New to the board question on Cystectomy

[ed_b]

Ray, I felt exactly like you do. I asked my doc for meds to calm me down prior to surgery, and they helped. Then I set some goals for post surgery. Surgery was 8/28, and I played a (poor) round of golf on 9/29. Seems like everyday I get a little stronger and can do a little more than the day before. My thoughts and prayers are with you during this difficult time, but, as you read on this site, there are MANY success stories. You too can be one of these stories. Stay positive, there are many of us thinking of you.

[Ray_O]

Thanks Tim
Best of Luck to you as well…
Let’s hope we both post success stories after it’s over
Ray

[timb]

Ray
Im in 2 days before you for same op. best of luck and hope all goes well with you.

tim

[clur]

Hi
I can so relate to what your feeling I had surgery on 23/8 and just wanted to add my support.The anticipation is worse than the reality.If you have any questions please feel free to PM me.I wish you lots of luck.
Clur

[wendy]

Hi Roy,

I”m glad to hear you feel better, and tell you you’re lucky to get an appt with Dr. Schoeberg on Tuesday. He’s been bridging the gap between doctor and patient for years, also supports this site as an advisor. I think you will find it a reassuring experience, I know many people who are very satisfied ‘customers’ and the urology department is tops.

That’s good to hear.
Wendy

[Ray_O]

Hi Mike
Thanks for the endorsement

I’m from Bear, Delaware …about an hour or so north of Baltimore
Ray

[Mikmckna]

Ray,

Best thing you can do… getting a second. Since your going to John Hopkins, I am just wondering what area you are from. I too went to JH for a 2nd. I’m in the DC metro area (Prince William County).

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Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

[rentanag]

Roy,

Your appointment on Tuesday is with the doctor who wrote the book I often recommend to others as a good source of information about bladder cancer and it’s treatments (it’s also found as suggested reading on the WebCafe as well), it’s titled THE GUIDE TO LIVING WITH BLADDER CANCER by Dr. Mark P. Schoenberg.  That’s really terrific and Johns Hopkins is one of the top places for getting the best care for cancer and urology, that’s from a list compiled by US News and World Report (I think that’s the magazine, it is also referenced on the WebCafe if I’m wrong).
I know you’ll be in the care of some of the best health care professionals for bladder cancer, all that said still doesn’t mean you’ll necessarily click with them as providers.  But give yourself and them a chance if there is any sort of personality problem, as emotions are high in this sort of situation (newly diagnosed/new doctor etc).
Best of luck, and keep in touch.

Lou Graham

[Ray_O]

Just want to say thanks to Lou, Zachary, Wendy, and Mike. The diagrams, the words of explaination, and the words of support mean so much to me at this time I’m hoping that my stress level will be reduced in the coming days. This site has been a blessing to me. I’m starting to find hope instead of despair.
I have a appointment with Dr Mark Shoenberg on Tuesday at John Hopkins for a second opinion.
Thanks again
Ray

[Mikmckna]

Ray,
No doubt you are in the midst of one of the most difficult times. I am 5 1/2 weeks post-op from a cysectomy with neo-bladder. I remember the weeks before the surgery were agonizing. A lot of why me and will I ever be the same. Ray, I just want to say that my surgery went well. I am moving a little slower than before and getting used to life with a neo-bladder.

I look at it now as a series of small transitions. The most memorable for me still was my first shower. Mine did not come until the 3rd day post-op. I can still feel the wonderful water and good clean feel I came out with. Funny how these things make you appreciate the little things.

Anyway, I ramble on… I see others have answered your primary question about removal of the bladder muscle but remember if you have any question AT ALL… there are plenty who will offer their experience.

Best Wishes… keep us informed!

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Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

[zachary]

I didn’t notice that about the picture–I followed every step of your instructions and just copied the URL, so my guess is that the medline just links to the image on the urologyhealth site.

It looks like the exact same picture because it is! :-)

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“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

[rentanag]

That’s really funny because it’s the exact same drawing, just shown through a different site.

[zachary]

Lou did all the legwork, but this is an easier link for you, Ray:

http://www.urologyhealth.org/picturepopup.cfm?id=43

It’s quite an informative illustration (Thanks, Lou!). I was T3a, but I really just had a vague idea of what that actually looked like.

---

“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

[wendy]

Hi,

Lou is right, the bladder is partly made up of muscle and that will all go with a cystectomy.

Good luck and keep asking until you’re able to sleep….
Wendy

[rentanag]

Ray,

To view one of the drawings I mentioned previously you can find it by entering MEDLINE PLUS into your search engine, click on that link and once it opens click on HEALTH TOPICS.  The next link is CANCERS, and the next is BLADDER CANCER.  Once that page opens scroll down the page until you come to Anatomy / Physiology, where you will find the 2nd item listed is Anatomical drawings.  There are 7 drawings on this page and the one I’ve mentioned is the 7th, “Bladder Cancer”.  I hope this helps you to visualize what’s going on (although obviously our tumors don’t all look like the drawings here) in your bladder.

Lou Graham