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Getting Ready for 'post surgery'

worriedabouthubby
Posts: 37
Joined: Aug 2012

My husband will have his Da Vinci surgery in 2 weeks. I know I should have incontience pads (or diposable underwear- he's still deciding) on hand. Other things I've read suggest having alcohol swabs, good hand wipes and loose fitting pants for him. Are there other things I should 'stock up' on?

mrspjd
Posts: 693
Joined: Apr 2010

Here's a link to a pretty comprehensive list on another PCa forum called, "Things I Wish I'd Known Before Surgery, etc."
http://www.healingwell.com/community/default.aspx?f=35&m=1717641

Best of luck to you both.

Beau2
Posts: 241
Joined: Sep 2010

The Healingwell list that majpd gave you is a great one and really covers a lot. One thing that really helped me was a plastic bucket that I used to carry the cath bag in. I also parked the cath bag in it when I went to bed at night.

Good luck to you and your husband.

mrspjd
Posts: 693
Joined: Apr 2010

Bea has a good idea about the bucket.  A friend of ours does the same thing for his indwelling cath at night.

Beau2
Posts: 241
Joined: Sep 2010

The Healingwell list that majpd gave you is a great one and really covers a lot. One thing that really helped me was a plastic bucket that I used to carry the cath bag in. I also parked the cath bag in it when I went to bed at night.

Good luck to you and your husband.

Samsungtech1
Posts: 350
Joined: Jan 2011

I went with pads. Underwear just turned me off. I am two years out and unfortunately still use pads. I was down to one a day and now up to three. My cathether got blocked and had a mini emergency. Need to be aware that if you are drinking 8 ounces of water something has to come out. If fluid goes in it has to come out. Be aware of this. If a blockage occurs you need to get tomthe dr. Asap.
Not sure what gleason score is and PSA level is, but depending on this is what might be coming. It all makes a difference.

Good luck with your journey,

Mike

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

This is what I went thru with post surgery. Not everyone will go thur the same. It will vary.

Pain, bad gas pain for about 3 to 4 days after surgery.
No lifting above about 20 lbs.
Walking is very important, move around as much as possible.
The Cath bag, will need to be watched and emptied all of the time. Mine was in for 2 weeks, but I was able to sleep at nite.
The hospital in my case provided me with all of the post surgery supplies needed. You need to watch for infection around the entry ports. In my case there were 5 ports.
Showers are ok, no swimming pool or hot tubs, this is due to infection.
No driving for 2 weeks.
When the cath comes out there will be bladder control problems, in my case I also had bowel control issues. My doctor prescribed stool softners, use these.
Now Your husband should of started doing kegel strenghting exercises, this is very important.
Leaking I was able to control to a certain extent during the day, but at nite this is difficult, so expect wet shorts.
male pads worked for me.
depression will be there, you all have to work thru it.
tiredness will be there.
I returned to work after 6 weeks, the first week kicked my butt big time.
Prepare yourself for this, it will occur at varying levels. Some MEN donot have all of the symptoms, hopefully this is case on your Husbands part.
I am out by about 19 months and still having minor problems. If there was a better way to treat I would look into it.
Surgery allows the doctor to get inside and look round, also to remove the lymph nodes and biopsy them, If you have good doctor they will remove a number of them and check for cancer.
My doctor removed 7 lymph nodes and biopsied them, they came back clean
But PNI came back positive, so the fight continues.
Start to collect all of the medical reports, above all request the surgery report. This helps for future treatment.

ED will be there, if the doctor starts prescribing the happy pills use these, this helps in healing. If he does not request them.

Good Luck my thoughts are with you and your husband. Please keep us posted, what I posted is what I went thru. This is major surgery. Keep up the fight.

mrspjd
Posts: 693
Joined: Apr 2010

Oops duplicate

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Hi and glad to see your concern for your hubby! I would suggest keeping your receipts! I bought numerous things and was able to return the majority that I never used! HURRAH!

I've not read the healing well list in awhile but make sure and have a pad cover on your mattress smaller pad under the sleeping area of your husband. I needed this one night only.

I used no disposable underwear, used only 1 pad! Did use the bucket as suggested and get lots of ointment for rubbing at the tip of the penis wear the catheter is. It helped tremendously! If possible get the kind that has a pain medication in it.

Good luck and I've passed my 3 year post surgery mark.

lewvino

hunter49
Posts: 204
Joined: Oct 2011

The bucket for the bag is a good idea. I also used a recliner to sleep on which was easier than being in my bed until the cathetar was removed. have gause pads and alcohol to clean his hands and the conections when changing from the small to the bigger bag. Walk as much as opossible. I used tylenol for pain no drugs and keep stool softners going to ease bowlmovements. He will do fine as he has a great supporter.

worriedabouthubby
Posts: 37
Joined: Aug 2012

Thank you all for the advice. I've gotten a few more things together. Some things I have to wait on his input. I have tried to get my husband to get another opinion. Originally we thought surgery would not be an option because of the Gleason score and high PSAs - plus he really didn't want it- afraid of the catheter. But once the scans came back 'clear' he became convinced that it is contained, we're getting it before it spreads, etc. I can't convince him otherwise. He won't go for anymore opinions. He can be VERY stubborn when he makes up his mind. He is absolutely convinced this doc is the best and won't even think about talking to a radiologist or oncologist. I can't push anymore without making him REALLY angry- and neither of us needs that.

hopeful and opt...
Posts: 1331
Joined: Apr 2009

research will improve outcome. as I had mentioned to you on previous threads., in my layman's opinion the scan is not a proper diagnostic test.

I wonder, why is that your husband believes that the surgeon is the best?

For example, does he know how many surgeries were perforned by this doctor? Where was the doctor trained for surgery, did he do a fellowship? What is his surgical margin? etc, etc.

What are the logical reasons that your husband gives for thinking that this doctor is the best, or do you think that he is panicing, and simple wants to take "action" before it is too late?

Please excuse me for my directness, but this is what I truly beleive based on my research, of course the final decision is up to your husband.,....he is the one who will have to live with the outcome.

I wish you and your husband well in whatever decision you make.

worriedabouthubby
Posts: 37
Joined: Aug 2012

This uro was recommended by our PCP as 'the best in Charlotte and the southeast".
He's done more than 1000 DaVinci's- in fact, was the first in Charlotte to do them.
I saw the 'diplomas' in his office- several fellowships, etc. - all at 'prestigious' universities/hospitals that I recognized- but don't recall them right now ( I think one was at John Hopkins- but can't be 100%b certain).

Is he panicing? no I don't think so
Does he want to take quick action? YES! He seems to truely believe that the surgery will 'cure' his PCa and that it can't possibly have spread because the scans were clear.
I've tried to explaint that the CT will only show a spread to the lymph glands once they are VERY enlarged. In fact the URO used that exact language with us. I also emphasised that the bone scan only shows mets once they are rather advanced. Neither he nor the doctor felt that doing an MRI or other tests would be useful AT THIS POINT. Before we got the reports from the scans, hubby was leaning towards radiation and/or hormone treatment. But doctor said that he generally could not consider doing surgery AFTER radiation. That seemed to scare hubby. Plus Uro discuassed the possiblility of doing one round of HT prior to surgery, but said that would push surgery into the first of 2013. Hubby didn't want to wait. If he's going to do it, do it as fast as possible. He wouldn't have waited until Oct. 9th if Uro would have done it faster. But Uro wanted rectum, etc. to heal from the biopsy.
I've 'pushed' all I can about 2nd opinions and more tests. It is HIS cancer, HIS body, so I have to let him make the decision and not aggravate him. He's feeling positive right now, and I understand how important that can be, too.
But I am preparing myself for the PSA NOT to be below zero in 3 months, and for 'us' to be looking at radiation and/or HT sometime in Feb. 2013.
His appointment with the anethesologist and other hospital staff is tomorrow. I am hoping he will let me go with him.
9 days to surgery and counting......
Thanks again to all of you for listening!

Samsungtech1
Posts: 350
Joined: Jan 2011

You mever mentioned his gleason score. How many positive cores, etc. Hopefully his gleason is below 6. After that, flip a coin. Hopefully it iscontained and all will endwell for you and your husband. I wish you both well. Keep us informed as to how his results turn out.

Good luck,

Mike

worriedabouthubby
Posts: 37
Joined: Aug 2012

I've tried to get my 'signature' to show with his results- still learning this board.
He had a life insurance physical on Aug. 10- first ever PSA. Came back 73.76
Got him to my PCP doctor (10 days after 1st test) they repeated the PSA and did a DRE. PSA was 81 and doc said prostate felt 'firm'. Referred him to Uro. Uro did a DRE and scheduled a biopsy. Biopsy done on Aug. 30. 8 cores - all positive Gleason 5+4=9 some cores 90% involved, others as low as 50%. Had Bone Scan and CT scan Sept. 5. both show no 'detectable' spread of PCa.
I had thought that with a high Gleason 9 that surgery would not be an option- expected to go to HT and/or radiation. So had hubby initially. In fact he was opposed to surgery (just because he didn't want a catheter). But he changed his mind when he heard the scan results. That has convinced him (I think wrongly) that the cancer has not spread. MRI not a option at this time- Doctor, husband and insurance.
I'm crossing my fingers that we will get a path report from surgery that has clear margins-but not really expecting it.

One way I cope with things is to learn as much as I can, prepare myself for worst possibly outcomes mentally and emotionally. And hope for better- and celebrate when we get it ( so far most things have been better than I thought they could be- like my mother-in-law's strokes and hip fracture and mom's back surgery....). But I've got a tingeling in my thumb that this won't be like that.

With only 9 days to go, I'm focusing on being ready for his 'homecoming'- trying to think of any and every thing that I might want to have on hand for his comfort, etc. He doesn't make a good patient- so I'm trying to mentally prepare for his grumpiness (He'll have reason...).
Thanks for all the input and suggesstions.

hopeful and opt...
Posts: 1331
Joined: Apr 2009

In my layman's opinion, I believe that you are very informed. Yes it is your husband's cancer,and it is and should be his final decision, but also it is a couples disease that affects you as well as him. Your input is also very important. You are a team.

PS. By the way, if he has an MRI and it shows that the cancer has excaped the capusule( and we all hope that it has not) it would not be necessary for him to have surgery.

I wish you the best

Samsungtech1
Posts: 350
Joined: Jan 2011

9 is a bad score. Most of us with 9's have escaped cancer. Most times they can not see cancer bu whn surgery is over they tell you how it was in the vessells, bladder capsule etc. I had a 9 and urologist said it was contained. When I woke up found out cancer was in vessells, took them, and in bladder neck. It was also in my lungs, but urologist did not believe in Agent Orange studies. Anyhow I got done with RP, then had 37 radiation treatments, then had an x-ray done on my own and had several nodules in lungs. I quit smoking in 1985 and was informed that this was what caused nodules. They did a very painful biopsy to see what I had and it was prostate cancer.
9 is not a number to play with. Surgery is ok because they can see where it is. Normally with this high a number it has escaped.

I really wish both of you well, but it seems to me you are not talking to your doctors. They should have told you what you are looking at.

Mike

worriedabouthubby
Posts: 37
Joined: Aug 2012

I am talking to and listening to the docs and researching to find everything I can. I am fully aware of the seriousness. But he wants so badly to believe that this will all be fine. I am trying to arm myself with knowledge and to get him to be open to the facts. But I don't want to alienate him. He is a very stubborn man. I have been caring for many people over the past fewyears and am rather experienced in dealing with the health services, medical personnel, and in doing research. I view this board and others that I am on as tools to increase my knowledge. I also hoped to find emotion support. And in fact I felt I had until your last 2 sentences. My husband my br in denial about how bad things MAY be, but I am not.

Samsungtech1
Posts: 350
Joined: Jan 2011

I apologize for upsetting you. This was not my intent. It just seemed lime you were taking this lightly. Unfortunately, as happens, when you are trying to expand your knowledge to help your husband it is like a puzzle with missing pieces. I asked my question because you provided little information. Iam sorry for your curcumstances. I did not mean to upset you. I was trying to understand your situation. You have alot on your plate and you definetly do not need me adding to it.

Good luck.

Mike

worriedabouthubby
Posts: 37
Joined: Aug 2012

Samsungtech1- I'm sorry I snapped at you. You were trying to be helpful. I have made several other postings and forget that (because I haven't yet figured out the signature thing) that everyone who replies to one of my posts doesn't know all I've posted. I'm just very tense right now- we go to see the antheseologist at the hospital tomorrow and I've been mentally runnig around and around about what I need to do to be ready for the surgery and his homecoming. Because HE is in denial about alot of things. He won't make decisions about somethings because he doesn't want to think about them. I am also still caring for my mother-in-law and am worried about her care suffering while I have to be more focused on him. I didn't mean to take it out on you. Again, I'm sorry I responded without thinking. Thank you for all you do by sharing your knowledge and experience with newbies like me. Forgive me.

worriedabouthubby
Posts: 37
Joined: Aug 2012

Samsungtech1- I'm sorry I snapped at you. You were trying to be helpful. I have made several other postings and forget that (because I haven't yet figured out the signature thing) that everyone who replies to one of my posts doesn't know all I've posted. I'm just very tense right now- we go to see the antheseologist at the hospital tomorrow and I've been mentally runnig around and around about what I need to do to be ready for the surgery and his homecoming. Because HE is in denial about alot of things. He won't make decisions about somethings because he doesn't want to think about them. I am also still caring for my mother-in-law and am worried about her care suffering while I have to be more focused on him. I didn't mean to take it out on you. Again, I'm sorry I responded without thinking. Thank you for all you do by sharing your knowledge and experience with newbies like me. Forgive me.

worriedabouthubby
Posts: 37
Joined: Aug 2012

Oops- dulipcate

worriedabouthubby
Posts: 37
Joined: Aug 2012

Samsungtech1- I'm sorry I snapped at you. You were trying to be helpful. I have made several other postings and forget that (because I haven't yet figured out the signature thing) that everyone who replies to one of my posts doesn't know all I've posted. I'm just very tense right now- we go to see the antheseologist at the hospital tomorrow and I've been mentally runnig around and around about what I need to do to be ready for the surgery and his homecoming. Because HE is in denial about alot of things. He won't make decisions about somethings because he doesn't want to think about them. I am also still caring for my mother-in-law and am worried about her care suffering while I have to be more focused on him. I didn't mean to take it out on you. Again, I'm sorry I responded without thinking. Thank you for all you do by sharing your knowledge and experience with newbies like me. Forgive me.

subu1970
Posts: 12
Joined: Jan 2011

Not to burden you any more, but Davinci or RRP, it will be a great idea to start thinking about ED rehabilitation, and about Kegels for strengthing the pelvic muscles. It may take a while to have both of these functions back to normal. Persistence and patience is the virtue. Do not give up on getting completely well. Good luck.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

thank you for providing some more details on your hubby. Ultimately as you have stated it is his decision to make. Be there and provide support for him but also get support for yourself also! A gleason 9 is one of the harder cases to treat. Yes the doctor can go in and remove the prostate. Its good that the doctor has a good number of procedures under his belt. However keep in mind the following: Being a gleason 9 the doctor will most likely take larger margins. That is to cut wider around the prostate to get surronding tissue that will be sent to the lab for analysis. I'm a gleason 7 (Three year post surgery). Not to discourage you but there is a good chance the 'cancer' has allready spread. THis may not show up yet on scans but they will closely watch your husbands PSA post surgery. MOst likely checks every 3-6 months.

Some Doctors recommend a double hit against the Gleason 9's. Surgery followed by radiation to surronding tissue.

Does your husband like to read? He may want to read Dr. Patrick Walsh's book on surviving Prostate cancer. It is written in easy to understand terms and he talks about all kinds of scenarios in his book.

There are many woman on this site who will be glad to provide you the support you need. You may also want to check another useful online forum called healingwell.com THey have many on that forum who are further down the road with 'advanced cases' of prostate cancer and are also very willing to assist others.

Again best wishes to you and your husband please keep us informed!

lewvino (larry)

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