Daddy refuses treatment...advice / support PLEASE

My Daddy was recently (4/14/14) diagnosed with Prostate Cancer.  He has already told me he will not seek treatment, because he wants to enjoy the time he has left.  I believe this viewpoint comes from watching his wife (my Momma) fight ovarian cancer with surgery, and chemotherapy only to lose the one year long painful and miserable battle.  She was unable to do any of the things she enjoyed (fishing, camping, flower gardening)

 

He is 74 years old.  He is on medicine for high blood pressure, and high cholesterol. He was diagnosed about 3 years ago with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) that he did three treatments of Intravenous Immunoglobulin (IVIg) for, but quit due to believing it was not helping. He also didn't realize when he started the treatment that he would be doing these treatments once a month (4 days) for the rest of his life.  Once he found that out, he refused to do anymore because the treatment made him very sick the week of the treatment and the week after.  He said life was too short to be sick half of the time. 

He used to be a very active man. He would be up between 4 and 5 a.m. He walked 3-5 miles every morning, before doing other things he enjoyed (shopping, working in his shop, fishing, hunting and yardwork).  He hasn't been able to do these things for 3-6 months now. He sleeps late (8-9 a.m.), and then spends most of his days in a recliner.  It isn't that he doesn't want to do things...he is just too weak to do them now. He doesn't have an appetite, and he vomits often.  I have been mixing protein smoothies with fruit for him (he will eat them). He has lost weight.

He went to his General Practioner due to being unable to urinate, or defecate.  He was told to quit eating/drinking anything with caffeine, and to get a prostate test done.  He refused the prostate exam (because he was constipated--his words).  He went home, took stool softeners, and drank prune juice until he had a bowel movement.  Then, he went in for the Prostate Exam.  His doctor told him his prostate felt as hard as bone, and sent him to an Urologist.  The Urologist sent him immediately for a Prostate Biopsy (12 samples). The prostate biopsy report is listed below.

Prostate Biopsy Report on 4/4/14 gives the following Pathologic Diagnoses:

Specimen Site          Diagnosis                          Gleason      %       % Pattern   Perineural

                                                                        Score    Tumor       4 or 5      Invasion

A. Left Apex             Prostatic adenocarcinoma   4+3=7      93%         90%        Yes

B. Left Mid               Prostatic adenocarcinoma   4+3=7      96%         90%        Yes

C. Left Base             Prostatic adenocarcinoma   4+4=8      94%        100%       Yes

D. Left Lateral Apex  Prostatic adenocarcinoma   4+4=8      35%        100%       Yes

E. Left Lateral Mid    Prostatic adenocarcinoma    4+4=8    100%        100%       Yes

F. Left Lateral Base   Prostatic adenocarcinoma   4+4=8      94%        100%       Yes

G. Right Apex           Prostatic adenocarcinoma   4+4=8        3%        100%       Yes

H. Right Mid             Prostatic adenocarcinoma   4+5=9       86%       100%       Yes

I. Right Base            Prostatic adenocarcinoma   4+5=9     100%         90%       Yes

J. Right Lateral Apex Prostatic adenocarcinoma   4+5=9       90%         95%       Yes

K. Right Lateral Mid   Prostatic adenocarcinoma   4+5=9     100%         75%       Yes

L. Right Lateral Base Prostatic adenocarcinoma   4+5=9       93%        100%       Yes

Clinical Information:

790.93 elevated psa

PSA Level: 123.30

He has appointments on Monday (4/21/14) and Tuesday (4/22/14) for several scans.  I know one of them is a bone scan to see if the cancer has metastasized.

Any and all support/advice will be gratefully welcomed.  Thank you for taking the time to read and/or answer!

Let's see how the scans come back.

I can understand that he may not want to undergo the side effects of surgery nor radiation, but perhaps he will be amenable to hormonal therapy.

My side effects the first year while a nuisance were certainly tolerable and so far no side effects during the second year other than the total loss of libido that may not be an issue at his age with former wife deceased.

Good luck and keep us posted. With some prompting perhaps he will read some of the posts on this board.

LupronJim

Thanks to F8, LupronJim, and Tall Allen for your empathy and feedback.  I appreciate the advice, support, and positive way you replied.  We spoke and have decided to wait until the scans come back.  As an adult, I respect his wishes, and understand his perspective; however, I still have a wee bit of the "little girl" who wants her daddy to be ten foot tall and bullet proof. *sigh*

Special thanks goes to Tall Allen, my Daddy really appreciated your response.  It was logical, understanding, and positive while being realistic.  Thank You!

Your father has a very serious diagnosis of PC, lot of high percentage, high Gleason positive cores. Factoring in his age, etc, surgery would not likely rid him of the cancer at this point. He would need multiple treatments at best. The suggestion of HT might serve him best, to slow down the cancer load, allowing him to go on with his life the best he can.

A good medical oncologist with experience with advanced cancer such as his, is well in order, if you have not done so thus far. Perhaps the doctor, your father, and yourself, could come up with a treatment plan that would be agreeable to with your father.

If he doesn't have some kind of treatment, it will likely progress fast.

Wishing and hoping the best for your father, and for you, for being there for him.

David in SC

Hello MsGlad (and your Daddy),

I'm so sorry you have to be here but glad you found us. Seems like your daddy and I have similar DX.

All the guys have given you great advice, and I really don't have much to add. It's a very hard DX to face and praying for your dad that the scans are all clear. Like others have said, taking HT is the best treatment at this point and time. I was had so much back pain, I could hardly get out of bed. After HT for a few weeks, started feeling much better.

At the age of 61, at the GP office, she ask me if I wanted a PSA test, I asked her what's PSA? Long story short, had the test, scans, CT's, MRI's and now been on HT since Oct. 1, 2012. My urologist was the best one could have but in February of this year, I changed to an oncologist because of my high volume and very aggressive PCa cancer.

Your daddy is very lucky to have you by his side and I know you want to do all you can to help him through this ordeal. Just keep coming back and ask any questions you may have as there are many great men and women here that can give you great advice.

Just to let you know, you and your daddy are in my thoughts and prayers (daily).

Dave in Bartlett, TN

Hello MsGlad,

Most of the advice you've gotten here is what his doctors will tell him next week. What we can offer him is experience from guys who have been there that the treatments the doctors will be talking about aren't that bad, that they will give him a bit more time, and more important, they will help him be more comfortable and more active with the time he has left.

Hello ......

   There isn't much I could possibly add - but maybe to give a little encouragement. While the major decisions are up to your Dad, I hope he realizes how lucky he is to have someone so caring in his corner.

   While my own PC was diagnosed 10-years ago, at the age of 61, I had the typical treatments of that timeframe - and it appeared as though the PC was gone ... and for 6-years.

   For the last 3+ years, I have been fighting metatastic PC with catscans showing a previous spread into the liver, rib cage, lymph node, adrenal glands and blockage of the kidneys.

   I have been on chemo, intravenous and oral both, over the past two years and most often with prednisone + lupron HT for three years. I'm nearly your Dad's age, and my life has not been a disaster while on these meds.

   There have been SE's - mostly reasonable, and I have been weakened by, in my opinion, all three of the above treatments. In the past year, my loss of muscle has been noticeable and very concerning to me.

   I am in a monitored excercise program and that is helping my overall feeling of well-being. And I've consciously increased my protein intake the past two months - and that has helped.

   My point of the above is ..... there are things that can be done to improve the challenging quality of life of a PCa patient. In addition to the PCa, I do have COPD (for 6-years) and Kidney disease (from the PCqa blockage).

   Hope ..... is what I'm trying to sell. It's not perfect, but it is there for nearly all of us, at least at this stage.

   Best to you and your Dad.

Rob & Gizmo