R.Olsen's advice for newly diagnosed

17 years 2 months ago #1423 by wendy
I've copied a post from Roni Olsen and saved it here for the benefit of newcomers.
Roni's book, 'BLADDER CANCER, UROSTOMY AND IMPOTENCE' is online free, in pdf format, here:

Re: To everyone
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? Any other significant health problems? Insurance? Second opinion?

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.

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.

Thanks for keeping our merchandise moving!!! Also, happy to answer questions e-mail or phone.
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).
Back to top

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne