Questions for My Husband's Doctor

[Tinuriel]

We met with my husband's managing oncologist today and I asked these questions - which, thanks to this forum I knew to ask! It seemed only right that I share the questions and the responses in case someone might find it helpful.

docs.google.com/document/d/...

A friend with a lot more experience with doctors gave me this advice: Write out your questions ahead of time, and print out two copies - one for the doctor, one for you to take notes. I did this and it worked like a charm - I could focus on recording the info, and my husband could be present to what the doc was saying and ask his own follow-up questions. And all of our present concerns were addressed.

I follow almost all posts with concern and prayers for each of you.

[JohnInTheMiddle]

Tinuriel - fantastic. Your questions are great and the recommendation to bring in two copies of printed questions is great. And the summarized answers are great too. Time with a medical oncologist is precious - use it wisely. I have found that generally they will work with us until we run out of questions 😂

[Tinuriel in reply to JohnInTheMiddle]

Thanks for your kind remarks! True - the appointment might have been much shorter if we hadn't come prepared.

[Darryl Partner]

Thank you. A well-conducted consult.

[Tinuriel in reply to Darryl]

That means a lot coming from you! Thanks, Darryl.

[Carlosbach]

Fantastic preparedness and advocacy. Many Kudos.

I have done the same thing with 2 lists. I had one MO who hated for me to hand him his copy, so I also started messaging the questions to him prior to the appointment and that seemed to help with his objection to the lists.

Fortunately, the balky MO retired, so I don't get the same resistance, and I can now use a regular sized font 😀

[Tinuriel in reply to Carlosbach]

Thanks! We are really happy with our MO's willingness to engage with us (our RO is less chatty, but it's less needed).

[Avanat]

These were great questions. I appreciate you sending these along with your doctors answers. My husband is also asymptomatic. He is not castrate resistant yet but we have gone through the different options with his doctor for when the time comes. Hopefully by then there will be even more options! Thanks again for sharing and good luck with your husband’s treatment.

Alana

[Tinuriel in reply to Avanat]

Thanks, Avanat! I really appreciate my fellow sisters out here and glad we can support each other's journeys.

[Mcrpca]

Thanks for posting. My husband is getting ready for second dose of Zofigo. This time I will make sure he is well hydrated before the infusion and give him some ibuprofen & Tylenol about 2-3 hours after. Other than a brief episode of pain about 4-5 hours after infusion, no other side effects.

[Tinuriel in reply to Mcrpca]

Glad to hear he is tolerating it well. We are amazed that my husband has hardly noticed anything different so far. Three down, three to go.

[dhccpa]

Excellent Q&A! Thanks for sharing.

I always wonder, though, if one took the same questions to the closest oncologist down the street (so to speak), one who didn't know what the first oncologist answered, how similar or different the answers would be.

[Tinuriel in reply to dhccpa]

I wonder that, too. Each situation will have variations on a theme based on the doctor and the individual. Thanks for your comment!

[Tinuriel]

Good words! And I just got my husband signed up for the Promise Study - thanks so much for that tip!

[pjd55d]

years ago - for another health issue - a friend told me" " You have to participate at a high level in your health care. " Very true. I also believe that when one does participate with questions and discussions, a good provider respects that and engages at a better level.

I also believe - and know from experience - if your questioning and participations annoys the provider - find another one. I had a Urologists' who refused to share his note with my MO or my PCP - even thought the PCP was in the same health care system. I did tell him when I switched, WHY I was switching.

[Tinuriel in reply to pjd55d]

No fun. Hope you are happy with the replacement.

[pjd55d in reply to Tinuriel]

more than happy

[spencoid2]

Some great ideas, glad it worked for you. Also you can audio record the session in case you are not great at taking notes or are good at losing paper as I am. I have actually only done this once and it was a zoom appointment but proved useful when I wanted to know what the "doctor" had actually promised as compared with what he did. Confirmed my opinion that the guy is a rip off Most phones come with a recording app or you can get one for free from the app store (Iphone) or play store (android)

[Tinuriel in reply to spencoid2]

Great idea, and we've actually done that in the past and the doctor had no objections. But another doctor in the same system said no and that the clinic urges them not to. Best to ask!

[spencoid2 in reply to Tinuriel]

or just hide the phone in your pocket

[ron_bucher]

Thanks for sharing!

Regarding #12, he may be able to get genetic testing at no charge if he qualifies for this study: prostatecancerpromise.org/

[Tinuriel in reply to ron_bucher]

Someone else on this thread mentioned that and I got him signed up right away. Thanks so much!