Bummer...

Hello Holly,

What an experience you have had! I am just constantly amazed at all the individual battles that each one has to fight and do so with so much grace and dignity. I will think of all of this in the days ahead.

I am concerned with timing as well. At the moment I am leaning to the Indiana pouch although my doctor is very pro neo-bladder. I just know me and have thought what I can best live with. A big part is the self-catherizing. It seems to be almost a given that with a neo this is necessary - with a pouch I will at least be able to access it. But its so very confusing. As you said - one learns to adapt.

I have talked to Patricia - she is great! She has mentioned several doctors - some would be geographically challenging. But will see. Scheduled to talk with my doc on Friday.

Thanks so much. Best, Gracie

Hi Gracie,

Unfortunately I can relate to having had difficulty getting diagnosed also. It is not easy to getting the dx under any circumstances though. Atleast now you are closer to treatment.

Personally, I think it is wise to move forward to RC rather than play games with a "hide & seek" situation like this. I was 42 when I had RC Neobladder and it was tough. Recovery from the cancer, the surgery and in my case chemo, takes longer than one would think. In the past few weeks I finally feel most like myself since this all started back in Oct 2006. We will overcome what we must to survive.

Now with the choices in diversions....almost everyone eventually becomes ok with the diversion they have. Sometimes our first choice is not possible due to surgical complications, health conditions, or where the cancer is in the bladder. I guess I am saying that making a choice doesn't nessessarily make it so.

You asked about di vinci robotics....Mine was done with divinci at Mayos in Minnesota. My surgery was 3.5 hours long and they built the neo and took out 35 nodes. All said surgery went well but my cancer was thru the wall at RC despite the 2 turbs done in the 6 weeks prior. My point, please aggressively seek a great surgeon and get it over with. Time can matter.

My choice was the neo - actually - the surgeon insisted he could be me a neo and that I shouldn't need to self cath. Well,after the rc I had chemo - poor continence from that I am sure as my continence dramatically improved at the end of chemo. Then I started being a tad hypercontinent...needing to selfcath 1-3 times a day for residuals.
I had leaned heavily toward the indiana pouch. I much preffered the idea of being able to see where to cath. If I could get a "do over" I might have insisted on the pouch. Again, we adjust it seems

As far as Drs - Patricia is the chick who knows who is at the top of the lists wherever you may be She has excellent guidance here.

Again, I am sorry you are going thru this, but here there is help and support to get thru it - just like we did If I can be of any help - feel free to PM me too.
God Bless, Holly

wish I could help, but you will be able to get through this. you will,people at this site will help you.good luck

Gracie...you will get through all of this....Thank heavens they found the sneaky lesion hiding at the base of the ureter. You are in a great place in California with a terrific surgeon in Dr. John Stein who probably has done more women than anyone at USC/Norris.
You've got my number and we shall talk more about options.
Pat

Well the last few weeks have been interesting in terms of my journey. Looks like I am facing the next big decision. Surgery.

The last year has been wonderful. All 'all clears' on the cysto and FISH. The last time my cysto pathology came back negative and my FISH came back negative as well. The doc noticed a lesion at the base of my ureter. After a MRI, it was noted that this lesion was restricting my flow of urine from the kidney. The doctor removed it and it was malignant and had gone into the wall of the bladder. The reason why the cysto and FISH were negative is that it lay under the lining of the bladder. What a roller coaster ride this has been and all of you out there know exactly what I'm talking about - the sweating out of test results each time. Then when there is good news its just not good enough!

The doctor mentioned radiation/chemo as a consideration but both of us seem to feel it is putting off the inevitable. So now the decision. Being a woman has its own unique set of issues. I would like to ask if anyone has some good advice for me.

Which alternative may be better from your own experience - an Indiana pouch or neobladder?

Has anyone heard of the davinci robot used in surgery?

Does anyone know a doctor who may have treated more women?

How can I prepare for all of this? I sometimes feel like I don't know if I can do it. Pretty depressing stuff. How am I going to get through this?
Best,
Gracie