What a long week and a half this has been. My husband was diagnosed something like 14 days ago and admitted last Friday for bleeding from a kidney stone procedure. He's been in and out of critical ever since. Yesterday, he took his first walk and ate semi solid food (whipped sweet potatoes and eggs). His heart rate is still way too high, but electrolytes are getting stabilized after wild and frequent swings so doctor started Casodex, with the thought that Lupron would follow, hopefully in the office by end of week.
I posted earlier about Lupron vs. alternatives and I raised some of those questions with him. He scoffed and said "it's been shown there is no real difference between these drugs."
I am struggling to figure out how to move forward. Someone kindly said "assemble a team", but trying to figure out who should be on that team and what's important in making decisions. I have friends sending me links for the bests urological specialists in Chicago, but we live well out in the suburbs, so getting him downtown for appointments is tough and costly. So, since you guys are always so helpful:
- What specialties should be on a care team?
- Which person actually makes the call about treatment?
- Does it matter if the primary urologist knows the oncologist?
- How does a second opinion work? Do you tell the first doctor? If they disagree and you like the second guy, do you just switch over?
- How do you weigh convenience vs. perceived expertise?
What else would you have wanted to know when starting? His cancer is aggressive and metastatic, so we don't want to just sit back and do standard treatment if there's a chance of something better.
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Do you live in the south suburbs or north suburbs? We are in the process of assembling our team as well as adjunctive treatment will likely be needed for my husband. University of Chicago has a cancer facility in Orland Park and in New Lenox. Thus far we have been happy with the oncologist we met with and the radiologist appointment is coming soon on 4/22. I imagine if ever there is a need, we will be able to see necessary specialist in the Hyde Park campus as well.
We live north. We're currently at Northshore, but wondering about switching over to Northwestern/Feinberg. It seems like this is where the world leaders are from the field. I'm sure U Chicago is not a slouch though - - wonderful facility.
I’m at Northshore but currently in a trial at Northwestern with Dr Morgans who is an oncologist there. Get opinions from both medical centers and make a decision which one to stay with. Northwestern is highly ranked but Northshore also has a lot of depth.
I agree about Dr. Alicia Morgans. Look her up on the net and watch some of her wonderful presentations. She is well liked by her patients. I wish we lived near her.
If traveling is difficult when you live in the Chicago area, it will be more difficult trying to get to Mayo or some of the other places recommended.
In most cases the initial diagnosis starts out with a local urologist and then moves to a general oncologist that follows standard medical protocol for advanced disease. 2 weeks of casodex followed by lupron is standard and what most here have done. Now it's really time to get busy and do your homework. Everyone with this dreaded disease will differ in response and the course it will run. Read, read and learn as much as you can. I can't stress enough the importance of walking in a doctor's office and being so well informed you can question them. Being your own advocate is very important.
Find a specialist in a center of excellence such as Mayo, MD Anderson and MSK. This will be the only place that offers anything outside standard of care options. If it means travel so be it. Your local oncologist should welcome second and third opinions and will give you a referral for insurance coverage. In my own case I live in NY state and have a Urologist at The Mayo in MN specializing in prostate cancer that did my surgery and I do follow ups once a year. It's worth a plane ticket to me. If anything goes off track that is where I'll be. I see my local Oncologist for routine follow ups or basically whatever I feel they can handle. YOU are as much a part in the decision making and need to stay ahead of things to the best of your ability.
Most professionals are okay with discussing treatment options if questions arise. In my case my specialist has offered to consult with local team. Do not let convenience get in your way of seeing a specialist. Your first shot at treatment is going to be your best. Early aggressive multimodal approach now is showing the best outcomes. Now is not the time to be convenient, it's time to roll up the sleeves and dig in. There will be high's and low's but stay focused. There is a wealth of knowledge here for information going forward. The men and women here will help to the best of their ability.
My urologist (experienced if not a specialist in PCa) makes the calls on treatment.
He directs me to those oncologists within the medical facility (chemo and radiation) who he knows and trusts, who think a lot like him, and he checks on their doses and treatments to be sure they are in accordance with his overall treatment plan.
For many, the urologist will be the key person.
I went through two urologists before being referred to the one I am currently with.
He took much greater interest in my welfare - willing to make a concerted effort to try every possible means to bring me into some kind of remission.
There are some urologists who look at Stage 4 patients as nothing more than candidates for palliative care - i.e., if things get worse, if you start having pain, we can get you onto radiation or chemo to help alleviate things. They have already given up on you, in other words. They will talk in terms of how long they think you will live.
If you are willing to fight cancer with all you have got, you are going to need a care team who share the same fighting spirit.
Hope that helps.
Find the best doc at a Cancer Center of Excellence near to you. We drive 4 hours each way to meet with our MO and it is well worth it to us even when another Center of Excellence is two hours closer.
Yes, she and Ted Schaeffer are the two names that keep coming up. Would they replace our current doctor? Are they medical oncologists or urologists? I just don't get how it all fits together.
Won't help if you have a nervous breakdown. Relax and hopefully enjoy your Easter weekend. Hopefully hubby will be home. You have a lot of time to figure these things out. Take a day off. You deserve it. Enjoy. By the way: I've had a team of one for two years. She will pass me on when the time comes.
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