How much to interact with care? - Prostate Cancer C...

Prostate Cancer Caregivers

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How much to interact with care?

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My husband is in year 4 after dx. Gleason 9 with multiple bone mets. He is on Lupron and Xtandi but PSA is rising about 2pts a month and is now 20. I always go to his appts with him. I handle all the bills and the insurance issues. I asked his MO about clinical trials on lu 177 vs Xofigo as his next treatment option and was told I should stay off the internet. My husband acts as if he would prefer I not go with him. I feel helpless. I want my husband to fight and ask questions but he seems to have given up. He sleeps most of the time now. I feel so alone. We have no family close by.

15 Replies

What lousy advice! Does this MO specialize in PCa? He/she should be happy to discuss your questions with you.

Darryl
DarrylAdministrator in reply to YostConner

Totally agree with YostConner. Are you in a large enough city where you can find another oncologist?

Darryl
DarrylAdministrator

It's hard to feel alone, after doing so much to help your husband. What looks like giving up might just be extreme frustration flavored with a bit of anger that his treatment did not do what he wants.

First, stay on the internet, if only to locate opportunies on clinicaltrials.gov and antidote.me/malecare-find-a...

Second, stay on the internet to find moments of distraction and pleasure for yourself. Just like the airline safety films say, you can't help others until you put your oxygen mask on first.

Third, Go to yourhusbands appointments whether he wants you to or not. Second option is to make an appointment for you, alone, to meet with his oncologist.

Fourth, you are not alone. You have all of us, here, as well as in the Advanced prostate cancer community. Keep sharing.

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Hidden in reply to Darryl

Thank you so much Darryl and Yost for your replies. Yes I will be sitting in the truck when my husband leaves for his next appointment whether he likes it or not. We live in a very rural area in upstate SC so no other cancer drs close but I wont stop searching and learning. I do feel like my husband is more very tired and depressed rather than wanting to give up. All this is so much for him to understand and deal with. Before this he was a very independent strong person who kept his feelings very close to the vest. He does not like anyone seeing him sick. My gut tells me he wants me close. That is where I will stay.

That sounds tough. Thinking about you...

I’m surprised they haven’t talked about resensitizing with chemo,

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Hidden in reply to NWLiving

Early in his treatment they tried Taxatere but he could only take one. He didn't eat for nine days. Since then no other chemo has been recommended. Even if they did, I doubt my husband would do it.

How are you both doing?

Hidden
Hidden in reply to NWLiving

We have our days that his pain keeps him in bed (hip and back mostly). Then there are those precious good days. Yesterday was one of those and we were both thankful for it.

NWLiving
NWLiving in reply to Hidden

Bill is up and walking quite a bit. Though he will suddenly have a hot flush and needs to cool off. We generally walk a bit for exercise. I’m having to make sure that I do some by myself so I can get my heart rate up. We’ve had a great week.

I think the hardest job is being the care taker. It is a somewhat passive but critical role for keeping information straight, questions asked and correct recording of the doctor's answers.

No waiting in the truck! You need to be front and center. My wife does this for me and it's invaluable. I think a second opinions is definitely warranted by the situation. See if you an find the closest research hospital that has a specialty in treating advanced prostate cancer or similar oncology practice. It may show that your husband's doctor is right on the money with his treatment plan or you may find a better treatment plan to pursue. In any case, the doc's dismissive attitude alone makes me think you should change doctor's, if at all possible.

I wish you and your husband all the best. Do keep in mind that your husband has to buy into additional treatment and a second opinion for you to do anything. If you can't convince him, IT IS NOT ON YOU....WHATEVER MAY HAPPEN NEXT.

Please keep us posted. May all the efforts on everyone's part pay off!

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Hidden in reply to dmt1121

I appreciate so much your reply. I have planted the suggestion to go for a second opinion to Atlanta or fly to MD Anderson. He said no we can't afford it but then I heard him on the phone with his sister telling her I wanted him to go. He may change his mind. You are right, I should stay front and center. Thank you.

your condescending doctor needs feedback from you.

Via patient portal email, I made it very clear that I will continue to read, investigate trx options and plan to discuss with him. It could be that your husband is overwhelmed and or depressed and needs you to take charge of questions, test results etc.. that is what I do and my husband appreciates it.

I also told the doctor that my husband is everything to us and that helped turn his attitude around. if not, find another doctor. I also see a therapist on my own to help me deal with this frightening apc. is there a cancer support group near you? take care

For second opinion you could try Duke or UNC (they should have at least a research hospital) or Johns Hopkins (a little farther from South Carolina) in Baltimore has an excellent center.

Can you make it into a trip for something else? See the sites in Washington DC with an extra day or something? We have to fly from Honolulu to San Francisco to see our consulting oncologist, and we use that time to go to baseball games and college football. The staff laughs because we pull out the schedules when we set our next appt! But it helps to have something to look forward to besides the doctor. However, we actually really like seeing this doctor too because he helps give us a big picture.

Good luck with all of it!

- Brenda

It’s SO frustrating to be dismissed by your husband’s doctors. I’ve been fourtunate with my husband’s urologist and oncologist, but I was treated with sarcasm and defensiveness from his long time GP when I asked about specific blood tests and about adding metformin. I’m thinking it is highly likely I’ve read more about prostate cancer in the last year than he has.

Have you gone for a second opinion? Dr. Tom Keane is in Charleston, SC. He seems like he might be a good choice for a second opinion.

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