I am 79. Since Jan my PSA has gone from 0 to 58. Lupron injections and oral meds no longer work. The doc says it is time for hospice. What should I expect?

Hello Norm,

Welcome to the forum. Sorry you find yourself here but glad you found us.

We have a number of caregivers on the forum who are either in the hospice process now or have been through it recently. I'm sure they will be by soon.

In the meanwhile, if you could tell us a bit more about yourself we can have a better idea what to tell you.

Do you have a list of the drugs your doctors have tried? There are lots of drugs that can go on working after Lupron (and similar drugs) have stopped. There are also new oral drugs that can make a man more comfortable with advanced metastatic disease and delay the progression somewhat. Before we can tell you what to expect in hospice we will want to understand why your doctors think that is the next step for you.

Often the decision to seek hospice care is made when it becomes difficult to control a man's pain. Is that the case with you? What have the doctors done to try to help with that?

Hi,

I was not diagnosed until it had already spread to the bone. Gleason 8+. The urologist said the Lupron meds would keep me going for several years, put 18 months later they have stopped. Each month the PSA doubles, even while continuing the meds. The urologist and oncologist say there isn't anything else. I have accepted this. I am just wondering what happens next. What should my family prepare?

Norm,

Like I said, the members who know about hospice will be along in a bit to answer your questions about that. I gave them a bit of a heads up.

But while we wait for them, I'll go on pestering you with questions about why you and your doctors think hospice is the next step. You are a Gleason 8. That sucks but I am a Gleason 9. You have bone mets but so does LupronJim who just posted. Your PSA is 58 and heading up but we have a guy here whose PSA was over 3000 eight years ago. Lupron has stopped working but Lupron is only the first of a long line of drugs that doctors try when a man's cancer becomes castrate resistant. If your PSA was zero in January then you haven't had time to get into the process of trying all the other drugs. Are you still taking Casodex (Bicalutamide)? Sometimes when a man is taking both Lupron and Casodex stopping the Casodex will help.

What is the nearest big city to where you live? Maybe we can recommend a doctor for a second opinion.

Hello Norm .......

   I am to a degree in your boat - and do see hospice in my future - sometime at least!

   My recent experience with hospice is about 6-months old - and was for my Mother in her last few months of Dementia.

   I would absolutely get a second opinion from another oncologist, and also ask your current one why he mentioned that.

   My experiences with hospice were:

1) It can be either at their location or your location - many options!!!

2) It is covered by medicare - for costs!

3) The degree of help is tailored to your needs - for personnel!

4) Their purpose is to help reduce pain and bring some comfort!

5) They do not control your doctors - at all, but work with them!

6) They may reduce your medication not affecting pain management!

7) My experiences with them has been excellent!~!!!!!

8) They will likely reduce the physical help needs from your family!

   Please double check first ..... medical opinions of the need for hospice. 

Rob & Gizmo

  

Norm,
I hope you can find the answers you're looking for on this forum. The men and women here have knowledge, compassion and a deep understanding of what it means to have prostate cancer.
I think you have gotten some good advice already about getting a second opinion from another oncologist as there are so many new treatments out there for advanced prostate cancer. It would help to know more about when you were diagnosed, what exact meds/treatments you have had in the past and your current medical status. Then, the information can be more targeted to you individually.
I have already contacted hospice in my town for my husband Frank. He does not need their end-of-life services but, they have a palliative care program that includes counseling services which he is using. The neat thing is his counselor comes right to our home and I clear out so they can talk. We find it helpful to have Frank talk with someone outside the immediate family/friends. I think he can talk about things that he is not comfortable saying to us yet. As Frank's treatment is considered palliative and not curative, he qualifies for their services. And, they bring a wealth of expertise to help us navigate insurance, meds, etc. etc.
So, maybe you and your family might find it useful to contact the local hospice and just get to know them. It is always great to have more information, rather than less, in my humble opinion. Please keep posting and we all start caring about others on this forum.
Lisa