The Bumpy Road to upcoming RALP

thanks Micheal
I spent awhile on Prato's blog on a rainy Sunday and noticed he went to Tewari

Thanks halbert - Most of the gut feeling is coming from dealing with the office staff and not sure if Dr are getting the message. Drs very experienced and well known in our area, but I can use others in NYC for example.

One thing I did was go into the office when I didn't get a call back (it is down the street from my work). Nurse practitioner was right on it - was regarding pre-biopsy and straightened it out. But if I'm going to have to do all of the post op follow ups with them, I can see that it will be an arduous road.

KC, I WAS VERY HAPPY WITH Tewari, still see him. If you have questions feel free to ask, or email me if you prefer.

Forgive me last post ...my diagnosis was a bit better than yours ....I am doing thr. Combo RT ...brachytherapy boost....they say that in high risk patients it may have better outcomes ..,it’s just that I suffer from anxiety bad ...the side effects are not that bad if you can handle gettin* up 3 4 times a night to pee fir a while and having loose stools ,..I don’t sleep a lot so everything is exaggerated for me ... wish you the best ...but having to do both would be a drag .....but we have to do what we have to do ....get the genomic testing for sure

Hi Stan, no worries!

I appreciate everyone's feedback and learning of their experiences.

KC, agree that if something doesn’t feel right with a doctor you ought to move on.
My surgery was in NYC at MSKCC with Karim Touijier — great guy, personable, accomplished surgeon.
Took a dozen lymph nodes, all negative, said he thought he had gotten it all despite ECE. However, PSA persisted at six & twelve weeks and six months so now doing radiation at MSKCC Westchester. Other than feeling tired, more from the ADT than the SRT, and ED from the surgery (nerves spared on one side only), there don’t seem to be SEs, although each of us is different and my SEs may intensify as the SRT continues plus another shot of Lupron next week.
Although they do all surgery in NYC, the regional MSK facilities are as good as the home office for radiation and are more informal — in NY you show up an hour before and they take you everywhere, but at Westchester I get there just in time for treatment and go to and from the holding area by myself, plus the check-in staff all know me by name. Feels more comfortable than the big place in NYC. On the other hand, the physicians in NYC (Zelefsky especially) are the best. My RO is Borys Mychalczak, head at Westchester and Bergen; he’s following the MSK standard protocol and is very well regarded also.
Not sure exactly where you are, but MSK has several satellites in NJ, including newly-opened one in Bergen.

As many people have said, you have some time to decid.

KC,

Did you ever have your slides sent off to Johns Hopkins for second opinion?

Going for a consult at either of the satellite MSK sites is a great idea--it should be possible to call in and ask for a consultation appointment with as many different subspecialites as they have all on the same day--the office staff do that sort of thing all the time.

As far as worrying about the docs on vacation--that's not a major worry--you don't have to make the appointments for tomorrow at all.

Good for you for postponing. It may well change your direction completely.

and Halbert
thanks for posting your story - I'm on day 11...

one suggestion for those out there looking to retain lung function while not moving around a lot - get a spirometer (hospital gave me one after hernia surgery)
BIG HELP!

Halbert, thanks for being the clear thinker - I'm getting there.

We've had a few family issues last few months, father in law passed from lung cancer mets at 84 in April and my mother in law is 86 and has Alzheimer's. It was a struggle to get her to come back to NJ from NC but we convinced her. She's in a memory care facility in Princeton, NJ near my sister in law

So some of my fog is from other events, getting my bearings now and looking forward to a few weeks of consults. My insurance company has been great with support and work has been as well.

One advantage for me is that I can work from home when I need to and work is only 15 miles away. So perhaps I'll dodge the cabin fever in that respect