My father was told he is terminal

Miscellaneous and Personal Stuff I Must Share
1

For quite a few years my father has had incontinence problems. The cause was an inverted penis that resulted from attempts to solve a prostate problem. He was also diagnosed with a hernia that caused fluid buildup in his scrotum. He had seen a few doctors who told him if he could bear with the hernia not to have surgery because of the risks.

In late 2015 my father moved to Florida after my mother passed from Ovarian Cancer a month before my wedding. My father was in and out of hospitals due to constant urinary tract infections that had blood and “sludge” as symptoms.

On Thursday last week he went back into the hospital because he was week. They said he had either a cold or the flu. While there he decided to have the hernia surgery because it would resolve the incontinence or so they said.

After the surgery they found masses in his bladder and his prostate. We knew for years that he had an enlarged prostate but now he is diagnosed with inoperable Bladder Cancer. They gave him this news yesterday but I didn’t find out until I called him today.

All the results won’t be in until Monday when we will know the stage of Bladder Cancer. I know at 82 he has lived a long life and right now his concern should be ongoing quality of life. Talking to him today he sounds like someone that has given up.

I am in New Jersey and he is in Florida. Family Medical Leave is an option for me to use to go to see him. My wife and I discussed bringing him back to NJ for treatment or hospice if there is no options for treatment but that is up to him.

He is not someone who shows emotions well and that’s an unfortunate trait I share with him.

2

So sorry to hear this Manny. So soon after you lost your mom, too :frowning: I’m glad you have a loving partner to help you through this. She will be your rock.

I find that confiding in strangers on the internet is way easier than talking about my feelings with people I know IRL. Glad you are opening up here, I think it will help.

Peace to you in this trying time.

3

I am sorry to hear this. Go ahead and take advantage of your leave to go see him. Nothing like boots on the ground to really figure out what’s happening and what should be done. It’s hard to assess things over the phone.

He may want to stay in Florida, if that’s home now, or he may want to return with you, and spend his time with family. Either way, I hope it will be comfort to have you there while he works this through.

4

I am sorry to hear about this.

If you find it easier to talk to us here on the internet as opposed to face-to-face people we’ll be here for you.

5

I appreciate the support here. I was researching online if Bladder Cancer can be genetic because there now seems to be a trend for Cancer in my family. In 2015 my mother passed away from Ovarian Cancer. As a male I know I don’t have to fear that. In my research I found out that one of the risk factors according to healthline.com is Chronic bladder or urinary tract infections may increase risk, including those caused by prolonged use of bladder catheters. My father did have reoccurring UTI’s and I can’t wonder now why they didn’t do any tests to find this earlier. I’m assuming they could have found it when it was at a stage that surgery could treat. Hopefully I will know more tomorrow when they doctors are available to talk to.

My aunt who lives near him said he seems defeated and was saying this is the end. I know he misses my mother and wants to be with her. Yet I want him to be here for many more years as long as he has a good quality of life. I understand with his incontinence problem he doesn’t have a good quality of life but the hernia repair was supposed to resolve this.

I tried to call him tonight but he was sleeping and I didn’t want to wake him up. My aunt says I should be down there with him but I know he hates people just sitting there. I know I can use FMLA time to to care for an employee’s parent who has a serious health condition and that FMLA considers any period of incapacity or treatment connected with inpatient care (i.e., an overnight stay) in a hospital, hospice, or residential medical care facility; or but I don’t know how to navigate that at work.

6

The first step to find out how to work the FMLA bit at work is to reach out to your manager and HR. Talk to them and let them know what’s happening.

You may need to/want to use personal time off to spend a short visit to find out what’s happening and FMLA to spend a longer time period getting him settled, but you can work that out later.

I know you don’t want to just be sitting there once you arrive, but I am willing to bet there’s more than enough for you to do during your visit as you figure out what’s going on. Your dad may appreciate your company more than you know as well. Hospitals can be very lonely places.

We’re here and we’re interested. Best wishes.

7

Unfortunately, this is a subject I am very familiar with.
You should go to Florida now. You may very well not have another chance.
He is ill and will not be able to navigate what is happening. He needs help now.
You will not regret going, but you will second guess and berate yourself for not going.

Of course he sounds like he’s given up. He’s sick and just been told he has inoperable cancer. Go help him.

8

Knowing what a coworker went through my manager doesn’t know anything about the FMLA process and getting in touch with the HR contact we have is difficult. Having said that I will send an email to the HR contact tomorrow once I am at work.

steatopygia The earliest I can fly down is Wed and I have to look at flight options. My wife will loan me the money I need for the ticket (we keep separate finances because of debt I brought into the marriage) I asked him on Saturday if he wanted me to come down and he said no I should wait until the doctors have more information.

9

Wednesday counts as now.
My point was, don’t not go, and don’t put it off.
I’m an ER nurse and I frequently have to call family members with bad news of varying degrees. One of the responses I sometimes get is “Should I come now?”. I always tell people “Yes. I can’t tell you if or when your family member is going to die, but they are alive right now and sick enough to be in the hospital”. I’m not talking about broken bones and things like that, I’m talking about sick elderly.

I promise you that you will not regret it.

Hospitals generally do a very poor job of informing patients what is going on and what is happening next. EVERYBODY needs an advocate. Your father is 82 YO and ill. He is probably not comprehending half of what is being thrown at him. You can be his advocate.

Good Luck.

10

Earlier in the day I asked the Nurse who was in change of my father if I should be coming down right away and she advised to wait for the doctor’s to talk to us.

11

Much of that will likely be tomorrow. Things will change day to day.
Go to sleep. Take care of the planning details tomorrow.
Good luck.
Edited to add.
You are going there for your father. Test results and planning for what next will consume your conversation but, being with your father when he needs you is why you are going.

12

Maybe, maybe not. My husband had recurrent UTI’s and used catheters to urinate. He had a very through bladder exam last September with no sign of any problem other than the stricture that prompted the “procedure”. By mid-November he had Stage IV metastatic bladder cancer and by the beginning of this month he was gone. Bladder cancer can be very aggressive and fast-moving. I’m hoping that is not the case for your father.

I understand the urge to ask “why?” and wish that it had be caught earlier, but try to keep most of your energy focused on what to do now.

You really need to talk to HR where you work about FMLA and/or all other options for leave.

13

This is such good advice. I agree wholeheartedly with the part about everyone needing an advocate while in the hospital, too.

Good luck to both of you.

14

Update

I am waiting for my flight from Philadelphia to Tampa. We keep getting conflicting info from the hospital staff.

On Saturday when we spoke to a nurse we were told his chart said he was terminal. After talking to other nurses yesterday and Sunday we learned that they did not do a bone scan or PET scan yet to see if the cancer has spread from the bladder. They said that chemotherapy is an option for my father.

However because someone used the word terminal with him he has given up. I’m hoping that my presence there will cause him to listen to the information we have and fight this. They said it’s likely they won’t do further tests until after he is released.

My wife and I don’t comprehend how they can say he is terminal when they do not know the stage of the bladder cancer.

I wanted to take more time off from work than I am but the hospital refuses to fill out FMLA paperwork stating his primary care doctor has to do it. I’ll be in Florida until Friday afternoon.

What questions should I ask the doctors there when I see them today?

15

That is not entirely unusual. It’s best if you can determine who is leading up the treatment team (and if there isn’t one person try to get someone into that position) and get your information from that doctor. My husband’s oncologist had a “nurse navigator” that also acted as a source of solid information and go-between between the family and the doctor (because doctors can be hard to get ahold of).

You do not need to do a bone scan or PET scan to find out that the cancer has spread. CT scans, ultrasound, and x-rays can also give this sort of information. Here is a link to some intro information on what cancer staging means.

If the bladder cancer has spread to the pelvic lymph nodes the odds of surviving 5 years, with treatment, is 34%. If it has spread further than that, the odd of surviving 5 years is around 5%. If either of those is the case then yes, your father’s case might be described as “terminal”. Bladder cancer can be a real bastard. There are other factors like how aggressive the cancer is in his case.

However, I know from seeing some of the medical imaging that ultrasound can show enlarged lymph nodes even a layperson can see. If find CT scans to have so much going on that it’s harder to pick something like that out, but if it’s pointed out yep, you can see there’s something amiss if there’s a tumor in the bladder. When it spread to my husband’s bones again, although I am in no way trained to find these sorts of things, I, too, could see defects in the affected bones in an x-ray.

So… you don’t need a PET scan to find the cancer.

The standard chemotherapy for bladder cancer is pretty old school, but these days they can give you medication before the actual chemo to reduce the side effects like nausea, itching, and so forth. Typically, they’d weigh my husband, draw a blood sample for analysis, and give the medication for side effects. There’s be about an hour wait for those to take effect, then he’d get the actual chemo. Yes, chemo sucks, my husband said that he felt poisoned for the next two days or so, but it really did help with the cancer symptoms. It enabled him to come home for awhile instead of being stuck in the hospital. Then it stopped being effective so it was stopped. Cancer can develop resistance to chemo after which there is no benefit to continuing.

If your father does come home then anyone caring for him after he gets a chemo treatment needs to take precautions to avoid exposure to the chemicals coming out of him. If that’s the case, I have a couple boxes of chemo-resistant gloves here, I’d be happy to send you a box although all I have is size “medium”. I have a few other items here that might be of use, you can PM me if you want to know more.

Find out who said that. Unless it was a doctor they shouldn’t have done that (and maybe not even a doctor, because you have to be very careful about using language like that).

Consider, although I know you don’t want to, that that might be the actual truth. I didn’t want to hear that my husband was terminal but I’m very glad the onocologist (and others) were that honest with us. It made a difference in how we spent his remaining time, and also allowed us to, as they say, put his affairs in order which made things easier for me after he was gone.

If it has spread beyond the bladder into the lymph nodes it’s at least stage 3. I already quoted the 5 year survival odds for that, which are pretty dismal and only get worse for stage 4. As I noted, it’s possible for something like an ultrasound to give you that basic level of information. Further testing serves to refine the exact staging and may affect the treatment approach, which can be valuable information, but the doctors may in fact already know the rough stage of the cancer.

Who is the lead doctor for all this? (If there isn’t one, get one - treatment by committee can quickly turn into a mess)

Who is the person to go to for information? (In return, the doctor(s) would appreciate having someone designated as your father’s health representative to act on his behalf should he be unable to do so himself. This isn’t necessarily just at the end - due to treatment side effects and the effects of cancer my husband experienced several episodes of temporary delirium or incapacity during which I had to make decisions on his behalf and speak for him. He would then get better and resume speaking for himself until the next time).

What is the most likely outcome for

  • his cancer
  • the current treatment

Are you treating him hopes of

  • remission?
  • increasing his remaining life span?
  • keeping him comfortable?

What are his options at this point?

What is the treatment plan?

What is the next step if the current treatment stops working or needs to be discontinued for whatever reason?

In addition to the hoped-for goal of treatment, what is the current treatment going to do to him in terms of side effects, pain, and other possible complications and how will those things be addressed?

There’s probably more, but that’s just off the top of my head.

16

Are there other treatment options? Why has the current treatment plan been selected versus any others?

Following the selected regimen, what does that look like for him (best and worst case)? Improvement immediately, no improvement for 3 rounds is normal, what? (If improvement is the goal, of course.)

It might be helpful to use your phone or another device to record everything, so you can go back later and makes sure you capture/have heard everything. It can be hard to do that in the moment.

17

Excellent post by Broomstick.

The best time to find out these answers will be at a “care conference” or something similar sounding.

In addition, your dad is likely going to want to go home as soon as possible. Make sure he is ready first. Can he walk?, urinate or cath etc?

Sorry if this info is too simple or redundant.

18

**MannyL **, I am sorry you are going through this. Check your PM’s.

19

I’m sorry to read this about your father. It can be a stressful time for all. Remember to take care of yourself during this time too. I wish you peace for you and your family.

20

Thanks for the postings. I am sitting at the airport waiting to go home.

So my father has been released from the hospital to go to a rehab center. Once his kidney function improves he will start chemotherapy. From what I understand talking to the oncologist he has a rather rare type of cancer. He said it was small cell lng.

I know they did a chest X-ray and that is clear. He had rescinded his DNR and is in better spirits. We tried to get him released to a rehab center in NJ so he can recover in a state where he has friends and not only I could see him more often but his sister could see him but he is not cleared for commercial air transport and an ambulette would be too expensive. The next two goals are

  1. Get him strong enough to be cleared for flight so he can fly to NJ
  2. Get him to a point where he does not need a catheter because he hates the thing.

My father is the type of person who doesn’t like people just sitting holding his had so he told me to wait 2-3 weeks before coming back down so I am going to respect that. Of course if his condition gets worse i will be on the next flight down.

His Primary doctor filled out the FMLA forms so now we begin the rigmarole of submitting them to HR. HR then saying there are errors. Having the errors fixed and re-submitting only to find more errors. This is what my a few of my coworkers have gone through.