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I'm at the very beginning and am confused

14 years 1 week ago #1696 by Mike
Hi,

it is over a month - anyone know how RugRat 1956 - ElaineF felt after her surgery?

I do hope all was well for her as she does seem to have gone through the medical mill for her age and deserves some luck.

I wonder if people know how important hearing of how well ops & treatment went is for those of us here who can provide help, hand holding, experience and sometimes advice.

If you announce an op or treatment do come back and tell us how well it went - it is a huge boost to others who may recently have been diagnosed.

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14 years 1 month ago #1303 by rolsen64
Hi Elaine,
Good to hear you are going to a urologist who has experience with bladder cancer. I hope all goes well and uneventful with your procedure this week. Please let us know the results. Linda Weyand who does an amazing job of helping managing Webcafe was treated by Dr. Koch at Indiana Univ Hosp, Indianapolis, and she gives him an excellent report. You can email her at This email address is being protected from spambots. You need JavaScript enabled to view it.. You can email me at This email address is being protected from spambots. You need JavaScript enabled to view it..
Best,
Roni

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14 years 1 month ago #1302 by rugrat1956
Hi. I am hoping to know more about this all after surgery on monday. I have been reading but until I found this web site have been pretty confused. The info here has helped straighten things out. I kind of know what I am up against and now know why my doctor is so somber about this. I plan to read Tales from the Trenches as soon as I can.

I am in a little town an hour and a half from Indianapolis, IN. I have to go there for the urologist and treatments. I will be fifty in October. I have no thyroid and had a partial hysterectomy several years ago. I am on medicare alone because of sever bipolar... that seems to have improved greatly since I have been sick in May. My doctor is affiliated with a very good hospital in Indy and I have heard good things about him. He just doesn't want to say much until the path comes back.

Your general info is what led me to him. When I read that I realized I had to find someone outside of our little town and I took it to my gp and showed him and said that I am going to Indy. He agreed. Now I hear horror stories about people who decided to get treated locally. You are right... one needs to get to someone with much experience. I know I am in good hands but I am still scared. My dad had bladder cancer too but I had no idea it was caused by smoking. Thank you so much. elaine

elaine f.
dob- 1956
female- Indiana, USA
caucasian
smoked cigarettes- 1975-?
5cm-noninvasive- low grade- papillary
TURB- Sept 11,2006

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14 years 1 month ago #1300 by rolsen64
You are wise to try to learn as much as possible about bladder cancer and treatment options. You will find Webcafe has excellent information and a good, knowledgeable support group. Check Tales From the Trenches (Ben Olsen is my husband).
Where are you? Age and/or any other significant health problems? Insurance? Since you have other issues that need attention as well, is it possible for you to get a second opinion from a comprehensive cancer center?

General info:
Approximately 54,000 new cases of bladder cancer will be diagnosed this year, 14,000 will require radical cystectomy (RC) and urinary diversion. Bladder cancer is not a death sentence. When diagnosed early and treated appropriately, the long-term prognosis for bladder cancer patients is very good. It is imperative to learn as much as possible about the disease and treatment options. The p53 & P21gene tests, developed at the USC/Kenneth Norris Comprehensive Cancer Center, Los Angeles, are used to evaluate tumors to help determine likelihood of tumor recurrence and treatment options (they are available at USC/Norris and a few other places). Also, Matritech's NMP22 test, FISH and BTA Marker tests are used for tumor evaluation. Accurate diagnosis and treatment are critical at all stages.

It is important to find a urological surgeon and a pathologist who have both the skill and a LOT of experience to determine the most accurate diagnosis and best treatment. Since most urologists & pathologists see very few cases of bladder cancer, one usually has to go to one of the comprehensive cancer centers for the best treatment. In many cases, patients can be successfully treated with careful monitoring - a minimum of cystoscopy every 3 months and annual IVP, CT scan, TUR. Some may also require BCG and/or one or more of the chemo programs. Others will require radical cystectomy, a major surgical procedure. A small number of patients who meet strict criteria may qualify for bladder-sparing treatment. This involves a combination of chemo and radiation. Patients who qualify for bladder-sparing treatment should be aware they may be limited to an ileal conduit with an external bag (instead of one of the continent internal pouches) if radical cystectomy is ultimately needed. In all cases, the skill and experience of the surgeon are critical and should not be underestimated. Typically, if the cancer is invasive AND confined to the bladder, RC and a meticulous lymph node dissection can be completed BEFORE chemo is considered. In many cases chemo is not necessary. There are a few options for chemo, which are usually determined by the patient's diagnosis and/or the doctor's preference. Radiation therapy should be avoided if possible, because it can cause irreversible scarring and damage the entire intestinal area.

For cases requiring bladder removal, the standard ileal loop urinary diversion and a variety of internal continent pouches are available. The ileal loop has an abdominal stoma and requires an external collection bag. It also requires "hooking up" to a night drain when lying down for more than a few hours. Some of the internal continent pouches have an abdominal stoma, and they are drained through a catheter 4 - 7 times/day (easy, painless and simple). They are easy to manage and do not require an external bag. In many cases, the internal pouch can be reconnected to the urethra to allow for normal urination. This procedure frequently requires a period of training before continence is achieved, and some people never achieve 100% continence. Others end up hypercontinent and have to catheterize through the urethra to empty their neobladders. In some cases, nerve-sparing surgery can be done to help maintain potency for males. If not, there are a few good alternatives to impotence. Email for info.

Bladder cancer is a nasty, insidious and frightening disease. Although many people are successfully treated with regular cysto checkups, TUR, BCG, BCG and Interferon and/or other chemo drugs, and/or RC, far too many are not as fortunate. They later find their bladder cancer has spread out of the bladder (metastasized). Some of these metastases may have been avoided with accurate pathological staging and grading of tumors. Even patients who undergo successful RC need to have regular checkups.

The three most common types of bladder cancer may be found separately or in combination. All three can develop from "superficial" to deeply "invasive" tumors. Superficial means on or near the surface - it does NOT mean trivial or insignificant. Deeper tumors are called invasive. Papillary tumors stick out into the bladder like a mushroom and can also send shoots down into (and through) the bladder lining. Sessile tumors are small surface craters and also send roots down into (and through) the bladder lining. Cancer in situ, CIS, is microscopic spots on the bladder lining. Unfortunately, staging and grading tumors is not an exact procedure. It is often difficult to obtain the complete outer edges of tumor tissue, including areas of CIS. If the O - D staging method is used, O & A are superficial, and B, C, D are invasive. Grading is determined by how much the cell structure differs from a normal cell. If the I - IV staging method is used, III & IV are the most threatening and require aggressive treatment.

Sessile tumors have no fibrovascular stalks and typically look like mini volcanoes or craters. Young sessile tumors may not be visible through a cystoscope, and those that are visible may appear as simple little surface spots or CIS. Once again, looks are deceiving. Frequently hidden from view, finger-like projections from the broad based sessile tumor spread laterally through the submucosa as well as down into the muscle and fat layers of the bladder, well hidden underneath normal tissue. These solid tumors are called “hot” with good reason - they appear deceptively small and contained while they actually spread rapidly underneath the surface. To date the most effective way to eliminate these invasive cancers is to remove the bladder.

The occurrence of any type of bladder cancer indicates the bladder tissue is unstable and highly susceptible to malignant growth. Transurethral (TUR) surgery and pathological staging and grading can neither guarantee the cancer has been cured nor that tumor will not recur. The hard truth of the matter is that bladder tumors have a 50 - 70% recurrence rate with no set pattern or predictability, and recurrence may be a more invasive type of cancer. Accurate pathological diagnosis and appropriate treatment are critical in all phases of bladder cancer treatment.

Check your library for a copy of Dr. Mark Schoenberg’s excellent book, “A Guide to Living With Bladder Cancer” which has good information on everything, including chemo. It is also available at most bookstores and at Amazon.com, Barnes&Noble, etc. – about $16.00 US.

Also, happy to answer questions e-mail or phone.
Best,
Roni
This email address is being protected from spambots. You need JavaScript enabled to view it.
(I am not a medical professional - just a graduate of "trial by fire" as my husband successfully battled bladder cancer 20+ years ago and a LOT of research).

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14 years 1 month ago #1299 by rugrat1956
Also forgot to say that when I first got sick in May they found I had Stage 1 kidney failure. I don't know exactly what that is and if it has anything to do with bladder cancer. Does anyone know about kidney failure? Can anything be done to improve it and what causes it? Also have complex and septated cysts on one ovary that we haven't even looked at yet. My urologist has a back ground in gynocology so he is planning to address that problem also but he wants to get the bladder cancer under control first. I feel like my whole system is falling apart and I'm getting depressed. I've never in my life been sick like this. Thank you, elaine

elaine f.
dob- 1956
female- Indiana, USA
caucasian
smoked cigarettes- 1975-?
5cm-noninvasive- low grade- papillary
TURB- Sept 11,2006

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14 years 1 month ago #1298 by rugrat1956
Thank you for the reply. has anyone every gotten this terrible nausea with a bladder tumor? Why would the ultra sound show sessile then the cystoscope show a stalk on it? Sessile doesn't have a stalk does it? Is there any significance to the "solid" look? I'm glad to know the TURB isn't too bad. I was worried about that. This email address is being protected from spambots. You need JavaScript enabled to view it. Thank you, elaine

elaine f.
dob- 1956
female- Indiana, USA
caucasian
smoked cigarettes- 1975-?
5cm-noninvasive- low grade- papillary
TURB- Sept 11,2006

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