Working on second opinion and looking at a different urologist

It has been a bit since I last posted. We are almost 2 weeks into knowing about the cancer. I have been doing a lot of reading.

I am looking to make an appointment with a Dr. Joseph Smith Jr. at Vanderbilt. He is supposed to be one of the best out there, at least in our area that I can find. I believe I found his information on here digging thru the search for Vanderbilt. I will ask him for a RO recommendation when I get to see him. I am sure there are some great ones there as well.

Question, I had looked at another Urologist there, but if I can get in with Dr. Smith I assume I would be better off. Does it matter what urologist you use at a huge place like Vanderbilt and then choose him as a surgeon or should you use him for the whole thing?

I also have been attempting to get the second opinion from Dr. Epstein. I called my current Uro and they said I needed to have him request the slides and report from them. Looking at the first sticky posts I see that is not how I thought it worked. I called my PCP and asked her to request that they be sent to Hopkins for review. She is currently working on that for me. Hopefully she can make some progress. If not I will ask for them my self.

As for us, we have researched some diet things and went shopping for some new items. I have cut all but one coke a day out and will probably cut that one out soon. I just hate to see them go to waste. I started back to the gym yesterday to hit the treadmill. Luckily our office has a fitness center in it. This morning I went to Planet Fitness because they have more stuff available to use. I started going to a chiropractor a few times a week to make sure there are no nerve blocks keeping healing from flowing to the area.

My next appointment with my current urologist is on Nov 27. That will be a busy week for us. We have Thanksgiving, I will be visiting my dad for probably his last one, then meeting back up with my wife, she will be doing Thanksgiving with our kids here. I have the 26th off trying to use up some vacation days that won't carry over to next year. The appt. on Tuesday, and we are supposed to be doing a double closing on the house we live in and the one we are buying on Wednesday. That should keep my mind busy at least a little bit.

We plan to get the Uhaul truck on that Saturday. I invited all the kids over for steaks on Sunday, using them up since I am not supposed to have much red meat, and letting them help us move some of the heavier items out to the Uhaul. Sneaky huh! I will get the stuff out of the storage unit on my vacation day and be all ready to go for Wednesday's big move.

I hope everyone is doing well and we all have a lot to be thankful for. I know mine is for my wife, and catching this thing early enough I don't have to panic and make bad/uneducated decision.

Larry

Larry - This has probably been covered in another thread, but with your G6 diagnosis, I wouldn't rush into major diet modifications, either. To my knowledge, there have been no peer-reviewed studies or Randomized Clinical Test results published that show any significant (statistically valid) impact of diet upon prostate cancer.

If any such results were accepted by the medical community, most or all docs would push them.

NOTE - I am not chastising or flaming you if you want to change your diet in the hope of improving your chances with prostate cancer. I am only saying that if you choose diet modification, you don't need to go overboard with it to try it. You WILL have much more life to live. Make sure you can enjoy it.

Saipan has given you a very good advice.

I was diagnosed with Gleason 3 + 3 cancer in 2011 with 2/12 core 10%. I had seed implant in June 2011. My cancer came back outside the capsule in 2016. I had cyberknife with ADT in 2016 and 2017. In 2018, my PSA started rising very rapidly and now I have metastatic cancer in many lymph nodes. The prostate is cancer free. I am telling you my story not to scare you, but asking you to be very vigilant. Get a second or even third opinion on your biopsy to rule out higher grade cancer.

When you are diagnosed with a low grade and low volume prostate cancer, AS is the best option. But you must have regular scans and biopsies to ensure the cancer is not higher grade and is confined within the prostate. A low grade cancer can remain confined within the prostate for many years.

Hey - my RO at Vanderbilt 5 years ago (2013) was Dr. Shinohara. I liked him a lot, since he patiently answered all of my oh-so-many questions patiently and intelligently. Vanderbilt at the time had 3 physicists on staff making the treatment plans. Since then, there have been blessedly few side effects from the radiation.

You'll be in good hands at Vandy no matter what you choose to do. Best of luck!

If you’re considering AS....Smith may scare you. He’s wasn’t a fan...at least in my case. A great and distinguished surgeon....during my consult....he had nothing good to say about AS. Maybe that’s changed. (It’s been 3 or 4 years ago). But unless he’s changed his tune (which is very possible), don’t be surprised if you leave there scared of AS. YMMV.

Hi guys,

I am still leaning toward AS, but perhaps I am doing more research than I should. Everyone said do lots of research. I figured I would try to find the best team of people to educate me. I am not rushing to surgery and have mentioned being referred to a RO at Vanderbilt as well.

AS is what I want to do. My wife is more concerned than I am and is starting to be ok with AS.

I have my appointment with the guy that did the biopsy on the 27th and am going to ask about his AS protocol. I will share it here when I have it.

I have found--both in my own case and in stories here--that spouses, family and friend almost always advocate for surgery. The thinking is that: 1) you have cancer and 2) you need to get rid of the cancer. It's very logical and they're well-meaning and they are offering you their support. But when you start researching what to do with PCa, you find it's more complicated than that. Besides surgery there's AS and a bunch of different types of radiation...and it's hard to get a clear answer on what's best. (Although if you remain a G6, the chances are that *any* treatment will cure you.)

I think the fact that you're doing a lot of research is a great thing. Deciding on AS or a treatment is the hardest part of this journey, IMO.

bbqdude said...
...we are supposed to be doing a double closing on the house we live in and the one we are buying on Wednesday. That should keep my mind busy at least a little bit. We plan to get the Uhaul truck on that Saturday. I will get the stuff out of the storage unit on my vacation day and be all ready to go for Wednesday's big move.

Larry - my surgery story was a lot like what you're facing. Biopsy in late June two years ago, got the diagnosis on July 5th and scheduled RP for the end of August. Rented a uHaul and drove most of our furniture 1000 miles to our new condo in Florida in early August, and flew back home four days before the surgery. I spent most of September on the phone with contractors in Florida working on our condo. We closed on sale of our home of 33 years in late October and officially moved Oct 30th. Then in early December my wife was diagnosed with lymphoma.

When it rains it pours. Yes, trying to have a prostatectomy in the midst of a move will indeed keep you busy. If you'd like to read our entire story check out: Cancer Couple Blog

Blackjack said...
Smith at Vandy is a high-flying surgeon. People who go see him generally already know his reputation, and go there because they've decided they want surgery and they want him. If I needed surgery, I'd want him to do it.

Here's the thing...you don't need surgery. He's not going to be the guy who is most well informed about what you need...but he definitely knows his crap about surgery. Smith will no doubt tell you that you need surgery; and he'll tell you he's confident that he can take care of your case. Not telling you what to do, but I think you're wasting your time seeing him which could/should be spent finding out which uro at Vandy (or wherever) has a lot of patients on the less-glamorous path of Active Surveillance.

Thanks Blackjack. I will take that under advisement. There was another doc I was looking at there as well.

BBQ,
You are getting a lot of good advice. You barely have cancer, and many doctors would be very hesitant to treat what you have as the cure would be much worse than the disease.
Find a good Uro that supports AS and you can go many years and perhaps forever with out suffering the side effects that come with surgery.

Thanks Ubber!