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Dad not doing well

Steelchuggin26
Posts: 16
Joined: Mar 2013

Hi everyone, my father had the robotic prostatectomy April 23 and was sent home the following evening, and he is just not doing well at all. He is complaining of persistent weakness, catheter is constantly leaking, says hes too weak to move around much, and this is very disheartening because the more a person lays around, the higher their risk of developing a blood clot is. I have asked him if he wants to go back to the hospital, but he refuses because he says they probably wont do much for him, and is resigned to the idea that everything will either stay the same or get worse no matter what. He has been extremely difficult to help at times, frequently griping me and my sister out when we try to change his catheter bags, bed clothing, pajamas, etc, nothing we do seems to be good enough for him, and I just do not know what else to do. At this point in time, I am becoming afraid that having the operation was a huge mistake, and has set him up for catastrophic complications, such as a blood clot. I have told him several times he needs to at least try moving some to help reduce the risk of blood clots, but to no avail. What can I do? Really regretting the decision to proceed with the operation now. 8 days after the operation, he should have seen a lot more improvement than he has.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Brando

Your dad’s behaviour is understandable. The time for recuperation was too short (only 24 hours) and now at home he may be feeling that he is losing his dignity as a leader and father. He may be thinking that he did a mistake in choosing surgery too. Such is enough to reject any attempt of dependency and help.
He needs support from the team of care givers where he was operated. You could inform them of the situation and ask for guidance. They can call him to check for any other symptom, pain from a inflamation, etc. You may also inquire about the time of the next follow-up consultation which is to coincide with the time for removing the catheter. Usually it occurs 10 to 15 days after the surgery when they also do the first PSA test.

You are absolutely right in worrying about him being inactive. Moving is the best way to fast healing from a major prostatectomy. It also helps in exercising the abdomen muscles to avoid permanent incontinence. Ask the nurses to instruct him about a physical program and diet he should follow.
Prostatectomy is a major operation so that we may expect fatigue and weakness. Your dad logically will feel that way too.

In your previous thread you commented that your dad is in good health (63 yo). I do not think that he is at the risk of blood clots but his inactivity puts him at risk of incontinence and erection dysfunction.

Try not to be so anxious. You may wish to attend a local cancer gathering to get opinions from other survivors. Here is a link dedicated to PCa that may help you in finding one close to you. You can also try to get your dad to visit/talk with other survivors;
http://www.ustoo.org/Chapter_NearYou.asp?country1=United States

Here is the link to your previous thread;
http://csn.cancer.org/node/256782

I wish you peace of mind and hope that your dad recuperates the soonest.

VGama Wink

yankeefan
Posts: 69
Joined: Mar 2013

 Your instincts are good, it just takes more than 24 hours to feel any where near well. Try to get him moving in baby steps. Just a few steps at a time. If he was in decent shape to begin with, he should be ok. Let him change the catheter bag. That will get him up a little just for that. Try to stay ahead of the pain. I had to double up on the pain meds for the first few days. Keep him drinking water regularly. I was on oxycodone 5mg, every 6 hours. I often took 2 of these every 4 hours for the first few days. Make sure he's sitting witis his legs up. He should clean around the catheter at least twice a day. I'm not sure about the leaking. Fortunately, I didn't have to deal with that. Call your surgeon if you think you need to about that. Bottom line...hang in there, it should get better in a few days.

yankeefan
Posts: 69
Joined: Mar 2013

 Your instincts are good, it just takes more than 24 hours to feel any where near well. Try to get him moving in baby steps. Just a few steps at a time. If he was in decent shape to begin with, he should be ok. Let him change the catheter bag. That will get him up a little just for that. Try to stay ahead of the pain. I had to double up on the pain meds for the first few days. Keep him drinking water regularly. I was on oxycodone 5mg, every 6 hours. I often took 2 of these every 4 hours for the first few days. Make sure he's sitting witis his legs up. He should clean around the catheter at least twice a day. I'm not sure about the leaking. Fortunately, I didn't have to deal with that. Call your surgeon if you think you need to about that. Bottom line...hang in there, it should get better in a few days.

Rakendra's picture
Rakendra
Posts: 80
Joined: Apr 2013

Tough situation.  A problem is the negativity.  With this desease, one of the most important assets one has is the immune system, and stress and negativity is one of the things that will weaken the immune system.  Understand that his negativity may be a normal reaction for most people, and your acceptance of that will help him mend.  It may take time for him to have a chance to change, so you have to accept this for now.  However, the atitude of the support team is extremely important at this time.  Sure, you are worried, but showing that will not help dad.  You must first be very positive and confident in your atitude when you are with  him.  Try to sit with him, let him know how much he is loved and that all are just waiting to rejoin the good times that were had before.  But watch your body language and facial expressions to make sure they are loving and confident.

Do not say, "Oh, nevermind, you will be alright soon."  Admit that things are tough right now, but lets look forward to the future good days.  Spend time with him. Just sitting is good therapy.  Remind him that everyone is supporting him in any way that HE desires.  Always be bright, cheery, and, above all, loving.  Realistically accept "what is" in this moment, and deal with it in a well thought out manner.  Discuss the depression with your Dr.  Perhaps in this case, medication may help him but do not stay on it long.  The atitude of the support team is one asset you have.  I promise that if you can get thru this early stage with as much positivity as you can manage, he may have a chance to change.  Optimism, positivity, and love are all catching, and he will get the message. love, Rakendra

      

BLUEpac6
Posts: 34
Joined: Jun 2012

It is normal to have blood clots pass after the operation but sometimes alarger clot will not pass and stops the catheter from draining properlly as it did in my case and urine was coming out from around the catheter and had to go to the emergency room to get it unstpped.A friend of mine had the same problem a couple of weeks ago after robotic surgery and the catheter wos already removed and a blood clot stopped up his blsdder and they had to unstop it.The doctor told himthis was normal to happen.I had my radical surgery at 62 in 2009 and I dont remember feeling weak.A year and onehalf later Ihad to have salvage radiation with no problems from it.My pas now is .0003.I feel like if he is leaking around the catheter he may have a blood clot trying to stop it up and should contact his doctor about it.Pray he will do fine.

yankeefan
Posts: 69
Joined: Mar 2013

It may be the catheter is occluded. Explain the symptoms to your doctor and see what he thinks. If it is occluded you will have to go get it cleaned out..a nuisance, but fairly routine... Don't put it off. If the catheter isn't draining properly you need to fix it. Hope your dad is feeling a little better. personally, I think they should keep prostatectomy patients in the hospital for a minimum of 3 nights. There's just too much pain and discomfort to be sent home after 24 hours. You might try having your dad lay down and drink plenty of water for an hour or so...he should see urine draining in the the catheter....if it doesn't call your doc. best of luck.

yankeefan
Posts: 69
Joined: Mar 2013

My doc kept the catheter in for 10 days....counting the day of the operation as a day....It sounds lke you are about at the 10 day point...is that correct? Have you talked to his doctor about his progress, or lack thereof? I would definitely talk to him to get his advice. Your dad should feel a little better just getting the catheter out.....it makes life so much easier once you're not tied to that thing.....

If you are more than 8 days post op, you should have the pathology report by now. How was that? Hopefully all the cancer was contained within the prostate....if so, there is no doubt he made the right decision to have it out (in my view, anyway). Wishing you the best. It's not easy...I'm 3 weeks post op and I'm still not 100 percent....still have some soreness and porblems sitting up, with out the feet elevated, for a long time. I had the open procedure, not the robotic, so perhaps that takes a little longer...in any event, hope things straighten out...if the doc says it's ok...try to get him walking a little bit every day...specially once the catheter is removed.

 

Steelchuggin26
Posts: 16
Joined: Mar 2013

Thanks everyone for your input. The Surgeon that my dad had to do his surgery is in a clinic with 4 other Urologic surgeons, and they have one of them there as an on call doctor every day 24/7. I called Wednesday and it just so happened that the on call doctor that night was my dad's surgeon, I explained to him what was going on, told him about how his catheter leaks, and he said that is normal and to be expected with this kind of surgery and catheter used. I also explained to him dad's profound weakness, and he said that to is also to be expected with this particular surgery, and that it will take some time for him to get his strength back. However I am not so sure of this, Tuesday May 7th will be two weeks out post operation, and he has not showed enough signs of improvement, if anything, it almost seems he is getting worse. He tried taking a shower a couple times, tried shaving, and each time he had to sit back down quickly because he said he was weak to the point of nearly passing out. My sister and I have been as supportive as we can with him, but his attitude is just getting worse and worse as the days go on. I get the impression from him that he feels that I am incompetent to care for him, and this is absolutely heart breaking. I am beginning to think that his lack of strength may be signalling heart problems that we didnt know about previously, or perhaps a developing heart issue, bottom line is, he should have shown some signs of improvement by now if something wasn't seriously wrong. I am also starting to thinks perhaps it is possible that he had micrometastases that were undectable, and are now beginning to grow and spread further, which would be a plausible explanation for his weakness. Why the doctor did not do an MRI and/or CT scan prior to surgery I have no clue, since it seems that most other surgeons do prefer to perform imaging tests to check for more advanced cancer, and any such findings would make such a person non-viable for surgery He goes Monday, May 6 at 10AM for follow up, discussion of pathology report, xray of the bladder to see how the anastmatosis is healing, and from there, they will decide whther or not they can remove the catheter. I remember talking to the doctor after he came out of the operation room, I asked him how the area around the prostate looked, and he said that there was no "obvious" cancer outside of the prostate, but that we would have to get the pathology results to find out one way or another. Beginning to wonder if we made a serious mistake in opting for this surgery, and am now beginning to wonder if hospice may be neccessary. I know that each person is different, and no one person reacts and recovers from the surgery as any other person, but what I am seeing in my father just isnt good. With his clinical stage from the biopsy (stage 1) gleason score (6, 3+3), the doctor gave him several treatment options ranging from Active Surveilance, Surgery, External beam radiation therapy, seed radiation, and hormone therapy. The doctor asked dad if he wanted some time to think it over before making a treatment choice, but dad decided that day in the office he wanted the surgery, and in the end, I have to respect his choice, but I am really beginning to wonder if surgery was the right thing to do and if he was even truely viable for surgery in the first place.

yankeefan
Posts: 69
Joined: Mar 2013

based on your earlier posts he sounded like a candidate for surgery, only 61 and in good health, gleason score of 6, etc. You might have waited; I assume your urologist discussed that. I'm not sure what the protocol is with a gleason 6. I believe most urologists would not advise waiting if it had been 7 or higher....

As I have posted earlier, the key to a successful surgery is the skill of the surgeon. Hopefully your dad's was highly skilled and had done very very many successful operations. When ever there is surgery, there is always the possibility of nicking something that shouldn't have been nicked. Hopefully, that's not the case. There is also the possibility of infection, though I expect he would be running a temperature if he had one. 

I agree, you dad should have more strength than you report. I just had a radical prostatectomy and I started walking an hour or more per day soon after the catheter came out. I am surprised the surgeon didn't call your dad at home with the results of the path report. They usually get that back in 5-7 days. Also, I'm surprised the catheter hasn't come out by now, unless the surgeon thinks there is a problem. 10 days is the norm, I believe. You may have to decide if you want to stay with this urologist. What is his reputation?, How many successful prostatectomies has he performed?, etc.? While prostate surgery is a major surgery and it does take time to recover....I think it's time to be very asertive with the doc and a good advocate for your dad. He's obviously too weak to do that for himself. Is there a way to get a second oppinion re your dad's situation? So sorry for your dad. Hopefully he will start to get stronger soon. 

 

 

Steelchuggin26
Posts: 16
Joined: Mar 2013

While we were in the office going over his treatment options that day, dad asked the doctor how many of these robotic prostatectomies he had done, and the doctor replied with a straight face and a frank tone of voice "tons and tons of them" and that is what prompted dad to go ahead and choose the surgery. Still though, this whole deal makes me wonder if that doctor was just making the push for surgery so he could make him an easy 10s of thousands of dollars, instead of being more dilliegent and concise in going with a treatment option that would be best suited for my father. I had also mentioned to the surgeon and the anasthesiologist that dad does have slightly high cholesterol (211, with 200 being where cholesterol is considered high), and asked them if they thought this may prove to be an issue that could complicate the operation, and lead to further problems down the road, and both of them said no. So really, I just do not know right now if the decision we made was right. The only thing I do know is that it has been done now, and there is no going back, and unfortunately there may very well be serious consequences from this operation. When we go see the doctor on monday, we are going to ask if he thinks a hospice consult may be neccessary. Granted, I know hospice is for patients whose life expectancy is less than 6 months, but I just believe there is something far more serious in play and I believe whatever it is, it is a direct threat to my father's life. He is also complaining about his right calf being sore, which further increases concerns about a blood clot, but when asked if he feels he needs to go to the doctor about it, he shrugs it off and says whatever is gonna happen is gonna happen, and that they probably wont do anything anyway. I am just absolutely lost right now.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

why in the world would you consider surgery and hospice at the same time?  good grief.  "tons and tons" is how many?  I'm sorry for your situation but this is exactly why our health care costs are through the roof and this is not a good outcome.  

Good luck to both you and your father.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Brando

I think most of the guys reading your posts are sharing your worries. Your dad needs attention and I hope that by tomorrow at his follow-up consultation his doctor will set things right. Laughing

You will also have the opportunity to inquire about all the troubles you believe that your dad is in risk of being. In spite of that, I think that those facts are just part of your worries and “mimicked” by your mind. Your dad is in good shape and the weakness could be the result of a local infection caused by the surgery.
You are “multiplying” the risks that did not occur yet and such may have leaded you to think about hospice consultations. Could that be related to the death of your mother (5 years ago) you mention in your previous thread?

Your dad’s responses to your efforts are not helpful either. I do not know your age or sex category but our fathers like to be in “command”. Stubborn fathers do not like to sense “worriers” around them. They will try to “brush” them away. Though you have been wonderful for caring so much about him.

Please stop thinking about “wrong choices” of the treatment. You shouldn’t feel any responsibility if the surgery does not reach to perfection. You know and the doctor has listed all possibilities your dad had to treat his disease. They all could do good or bad at the same level, and I think that the choice was better than doing nothing.

Cancers of Gleason score 6 with PSA of 4.2 are usually very small in size and cannot be seen by the open eye. The surgeon could not have see it or felt it. An important aspect in the surgery is to known if the surgeon has dissected local lymph nodes. These would be analyzed under the microscope together with the dissected prostate gland and it would diagnose localized metastases, if any.
The pathologist’s report is important and it will reveal what they have found. The doctor will then use this report with any other results to stage your father’s case.
You should request and keep a copy of this report and file it together with all the other papers from the surgery (agreement, etc.) and previous tests results.

Forget the past and look for a positive future. Let’s cross our fingers for the best.

 

I wish your dad recovers fully and that your family gets the peace you deserve.

VGama  Wink

yankeefan
Posts: 69
Joined: Mar 2013

Look to what you can do now to improve the situation. Press the doc on Monday for plan for getting your dad better in the next week. Try to get him moving. If there is a blood glot it needs to be dealt with. Don't walk out of the meeting on Monday without an idea of what's going on and what the doc is going to do about it. Given your dad's history, it seems likely the path report will be good and the cancer was contained within the gland. That should cheer your dad up. Hope things get better soon.

Steelchuggin26
Posts: 16
Joined: Mar 2013

Hi everyone, we went to the doctor this morning for the follow up visit to discuss the pathology results from the surgery and evaluation of the catheter and bladder healing. First off I will mention that the doctor said the Gleason score remainedthe same(6,3+3) but the cancer was found in both lobes of the prostate, but the surgical margins were negative. So I am guessing this made it a stage 2 cancer? Doctor said the cancer was confined within the prostate, despite being in both lobes, and therefore he is fairly certain the cancer has been eradicated. The second part of this post has to do with the catheter.

Doctor had CT scans and an Xray done on his bladder to see if the catheter was ready for removal or not, and unfortunately it is not. He said there was some leakage into the pelvis and is therefore leaving the catheter in for 2 more weeks, and naturally, my father was quite disappointed in this development, he had been hoping to get that thing out today, but alas, it has to stay for at least 2 more weeks, so that is a bit of a downer. The Urologist said dad is probably experiencing some severe spasms of the bladder, and so he wrote him up a prescription for some medicine to try to help with that. He had been given Oxybutynin(sp?) 5mg to take 3x daily as needed last week by the on call physician last monday, but this still had no effect on the leakage. So dad's surgeon changed it to Oxybutynin 10mg ER to take once every morning to try to help with the suspected bladder spasms.

And lastly, I asked the doctor about dad's weakness he has been having, and he said not to worry too much, that it would get better over time, and things like this are to be expected with major surgery such as the one dad just had. Which I guess makes some sense, but the text I have read up on robotic prostatectomies made it sound like it wasnt as major of a surgery. No one person reacts and responds to this surgery the same way that another person with the same surgery does, so it is to be expected for some people to heal quicker and resume normal activity sooner than others. But seeing so many success stories of people recovering quickly from their surgery got me to thinking perhaps something is wrong with dad, but then again, those cases are probably a small sample size, and there are probably more cases of people taking longer to heal and recover,

Final thoughts: It does sound good that the doctor is confident he "got all the cancer", but at the same time, with it being found to be in both lobes instead of one, that still leaves some room for worry. But hey, its better for it to be in both lobes and still inside the prostate than to be in one lobe and invading the surgical margins right? What are your opinions on this?

yankeefan
Posts: 69
Joined: Mar 2013

Ask the surgeon for a copy of the pareport port. It will include more than he reportedly told you, and you want your own copy anyway. Sorry about the catheter. I wonder why leaving it in 2 more weeks will fix the leaking? Hope your dad feels better soon.

Steelchuggin26
Posts: 16
Joined: Mar 2013

He said it needs to stay in for 2 more weeks because it appeared to be leaking somewhat into the pelvic cavity, and said removing it now would just make it worse. I honestly dont know what to think right now, if hes doing ok, or if we really screwed things up. The whole situation is a royal mess right now.

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