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Posted 1/8/2016 12:10 AM (GMT 0)
Dec 1st
Psa 35
gleason 8
started him on casodex 50mg
did not say stage, but did say that it is in one seminal vessel, so after researching, I'm thinking t3b-t4.
ct shows swollen lymph node, bone scan clear
Dec 8th gave him lupron shot, and told him he wanted to get needle biopsy of lymph node, and we will get a call from his office to set that up. Well, a week later we were still waiting, called urologist office, they gave us number for radiologist, called them and they said they would get back to us, a week later we called again and we were told that the radiologist said that the biopsy would be too dangerous. Called urologist to set up follow-up appt.

we were scheduled a follow-up with urologist, for last week. Office called and cancelled apt, rescheduled for today, an hour before our appt time, office called to cancel again.. and made a new appt for February 4th..

So we are left hanging, don't know why the node biopsy is "too dangerous".. don't know his T N M
don't know how many positive cores of the 12 they did. The dr. has not given us a treatment plan..
I've read that sometimes hormonal therapy is used for months before radiation. Maybe this is his plan, but really, I wanted to talk to the dr. today to get some answers to these questions..

I'm thinking we need to get a second opinion, before we even know what we are dealing with, we live in Reno Nv. Any and all help is greatly appreciated..
Posted 1/8/2016 12:37 AM (GMT 0)
Welcome to HW, sorry you need to be here.

Sounds like you need a new doctor. At that PSA, you should be a high priority patient. I'd suggest you start looking.

Can/are you willing to travel for treatment/consultations? UCSF is a great place and only about a 5 hour drive (1 by air, you can often find cheap commuter flights between SFO and RNO). They might do better for you than your local docs. At your stage, you wan the best of the best on your case. Often a place like UCSF can do the diagnostic work and treatment planning with experts in PC and have your local doctors do the clinical work (shots, monitoring, routine blood tests, etc).

Something to think about.

On the plus side, the casodex is the normal starting protocol for some in your husband's place. The question is, would he benefit from other treatments such as radiation or chemo.

Hopeful some of the folks who know more about that will be along soon.
Hang in there,
Andrew
Posted 1/8/2016 1:50 AM (GMT 0)
Sorry to hear that you're having problems. How far are you from Las Vegas? Tony Crispino runs an USTOO prostate cancer chapter in Las Vegas, he was diagnosed around ten years ago with similar stats and is doing very well. You may want to reach out to him for help. I think I would be seeking a second opinion and searching for a medical team that you can count on. Hope you do well. Please keep us informed with how things progress.
Posted 1/8/2016 3:28 AM (GMT 0)
I agree with Andrew, Wife of Joe. What a horrible way for a Dr and his office to treat a patient whose just been diagnosed.

I'd call the office tomorrow and request, no. demand, copies of all of his records, including the original path report, and bring them to a practice that will take care of you as a priority patient.
Posted 1/8/2016 3:54 PM (GMT 0)
Find a new doc. It sounds like your husbands diagnosis is of minimal importance. Their failure to communicate with you so soon after diagnosis and to simply start treatment without discussing options is a bad sign. The Uro who diagnosed my DH was the same way. Now, he's just a bad memory. With high risk disease, you don't want to monkey around.
Posted 1/8/2016 7:08 PM (GMT 0)
Fire your doctor!

You shouldn't have to wait until Febraury 4th. Anxiety is the worst symptom of a cancer patient. The good news though is PCa is slow growing but you should know what you are dealing with.

As Pratoman said, get a copy of your path report if you don't have it already and from now on, get copies of everything for your own records.
I have a huge binder I keep everything in.

Bill from Florida cool
Posted 1/8/2016 8:34 PM (GMT 0)
I'm not going to be able to contribute much but I wanted to echo what the others have said... You need to fire that Doctor immediately. Totally unacceptable level of care.
Posted 1/8/2016 9:18 PM (GMT 0)
The sad reality of a PC diagnosis is that you need to be your own advocate. No one will care about your health as much as you do. In your husband's case, he has high risk cancer and it was appropriate that they started him on hormone therapy. Plus, it buys you time as you investigate how to move forward.

I agree with the comment that it could make sense to contact Tony Crispino since he's in Nevada and could provide some local references. Here in Southern California there is Prostate Oncology Specialists and they might be helpful in providing overall staging of your husband's disease and providing direction for specialists.

Also, was there a bone scan or any other diagnostics done?

Good luck to you and let us know how we can help.
Posted 1/9/2016 1:25 AM (GMT 0)
Hi W.O. Joe, man, sorry you have to deal with that type of frustration. You have every right to walk in and demand you reports to that you can find another doctor. Like Michael T, I am seeing a Medical Oncologist at Prostate Oncology Specialist. You need to find good doctor quickly with those numbers. I know its overwhelming but good luck on your doctor search and research on Joe's treatment. Keep us up to date. Good luck. Take care. -JR
Posted 1/9/2016 9:21 AM (GMT 0)
Dear Joe's Wife
What a dreadful tale.
By now you'll know there's some great people here to provide support. I agree with all the advice before. Change your team.

Good luck and visit often

Hugh
Posted 1/12/2016 4:48 AM (GMT 0)
Thank you all for your support and advice, it really helps. We are checking into going to Loma Linda in So. Cal. I will keep you posted....
Posted 1/12/2016 5:23 AM (GMT 0)
Glad to hear from you. Loma Linda sounds like a good plan.

Keep us updated on your progress.

and ask all the questions you want, we're here most days,
Andrew
Posted 1/13/2016 8:33 AM (GMT 0)
Hi, wife of Joe. It sounds like your husband received the rush treatment. One recommendation.... take a note pad with any questions you may have. Plus, you can also take notes. You are your husband's advocate. Do all the research necessary and understand the different treatments available. Good luck and please let us know how things are going. People here really do care!
Posted 1/13/2016 2:04 PM (GMT 0)
You are doing a great job for your husband. Keep fighting.

Your actions are spot on.

Keep us posted.
Posted 1/13/2016 5:40 PM (GMT 0)
You have started a journey where you have to advocate for the best care.

Don't hesitate to change docs, don't hesitate to ask questions here, don't hesitate to get records. Always get a copy of all reports.

read the sticky www.healingwell.com/community/default.aspx?f=35&m=2652250

Getting a second opinion on the pathology report from Epstein or Bostwick is pretty much a requirement IMO. Updgrade or downgrade can be cause for different treatment path.

Do hang in there. While you don't want to waste time, you want to make sure you research and get enough input to make sure you are taking the best path and you have time for that.
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