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Posted 10/5/2012 6:58 PM (GMT 0)
My husband is scheduled for robotic surgery in two weeks. He had an MRI done and yesterday we met with his surgeon to get his results. His surgeon thinks that he is more of a G7 than a G6. The cancer appears to be contained. The bad news is that he will not have a complete nerve sparing operation. The nerves on the right side will be completely spared. On the left side he will be a level 2 (level 1 is complete nerve sparing and level 4 is the least nerve sparing). Although the cancer is not in the nerves, they are afraid of micro amounts of cancer so they will take some of the nerves on the left side. His surgeon thinks that he has a 90% chance of being cancer free after the operation.

I feel very confident with my husband's surgeon and think that my husband made the right treatment choice. In addition to being a very well regarded sugeon, his doctor is a smart, caring and spiritual man. I trust him to do the surgery. I asked the surgeon whether radiation would have been a better choice given that the nerves cannot be completely spared. He said that the knife will be more precise at sparing the nerves than radiation could be. Does anyone know what the probability is of avoiding permanent ED if the nerves are not completely spared on one side or have any experience with this?

My husband has an appointment to meet with Dr. John Mulhall, a sexual rehabilitation doctor at MSK next week. A friend of my husband's used him after his RRP and had very good results with his program. My husband says that he has a program of putting men on injections for the purpose of avoiding permanent ED if they do not respond to oral medications 6 to 8 weeks after surgery. Does anyone have any experience with this protocol?

My husband has been doing kegels. He has a physical therapist for another problem that he has and she taught him how to do kegels. Is there an official way to learn to do them and is there a recommended program for them?

Any pre-surgery advice is appreciated. Thanks.

Posted 10/5/2012 7:28 PM (GMT 0)
First, I'm glad that you have decided on a treatment plan. One of the hardest parts of finding you have pCa is deciding what to do. If you have researched, educated and looked at all possibilities and still decide on surgery, then good for you. Now don't second guess your decision (unless something really major new is found) and spend the remaining time in preparing. I am gonna put a link to a very useful thread below, you may have to read thru and pick and choose, but it is helpful for anyone preparing for any initial treatment plan.

As far as the ED plan, I didn't go to Mulhall, but evidently my doc had read him since he had me do the same plan. I went on the pills 2 days before surgery and started injections at 6 weeks. There is some research that indicates there is quicker healing and maybe even early regeneration of nerves that are damaged by the early use of injections. That's down the road, though, so your focus right now is to prepare for the surgery.

One thing I can suggest is to do like the signs say- "I want to arrive at my grave worn out, used up and with a big grin on my face, knowing I lived life, not just lived." The same can be said for that soon to be discarded prostate gland. Show up the day of surgery with it drained, worn out and suffering from overuse..... devil

Well, darn it to heck, I forgot the link, didn't I?

www.healingwell.com/community/default.aspx?f=35&m=1717641
Posted 10/6/2012 3:51 AM (GMT 0)
Over the next 6-8 weeks things are going to be moving pretty quickly..Lots of things moving in different directions..You are going to have plenty of things keeping you busy for a while..Your husbands post surgery pathology report may present you with a new set of issues that change the nature of the playing field..While "nerve-sparing surgery" offers hope, many of us have discovered this hope is sometimes not realized..Your surgeons first goal will be to cure your husbands cancer, not necessarily preserve his potency. All surgeons have the best of intentions going in but they don't know exactly what they are going to find until they get there. The final outcome is impossible to predict...There are no set rules in this game, no guaranteed outcomes, no two cases are exactly the same...

The best of luck to you...We all hope you get through this cancer-free and everything still working properly..
Posted 10/6/2012 4:00 AM (GMT 0)
Bluebird,

I can't help you with the ED question but I believe your husband's choice of the robot is best. His surgeon will be able to see so much more with the camera.

Read all the older post to prepare for the surgery. I found HW 2 weeks before my surgery and it really helped me prepare for it.

I had my surgery almost 12 weeks ago and my priorities were:

1. Get the cancer out!

2. Hopefully be continent asap, still working on that.

3. Overcome the ED issues asap, which is coming along nicely, thank you.

I went in as a G6 but came out a G7 with positive margins.
Hopefully his surgeon can spare enough nerves. Sounds like you both have a great plan going so far.

The fact that he is working on his kegels now will be very helpful. I am currently doing 10, 10 second kegels every hour. I just found a stroke counter at a golf store a couple of weeks ago, that I use to help keep track of my kegels. It has 2 counters for two golfers. I use one for my current count and the other counter for my "sets". i try to do at least 100 kegels a day.

Good luck to both of you. Robotic surgery is great. He'll be up and around in no time.

Bill
Posted 10/9/2012 1:38 AM (GMT 0)
Thanks for the replies. We know that my husband's pathology is unknown until we get the report after surgery, and even if it is clean, I am aware that recurrance is a possibility.

To be honest, this whole thing seems surreal now. My husband has no symptoms and everything works as it should. But in two weeks time that will change so he is trying to be proactive and prepare as well as he can.

As far as getting all of the cancer out we picked one of the best surgeons around, and we trust him. My husband has improved his diet but there isn't much else we can do on that front.

For the incontinence that is coming, my husband has started doing kegels. I guess that I will buy incontinence supplies and some loose sweatpants for him.

As far as future ED goes, My husband saw Dr. John Mulhall today. Dr. Mulhall was encouraging, and wants my husband to start taking 25mg. of Viagra every day starting today. He will evaluate him 6 weeks after surgery and see if additional measures are necessary. I picked up the Viagra at the pharmacy today and was charged $410 for 15 pills of 100 mg. each. Dr. Mulhall wants him to cut the pills into quarters. So I guess it will be around $200 a month for Viagra. I hope that he has no bad side effects from the pills now that I already paid for them.

10 weeks ago PC was the furthest thing from our minds. Now preparing for surgery physically and emotionally is our new normal. I don't know what the future holds. I have so much respect for how members of this forum have dealt with all aspects of PC and hope that we deal with whatever is to come as well as they have.

Post Edited (bluebird123) : 10/8/2012 8:18:04 PM (GMT-6)

Posted 10/9/2012 2:12 AM (GMT 0)
Thoughts for a positive experience and good results. We started the same way - no symptoms and he's still here 17 years later. It's been a journey, but until this year life has been good health wise. Life is still good, but this last year been intense with all the treatments.
Posted 10/9/2012 4:25 AM (GMT 0)
Bluebird,

It sounds like you have a plan in place and I'm sure he'll do fine. The pills are expensive, but the way I look at it, it's like the cost of a drink.

Before surgery, I did as much walking as I could. They say it helps with recovery and I think it did. After surgery, I found it much more comfortable to sleep in a reclining chair until the catheter came out. I also stocked up on DVD's to watch, as the week before they remove the catheter can get boring.

Good luck. It will be behind you before you know it.
Posted 10/9/2012 12:24 PM (GMT 0)
Thanks for the kind words of encouragement Passages and FrackMe.
Posted 10/9/2012 12:27 PM (GMT 0)
Hello Bluebird,
I am glad that you and hubby have decided on a treatment plan and are moving forward. Not surprisingly as I've been following you guys from the beginning, it sounds like you have done all of your homework and are well prepared to move forward to the next big step of this PCa journey and getting the treatment done.
I too know what you mean about having your world turned upside down - going from no symptoms and being very healthy to getting the "C" word and having to go through the hell of researching to understand the beast and then how to beat it down. You'll both be fine afterwards as you've done your homework, you know what to expect in terms of post-treatment issues and are well prepared to deal with them. Keep your faith and vision and don't look back - only forward!
My thoughts and prayers continue your way.
Posted 10/9/2012 12:36 PM (GMT 0)
My husband's surger is today. I know how hard the waiting is. Yesterday seemed like it would last forever. I'll update you on how it goes. I made sure I had alcohol wipes, hand wipes, and lidocane ointment for after, as well as the pads/underwear. Go to the Depends website and you can order some free samples. We also bought some 'baggy' cargo pants as he intends to go into work for an hour or two each day next week (I'll drive him). It's a family business, and he is the one that writes the checks, so he really does need to check in each day. Plus I think it will help distract him. Wishing you and your husband the best.
Posted 10/9/2012 1:17 PM (GMT 0)
My URO and surgeon follows the Mulhall protocol for post RALP blood flow therapy. I was on daily Cialis the week my catheter was removed and started injections a month later. ED IMO is a crap shoot with any RP, a lot depends on the age and ED problems prior to surgery. I was using Viagra for at least 4 years before PC and my URO told me I had only a 50/50 chance of normal erections, even with nerve sparing RP. My prostate was large and he told me the nerves were 100% saved but suffered a lot of trauma getting the diseased organ out and I am not too hopeful of a recovery there, but Trimix injections do work.

On the insurance issue for Viagra I know from reading about Mulhall he has had luck getting some insurance companies to cover Viagra for post RP as a recovery therapy. Did you discuss that with him? Also shop around for Viagra prices, I found the Costco pharmacy had the best prices and was who I used before surgery. When I did the 30 days of Cialis my URO gave the 30 day supply free from samples.

The thing to remember is dead men do not have sex. My goals in order were, 1 get the cancer out, 2 be continent and 3 have normal erections.  I got 1 and 2 so far and given the  choice between 100% continent and normal erections, I would choose continence every time. Good luck to you both.

Terry

Posted 10/9/2012 3:00 PM (GMT 0)
Thanks Yooper. I have been following your journey also and was glad to hear that your procedure went so well and that you are having almost no side effects. I hope that things continue to go great for you.

Thanks worried, I wish the best for your husband and will be thinking about him this afternoon and sending good thoughts his way.

Thanks Water Guy. Dr. Mulhall told my husband that it takes 2 years from the date of surgery to know where he will stand with ED. I did not go to the Mulhall appointment with my husband but will ask him if they discussed getting Viagra covered by insurance. I'm glad that you brought up that point and we will pursue it. We do belong to Costco so buying the medication there is another good suggestion. Thanks.
Posted 10/10/2012 4:37 AM (GMT 0)
Bluebird,

Everything I could say has been covered above, but I just wanted you to know there is another member out here who cares and will be thinking of you two.

Looking for a good series of reports on the other side,
Explorer
Posted 10/10/2012 5:15 AM (GMT 0)
Hello Bluebird!  I have been following your posts and your husband seems to have made the right decision.  You'll know more when the pathology report comes in (7-10 days after surgery).  My husband's PCa was contained and nerves spared, but he does have ED.  He chose to have the night bag all the time (as recommended by some gents here) and it worked out fine.  He also used the bucket to hold his bag and slept on the couch, as recommended.

I was in the waiting room for 7 hours and the doctor told me the surgery was successful and he should be cancer free.  Yes, he's in the ZERO CLUB!  He actually wore lounging type basketball shorts to the hospital and for the following 2 weeks.  That allowed him more freedom.

One unusual thing is that he was assigned to rehab for his pelvic floor even though he had done Kegels.  He learned many new things about his body.  Walking was definitely recommended.  He had the catherer for 13 days and felt so much better once it was removed.  Depends were the best the first 3 months.  He's fine in that department.  Oh, one thing that surprised him was how weak he felt.  The hospital release was 28 hours after surgery - way too soon to go home.  It was essential that I help him with his first days taking a shower.  The ED pills gave him headaches and backaches; no other method has been addressed because of other medical problems.

Best recommendation pre-surgery:  GO ON A MINI-VACATION.  If that's not possible, go out on a dinner date!  Get super close as there will be some changes in your sex life - even if it's a short period of time. 

I wish you and your husband the very best.  Same wishes to WorriedaboutHubby!

Much blessings,

Aimzee 

 

Posted 10/10/2012 1:01 PM (GMT 0)
Bluebird,

Congrats on making "the decision". It's so tough. It's surgery, and that means trama to the body, so I hope he takes it easy after it and does not try to do to much. It sure sounds like you are doing all the right things, getting a doctor that you believe in, doing the kegels, seeing Mulhall, getting your supplies...I like Aimzee's advice about the date nights or mini- vacation.

I wish the best for you and your husband.
Posted 10/10/2012 9:08 PM (GMT 0)
Thank you for your good wishes Explorer and Gleason. It does mean so much to know that people care and have good thoughts for us.

Hi Aimzee. I have enjoyed your posts and read the thread about the August surgeries from a few years ago. Thank you for your good wishes. I hope that my husband gets a good pathology report as yours did, because that is what I am the most nervous about. We can't get away to go on a vacation before his surgery, but I will take your suggestion and go out for a nice dinner the weekend before the surgery. Yes, we have been getting super close during this waiting time; we know that things may be very different on the other side.

Post Edited (bluebird123) : 10/11/2012 2:45:56 PM (GMT-6)

Posted 10/11/2012 1:38 PM (GMT 0)
Bluebird,
Best of luck, I recently had robotic surgery and can honestly state that the nervousness that you are currently feeling may be worse than the pain and discomfort after the surgery. Although i rarely post anything in this forum I can't express enough that it has been a savior to me helping me get info about all aspects of this disease !! It is a valuable resource for individuals like me who love to "lurk".
It sounds like you have a good plan and have done your research. My only advice to you is to take it slowly after surgery. I made the mistake of trying to prove to my wife and kids that i was superman, work & obligations can wait!!! Don't try to be a hero, you're still healing on the inside.
Posted 10/11/2012 2:17 PM (GMT 0)
Bluebird,

I want to send a quick message of hope and encouragement.  Our husbands numbers are similiar.  He was also a 7, with the bulk of his cancer on the left side.  We opted for surgery as well.  His surgeon was able to spare his right nerve, but knew going in he'd take the left.

You mentioned ED, so I want to address the subject.  Stay close to your doctor, and follow the ED protocol.  We too have a very supportive doctor.  He started my husband on Levitra straight away, and it did much of nothing from the on-set as far as sex went.  BUT, that was totally okay.  You see, we were very clear from the start, that more than likely Levitra would not work.  We recognized that his one little nerve he had left, went through a pretty traumatic operation, and needed a ton of time to recover.  We went from a very active sex life, to a non-functioning organ.  When I say non-functioning, I mean, that thing was sleeping, there was no life.  It didn't matter though.  about 4 weeks post op, we tried to work with what he had going, which wasn't much.  I will say, even though it wasn't working, we were both satisfied in the end.  Yes, it was a bit awkward at first, but we pushed through awkward.  We had a few brief moments where we'd talk about the state of his penis :), but always ended our converations with, "its" sleeping and day by day it's getting better!

His doctor moved him to Trimix shortly after Levitra, and trimix worked great.  We jumped for joy!  We kept at it.  NEVER putting too much emphasis on the part of his body that wasn't functioning as it should.  We loved all over each other, snuggled a ton, and kissed a lot.

As each day passed, we started to notice that there was life down there without medication.  Not firm enough, for peneration, but life.  I was/am estactic!  I'd literally do a happy dance, because I felt so amazed at how his body was slowly healing itself.  The point I am making is, stay light about it all.  Don't let it get you down.  Sure, at first it is a tough transition sexually.  Acknowledge it, BUT don't get stuck there.  Remember, day by day, it's getting better, AND it takes time for the body to heal.

We are now 8 months post op, and Levitra works!  As of late, we are ALMOST close enough to do it without anything at all.  Sorry, that wasn't quick, but I felt compelled to share.  I believe this is a big reason why men don't talk about prostate cancer.  This ED stigma is a heavy burden to carry around.  There is HOPE!

Take care!

walkbyFaith

Posted 10/11/2012 7:40 PM (GMT 0)
Thanks for the advice and good wishes rowlinrock.

walkbyfaith - your advice is the best! First of all it is so encouraging to hear that your husband, who had his nerves spared on only one side is recovering so well. That is exactly the information that I was trying to find out when I made my post - what was the possibility of that sort of a recovery. I also hope to emulate your attitude with regard to ED - to be lighthearted about it while continuing to move forward. I also like your suggestion to not put too much emphasis on the part of the body that is not functioning as it should. It sounds like you and your husband have a very healthy attitude towards rehabilitating your intimate life. Thanks for sharing your story and I hope that he continues to improve.

Post Edited (bluebird123) : 10/11/2012 2:41:49 PM (GMT-6)

Posted 10/11/2012 8:21 PM (GMT 0)
We loved all over each other, snuggled a ton, and kissed a lot.

I just love this statement!  It's so positive and says a lot! yeah   Walkbyfaith, you have provided Bluebird with a terrific guideline.

Bluebird, how nice that you read "August Surgeries".  We were so open and caring on that thread!  To this day, it remains my favorite in this entire forum.  It was like a TRUE story telling format.  I like when some of the Ladies drop in from time to time!

Worriedabout hubby, I hope your hubby is doing fine on the other side.  My thoughts and prayers are with you both.

Much blessings,

Aimzee

Posted 10/11/2012 9:18 PM (GMT 0)
Thank you ladies! It is really rewarding to know I may help in some way. It has been our recipe, and it is working. I imagine if we'd focused too much on what was wrong, and stayed stuck there, we'd be in a totally different place. I have to say, I have been a great rehabilitator! LOL My hubby thinks it is just so funny to remind me, "these are doctor's orders (rehab)". He's been amazing through it all. He made his decsion for surgery, and never looked back. He doesn't dwell on his current circumstance. He doesn't see himself as broken, and I admire his attitude. He makes it easy for me to love him!

I am here if you need anything!
Posted 10/11/2012 10:45 PM (GMT 0)
Miss Bluebird.

My prayers are with you both. Y'all sound like you have a firm grip on the situation and I am confident you will do fine. Attitude is the key. One pre-op detail I reccommend. Pick your favorite vacation spot and today make reservations for three months after the date of surgery. Spend the next three months looking forward to that while recuperating. Wife and I spent my two month anniversary at Jekyll Island and it was wonderful. Did everything we used to and proved that life had not changed. A great morale boost for us both.
Posted 10/11/2012 11:19 PM (GMT 0)
Ironreb,

"I can make her giggle, but I can't make her pregant"! LOVE it! And, AMEN to that. I was able to still get pregnant, but we took that right off the table.
Posted 10/11/2012 11:35 PM (GMT 0)
Heh, first time we got the thing to work, and Junior didn't spit, her eyes got so big. "It's not going to make a mess anymore?" I said "Nope". She said "That's wonderful, you should have done it sooner."
Posted 10/12/2012 12:05 AM (GMT 0)
Thanks for your prayers and good wishes IronReb. I also love your "giggle" comment, and am glad and encouraged to read that you are doing so well.
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