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Do I Tell My Dad He Now Has Cancer?
Pirokp
Posted: Tuesday, November 26, 2019 9:16 AM
Joined: 9/15/2019
Posts: 66


Good Morning,

My Dad had an MRI last week, and unfortunately the Dr told me yesterday the news is not good.  My Dads Prostate cancer is back and it has spread to the lymph nodes, thyroid and the bone (upper body).  I don’t know how many spots are on his bone or any details yet. We are seeing a Dr today to biopsy the neck lymph node to confirm it is prostate cancer and not another cancer.  

Do I tell my Dad about the cancer?  He has ALZ and already a few things in stage 6.   Has anyone else been down this road?  I am afraid if would make things worse, maybe cause him fear?

The Dr started telling me all these tests we had to do and my head started spinning.  I said not right now to everything but the lymph biopsy.  I want to get my Dad to my home later this week and deal with it there.   My Dad refused chemo years ago and surgery.  I don’t want to put him through that either.  

48 hours until our 2 day journey north to my home.  If I can get over that obstacle then maybe I can focus on the cancer.  

Happy Holidays!


quickmama
Posted: Tuesday, November 26, 2019 9:31 AM
Joined: 2/24/2017
Posts: 13


If my Dad was stage 6 and cancer I would not tell him and let nature take its course. Stage 7 is =horrible and sad and he will not be getting better why put him through it all with the cancer. just my thoughts and others will give theirs I;m sure
Dahlke
Posted: Tuesday, November 26, 2019 9:53 AM
Joined: 7/6/2014
Posts: 1348


Once you get your Dad to your home and settled in, please consider contacting Hospice.  They were a tremendous help in assisting me to care for my spouse.

Dahlke (Cynthia)


harshedbuzz
Posted: Tuesday, November 26, 2019 10:21 AM
Joined: 3/6/2017
Posts: 1838


TBH, I don't know that I would go through with the neck biopsy given that you already know the prostate cancer has metastasized and you feel he's stage 6.

I would schedule an appointment with a urologic oncologist near your home for when you get there. I would maybe bring his records and discuss hormone therapy as a way to manage symptoms. My dad had prostate cancer that recurred after a not entirely successful round of radiation. ADT kept his prostate in check enough that it didn't cause issues with urination or UTIs which were a concern. We weren't looking to prolong his life, only to avoid complications from the cancer growing. For dad, it was a single injection every 6 months.
JJ401
Posted: Tuesday, November 26, 2019 10:44 AM
Joined: 6/19/2018
Posts: 57


If your dad refused surgery and chemo before, you have your answer from him on how to proceed. The biopsy will confirm the type of cancer and if that makes a difference in the type of palliative care he receives, it would be worth doing.

Would I tell him?  I'd only answer the questions he asks. And I'd not give him the total prognosis. 

If you are bringing him home, set up hospice services as soon as you can. 


Pirokp
Posted: Tuesday, November 26, 2019 11:02 AM
Joined: 9/15/2019
Posts: 66


Several of you have mentioned hospice, and getting it set up after the move.   When I think of hospice I think of close to death.  My Dad still walks, and actively does stuff.  I don’t see any indication of close to death at all.   Is there a reason I should call hospice soon?
dayn2nite2
Posted: Tuesday, November 26, 2019 11:21 AM
Joined: 6/20/2016
Posts: 2023


Don't tell him.  Once moved and any insurance issues are settled, contact hospice.  If your father refused chemo and surgery years ago, then I would also decline any biopsy.  In the context of an Alzheimer's patient with cancer, this is appropriate care.

When someone has dementia, they don't need to be "close to death" to get hospice, especially since he has recurrent cancer.  Have him evaluated and if he qualifies, great.  If not, I wouldn't do a thing about the cancer.


Rescue mom
Posted: Tuesday, November 26, 2019 11:25 AM
Joined: 10/12/2018
Posts: 1147


Hospice no longer means “close to death” especially when dealing with dementia patients.

Years ago many hospices had some kind of “6 months to live” guideline, but that no longer applies for most, especially when dementia patients are involved. You should contact them ASAP when you get home. They will explain it to you better. But they can help dementia patients and families for long long times, and now you have cancer in the mix.  

He can change very fast with these diseases in play, Hospice will come and evaluate at least. Let them tell you they can’t help yet, (if that’s the case); Hospice staff always say the vast majority of their clients could have had help much sooner if they’d asked for it. 

At least call and talk to them. There were residents at my moms facility with dementia who’d had Hospice help for years, and many many here talk about using them for their LOs with dementia, even though a death time is unknown.

 


terei
Posted: Tuesday, November 26, 2019 12:34 PM
Joined: 5/16/2017
Posts: 466


I would not consent to ANY tests on my parent under these circumstances + IMO the doctor is way out of line assuming they should be done.  I am appalled.  Clearly your father would not want treatment + testing is just more stress + discomfort  being placed on him for no reason.  No, I would not tell him of a cancer diagnosis.  I would call hospice + have him evaluated + make the rest of his life as comfortable as possible.
zauberflote
Posted: Tuesday, November 26, 2019 12:48 PM
Joined: 10/24/2018
Posts: 499


Piro, I also advocate for not telling him, living through the coming drive (yowie!) and contacting hospice asap. My mom has been on hospice for over 5 months, and she is really no closer to dying than she was 5 months ago. My MIL was on hospice for over two years.  

I would decline tests for the moment, until you may learn from hospice MD what palliative treatment would be affected by which tests you would subject him to. (Others are right; dad already made known his wishes regarding aggressive treatment. That hormone treatment sounds fascinating, and it may even be that hospice would cover it as being comfort care. If they accepted him for terminal cancer, they would pay for whatever treatment you selected, as I understand. @Jo C is a treasure trove of info on this, I think.

We found that Mom had sudden declines which were permanent both times she's moved in 3+ years. Perhaps this will not be true of  your dad; I pray so. 

I know I'm going to forget that you're driving, so sending best wishes and a prayer for safe calm simple travels. Make SURE you ("all y'all") drivers are well rested. 

chris


LicketyGlitz
Posted: Tuesday, November 26, 2019 10:04 PM
Joined: 2/3/2018
Posts: 541


Holy smokes, Pirokp, I got no advice to give you, just an empathy scream at the universe for 'ya...

"Seriously, Universe? SERIOUSLY?"

There, now you don't have to do it.


Dave Cahail
Posted: Thursday, November 28, 2019 1:23 PM
Joined: 6/24/2018
Posts: 39


I wouldn't tell him. Why put him through treatment that may cause agitation and frustration for him as well as you?

My mother has had some physical issues lately and my siblings and I have purposely decided (with doctor advice) to select what we tell her so to minimize agitation. Even now the procedures she has had this year, she still doesn't understand what they were for and frankly has forgotten even having some of them. 

It really comes down to their ability to understand such things as well as whether it will actually contribute to their quality of life. If it doesn't, all the more reason not to tell them. Just try to do what you can to make them safe, comfortable and cared for. And enjoy the moments of happiness that come along. That is all we can do. 

Take care of yourself and get the support you need to not feel guilty. 


Michael Ellenbogen
Posted: Thursday, November 28, 2019 2:31 PM
Joined: 11/30/2011
Posts: 2668


If it was me I would want to know. It depends on how much he can understand. I think people can understand a lot more than most think. I would want hospice and to be kept very comfortable. I would probably also be happy if I could go that way rather than the dementia. 


Abuela
Posted: Friday, November 29, 2019 5:51 AM
Joined: 6/24/2012
Posts: 403


If he is in Stage 6 don't tell him. He can't participate in his diagnosis.  And yes, call hospice. The cancer is one issue, but remember that dementia is a terminal illness.  The dementia eventually stops the involuntary organs such as lungs, kidneys, etc.  So think of the dementia as his primary disease... which is terminal and ends in a very ugly way.  Hospice will be a tremendous help to you.
zauberflote
Posted: Friday, November 29, 2019 12:12 PM
Joined: 10/24/2018
Posts: 499


Piro, just want to say I hope your drive was as uneventful as these trips can be, that you are all still standing, and you'll get a minute to yourself soon!
Jo C.
Posted: Friday, November 29, 2019 1:09 PM
Joined: 12/9/2011
Posts: 10221


I am so sorry this is happening; it must be very difficult for you.  Your father is blessed  to have such a loving and compassionate daughter.

NOTE:  As mentoned by harshedbuzz, ADT = "Androgen Suppression Therapy."

https://www.cancer.org/cancer/prostate-cancer/treating/hormone-therapy.html

Since your father has already refused chemo, etc. for his cancer when he was able to process and make such decisions, you already know what his wishes are.   You can discuss ADT with his specialist as to whether that would help keep symptoms at bay longer and provide a higher level of comfort for as long as possible.  At this point, if he is unable to process such information regarding cancer recurrence and metastasis, then there would be no benefit to discuss this with him.  You know your father best; trust your instincts.

Hospice can indeed be very helpful.   If you feel that Hospice is not appropriate at this point, there is also the option of having Palliative Care.  It is sort of like, "pre-hospice."  They will have a licensed nurse to make visits and be able to plug in assistance as needs arise and also monitor symptoms/pain.  In Palliative Care, unlike Hospice, one can continue to have life saving measures and use the acute hospital and ER if such needs arise.  Another difference between the two is that Hospice pays for needed equipment, etc., and Palliative Care does not.  When the need arises, one can transfer from Pallative to Hospice. 

Sending warm thoughts your way; let us know how you are doing, we truly do care.

J.


bandit47
Posted: Saturday, November 30, 2019 1:07 PM
Joined: 7/15/2019
Posts: 5


Hospice does not mean close to death. It just means having a terminal diagnosis. Hospice has wonderful resources both for your dad's cancer and his Alzheimers. They will also provide resources and comfort for you. Please take advantage of this great resource as soon as possible.
Mobile AL
Posted: Saturday, November 30, 2019 11:18 PM
Joined: 7/21/2018
Posts: 30


My mother was about 82 when she was diagnosed with lymphoma. After some radiation treatments and minor surgery, her PET scan showed no hot spots of cancer for 5 years. Then she had to decide, at 87 what to do. Her cancer doctor said she could not have chemo treatments at her age and with her other health problems (she had also been diagnosed with dementia and COPD). She started a treatment where they only treated the symptoms of the cancer; the cancer itself could not be treated. She had a PIC line put in and went every couple of weeks for an infusion of meds that helped with the pain in her back, pumped up her white blood cells, etc. After 3 months she didn't want to continue that or have any further treatment. The next PET scan revealed the lymphoma had spread throughout her body and into her lymph nodes.

We refrained from telling her the news for several reasons. Her other health problems, including her dementia, had gotten worse and she was fighting a constant round of UTI's along with panic/anxiety attacks. Her cancer doctor suggested we have home hospice to come in to keep track of her vitals and her medicines. Mama felt very comfortable with the nurse and he kept on top of her needs, even suggesting things I could cook for her to help with her diet. They also sent out a physical therapist who would help her do very mild exercises to help with her balance and a chaplain to give spiritual support. This hospice group also had nurses who did home hospice for dementia patients and, when the need arises, I will be calling them in to help with Daddy.

No one can say just how you should approach your father's treatments because each case is as individual as each person, but consider that an MRI or CT scan only covers the parts of the body the scan is aimed at. A PET scan will scan the entire body to show what areas may be 'hot' or 'red' which indicates where the cancer is and how far it has gone. Some insurance companies will not cover the cost of a PET scan but it is more often approved if requested from a cancer center doctor. Then the doctor can stage your father and you'll be able to make a decision based on how far the cancer has spread and the recommendation from the cancer doctor.

I'm sorry you're going through all of this and I empathize with your pain and confusion from all the angles you'll have to address to make determinations on your father's comfort and his quality of life. I've been through it and it's tough as hell but you'll make it; just take it a day or minute at a time. I tried to keep in mind what my mother would want at each step and I made it my goal to keep her comfortable and keep her spirits up and make her laugh as often as I could. I found it was like looking into a mirror. The higher her spirits and the more she laughed, the higher my spirits and the more I laughed. Sometimes that was all I could do for her.


 
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