New here

jbart62 -- Welcome to Healing Well. Sorry for your husband’s diagnosis, but I’m glad you found this forum. I’ve gotten a lot of information and encouragement from the people here. They are very knowledgeable and caring. Getting that diagnosis is really tough; I understand completely where you both are right now. Initially you are in shock and feel despair, but take a deep breath and be there for each other. Take time to educate yourselves. Don’t rush into making a treatment decision without considering all the options. Make informed decisions. There are no do-overs. An excellent book to start with is “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer.”

I would encourage you to get a second and maybe a third opinion. Consider talking with a radiation oncologist and a medical oncologist. Consider going to a major cancer center; many offer multi-discipline programs where you can schedule appointments with more than one specialist in one day. Travel if you need to.

In doing my research on PCa, what stood out to me as the most important factor in your outcome, is the amount of experience and skill of the doctor doing your procedure (whatever procedure you choose). I would also encourage you to get a second opinion on your biopsy slides. My slides got slightly upgraded, but I’ve also heard of the pathology results being downgraded. Johns Hopkins and Bostwick Labs are both highly regarded for this.

When you go for your consults, be sure to have a list of questions and take notes. You might also consider recording the conversation (with the doctor’s permission) as you can’t write down everything. I wish I had done this. Get copies of all PSA tests, lab work, bone scans … whatever you have done, get a copy and keep it in a folder.”

Best of luck to you both and keep us posted and don’t hesitate to ask questions here

Good luck on your journey -- Tigerfan

You will want to read the excellent sticky at the top that says "Newly diagnosed? Read this thread first." In it you will see a recommendation to get a second opinion on the Biopsy slides from Bostwick or Epstein and links for their websites. It's a very good idea - you don't want to mistakenly deal with the wrong disease grade.

His doctor will probably want him to have a bone scan, but with his low PSA, the odds are low that it's metastasized already. He will possibly also order an MRI or CT to see if anything has broken through the capsule or traveled up the seminal vesicles.

There are lots of good treatments, but you will have to meet with specialists in those treatments to learn about them.

- Allen

PDA-
That's a great suggestion. The doctors should really be working together on this. I know that there are certain triggers for MS relapse - will that include RP? RT? I know RT causes an immune response - will that affect the MS? Probably no one really knows and he will just have to be watched closely.

On the other hand, it has been suggested that Lupron, a mainstay of hormone therapy for high risk prostate cancer, may also be of benefit for MS.

Leuprolide Acetate, a GnRH Agonist, Improves Experimental Autoimmune Encephalomyelitis: A Possible Therapy for Multiple Sclerosis

- Allen

What tigerfan said.

IMO anyone with a Gleason score >=8 should have a medical team comprised of a urologist or two, a radiation oncologist and a medical oncologist with the latter calling the plays since the MO has no vested interest in surgery versus radiation.

However you still reserve the right to overcall what MO calls.

As many as logistically possible should be from national PCa practices and not all from the same practice to avoid any potential conflict of interest for example with internal bonuses for use of expensive equipment.

If he ends up on Lupron, include a cardiologist on the medical team since Lupron is tough on his cardio metrics.

If he then ends up on Xgeva or Zometa to prevent so called adverse skeletal events, make sure his dental work is up to date before he takes those meds, as tooth extractions can cause lock jaw like symptoms.

Welcome, and keep us posted on progress.

LupronJim

Thank you everyone for your replies. I greatly appreciate it. Husband is scheduled for MRI, CT and bone scan next week. We live in Colorado and we are attempting to get a second opinion at the Anshultz Cancer Center in Denver. I heard it is a top rated facility. It is going to be a long drive but well worth it. I am going to call his neurologist and let her know what is going on. I well let you know how things go.

jbart,

Sorry you need to be here, but glad you found us. This is a great place to get information and support.

The advice above is a good place to start. You may also find the links below in my signature to be helpful.

Let us know how we can help you.

-Gedman