luck...

Doug
Age: 48
Los Angeles, CA
2/2013: PSA 5.6, DRE/ultrasound positive
Biopsy 4/4/13 results:
T2a or T2b G7 (3+4)
Perineural invasion present in one core
Bone and CT scans negative

Robotic RP 7/1/13: Dr. Kia Michel at Cedars Sinai

Post-surgery path report: G7 (3+4) pT2b
Margins & lymph nodes clear

Post Edited (DougInLA) : 8/22/2013 4:36:33 PM (GMT-6)


davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 8/22/2013 4:38 PM (GMT -7)   
outstanding, Doug. My PSA is also in October (doing it end when I get back from Italy). We are going to celebrate together.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

worriedabouthubby
Regular Member


Date Joined Aug 2012
Total Posts : 227
   Posted 8/22/2013 5:13 PM (GMT -7)   
Welcome! Sorry you had to find us.  My husband was diagnosed just over a year ago, at age 57 (we'll be celebrating our 36 anniversary this year).  Had Robotic surgery last Oct.  He is a Gleason 9 (5+4).  He had his catheter for a week.  He was in the hospital for 3 days after the surgery because his doc won't let patients go home until they pass a lot of gas or have a bm.  He was a bit slow.  Have LOTS of water, tea, juices, etc. for hubby to drink.  It helps to flush out his bladder.  We found the Depends Real fit undies to be perfect after the cath was removed.  Some days he also wore a pad inside them.  Get either a big trash can or a 5 gallon bucket to put the large bag of the cath in.  You can 'hang' it from the rim and he can use the bucket handle to carry it.  That makes it easier to move from bed, to recliner, etc.  He will be low on energy for quite a while.  Hubby didn't really start feeling more normal until Dec.  But then he had to start hormone depravation therapy....   You will want to do a lot of research.  At least I did. And you'll feel like you're getting a medical degree sometimes.  Here's two sites I found helpful- they list ALOT of different treatments, side effects, etc.
 
This forum is wonderful.  There are so many helpful, positive people here.  I also found a forum for women dealing with 'their' men having prostate cancer, it is good, too. 
 

Serenity712
Regular Member


Date Joined Apr 2013
Total Posts : 129
   Posted 8/22/2013 8:08 PM (GMT -7)   
Hello and Welcome!
I had a week off when Hubby had his surgery, and then just three days the next week, which I am thankful for. But after that first week I think he was ready to be on his own.
I think it was kind of hard, mentally for him at first, he'd never had surgery before. So I think it took him a couple days to realize his body was still just fine.
He was able to eat a regular dinner the first night of surgery, and every meal thereafter. He did have some constipation issues the first week or so, but I think that was due more to lack of activity - trusting his body again. Stool softners every day, and milk of magnesium did wonders.
He chose to sleep in the reclinor until his cath came out. (We have dogs & cats- was afraid one would mess with the tubing...).And we kept the cath bag in a bucket, in case of leaks & keeps it off the floor. Don't worry if you see blood in the urine when he exerts himself at all, completely normal and clears quickly with drinking plenty of water, etc. I also got some 'incontinence cream', that he put on the tip of his penis as it became irritated from the cath tubing. Hubby liked wearing loose basketball type shorts.
He really didn't have any issues from the surgery, everything went pretty smooth. Having a desk job, he went back to work three weeks after.
I think having a weird sense of humor also really helps.... We cheered and laughed over each early bm, and cracked up laughing when he sprayed me with the 'hose' once. ;)
We were both scared to death and bawling, and I read every single thing I could when we got his diagnosis, but in Hubby's case it turned out to be very 'do-
able'.
We wish you two all the very best, and please don't hesitate to ask any questions. It sooo helped us in having the unknowns removed! This group is a true gift, such a blessing!
Diana


able'.
Much loved 54 yr old hubby diagnosed 2/28/13. 2nd biopsy done due to rising PSA, last PSA 12/14/12 =9.96. Neg DRE. Previous biopsy 5 yrs ago neg, but fluctuating PSA.
Biopsy 2/28/13- 3 of 12 positive. Gleason 7
DaVinci 04/15/13. First post-op PSA .02. 2nd @ 13wks .01
95% continent 50% ED

Startech
Veteran Member


Date Joined Jun 2011
Total Posts : 984
   Posted 8/23/2013 8:57 AM (GMT -7)   
Live Out Loud said...
Fauntleroy said...
16 of 16, you guys need to be investigating other treatment methods


Like what?


Hello and welcome to the forum. We all don't have all of the information that you and your surgeon have. With 16 of 16 cores positive, I would be concerned that the Cancer may not be contained just within the prostate. You need to ask your Dr. what the probability is that he can not get all of the Cancer.

If he can't get all of the Cancer, then that would be considered failed surgery. With failed surgery, you and your husband will then be dealing with the side effects of surgery unnecessarily and have to choose additional treatments such as Hormone Therapy (HT), and/or Radiation (RT) and the additional Side Effects (SE).

In cases where there is a high probability of Failed Surgery, there are better alternative treatments such as the above mentioned additional treatments as primary, Cyber Knife, Brachytherapy Seeds and a few more that you can research if warranted.

I have become a strong believer that a patient is their own best advocate and there is nothing wrong with asking hard questions and getting second or even third opinions while deciding the best treatment options. We are not doctors, just experienced patients that want to help you get the whole picture.
enlarged prostate at age 25-dx'd 51
3/2000 psa=.08
4/2002 psa = 1.4
4/2011 psa= 49.2
5/2011 Prostate Biopsy-3 of 12 cores Positive
Gleason 4+4=8
T2c n0m0
Bone&CT=neg
MRI-1 nerve bundle involved
open RRP 8/5/11,home 8/6/11,cath out 8/16/11
Post Op Path
71g-1 NERVE spared
Gleason upgraded 5+4=9
13 lymph nodes,SVI neg
Margin-indeterminate,PNI-pos
pT3aN0Mx
Zero Club, ED/1 pad

Post Edited (Startech) : 8/23/2013 9:07:05 AM (GMT-6)

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