Heading to Dr for Treatment Discussion Tomorrow - Need Advice Please...

Hello. My name is Rebecca and I posted a few weeks ago about my dad. (Synopsis - He has very aggressive prostate cancer (gleason scores 8, 9 and 10) and it has spread to his lymph nodes. He is 72 years old and is very active...)

Anyway, at his last appt (before he had the biopsy for the lymph nodes) the urologist was all doom and gloom "this cancer is very aggressive and it does not look good" - - but yet can't see my dad for over 2 weeks to discuss much less begin treatment. Anyway, that vent is over with...

I am joining my mom and dad at the doctor tomorrow and would like to have some insight and/or help from you guys about what we should be asking. As I stated in an earlier post, the doctor indicated that hormone therapy was a must but did NOT mention radiation or anything else (in addition to the HT). I'm obviously going to discuss radiation tomorrow but what else should I be thinking about (and perhaps he didn't mention radiation because he was waiting to see the results of the lymph nodes, regardless...)

What types of questions and/or things should I be bringing up at this appointment? I've done some research but I know you guys are way more knowledgeable and helpful than any google search.

Thanks in advance!
Rebecca

Hello again Rebecca,

Good luck with this all important doctor meeting. Remember the doctor is working for you, not the other way around. Don't leave without all your questions being answered fully and to your satisfaction.

Definitely have some key questions written in advance, in case the doctor doesn't cover them. And have lots of room to write down his answers.

Some doctors tend to bully patients, while others are very empathetic toward their patients, hope you are dealing with a good caring doctor that listens well.

Will be hoping for the best, for both your dad and you.

David in SC

I agree that we need to have an oncologist involved. My dad has one (he had some issues a while back where he had some carsonoma (sp?) removed from outside of his intestines) but I'm not sure how involved he is with prostate cancer. We live in the Cincinnati area - - this is on my list of questions to ask tomorrow but you know how doctors can be and he may think he can handle it. I just don't know. My dad says he's a young guy (which my dad likes because he thinks he'll be "up" on all the new treatments and options) but from what I can tell, I already don't like him. Not because he's the messenger, more because I feel like he's not giving a vibe of "we'll beat this" - he's very doom and gloom. Also, I don't like the way my dad has had to wait so long for an appointment to even DISCUSS treatment options...

For what its worth - Oncology Hematology Care in Cincinnati has some great doctors. They are very open and highly involved in clinical trials. Our oncologist would sit forever and talk with us, up to date on trials, and answer all questions. Do have your list and check it off - good suggestions above on questions.

I second Passages' reco for Oncology Hematology Care in Cincinnati. We see Dr. Leming there, and really like him (he's our local doc, we also see Dr. Myers in Virginia -- Leming was more than happy to coordinate care with PCa-specialist Myers; Leming was also a trailblazer in new PCa treatments in Cincinnati years ago, although I think he does less PCa these days).

Dr. Leming is very positive. We had terrible statistics when we first saw him, and he was incredibly positive -- lots of info about the recent progress in treating PCa, lots of anecdotes about patients that not only survived but thrived for many, many years. My husband was really scared (the urologist told him it was too late to do anything, nothing would extend his life, but treatment would reduce the quality of his time remaining). Leming was a huge relief to him, he walked out with much less weight on his shoulders.

I bet I know what practice you were using for the urologist too -- we got astoundingly indifferent care from the big urology practice in Cincinnati. We also heard G9, metastized (to multiple bones as well as lymph nodes) and also heard that they didn't have time to see us for several weeks. Among several other disappointing things they did during those stressful days.

So this meeting is important, but don't let them depress you. My impression was that because what we were dealing with was beyond what they (the urology practice) could fix, they considered it unfixable.

Has your Dad had a bone scan? If not, he should get one pronto. You need as much info as possible upfront to make the right treatment decisions.

Thanks everyone for your replies. (PS - He has had a bone scan and it came back clean...)

We went today and well... I'd like to say it went better than it did. The urologist's treatment is HT only. He said he didn't think that radiation is going to do much of anything (which I do NOT understand). He said he wants to see how the HT will work out before going any other route. Here's the thing... He said that my dad is very unique because he has this very aggressive cancer but his PSA is VERY low (I don't have an exact number). So he's assuming that the cancer in his lymph nodes are due to the prostate cancer but it's unique because his PSA is so low. So unless we want to send his biopsies to be studied by pathology (which will take a very long time and money) they just have to assume that it was the result of the prostate cancer. And to further make it complicated, they can't really use the PSA count as an indicator if the HT is working. So he's going to have to have CAT scans, bone scans, etc. more frequently to see if it is working.

I just don't understand why he doesn't want to do the radiation. He recommended us to talk to a radiologist oncologist if it would make us feel better but then went on to say that we should get a PET scan to get a better look at the lymph nodes to take to the radiation oncologist. He is worried that radiation may be bad because of where they are located (outside of the pelvis) and could be bad for the bladder, stomach, etc.

So may dad stared HT today and got his shot but that's about it. He's going to talk to the radiation oncologist too so that makes me feel better. And he talked about diet and for my dad to quit smoking (duh) because you should treat the prostate like it is cardiovascular/heart related - but I haven't seen/read too much that talks about how diet is really effective. Is it?

Bottom line - I just wanted a fan. I just didn't feel like he wanted to even discuss other options, he almost just brushed them under the rug. He just wasn't encouraging to me at all...

Yes, my dad (and mom) will be going on the "Mediterranean Diet" immediately. My mom is looking to buy a good book - any recommendations?

And maybe we should do this over personal email (or some other method) but I'm very interested in this Dr. Leming you speak of. I looked him up and he is very close to us but it seems he specializes in bone cancer. Is he still a possibility to speak to for a second opinion for my dad's situation (even though it hasn't spread to the bones)? Even though Cincy is a mecca for specialists, I can't seem to find a prostate cancer oncologist!