Living with stage IV

Ed

I think you have made a wise decision.

Let us know if you have any questions on the surgery.
1. Make sure your surgeon does the nerve sparing surgery when removing the prostate. If not, get another surgeon.
2. After surgery walk at least 3 times a day up and down the halls. You may not feel like it but it is VERY important. Have someone there that can make you walk when you don't want to. Trust me!
3. Read posts here about the surgery and recovery.
4. You will become impatient with regaining continence and your recovery in general but that's ok. Impatience can be a motivator.
5. Do your kegels (ask your uro) before the surgery to strengthen your pelvic floor muscle. It will make learning to adjust to your neobladder happen faster.
6. It will be a while before normal erections happen so you may want to stop reading now and find something a bit more fun to do.
7. Are you still reading?

Let us know when you are scheduled. Best of luck!

Mike

Ed:

Congratulations on approaching the second opinion with an open mind and heart. I am so glad you are comfortable with the surgical team - having full confidence in them is an important part of the battle. Now that you have made your difficult decision, I hope you are able to completely come to terms with it before your surgery.

We will all be here for you. Clearly you can do this. Your new normal won't be exactly the same as today's normal, but it will be closer than you think.

Hi Leigh,
Thanks for responding and as well to the others too that have responded.
It seems odd that I am about to write to people that I do not know. I mentioned this site to my sweetheart Mary-Jo and that I'd finally posted and as well been responded to..she smiled and I could tell that it made her happy too. I am already quite appreciative for what I have read and learned as I've snooped through a lot of the various topics and stories. Names and faces like Mike..Pat..Melody.."The Web"..Rocky..George..Lori just to mention a few..have all touched me. I would not have known near as much or been as prepared for my 2nd opinion had it not for you lovely people.

Mary-Jo and I attended my appointment on thursday as planned. This was my first time ever walking in to a cancer hospital...wow what an eye-opener! Many people appeared quite ill..it floored me. I felt my head temperature really rise as we walked through and among all of these men women and children. I sort of felt like I'd graduated to a whole new level.
We met my surgeon Dr Nam and a part of his team. Their professional approach soon had me feeling like I was in the arms of comfort. After a lengthy discussion extensively covering the basics, there remained two schools of thought..one was the possibility of another BCG treatment and this time adding interferon or a RC. As hard as all this stuff is I definitely feel a radical cystectomy has to be my choice. I'm shook up pretty good here but I don't feel like making an already bad situation terrifyingly worst. The diversion recommended for me...and as well my own preference is the neo bladder. The surgery date will be set for the end of november. Sorry folks I think that's all I can write at this moment..I just don't know what else to say.

Thanks for letting me piggyback ride along...Ed

Dear Ed,

Thank you for your message to us all here at the forum.

I am so glad that you have posted and we can now all welcome you to this site. I truley hope that this step will give you some inner peace with your concerns of the future.

This site certainly has helped me during my journey especially when I needed answers to my questions and to calm my fears.

Waiting for appointments is a very anxious time and I wish you all the very best tomorrow at Sunnybrook for your appointment.

Should your journey turn another corner remember we are here to offer our experiences to hopefully ease the way in the choices you make.

Wishing you all the very best for your second opinion.

Kind Regards

Leigh

Ed,

Best of luck with the 2nd opinion and your course of treatment. Glad you decided to post!

Let us know how it goes.

I agree with InTransition. Your side of things is much scarier than mine. I've had the surgery and although I've had some complications, I'm still glad I did and plan on being around a long, long time.

I wish you the best!
Mike

Ed:

I wish you all the best with your second opinion. I am a woman and a neobladder wasn't a good option for me, so I may not be your most important link, but I was diagnosed with BC this March, had chemo May through July, and had my bladder removed in August so I have been living with the shock of this diagnosis about the same time you have.

What I want you to know is the part you are now going through was the most difficult for me. Once you know what you have to do, especially if you have a positive outlook with lots to live for, you just put your head down and do it. RC is a tough break in life, but the reality isn't as bad as it seems when you are first learning about it.

Anyway, good luck! I had a good response from this forum filled with lovely, supportive people by starting a new thread introducing myself as you did here with Leigh. I hope you write a followup with your plan of attack.

Hugs!