Seeking information on what to expect re: cancer diagnosis

[Haiku]

My father was recently diagnosed with incurable prostate cancer.

 

I am devastated, of course, but there's nothing I can do to change what's happening.

 

I am the only child who lives close enough to help handle the day-to-day aspects, so I will be in the thick of it.

 

What I would like to know is what I can expect to happen over the next 12-24 months (his projected length of survival) in terms of physical manifestations and, really, what will happen to my dad before he dies. Please feel free to speak plainly. I would rather know that not know.

 

 

[mysticmomma]

I don't know, but I couldn't read and not post. I'm so sorry.

[itsheresomewhere]

I am close to someone who has had it for many years. He gets estrogen shots and lives a full life. His doctors tell him that the prostate cancer most likely will not be what he passes from. I hope for you father that he may have the same outcome. Has he check out any alternative treatments yet?

[Entropymama]

I was living across country when my dad went through his cancer journey, so I wasn't there day to day, but I can give you generalities. He'll lose a lot of weight and age very quickly. My dad went from a healthy 60 year old to having the appearance of a frail 85 year old in a year. Many of his functions he kept until very close to the end, so there were no diapers to change, etc. He was just very tired and in pain all the time. The mental trauma is difficult - facing your own mortality. He was often quick tempered and then grief stricken for speaking unkindly. He required a great deal of encouragement but was also irritated by encouragement because we all knew he was dying. 

 

One of the great things my dad did was to start a binder to keep all his health related stuff in. There were sections for all his test results, medications, insurance paperwork, bills paid, bills to be paid, important documents (DNR, living will). Having everything together and in order was a life saver, and once it was set up didn't take much work to keep organized. I highly recommend it. 

 

Don't be afraid to have hard conversations. What do you want for your funeral? Where do you want to be buried? Do you want to update your will? Are there any unresolved issues between us? What is your best memory of me? I hate to be crass, but it's now or never. Don't waste it. Also, you can't say anything (apart from being cold or rude, I guess) that will make him more afraid or upset that he is already. He likely wants to talk about things but doesn't want to upset others, IME.

 

My best advice is to talk to hospice now. Their nurses are the best people on the planet and can tell you very frankly and kindly what to expect. They prepared us and helped us more than any other health professional. They are amazing. 

 

[fairfarmhand]

We just went through this with my fil. I'll be Pming you later today.

 

Has the cancer metastasized?

[Haiku]

Has the cancer metastasized?

 

Yes, significantly.

[Pink and Green Mom]

No advice or experience, just wanted to say I'm sorry.

[3 ladybugs]

All cancers are sort of different animals. A tiger and a elephant are both animals, but they require different things and behave in different ways. This is my way of saying that you should look for a message board for prostate cancers and talk to them. What I went though with my cancer diagnosis and how my day to day was would be completely different then someone with that type of cancer. I found that the lymphoma board (which is the type of cancer I had) kept me sane and helped me ask the right questions at my doctor's appointments. 

 

I am sorry you are dealing with this. ((hugs)) I hope he baffles doctors by how he defies his life expectancy. :)

[stephanier.1765]

I have no experience but it tears me up to read this. I am so sorry. May this time with your father have many precious moments.  :grouphug:

[prairiewindmomma]

Cancer sucks.  ((Tara)).  All cancer is different, but the very end looks much the same for many.  The middle part is where things vary a bit---and a lot of that comes down to where the mets are.  Cancer with brain mets is very different than cancer with spine mets or lung mets and so on.

 

My best advice is:

1. Get those hard conversations out now---funeral plans, finances, end of life plans.  Things often get wonky in the middle as his cognitive thinkings skills may change and people grieve differently and can't all get on board with end of life planning. Having "the plan" early on helps everything carry on smoothly.

2. Prepare for the possibility that someone in the family is going to handle their grief badly and do something outrageous.  See it for what it is, but be prepared to maintain appropriate boundaries.

3. Photos--do them now.  Appearances change as cancer progresses.  Also, whatever big fun travel things you may want to do--also do now.

4. Is your mom still around and involved?  She will likely say things are fine when she could use some practical help---cleaning, making insurance phone calls, running errands---as things start to get bad.

5. Involve hospice early on.  They really do specialize in end of life care, and can offer a lot in terms of physical equipment, counseling, medical care, etc. Hospice also helps keep medical bills under control.  We were getting killed by pharmacy co-pays that all stopped once all the meds started coming through hospice. They also arranged all of the oxygen tanks, hospital bed, etc. way more efficiently than going through our insurance.

[Carol in Cal.]

I'm very, very sorry.

 

If I were in this circumstance, I would look into pain management long before you desperately need it.  From what I have heard, prostate cancer tends to spread to the skelaton, cancer in your bones can be quite painful. There are medical practices that specialize in managing chronic pain, and those can be very valuable.

[Amber in SJ]

I went through this earlier in the year with my mom.  On January 8th she was diagnosed and given 12-18 months, but on February 14th she passed.  I was there in the thick of it, as you say.  I lived in my childhood home and cared for my mom.

 

Make sure you are on the permission to give information list at every doctor.   

 

One of the most important things we did was to hang a white board in her room.  This is where we kept track of medications, when they were given, when was the next dose due, when she ate last etc.  The number of medications will grow at an astounding rate and while you are processing the news and the grief there is really no way to  keep track.  If & when hospice gets involved they can look at the white board and see at a glance what is going on that day.  It was very helpful the one & only night I slept through the 2am medication; woke up heart pounding at 3:30am, both mom & dad were asleep, so I could take my little flashlight, look at the board & see that Dad had given her the meds at 2am, watched her fall asleep and then gone back to sleep himself.

 

As for what to expect physically?  Ask.  Ask the doctors.  Ask for the worst case scenario.  Ask in private if you can't talk about it in front of your dad.  You will feel ghoulish, but you will need to know.

 

Get a binder, or an expandable file folder in a bright color.  You will soon be drowning in paperwork.  You will need a section for insurance, each doctor (you will have a 'team') prescriptions, daily info, appointments/ calendar, etc.  Take a business card from every office you visit.  Keep a log of every phone call you make to doctors' offices.  Even if it is a little note with the date & time that says, "Called Dr. P talked to Mary.  Results @ 2pm." so when you call @ 2pm for the results you can say, "Hi, I spoke with Mary @ Dr. P's office @9am this morning and she said our results would be ready this afternoon."  Believe it or not it makes a difference.

 

Your new phrase is "What is the prep for that?"  Doctors will schedule tests & all kinds of other business and you will make your plans based on these appointments without knowing what is really involved.  You might say yes to a 9am MRI with contrast in an office an hour away, but what the doctor doesn't mention is you have to pick up the contrast drink either the day before and give it very early that morning or the appointment needs so many hours of fasting, which changes the timeline for you.

 

You must become a patient advocate.  I started almost every phone call with, "Hi, my mom is a diabetic & takes XYZ for high blood pressure..." even though you'd think those things would be on her chart for everyone to see, I can't tell you how many times we would get to an appointment & they had no idea that she was taking XYZ and needed to be off of it for 3 days before the test.  Grrrrr.

 

Do not forget to care for yourself.  If you can't remember what or when you ate last, it is OK to get some help.  

 

You will fall into a rhythm of appointments and busyness and care.  Don't forget that you still need to look for the beauty going on around you.  One night when we were getting home in the full dark and my mind was already on what was happening the next day, my dad stopped pushing my mom's wheelchair and said, "look up,"  and there was the most gorgeous display of visible stars.  I live in a big city, and rarely get to see the stars.  I would have missed it.  

 

Get a throw blanket.  Something soft & fleecy.  Maybe in his favorite color, or with a favorite sports team.  My mom always seemed to be cold.  Sometimes she would have to sit there through an hours long appointment and it was so nice to be able to tuck a blanket around her.  It also gave the health care providers something to talk to mom about that was not Cancer related.  I know that sounds weird but at every appointment someone would say, "What a beautiful blanket,"  or "What a nice color,"  or something; just a little chit chat.  Make it washable.  Things happen. 

 

Pack a bag that lives in your car to go to every appointment.  Wipes, plastic bags, change of clothes for your dad(sweats), water bottles, snack, change/ cash for hospital vending machines or cafeteria, whatever OTC medication you take for a headache, lip balm and an extra charger for your phone.  Kind of like a diaper bag.

 

Be ready to talk about funeral arrangements, music, pictures, & memories.  Be selfish with your time & energy.  By that I mean do not feel like you need to spend time comforting friends of friends or people who only knew your parent parenthetically but somehow want to share in the grief that is going on.  It sounds weird, but there were people like that.  

 

Be prepared for family to be weird.  It happens.  Don't dwell on it.  Everyone is processing differently.  Things get said.

 

I am so sorry for this journey you are about to start.  Cancer sucks all around.  

 

:grouphug:

 

Amber in SJ

[goldberry]

I went through this earlier in the year with my mom.  On January 8th she was diagnosed and given 12-18 months, but on February 14th she passed. 

 

I have known a couple of cases of prostate cancer specifically where things went much faster than predicted.

 

:grouphug:

[Haiku]

Thank you, everyone. This has been enormously helpful. Please keep the posts coming. Although I know that I cannot predict and control what will happen and will try very hard not to do so, it is enormously comforting to read the tips that others who have been there can give. I can implement these ideas to make the unpredictable and uncontrollable that much easier to handle.

 

The first thing I need to do is deal with my intestinal issues. From stress, I am finding that every time I eat I have sharp stomach pains and diarrhea (sorry for the TMI). Any suggestions for how to get this under control?

[prairiewindmomma]

intestinal issues:  probiotics, BRAT diet while you heal, loperamide (one time to get the diarrhea under control), and then read up on irritable bowel syndrome issues

[Ottakee]

Amber has a great list.

 

Also as doctors suggestore tests, meds, etc question the need for them. Will the results of the test change the treatment at all? If not, can you skip the extra stuff.....if the med won't do much, can you skip that? Things like cholesterol meds....likely wontatter if he is terminal and just one less med if not needed.

 

Ask his wishes as to end of life. Often there areany things.you can do that really won't change the outcome or his comfort level but are very stressful....ventilator, feeding tube, etc. He may or may not want those things. Focus on pain management.

[Anne]

I'm so sorry!

 

Anne

[Another Lynn]

:grouphug:  :grouphug:  :grouphug:

[umsami]

I'm sorry. :grouphug:

 

Re: the intestinal issues. I've had IBS-D for 20+ years.  I use non-Rx Immodium.  Usually I buy it at Sam's or Costco because I use so much.  It really works for me.

 

Re; your Dad, some great advice up thread.

 

What is the plan.... are they going to try chemo, hormones, anything to try and extend life?  Does your Dad just want hospice/comfort?

 

Definitely try and keep in front of the pain as best you can.  See how soon they will refer you to hospice or at least a consult.

 

Expect to spend a lot of your time waiting.  Does your Dad like to read or listen to audio books? A Kindle or something similar can be really useful.   Keep snacks or a cooler with you. 

 

Talk with the oncologist office about a DNR.  Here in Florida, they must be on yellow paper and must be given by a physician, although I'm sure each state is different.

 

Finances....does your Dad have somebody as POD on his bank accounts?  Is any estate management necessary now to make things easier later?

 

 

Edited June 20, 2016 by umsami

[mamiof5]

I'm so sorry!!!! Will keep your dad and all of you in our prayers!

[Entropymama]

Lots of good advice here. One more thing - there's something going around the internet that looks like a bullseye with the dying person in the middle, the next ring is the wife/husband/whatever, then the children, then the siblings and moving out from there. (If anyone has a link or pic that would be great). Decide who is in the middle and pay attention to it. Good goes toward the middle, bad goes out; in other words you can only complain to people in rings further out than yours. Then find someone in an outer circle and ask if you can call them once in a while and let it all out.

 

Also, people closer to the middle get to make the decisions. For example, my dad and his wife did not want any kind of memorial service. Nothing. I was sad and his sisters were very upset, but you know what? It's her husband and the argument isn't worth it. It doesn't matter. Oh, how it doesn't matter. Let it go to preserve the relationship because those living people are going to be with you for a long time when the dying person has gone.  

[East Coast Sue]

First, hugs for you. It's so hard to walk this path.

 

I'm going through this with my mom- lung cancer, stage IV. I've found that the book, Being Mortal is full of very useful information and questions to ask about end of life issues.

[Guest]

You have my sympathy.  My dad died one year ago this day (not this date)—15 minutes after Father’s Day ended.  I’ll always remember it that way.  He had beaten prostate cancer years earlier, but it came back, and went into his spine and then other places.  The doctors told him 18-24 months, and they were just about spot on.  He lived 25 months, and I think that was mostly because he hung on HARD for a special event.  After that event was over, he declined precipitously, and was gone in 24 days.  May he rest in peace.  And I am sorry for what you and your family face now.  

 

A lot of what has been written upthread matches our experience…my sister and mom doing most of the caretaking until the last 24 days, and me doing the end-of-life decisions and actions.  My sister was a gem with him…but she had to face the anger/remorse cycle described above, and the day-to-day care issues.  Note:  my dad also had diabetes, so I can’t really separate out which caused what, but his death certificate calls cancer the cause of death. 

 

I thought I might note a few things that you might want to think about. 

 

We got my dad a LaZBoy recliner that had a power seat lift; this increased his mobility quite a bit, as he could get up more easily so he walked more than he would have.  It also reclined so he could nap more restfully—the last 6 months, he napped a LOT.  Because of the location of his cancer, the last few months, he slept in that recliner, or in another (not power operated) one in my parents’ bedroom.  That power-lift made a big difference…and now my mom is using it and getting that benefit. 

 

Call hospice now.  They probably won’t take him until he is down to six months or less, but they *might* and there are some good benefits to being involved with hospice.  One thing, they help you talk about tough issues that make it easier to deal with things in the long run.  I don’t know how hospice works in your state but you should find out.  I knew all about hospice in my state but it is very different in my dad’s state, and that caused some confusion.  You might have your choice of multiple hospice organizations, and you want to interview them and find a good fit.  We had bad luck with the first one—they were based 50 miles away and had no clue about my dad’s needs or situation.  We changed in the last 2 weeks of his life and it was a world of difference.  But it would have been better to have them all along.

If your dad has a DNR, post it on the refrigerator in his house.  That is where the EMTs will look, if you have to call them, and they won’t wait for you to dig through your files to find it.  One look at the fridge, and that’s all you get. 

 

Talk to your mom AND your dad and get complete medical histories.  I had bad info from my dad and I was the one who checked him in to the hospital.  I don’t know that it would have changed treatment, but I wonder and I wish I didn’t have to. 

 

Get your mom AND your dad to write out their medical directives.  When you are in the end-of-life, you have to make decisions that are emotionally very difficult.  The whole world is upside down; they aren’t trying to cure him—they are trying to keep him comfortable…and that is just ODD, after a lifetime of going toward cure.  The fact that my dad had a written directive gave me so much support and help; he had my back when I had to say the words he could no longer say. 

 

Do your research now re: assisted living places and skilled nursing places.  My dad could have gone from the hospital to assisted living *except* they didn’t take people with diabetes.  We were not told this until 6:00 the night before his intended release to long-term-care.  We raised HECK with the hospital over this and they gave us another day.  Well, that was fine, but my goodness, it is not fun to go shopping for a long-term care facility at 8:00 at night.  I interviewed two of them the following day, and we really did land on our feet…it was a very good place and he spent his last 19 days well cared for, in  sunny room, close to mom’s house.  But there were three other places that were close to the house and they were AWFUL.  So do you shopping early.  My dad started falling a lot and there was no way he could live at home anymore.  My mom and sister and I were not capable of giving the care he needed.  And when you interview the places, talk to the highest up person you can, and visit the place three times…once later in the evening.  I visited two places after 8:00 and wandered the halls and didn’t see a single staff person in a 15 minute time span.  One place smelled so bad my sister and I just turned around and walked out.  And look for a director who has a heart.  One place was *harsh* about payment: “Vee musssst hafff your money vell before the arrival of your fazzzer!†  Well, buster,  it takes a couple of days to scrape together $10,000 up front.  The director of the place we ended up, he said, “Why don’t you just post-date the check?  Give yourself a couple of days to get the cash together.† (And it was $8,000!!!)  When I visited that place (no appointment, I just showed up) I saw that director wheeling a patient to the dining room.  THAT was cool.  He was really chatting her up.  Anyway, do your shopping early.  Note:  you need ‘t tell your dad or mom you are doing this.  You just need to get some information ahead of time so you aren’t chasing your tail at a terribly emotional time.   You might not need the information…but it won’t kill you to have it, and if you use coming months to educate yourself, it won’t be a mad rush.

 

Finally, all of the decisions that had to be made at the end were waaaaay too much for my mom to handle.  My mom and sister did the long-term day-to-day care, but at the end, I was the decision-making executive.  I found out the information, made preliminary decisions, put the info into shape and presented it to my mom in a way that she *could* decide the things that were really her decisions to make, not mine.  But she could never, ever have done the chasing around and bird-dogging and sifting and hard questioning that I did.  She’s not stupid—far from it.  She’s just OLD (92 at the time)  It was too much, too confusing and at a hard time, when she was facing the loss of her husband of 62 years.  That was a gift I gave her, but the role-reversal was not easy on either one of us, even though we were both very kind to each other.

 

Sorry this got so long.  I wrote it out once, and the cybergator ate it, so I did it again in my word processor and I am always more wordy there.  

((((YOU)))) 

[Lizzie in Ma]

:grouphug: :grouphug:

[TravelingChris]

I am so sorry. :grouphug:  :grouphug:  :grouphug:

[Caviar]

So sorry to hear this.  My father passed away last year at the age of 85.  He had prostate cancer for at least five years, likely longer, but he never wanted to go to a doctor for anything.  He did have surgery several times to have the cancer removed, and then went for the 3 month checkups, then 6 months, then was able to wait 1 year, but then....the cancer metastasized and went into his bladder (and he had those cancers removed several times too) and eventual his bones.  He did not have chemo. or radiation, he had decided that he had lived a good long life.  It was really the bone cancer that took him - very painful.  He was in hospice the last three weeks of his life.  The worst part for him was loosing the ability to walk, and having to be in a wheelchair, and then at the end, bound to bed.  What was difficult for me was watching him get so thin.  It wasn't the cancer process that shook me, it was the dying process.

[hsbeth]

I lost my stepdad to cancer three weeks ago. It was a devastating process, especially the last two weeks. He wanted to pass at home so we had hospice. They came in for an hour or so each day, but the remainder of the care was up to us siblings (my mom was not physically able). I only skimmed the above, but dramatic aging and weight loss, fluctuating emotional states, and then dealing with the physical realities of limited mobility and eventually being bed bound were all hard. Please feel free to pm with any questions or if you need to chat. Sending positive thoughts your way.