Got my appointments/plans in place--questions to ask?

Well, my appointments are all set.

On Monday, I go to Umich and will see:

Dr. David Woods, a surgeon and then Dr. Hamstra, a radiation doctor, and finally Dr. Hassain, a urological oncologist.

(I may have the spelling wrong on the last two names above -- I'm too lazy/tired to dig through a growing mound of papers now to find it)

On Wednesday, I will be seeing Dr. Menon, a surgeon at Ford Hospital, and his team.

I have already requested that my slides be sent to Ford Hospital for a second reading. If they concur with the results I have, I will probably not seek a 3rd reading from an expert; if there is a difference (especially if it is worse), I might send the slides elsewhere if I feel it will make a difference in treatment. It also might be that Ford will send the slides out for a third opinion.

Ok my friends. I really seek advice on what to ask. I am going to ask each expert what his expertise can offer me (ie: radiation/surgery). Also, I want each doctor to look at the biopsy report and tell me what they think I should do. I guess that's obvious. Also, I had an umbilical hernia repair at birth and an inguinal hernia repair in 1988, so the obvious question for the surgeon: does that impact the surgery.

Meanwhile, I've done tons of reading/research but I also feel a bit burned out. It seems early on I had a ton of questions but now I don't. I will ask if I have aggressive cancer, but I know it is impossible to answer that at this time. (It's silly, but I'll ask). I realize it is difficult to prognosticate without the final pathology after a surgery. I can run the Partin Tables and Han table. I have and that's probably my best estimate at this point.

I will ask the surgeons about recovery times and their experiences with after-effects (incontinenece and ED). I will also want assurances that THE surgeon I'm talking to will be the one to do the actual surgery.

Although I am clearly leaning towards surgery, I will have an open mind about other modalities.

SO, I KNOW there are probably another 20 questions I should be asking. I would welcome suggestions!

Mel

 

Mel- you have done a terrific job in looking at this with books, questions, analyzing things. This forum gave you alot of feedback from a multitude of perspectives and travelers on the PCa highway. I would say you could review the questions list that is used herein and posted at www.yananow.net or consider some of those and would say you probably already analyzed those?

My passing thought is add this: seek higher guidiance cannot hurt you, in making your final decision and secondly put on your game face and use your intellect or like street smarts....know when you hear b.s. and analyze the source for your own comparison and contrast. There is b.s. out there...you could ask them a loaded question to see how they answer it...that could be a clue. (bottom of Page 13 in green ink of Dr. Strums book kind of sums that up in alot of different words)

Post Edited (zufus) : 12/9/2009 5:52:37 AM (GMT-7)

Hi Mel,

My advice is to listen carefully to each of these professionals and take notes or use a small hand held recorder to record the comments as after a few meetings, you will not remember it all and may even mix things up. Take someone with you if you can as they can help in remembering what was said. It can be confusing especially as you are stressed to begin with and the medical jargon they use can be a chalenge to understand. Then review all the advice in a comfortable time period, in your space, and make a decision that is right for you.

Hope that helps,

Regards,
Bill

Be careful how you ask the "are you the doctor who does the surgery" question. Asked that way, the question will (nearly) always be answered in the affirmative. I would also ask (getting at the same question) "what role if any do residents or fellows (or anyone else) play in the surgery". I would ask Dr. Hassain not only whether she recommends surgery or radiation, but also how she would go about making the decision (advantages and disadvantages of each). She is likely to be the most "neutral" of the three concerning the choice of treatment modalities. I would ask the radiation oncologist (and Dr. Hassain) whether, if you did radiation, they would recommend only IMRT, only seeds, or a combination, and why? (And if combination, in what order -- an issue about which there is difference of opinion in the radiation oncology field). Ask whether studies show increased "cure" rate with both seeds and IMRT, compared to one or the other, and whether increased side effects. Ask all the docs about the advantages or disadvantages of adjuvant hormone treatment, before/during/after treatment, and if so what is the appropriate legnth of adjuvant treatment. (I would ask more than "do you recommend this" -- you seem like a careful guy and I am not sure you will be satisfied with a yes or no answer -- so ask WHY they do or do not recommend and what the medical evidence is to support or not, etc. -- of course you do not need to understand the reasoning and the medical evidence, but it might make you feel more comfortable -- and anyway you want a doc who is willing to answer your questions and provide reasoning). I would ask all whether they see value in going to the Netherlands for a combidex scan, to evaluate lymph node involvement (if you have the inclination/resources to do that if it were recommended). I would ask someone (maybe not the doctor) whether your insurance is covered for the contemplated treatments. I would ask the radiation doc what is the ideal dosage of radiation, and over what period of time. I would also ask the radiation doctor whether he thinks the ASTRO definition of biochemical failure is the right measure to use, if you were to go with radiation, and if not, then what would be his measurement for biochemical failure and what would be recommend as the next step after that. I would ask the radiation doc and also Dr..Hassain about the advantages and disadvantages of proton beam radiation as an alternative to IMRT. Ask all the docs whether they have any diet/nutrition advice, and what it is. If you have not had a vitamin D level test, I suggest you do so and depending on your 25(OH)D level you should ask about vitamin D3 supplementation. I hope some of this is helpful. I do not have prostate cancer, so there are many here who are MUCH more knowledgeable than I am. But I went through all this with my dad in some detail, and learned some things in the process. As someone else here said, I admire your tenacity in learning and seeking out expertise. I suspect that tenacity may help save your life. Just make sure that, in between all this prostate cancer stuff, you have a few good dinners, see a movie, etc. Best wishes,

If you can bring another person with you, sometimes the info you receive can be confusing later

If you are having Robotic, its ok to ask your Dr, who is operating the Console and who is opening and closing. Its also ok to ask your Dr how many time he operated the console. They may lump in all surgeries, you want to know exactly how many time he operated the controls

Ask each what is the Doomsday scenario, if I choose radiation what options do I have next. If I chose surgery 1st , what options do I have if it comes back

Start your ED recovery today, the more you use it before surgery the faster your recovery will be after

I always asked each Dr one final question. "If you were in my shoes what would you do and why"

THANK YOU   THANK YOU   THANK YOU.

This was one of the most informative threads. I have added greatly to my list of questions/concerns. Now to organize them. ALSO the links specified were very helpful.

Incidentally, one question I had that I did not see anywhere else:

Can I email you with questions?

Mel