Newbie here

Just read island time's post titled "SE's of surgery..robbing me of my life", then I read this thread.

I'm an advocate for AS, and even at the young age of 42, I would at the very least seriously consider it for as long as I possibly could. I am in my 3rd year of AS, and I know my stats are slightly different, and I'm a bit older, but I am so glad I chose AS.

I'm a big proponent of shared decision making. Certainly, a shared decision between a patient and his doctor. I met with 6 doctors before deciding on the one I wanted. That doctor asked me what I was looking for in a therapy. He refused, even when pressed, to give me a recommendation. He just kept asking me, "what further information can I help you with that will help you make your decision." He handled me very well. But that's me. A lot of guys are looking for a more paternalistic relationship with their doctor - an authoritative guy who says, "do it my way - all other ways are wrong."

I also believe in sharing the decision with one's spouse. You both have to live with the outcome. I've seen marriages fall apart, and some grow closer together over this. Sharing can also mean sharing the duties of learning about it - trust me, there is a LOT to know, and it can be overwhelming for one person. I think that when a couple works together on painful stuff like this, it's an opportunity to grow closer. But men, even men who are mostly driven by their emotions, are notoriously bad at sharing their feelings, and letting someone in.

BTW - I don't know if it will help given the current state of things, but if you want to read an advance copy of the article I wrote for The New Prostate Cancer InfoLink, I'd be happy to email it to you. Just shoot me an email (click on my name).

Thank you for the article Allen. I have printed it out and left it for my husband to find. Hopefully it will make him stop and think before he rushes into surgery and to carefully consider all of his treatment options. Right now his surgery is scheduled for August 24th. I should have a copy of his path report from the January bx and the most recent bx within the next couple of days. Depending on what it says I may be able to get him to consider having his slides sent to Epstein for a second opinion. I will update when I know more. Thank you again for all of your input and opinions!

Cyndiane said...
his uncle had a gleason 6 and a RP with clear margins and nodes but still ended up with bone mets less than 2 years later.)

....I'm sure this must be weighing terribly on his mind.

There has been some sort of miscommunication about the true nature of his uncles disease status.

It may or may not be worth noting but, with a true Gleason 6 post operative pathology report of only Gleason 6...bone mets in 2 years is both a physical and medical impossibility. This may be something you might want to try to get more information about. Something's missing. That missing link may help ease his mind.

Cyndiane said...
he would be getting bx quite often and he was definitely not fond of that idea. The first bx for him he said was the post traumatic thing he had ever experienced. The second one they drugged him up so it wasn't near as bad. His reasoning for choosing surgery is that he can just get it done and over with and he wont feel like he has an axe hanging over his head all the time and also having blood drawn and tested isn't nearly as traumatic (or costly) as a TRUS w/bx for him.

I was this way as well. (And still am) ANYTHING to do with pain...medical proceedures really of any kind, just absolutely throws my psyche into a whole other realm. Especially. ..pain "down there". It's just a whole nother ballgame. We're not hitting a thumb with a hammer here. This goes to the heart of my most sensitive, private, and protected part of a man's anatomy. Just the thought of this stuff can put me in bed for a week.

If he is this way...he may not want you knowing just how badly it affects him. I was put to sleep for my one and only biopsy. One other time...I had a root canal And afterwards as I was walking to my car, I burst into tears. Not from the pain, but from the "trauma" of how deeply I felt my body had been violated. It (the root canal) had gone to a place inside of me that had never been reached before. When I'm scoped at my uro's office...i have similar feelings. (Ones I will either get used to or they will change...one or the other...but that's another story). What I'm saying is that I can relate if he is truly this sensitive to violations of himself. Surgery, I will now openly admit, seemed an easier course for me than radiation because, I would be put to sleep. Not so with the placement of fiducials for radiation treatments. People don't understand this. But there may just be a bit more of it going around than we know.

Lastly, I would just caution that if surgery is what he decides on, I emphatically suggest what Tony Crispino suggested earlier in this thread. Find a high volume surgical center if at all possible. I don't know where you all are located. But...before ny operation, I read in here, quote, "Do not let any doctor tell you that a prostatectomy has become a normal urological peoceedure". Unquote. Five days after reading this I found myself in my GP's office listening to him call this operation "a normal urological proceedure". It is not. This is one of the most difficult and challenging cancer operations in medicine. (It's just that there's alot of them. That doesn't make them any less challenging).

Ultimately, he's the one whose going to have to make this call. But...you are definitely doing the right thing by helping him to see things in a more rational, and less emotional, light. Your motive for doing so is simple. You love him or you would not be here.

It's difficult going again a doctor's first recommendation. They're the "experts". It's just that some are more expert than others.

Good luck.

Oh, and they even included a photomicrograph of the slide containing the malignant tissue from the transition zone

Cyndianne:

Surgery is a very reasonable choice, given your husband's psyche and the number of cores positive.

We are all different, with different emotions.
You can only do so much. Ultimately, it is HIS CHOICE (despite the fact that it is a joint decision -- it is really HIS CHOICE). Also, it is not like he is being unreasonable. There is no BEST choice here. A good argument can be made for either AS, surgery, or radiation. You both have to look at the ramifications of each choice, but as I said, when it comes down to it, he has to choose.

Good luck.

Oh, let me second the comment about surgery: you need to try and find an experienced, good surgeon.

The folks at HW might be able to offer suggestions when/if you go that route.

I would be hesitant in just having the local everyday urologist doing it.

Mel

I am actually in the Midwest. Right in the middle of the country. The urologist that his surgery is scheduled for does all of the robotic prostatectomies for the urology practice. He specializes in robotic urologic surgeries and he also did my father in laws and my husbands uncles surgeries. I will ask how many he has done though. The only notable cancer center I can think of around here is KU. I was treated there for melanoma years ago and they were pretty good(I'm still here and cancer free!) but every time I walked through the door I was charged a $300 facilities fee on top of my treatment charges. Kinda left us with a sour taste. Anyways, does anyone have any other suggestions for the KC area?

Post Edited (Cyndiane) : 7/8/2016 11:30:18 AM (GMT-6)

Take you time and be comfortable with your decision. There are no do-overs and it can be a life changer. It's shock when you get the "news", but read all you can, talk to a urologist and a radiologist specialist, or two of each if you can. Consider ALL your options openmindexly and carefully.

You can read what I went through by clicking on the link in my signature.

Take your time. Good luck.