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New Member of HW - daVinci Scheduled February 9th.

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Posted 1/20/2015 9:38 PM (GMT 0)
Hi all,

Just introducing myself to this great group. I thank everyone for their great contributions over the years to this great forum. Very helpful stuff and great support I see as well.

I have been reading as much as possible since I was diagnosed 2 weeks before my 55th birthday during Thanksgiving week 2014.

Definitely trying to absorb as many things as I can before I go in for surgery to reduce my stress level. My surgeon has done over 300 robotic surgeries so far and considered excellent in our area (Sacramento, CA). I have confidence in him. Very patient doc. Very detailed in his explanations and hit on most of the points I've read here on HW. So he passed that test with flying colors.

I watched my Dad die from PCa in 2009. He was dx at stage 4 so too late to do much for him. I've been very good about getting my PSA's done and hopefully, it will pay off for me getting dx so early.

I want to have another PSA done before I have surgery. It will be 3 months since this all started and my PSA in early November 2014 was 4.53. I'm wondering why none of my docs have requested I have one just before surgery? I also had a full body, + brain & heart CT scan (I paid for this privately) as soon as I got my biopsy results. It made sense to me to make sure I didn't have any tumors/cancers/other issues going on before agreeing to treating my PCa (I am a former smoker for many years, but quit 2 years ago). Fortunately, the CT results were fine so I'm comfortable moving forward.

One final comment regarding my health that is not in my signature. I have Spina Bifida. Both Uro doc's did not recommend RT due to possible collateral damage that could worsen my back problem since bladder/bowel issues could really be impacted (I'm very lucky to even have control over bowel/bladder due to SB). It is bad enough to have to remove my prostate and I'm pretty concerned continence will be problematic for me after the daVinci procedure. I'm also a below knee amputee on one side and wear an ankle brace on my other foot all related to SB. This has me very concerned after my surgery due to bending, tying shoes, putting on my prosthetic just to move about etc..I've told the doc I don't think one day will be enough after the surgery before I'm released..I'm very worried about this.

Any comments or suggestions would be appreciated.
Posted 1/20/2015 9:57 PM (GMT 0)
Hi Sparky,

I am no expert but from my perspective post surgery healing takes a little while and with your other conditions you may need some extra help. Do you have family members that can assist you while you are healing? If not, do you have a short term care policy? What about visiting nurses. They may be able to assist you. You like won't need assistance for long. Within a couple of weeks you will likely be moving about on your own. Just a suggestion and best wishes.
Posted 1/20/2015 10:01 PM (GMT 0)
Howdy Sparky and welcome! At first I wanted a final PSA prior to my surgery but finally reasoned(on my own) that it would be pointless as all the PSA producing stuff should be removed, so sort of looking up a dead horses' ass. As for staying in the hospital you shouldn't be discharged until you are ready.

I would assume you're and adaptive type guy having learned how to function with your disability, the same applies with the surgey, Im sure you'll "figure" it out. Best of luck! We'll be rooting for Ya!

Cheers, Doug
Posted 1/20/2015 10:23 PM (GMT 0)
Welcome to HW, sorry you need to be talking to us.

You don't need another PSA - not going to tell you anything new. The decision is made and you're on your way.

Recovery might take a bit longer for you and you might need extra assistance for a few days after. Most hospitals and doctors are sensitive to people with special needs and won't send you home until they know you can care for yourself. When you go through the hospital admissions process, make sure they understand your need. Some hospitals have a recovery ward (skilled nursing) that you can transfer to after being discharged from the main surgical ward if you need more recovery time before you go home. Or you could arrange for some short term home nursing care (someone to come in a couple of times a day to help with dressing, cath, meds, food etc) - the hospital social worker should be able to help arrange.

I am sure you've been through the hospital routine before - just keep asking for what you need.

Hang in there. Not an easy thing to go through. Keep us updated on your progress.

Andrw
Posted 1/20/2015 10:48 PM (GMT 0)
Welcome to the forum, Sparky. My surgery is scheduled for February 4th. I understand completely about wanting another PSA, but the others are right, even if it has changed, it is sort of pointless, since it should be near zero post surgery. The pathology report you get will tell you more than a pre-surgery PSA.

Wishing you well.
Posted 1/20/2015 10:52 PM (GMT 0)
Welcome aboard Sparky!

Your numbers are a lot like mine were. I was 10 of 12 core positive, Gleason 6 in all cores but upgraded to Gleason 7 after surgery. I was also staged at T3a after surgery where you are t2c. The tumor could be very close to the edge or coming out which you won't know until after surgery. Stage t3a means the tumor was starting to come out.

300 surgeries may sound like a lot but I would consider looking for a surgeon with much more experience to be sure that he gets all of it out. If he doesn't cut wide enough, you could have recurrence. You don't have any do overs so you want to get it right the first time with your treatment. My surgeon didn't cost me any more than a surgeon with 300-500 surgeries. This isn't a popularity contest amongst surgeons, it is YOUR life so be sure before going ahead with the plan.

My surgeon, at the time had had over 6,000 DaVinci surgeries and he may not have got it all himself but I did my best to get the best.

Just my opinion and you know what they say about opinions, everybody's got one.

As far as your handicap, they want you to walk quite a bit after surgery for exercise so you may need a little help at first but you heal quickly and in about 1 week, the worst is over.

Good luck!

Bill from Florida cool
Posted 1/21/2015 12:06 AM (GMT 0)
Hi Sparky and welcome,

I wonder if it would be possible to get a second opinion from someone like Peter Carroll at UCSF. It's not that I think your surgeon isn't fine - he probably is. It's just that with the unusual co-morbidities you face, it might be a good idea getting a second pair of very experienced eyes looking at your charts, just on the off-chance that he may see or have some experience with something your doctor hasn't. Maybe the 3 of you can have a 3-way conference call. Just a thought.

Good luck - I hope it all goes smoothly.

- Allen
Posted 1/21/2015 12:58 AM (GMT 0)
Sparky best of luck to you and welcome.
250-300 surgeries, from what I understand is the minimum to be considered very competent at DaVinci RP.
I know you have confidence in your Dr, and thats important, and you probably have good reason to be confident. But you might want yo talk to one or two other surgeons with 1000 or more DaVinci surgeries under their belt, and a track record. Particularly with the other issues you have. This surgery is very complicated to begin with and most people,say that the competence and experience etf the practitioner is more important than the procedure chosen itself.

This is just my humble opinion, and I'm sure your surgeon is competent, just some food for thought.
Posted 1/21/2015 1:01 AM (GMT 0)
Thank you all for the great comments and for the warm welcome.

RE: post surgery recovery - I did bring up my concerns with the surgeon that I'm worried about being released too soon and he said he will keep it in mind once he see's my progress. I explained to him that I am my elderly mom's full time caretaker due to heart issues she has. She lives with me so that complicates things. I have arranged Senior Helpers (caretaker company) to look after her 24/7 while I'm hospitalized. The problem is once I get home my Mom will rely on me to look after her (long story, but add a little dementia to her at her age and you'll see why it's better if I'm not at home for awhile). We also only have one bathroom. I'll be sure and bring this up ahead of time when I'm admitted and of course at discharge. I have Medicare and govt pension supplemental so hopefully they will assist with costs.

RE: PSA test - I'll get over it. Does make sense it won't tell me anything that is helpful. It's the post surgery tests that matter. Thanks for pointing this out to me!

RE: 2nd Opinion - I am not a UCSF fan due to distance and I steer clear of UC in my area (won't set foot in the door ever again after a 16 hour back surgery where they dropped me during surgery and cut my chin wide open (still have a scar from it). It's a very long story but I'm confident I have the best within the Sutter Medical system locally. I'm not thrilled my surgeon has 300 surgeries under his belt, but he is the director of urology. He is the right doc to do this surgery for me. My Neurosurgeon is good friends with this Uro surgeon and IMO the correct bases are covered for my health issues.

Overall, I am optimistic but prepared for complications due to everyone's input I've read so far on HW. I hope I can contribute to the forum as I go through this journey with all of you. I'm having an MRI on Feb 4th and they will be using a coil thingy (forget the technical name) and that sounds worse than the surgery to me! Anyway, I'm sure I'll get through it..Not much choice..
Posted 1/21/2015 1:20 AM (GMT 0)
Sparky, you've clearly educated yourself and no doubt you are making the right decision for yourself. Very interested in following your journey, best of luck!
Posted 1/21/2015 1:20 AM (GMT 0)
Some folks didn't mind endorectal coil. Unfortunately, I was not one of them. Good luck with the coil and even more important, good luck with your surgery!
Posted 1/21/2015 1:40 AM (GMT 0)
Sparky - Sutter is a good medical system, between them and Kaiser they seem to own the medical market here in Northern California. Medicare will pay for a certain amount of hospitalization and a bit of skilled nursing care in the right circumstances. The surgery is a real wildcard here - you can't know how well you'll do. It's possible that after a couple of days, you'll be fine. It's also possible that you'll not be able to cope for a couple of weeks. Doctors can write special orders to keep you around longer but Medicare has some limits that are difficult to fight.

Another idea might be to get a hotel near the hospital for the week after you're discharged (if you can afford that). You'd be near the hospital in case of problems but not where your mother would start noticing you and become a burden. Just a random thought.

From where you are UCSF is a bit of an ugly drive (couple of hours on a good day but highway 80 makes me cringe every time I get on it) so I get that.

as a little story my older brother has CP and needed hip replacement. He's on Medicare/Medical. The doctor and social workers told us up front that he couldn't stay in the hospital more that a week post surgery. The doctor told us my brother would need about 8 weeks of recover before he could transfer between his bed and wheelchair. Well, I arranged for special nursing, care givers, hospital bed, etc for his apartment. Interesting thing happened post surgery - the staff (doctors, RNs, social worker) all finally agreed with me that we couldn't cope with brother at home so after a little paperwork magically Medicare approved and paid for 2 weeks in the surgical department and then 6 weeks in the recover unit.

Hang in there - it won't be fun but you'll get through.
Andrew
Posted 1/21/2015 5:15 AM (GMT 0)
Sparkey,

You have received some very good advice above.

I will add some practical things:

My advise is to, as much as you can, take it one day at a time. There are a dozen uncertainties, some will take months or years to know. But the ones you can influence are the ones happening today.


Scientificlifestyle here, real name is Pat.

I am a few days ahead of you. I had RALP on 18 December at Kaiser Hospital in San Francisco.


I do have a list of recommended items to have on hand:

Sitting doughnut: https://www.amazon.com/gp/product/B000G015X0/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1
***** using this on the ride home is a very good thing and will make the ride more comfortable. I also used this in my recliner during the day******.

I found that sleeping in my regular bed with the water proof pad listed below was most comfortable for me.

Baby Wipers: https://www.amazon.com/gp/product/B00A7NUARS/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

Water tight and absorbing re-usable pads that work for car seats and recliner: https://www.amazon.com/gp/product/B000FED594/ref=oh_aui_detailpage_o03_s02?ie=UTF8&psc=1

Larger water tight and re-usable absorbant pad for bed: https://www.amazon.com/gp/product/B000FOA7C2/ref=oh_aui_detailpage_o03_s02?ie=UTF8&psc=1

Depends guards, heavier: https://www.amazon.com/gp/product/B004OQP3O4/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

Depends guards lighter: https://www.amazon.com/gp/product/B00BCY06D4/ref=oh_aui_detailpage_o03_s01?ie=UTF8&psc=1

Thermometer for forehead: https://www.amazon.com/gp/product/B00005UMZS/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

Antibiotic gel to lube between catheter and the end of willy - Neosporin, this also helps prevent urinary tract infections

Adhesive Anchors for catheter, like a bandaid with a fold-over velcro to hang onto the catheter - "Cath-Secure" got mine at a pharmacy, they should send you home with the hospital with a few. These are very important for not stressing the catheter. The catheter has a bulb filled with saline to keep it in place inside the bladder. The area where the bulb rests is the important re-connection of the urine path. This is the area that needs to heal very well. Some bleeding and pink urine in the bag is normal. It is handy to have a bucket to keep the urine bag in at night and while in the shower. Be careful with the catheter, don't step on it in the shower or catch the hose on anything. I had to tell myself about a thousand times a day to slow down, move deliberately etc to keep catheter safe.

one size larger than normal boxer-briefs (spandex like) are great . They do a great job of holding the Guards in place and they are super thin and you won't get pressure points like tighty-whities

one size larger than normal lounging pants that are stretchy. These will not put too much pressure on your belly which will be sore and bloated, they also let you drop the catheter leg bag down through the leg without having to break the catheter line.

Oversized t-shirt and sweat-shirt for lounging cloths

I used an re-usable 99 cent grocery bag to hold the large catheter leg bag. very un-noticeable.

After surgery, they will get you up and walking, this helps clear the gas used in the surgery. With the prostate removed, there is a spot on the bowel that is thinner and a bit weaker. Use the stool softeners and I also used prune juice and psilium fiber mixed in. Due to the weaker spot, you do not want hard, dry stools or much straining or pushing during a BM.

Best Regards, Welcome to the other side, scientificlifestyle

I wish you all the best! scientificlifestyle
Posted 1/21/2015 6:02 PM (GMT 0)
Wow..excellent tips here. I'm printing and taking notes! Thank you all so much...I've got some shopping to do.

Also, I'll be staying at the closest Hyatt a few minutes away the night before the surgery since I have to be at the hospital at 530am. I don't want to be on the freeways due to fog/rain/bad weather. I may check into the hotel if I'm still not up to coming back home for a few days as a last resort. But I will definitely plead my case with the docs/nurses to stay if I can't even put my prosthetic leg and brace on...
Posted 1/21/2015 8:26 PM (GMT 0)
Hey Sparky,
If you want some really useful tips, check this thread out if you haven't already. I read it less than a week before my surgery. and it helped me get prepared for my surgery. Click on the link below.


Again, good luck and we will see you on the other side of recovery!

Bill from Florida cool

www.healingwell.com/community/default.aspx?f=35&m=1717641
Posted 1/22/2015 6:31 PM (GMT 0)
Thanks, Big Mac! Very helpful link!!
Posted 1/31/2015 6:51 PM (GMT 0)
Update:

I passed my EKG test and medical clearance was approved by my PCP 2 days ago for my RALP surgery on February 9th. All blood lab work was fine as well.

I did ask my PCP to have another PSA test done as it has been 3 months. My PSA was 4.63 slightly up from the one I had in early November 2014 of 4.53. Feeling very relieved it didn't spike in that time...

Having an MRI with endorectal coil this coming Wednesday. Not looking forward to that at all!
Posted 1/31/2015 7:06 PM (GMT 0)
Thanks for the update Sparky, you'll do fine. Just think of all the experience you're gathering to pass on to all your new friends here!

Cheers, Doug
Posted 2/1/2015 7:42 AM (GMT 0)
Sparky,
Happy birthday and best wishes for successful surgery and speedy recovery. We also live in CA and you and my hubby are about same age. Lot of young guys here, sadly. Keep us apprised.
Beth n Gary
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