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@jeffmarc, I appreciate your conviction and enthusiasm when sharing experience and even advice. Keep in mind the golden rule on Mayo Clinic Connect and don't tell members what the "should" or "must" do.
- Community Guidelines: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
@newtothegroup, I'd like to add my welcome. You've gotten a lot of great advice from many members. As you've already discovered, making decisions in the prostate cancer world is a lot. It's a steep learning curve. It can help to hear from others when preparing for appointments with your medical team and to know what questions to ask. Ultimately the journey is yours and may have variations, depending not only on your cancer, but your preferences.
As Jeffmarc and others have suggested, you might wish to consider a second opinion. If your local hospital has connection with MDAnderson, you might wish to go to the expert team at MDAnderson for an evaluation and treatment plan and the treatment could be administered locally. Or is the cancer center with associations to MDAnderson where you are going for a second opinion?
Replies to "@jeffmarc, I appreciate your conviction and enthusiasm when sharing experience and even advice. Keep in mind..."
Hi Colleen, I really appreciate your unrestrictive moderation of this board. You allow us a pretty wide berth and let our discussions unfold in a very orderly but lively way. As men - manly men before our ADT😆- we tend to “tell”others what to do as one friend to another. We don’t mean to sound demanding or pushy but to offer a path toward the best possible outcome. This is how guys talk - what the ladies would call “mansplaining”. We are not aiming to imply lack of understanding or ignorance on the part of the person asking the question! Rather, we are placing our hand on their shoulder and saying “Look bro, this is what you gotta do now…”
Jeffmarc is truly an incredible source of information for us - not only for his ongoing involvement in other prostate cancer discussions but also for his firsthand experience with this disease over many years.
As I was reading the comments from everyone on this topic I kept asking myself, “Why isn’t anyone’s head exploding over this like mine is? Shouldn’t someone tell newtothegroup that he has been horribly mismanaged?! That his doctor has been asleep at the wheel?”
That is certainly only my opinion on the matter and as a layman I can only speculate on how a man who has been going for checkups all this time suddenly finds himself with metastatic disease.
Did his doctor recommend biopsy ages ago and he refused? Was the patient non compliant in other areas? Was the doctor so steeped in his clinical research that he didn’t see what was going on right under his nose?? Is metastatic disease the only thing he focuses on and everything else is minor? A LOT of unanswered questions here but the real truth is always elusive!
So, though you may chide me next for what I have said here, I simply wanted to point out that sometimes SOMEBODY has to yell “Fire!” even at the expense of decorum and good manners; I think Jeff has given newtothegroup a helpful shove in the right direction and hopefully his future care will be in the hands of those more observant than his previous doctor.
Thank you again Colleen for all you do and making this forum such a valuable part of our treatment.
Phil
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Do you mean that I should contact the MD Anderson in Houston ? I contacted the local hospital right now that says it is working with MD Anderson. Houston is about four hours drive for me so not very bad at all if that is a better option.
Thanks all for the great information. Wish I came on here sooner...