New Here and My Husband is Having his RP this Week--Suggestions for Support?

Welcome to the forum Kitty !!...from reading your post , I get the feeling that you are a loving and very compassionate wife. It`s going to be a long haul for both of you and there will be many ups and downs along the way .....at 54 your husband is still young and the changes will probably be difficult for both of you . You didn`t mention if he is on or will be on any Hormone therapy .....that alone has some crummy side effects let alone the removal of the gland....if you have been following the forum posts you have read many accounts of the side effects of the different types of treatment .....I chose radiation and Hormone therapy , so different than removal , so I`m sure some of the others will be along to give you some pointers ....I`m just feeling your confusion and bewilderment with what you both are up against .....just stay the loving wife that you always have been and understand whats ahead for you both...you have each other ,,,,something many of us out here do not have....hang tight and you both will make it through this chapter , but remember it will be a new normal for both of you after the surgery...... peace and love ....David

Again, last minute advice and from another GS9'er, I have the same questions and opinion ASA has above. If he did consult with medical and radiation oncologists, forgive me. But with this disease, one must be their own best advocate. Because of my high risk status, even the surgeon at MSKCC told me that radiation was my best bet to beat this. The thought process from the doctors was why undergo surgery, when with the high chance of something already leaving the prostate, you would need radiation anyway. I chose the "triple play" which is ADT (hormone treatment), brachytherapy and SBRT (radiation). Throw everything you can at it and not suffer the surgery recovery and issues and then have to go through possible radiation afterwards.
Just my opinion, but that's what we are here for. All of us. To find out the most we can about this disease and offer our opinions.
Best of luck to you and your husband.

Kitty,
I see that TUCC’s prostate cancer home page prominently features a video that makes a point of how they offer external beam radiotherapy and brachytherapy (seeds). Perhaps you’ve seen a radiation oncologist there already and discussed those options. If you haven’t, it’s probably worth it. I’m a surgery guy, but just like others who have responded already, my first thought when I read about your husband’s G9, and the expectation the surgery won’t spare nerves, was to wonder why you haven’t mentioned radiologic options.

Post Edited (Saipan Paradise) : 7/22/2018 12:33:56 AM (GMT-6)

why on earth are they doing surgery? 5+4 G9, both sides affected, PSA 18.1 -- very high risk -- and they are doing surgery? that just makes me sick.

I guess you are asking for support since your husband is going to have a surgery which is already decided and set for next week. It is possible that your husband will need further treatment and you should be aware of that. Surgery with very high risk diagnostic is certainly an aggresive option but it gives good outcomes in many cases. You will need to know the path report and maybe the first psa test to know more exactly where he stands and if there is any need to do something else right after. The first step will be the recovery from surgery that is usually carried out without much problem. An experienced surgeon is certainly the best warranty that it will be the case. He has many chances to be alright after this ordeal.

As you progress though the process of surgery....it will become apparent....day by day...what's needed and what's not. A recliner is something he would use. I sat in mine for a week after surgery.

The unknown makes it seem as though there's so much that needs to be done....the whole thing...the diagnosis of cancer....the surgery....all of it....can make us believe we are not prepared for it...and we need help in that preparation. Just know that you will both get through this. You may feel lost right now.....but....it's like being lost in a department store when you were a kid. As scary as it seems....and as unprepared as you both may feel....you'll handle it. Your parents will not leave the store without you. But...it's difficult to know that where you all are in your journey. Just put one foot in front of the other....take it as it comes....and you'll come out the other side.

Kitty talk, welcome to our little,place in the world.

You are four days away from surgery. So my guess is, it’s unlikely you will start making appointments with Radiation Oncologists to explore alternatives. It would be a good idea if you did. But know that if you guys feel this is the right path for you, everyone here will support you, I think, from past experience.

In addition to Fairwind and Issland Times suggestions for support, be aware, thatbafter surgery, itvwouldnt be surprising if he went through some period of depression. He’ll probably work through it and get used to the new normal. Bit just be aware, that’s where he may need some support and understanding.

Good,luck.

A quick note on walking and the recliner...

You may notice that you've been getting lots of advice that you encourage him to walk a lot after surgery and you've also been getting advice about having a recliner for him to use. It may sound a bit contradictory but it's good advice. During the operation his abdomen will be inflated to make room for the robot to work. As he recovers, walking will help his organs settle back in place, will help the residual gasses work their way out, and the mild motions will help keep healing tissues from sticking to other nearby structures as they heal. So walking is good. But keeping his torso vertical will also tend to make things swell. (That's "swell" as in becoming swollen, not swell as in nifty.) Two weeks after my surgery my surgeon's nurse told me that my scrotum becoming swollen and turning rather purple was nature's way of telling me that I may have overdone the whole walking thing...

Thus the recliner. While he recovers if he isn't sleeping he should either be walking or reclining.

Kitty, every message board has its own flavor. Some are the more chummy "congratulations on your success" type, while another is more "oh I'm so sorry to hear about this". This board in particular is an excellent resource for small snippets of highly relevant technical information.

But as you've probably noticed, there is a chorus of "surgery is wrong, you should have radiation". Reasons are presented, respectfully, which are derived from studies of large groups of men, with the thought being that for X number of men who have this characteristic, here is the best thing to do... and anyone who does otherwise is not seeing the big picture.

This is a highly personal decision, and in the end it truly will affect only you and your husband. It has become like trying to find accurate news these days without all the opinion that gets mixed in with it. You have made your choice given the information you had available. Another person in a similar situation may have chosen differently, but that is what makes us all individuals.

So on to your husband's recovery. The recliner is important. His abdominal muscles will be weak. It will be difficult to get in and out of bed for a week or two. The recliner makes a good place to rest without dreading how to get back up again. Short walks should be fine. Going outside will have some added complications. To and from the kitchen and bathroom worked okay for me.

He will have a catheter for a week to ten days. If he has never had one before, it is scary, and it is terribly awkward and cumbersome. Sometimes they do leak. I kept mine in a big Home Depot bucket... hanging to hook on the side of the bucket and night and using the handle to carry the bag around during the day. It's also handy for carrying things around the house when you don't have a free hand.

He will need some polysporin and cotton to clean the tube coming out of his penis. Most of all, please understand that he has just been thru a tremendous trauma... not only the surgery, but the diagnostic phase and the fears of what will happen later on. Talk with him when he wants to, and don't when he doesn't. When he returns home he may be very emotional and may seem depressed. Depending on whether or not this was his first major surgery, he may already be prepared, but it is inevitable. While in the hospital, everything goes so fast it seems unreal. Then when you return home and get around your familiar environment, it hits you that it really happened, it wasn't a dream. Nothing can prepare him or you for when that hits. Be gentle with him.

Kitty, if you guys are set in stone to have surgery then I'll simply wish you the best, There are tons of threads about surgical recovery including handling both continence and sexual issues so I recommend that you search for some of them to get that perspective.

However, if there is any doubt about your choice, then I'll echo many of the other posters on this thread and suggest that you at least thoroughly investigate the radiation options which may provide better curative results with fewer side effects.

Good luck in any case.

Jim

Kitty, I too wish you and your husband the best. Some of the comments above may have sounded like we were telling you that you have made the wrong decision about treatment, that we will only support you if you make the 'right choice''. Nothing could be further from the truth.

It's precisely because we do care that our alarm bells are going off. Your husband has a serious condition, and there are no do-overs in this--and we're worried that it sounds like the care team is pushing you towards a treatment path that may not give you the best outcome.

You asked specifically about ED: If they take one or both nerves during surgery, his chances of recovering anything like normal sexual function are very, very low. Not impossible, but really slim. That's reality. If he has to go on ADT (Lupron), then not only will function stop--he won't be interested. That's where things stand. To preserve sexual function, as a G9, he has better odds with radiation therapy--but if ADT is needed, it's temporary (a year or so), but it can come back afterwards if not too much damage is done.

Kitty, I am a retired RN. After the surgery if I can help in any way email me? One of my sisters lives in Longmont. She could help. Her husband had penile cancer and had his surgery at the VA in Denver in 2002 and he is doing well. Please let us know how you are doing. Prayers...