What Living Looks Like

Posted by: mikemann in bladder cancer on Print PDF

While a member of our discussion group undergoing chemotherapy and following a cystectomy for bladder cancer, Lea Marek created an online cancer journal that featured photos contributed by fellow group members; her goal was to share pictures of her online friends, "...living and enjoying life, in spite of a cancer diagnosis." Lea's pictures have been preserved here at WebCafe, and we continue this project in memory of Lea Marek, 1968-2003.


This page is alphabetical on the first or nick name since this is often all we know from the list e-mails. If more than one person are involved, then it is by the one that tends to write the most often.

ALSO, please note that if the person's name is underlined then that means that their story is also on our "Tales from the Trenches" section and the name is linked to that story. If you click on the name/link then you will go to the stories pages where you can read the story they have posted.


 

Angela Winterbower with her husband and two sons.  Angela was diagnosed in April 2006 at age 32 with T1G3.  Radical cystectomy and neobladder June 2006.  CIS also found during RC. 


 

Barbara Norkus had her neo-bladder surgery on Sept.12, 2005

 bc-walk-may-2012.jpg

Left to right.Barb Norkus, Cindy Duffy, Burt Handler.
It was the BCAN Walk May 5, 2012 in Arlington Hgts, IL organized by Cindy Duffy's daughter, Amy.


Bill Butcher - Fun With Cancer! Me & supportive, loving family (L-R: Wife Carla, Me, Son Shawn, Daughter Jaime) in pre-op awaiting last TURB.  Have been clear for three years this month since last TURB in 2004 and have posted humorous (at least it amuses me) adventures with the Pee Pee Doc and Nurse Ratched in the caf in the past.  Mostly enjoy lurking and vicariously sharing triumphs with members!


Bill and Wilma Pullen, Bill had neobladder surgery Thanksgiving week 2003 at M. D. Anderson.


Billie Yandell and her painting "Cabbage Baggage." Billie was diagnosed with CIS in July 2006; and had a RC October 23, 2006 with ileal conduit. The painting was done during her recovery from the surgery.


Bob & Virginia Crilley. Bob received his neo-bladder (Studer type) on December 30, 2004


Bob Myers 6 months before RC. Age, at time of RC 68 RC, July 2005, Norris Cancer Center, Dr Stein. Can't recall the grading or staging but, whatever it was it was bad enough to do  RC ASAP. I service and sell Photo ID systems, from my home office. I spend my free time trying to learn to play the guitar (fingerstyle, blues).  So far I have become more of a collector than a player. (8) guitars to date and haven't learned one song yet.


Bob Wilson: Cystoprostectomy at Moffitt Cancer Center January 31st of 2005 with a neobladder/nerve sparing.


Brian Grace from the UK  and granddaughter Anna who lives in Boston USA. Brian was recently diagonised with a T2G3 and awaiting either a RC or radiotheraphy.


Carol Owens is recovering from RC done on May 2, 2006 after BCG treatments failed to contain her cancer. She is looking forward to returning to hiking, birding, kayaking and other forms of active living.



Cindy Thomas-Duffy, left front, with her mother and two daughters. Cindy was unsuccessfully treated with BCG and Interferon combination, had a complete RC and neobladder installed in 2005.


Cliff Dawe from a photo of the Tulsa Band in 1986 when he was 36. Cliff has CIS and is being treated with BCG and Inerferon after treatment with BCG alone failed. Cliff is one of our Canadian members


Crilly Butler at Stonehenge in 2005. Crilly is a four year survivor being treated with BCG and Interferon. Crilly is an excellent researcher in numerous areas and is a great information source for the list.


Chris Allison: Diagnosed March 2006 at age 35 with T1G3, treated with TURB and induction BCG, no BCG maintenance. Clean after 2 cystos.


Cynthia Kinsella, is a Realtor living in the beautiful Berkshire Mountains of Massachusetts. She firmly believes that as long as you can get up and put on your lipstick you are doing fine. She enjoys hiking, snorkeling, dancing, writing and her work with the Bladder Cancer Advocacy Network. 47 at the time of original dx 50 looked real good this year. T2 g3/3 CIS Aug.2004, Clinical Trial combined modalities-Chemo.& Radiation Oct-Dec 04, CIS Jan.2005, Systemic Chemo. March-May 05, Ta g3/3 Sept.2005, Oct.2005 - Jan 2006 BCG, T1 g3/3 multiple tumors, CIS March 2006, Radical Cystectomy- Umbilical Indiana pouch May 2006, Nov.2006 NED. Be sure to check out Cynthia's corner


Dan Martin, diagnosed July 2004 with T1G3 and CIS at age 50. After two TURBTs and multiple BCG sessions, had a neobladder installed August 2005.


Dolores Stokes, with her grand-son and his wife has just been recently diagnosed with BC.


Douglas P. Nace: Born 8/62, RC 5/05, nephrostomy tube 4/06, not quite dead yet.. 


Earnie Kramar and grandsons. Cystectomy and prostectomy with Neo-Bladder September 15 2005   Cat scan indicates 0 cancer.


Fred Stroop, AKA Deacon John, diagnosed with CIS in October 1998. Finishing 24 months of Gemcitabine installations, feeling fine and loving life.


Gary & Jolene Ratliff: Gary was dx 10/01, Stage T3BN+ (RC/neobladder).  Celebrated 5 years NED, 10/06.


George (of Texas) Holmes, playing an air guitar for his grand kids. BC discovered in 1997. Many tests, instillations, trial diagnostic meds done partly in Austin, Texas and the rest at MD Anderson, Houston, Texas. Had R.C. done in March of 2004 at MD Anderson Cancer Center. Cancer removed successfully and an Ileal Conduit with a stoma installed. I went from being a Couch Potato to being a Pouch Potato!


Gordon Chapman was dx with BC 11/03 and went through two treatments of BCG before having a neo-bladder "installed" on 9/9/04. Gordon is a retired accounting professor and lives with his wife Rose, a breast cancer survivor, in Spokane, Washington. They have learned to truly enjoy "those moments in between" life's trials and tribulations! His obvious passion is fly-fishing in the Great Northwest. BC has not changed that! He has been an ardent lurker in the blcwebcafe since February 2005


Jan Klingenberg with husband and twin daughters adopted from China in August of 2006, Alexandra and Sydney. Diagnosed in January 2004, 17 weeks of chemotherapy followed by radical cystectomy orthotopic neobladder in the form of a Studder Pouch at MD Anderson in Houston on July 6, 2004. Looking forward to my three-year anniversary as a NERD (No Evidence of Recurrent Disease!).


Jeanie and Gary Bowden: Gary was dx in Feb.. 2006; TURB April; T-2; RC not possible due to other health conditions; refused chemo and radiation. Currently Hospice care; taking herbal remedies and no visible signs of BLC or mets, although no tests have been done.  


Jeffery Redfern, 54, dx in 1999 with superficial bladder cancer. He has had four TRUBTs but no BCG or other treatment.


Jeff Stein, 49, and his wife, celebrating our 25th anniversary at home with family and friends. RC July 2003 at USC Norris, two years cancer free.


Jenny and Dan Billings, Nottingham, UK: Jenny was Dx with BC T1 G2 March 2005, aged 32.  Since then a total of 4 TUR BT's (the most recent for the first recurrence in Oct), plus Mitomycin and BCG.  She writes that also had chronic fatigue since the BCG, but despite this Jenny and long-time partner Dan managed to get married this summer! He has been an absolute rock and I am the luckiest woman in the world!!


Jim and Naomi Babb


Karen, the GreeneGoddess, Greene, is a clinical psychologist in NYC that also works in a state hospital. Dxed with a muscle invasive TCC December 1999, node mets discovered by CT scan in January 2000.Had six months of a five drug chemo cocktail, then had the RC with Indiana pouch in August 2000.

 

Kathy Knight is a major survivor having dealt with a number of cancers over the years in addition to bladder cancer. 1976--malignant melanoma-- 1, 1986-1990-1996--malignant meningioma--(brain)--3 1998--2004--TCC--transitional cell carcinoma (bladder)-- 6 2000's--BCC-basal cell carcinoma--2
2007--RCC-renal cell carcinoma (kidney)- 1
. She also had two other issues that were potentially fatal septic shock in 1982 and the V-P shunt in my brain for hydrocephalus in 2007.    


Ken and Connie Tolbert, at his graduation with a Masters Degree in Addictive Counseling, August 2005. He had neobladder surgery just three months before.


Ken and Puff having dinner in Rochester, Mn


Kevin Loweree and son Ryan. Dx with large low grade TA in 2001 treated with BCG and Interferon clear ever since .


Larry Eicher , 64, is a retired diplomat who lives in Charlottesville, VA with his wife Vicky, also a retired diplomat and a breast cancer survivor. Dx November 2006 with superficial bladder cancer. He had his first TURBT November 17, 2006 and is presently scheduled for cysto checkups every 3 months. Larry's photo shows him handling an injured immature Bald Eagle (under 5 years old) at the Alaska Raptor Center in Sitka, Alaska where the Eichers did volunteer work for the past 3 summers.


Leslie Parker celebrating birthday on the Disney Magic 11/19/02 with a close friend.  TURB 8/1/01 T1G3.  Did 15 months of BCG and had to stop due to side effects, been clear since TURB.

Lynn Williams was diagnosed in 2003 and has had treatments with BCG and Mitomycin C.


roger-and-lynn-bald.jpg
Lynn & Roger Williams bald. Roger shaved the rest of his hair to keep Lynn  company.


Mike Mann and Fran Millians, off Cape San Blas, Florida, in the sea kayaks he built for them. Mike had the Combined Modalities treatment and has passed seven years since his diagnosis.


Pat McVey, on the left, with her friend Kathy Sequin in June 2005 at the Kentucky Horse Park after her March 2005 RC and neobladder surgery.


Paul H., blue sweatshirt and baseball cap in the middle, with friends at "Easter in the Park" in Dallas. Paul was Dx'd in March 2004 with papillary tumor and CIS. He is being treated with Dr. Lamm's BCG protocol and there has been no evidence of disease (NED) since October 2004.


Paul Reeves with his three sisters; Shirley, Martha, and Betty - Martha and Betty are also breast cancer survivors. Paul was DX'd in 2002 with CIS and in 2004 with probable upper tract TCC. His treatments include TURB's and intravesical BCG, Interferon, Mitomycin and Gemcitabine to both the bladder and UT. He is scheduled to resume intravesical treatments soon based on suspicious cytologies


Pete Granger, Australian: My only claim to fame - born in the same small suburb as Rupert Murdoch and Dame Edna Everage, and currently living one street from where croc hunter Steve Irwin was born and raised.

August 1999, Gross Haematuria, Rigid Cytoscopy - nothing detected, August 2004, Diagnosed Ta G2, TURBT/Mitomycin, August 2005, 1 Recurrence, TURBT, August 2006. All Clear. As you might gather, Augustus is not my favorite Roman Emperor.


Puff, Robert Puffer, 59, rides the train from Shelby, Montana to Rochester, Minnesota to get his treatments from the Mayo Clinic. Dxed in November 2002 he is currently NED after treatment with BCG. The Puffman is a radio broadcaster and host "Afternoon drive" on KSEN in Shelby. His audio interviews with prominent bladder cancer physicians and researchers, Dr. Donald Lamm and two with Dr. Michael O'Donnell can be downloaded from the Web Café main page.

after a gruelling week of tests and procedures at Mayo Clinic in Rochester, Minnesota, we caught up with the Puffman at his favorite watering hole in Rochester, the internationally famous Michaels.

Roger Barton was diagnosed at 35 with Stage IIIb/Grade IV bladder cancer, RC and nerve sparing were all done laprascopically.


Roni and Ben Olsen taking a hike in the woods. Roni's A Guide to Bladder Cancer, Urostomy and Impotence is a must read, in particular, for anyone contemplating a RC. It details her husband Ben's battle with bladder cancer and the results.

Seattle Wayne Quinn Got bladder and prostate cancers 1997 Indiana pouch created then.  All free until 2006 when got Ureter cancer lesion.  Surgical ureteronephrectomy.  Currently no issues.  I ride my bicycle yearly from Seattle to Portland which is over 200 miles.  So.... I am not doing that badly by any means.  Keep looking to the future!  Day by day.  I am currently 61   Photo put up Feb 2011

Update 5/2012:
photo2.jpg

1997 RC w/ Indiana pouch
2006 R kidney and ureter removal for recurrence.
2011 metastasis to R lung and liver
On chemo since June 2011 with shrinkage. Taxol and Carboplatin

Retired RN serving homeless patients for over 30 years. With my wife Joanne (32years) 2 daughters and 3 grandaughters now enjoying retirement and hoping to overcome statistical odds against me.


 Simpson Russell with wife Connie, August, 2008 update and a heartfelt thanks to those on the list who were so helpful to me during the months leading up to my RC at Vanderbilt in April, 2006. I have been NED since then and continue to enjoy good health and an active lifestyle that includes a daily exercise routine consisting of both strength and aerobics plus a forty-  five minute "dog walk". My neo-bladder has performed flawlessly with both 100% day and 99% night-time continence and I have never had to
catheterize. All of which is to say to those whose struggle goes on
that there is hope on the other side of an RC.  My next checkup will
be in January of 2009 and with no symptoms observed my hopes are high for another good result. I'll be 73 then. Best wishes to all.


Shirley Greenberg of Ottawa and Barbados, Dx in September 2004, completed BCG treatments in December 2004. No evidence of disease since then but awaiting report on a recent P & P. Healthy except for Blc, has an active life and loves to travel, play golf, dance and socialize.


Tom, Alana & Hope, Steinmetz. Alana was dx'd with a 4.5 cm high grade T1 tumor when she was 19 weeks pregnant with Hope. She has been receiving BCG therapy, November 15, 2005 will be two years with NED.


Wendy Sheridan, with her dog Ruby, is the mother of this web site which she started to gather information for a sister with Bladder Cancer. Wendy is a Breast Cancer survivor, she and husband Joris Tielkes live on a houseboat in Amsterdam.


This page maintained by Mike Mann, many thanks


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Diana
September 13, 2008
75.36.148.41

My father was diagnosed with T0 early this year and he went through TUR and follwed with BCG. Now, 7 months and 30 days after the check up (the check up was negative for recurrence), my dad is getting weaker everyday. my dad underwent continuous weight loss (approx. 20-25 lbs since TUR) and experienced frequent urination. He also complaint of pain and discomfort in the bladder area. The physician is simply think he's exaggerating and other than the regular check ups, refused to go through any other lab tests. Can anyone share their post TUR/BCG experience with me? I want to know if my dad is a having a post surgery side-effect or he's having a recurrence or maybe something else. Thank.

Ron Greeson
October 15, 2008
64.12.117.193

I have had several BCG treatments. I lost about 30 pounds over aperiod of aboout 1 year. All my biopsies have been negative. I was diagnosed with CIS. I am feeeling fine now and have gained 20 of those 30 pounds back. I also had interferon with BCG on 3 treatments. There is light at the end of the tunnel. DON'T GIVE UP ! I almost did, I had depression, loss of energy, and urinarty pains on and off. Pray daily and be thankful for each day. I think I am going to be fine now, but I sure didn't think so 2 or 3 months ago.

Cathy P
February 02, 2009
74.12.131.234

My Father is at day 5 post op for removal of bladder/prostate and is doing ok other than not being able to get his bowels moving and therefore not being able to eat. He feels week and doctors have backed off the pain meds in order to get things moving for him but tonight he is real pain and discomfort ...wish there was something to be done to help him pass gas and thus start the journey back to strength....He is trying to get up and walk but is so weak from blood loss and not eating...he is 69 and was in good health prior to this event. I know if varies for everyone for the length of time it takes to get bowels moving...just hate the agony of watching him try hard....worried that they might not get moving and they might have to go back in for some reason (blockage?)
Anyone have any experience with the this taking so long?

Chris
February 03, 2009
98.245.22.36

Cathy, I have found from personal experience that opiod pain killers can cause severe constipation, so I try to avoid them if possible. In cases when I need to take an opiod pain killer, I use a stool softener or laxative along with the pain killer to help address the problem proactively. Drinking lots of water and eating food high in fiber helps a lot too. My experience is that doctors and nurses seem reluctant to deal with this very unconfortable side effect, so your Father should voice his concerns to his doctor directly. When I was in hospital with a morphine IV drip, I had to ask assertively for an enema to correct the problem. Before then they were trying to treat my constipation with a mild laxative only, which was ineffective. Hope this helps.

sydelle mayer
February 07, 2009
69.117.57.137

Help , my husband had RC 2008, clear margins and nodes; latest cat scan clean, however, cytology report shows cancer cells in urethera? Surgery scheduled for next week. What hope can we go on or do we assume this can conmtinue throughout system? smilies/angry.gif

Jon Troiano
March 03, 2009
71.222.39.207

I don't know what to say. I'm 44 and have another small tumor in my bladder that needs to come out. I feel that I'm lucky. The Dr wants be to try a vitamin
diet before I try BCG treatments. I'm looking for a place that I can ask questions about treatments. I was reading about special diets also. I was also wondering about diets that help repair the damaged DNA. I'm going to look around and see were to join this site. I'll be back..

Jon T

Cherri
September 17, 2009
75.17.248.181

Thank you everyone, for sharing your stories. Mine is lengthy - but if you're interested: I had my right kidney removed in 1990 at the age of 35. My kidney was totally eaten up with cancer by the time it was discovered. The symptoms I had (dizziness, back pain) had been dismissed by family physicians as a new mother who had a constant ear infection. Only when I had copious amounts of blood in my urine and went to the emergency room myself, was the kidney cancer revealed. I met a young urologist who offered to help me, and he is still my urologist today. I learned from my father that my aunt had died of kidney cancer, so I felt very lucky. A 3- month followup revealed cancer on my left kidney, and I had a partial left nephrectomy in 1991. When I was ready to celebrate my fifth year cancer free, I started to see trace amounts of blood in my urine. My urologist removed one tumor from my bladder (1996). Five years later (right around 9/11/01 -- and I felt guilty about being concerned about myself), again I suspected a problem, and was found to have several papillary tumors. They were removed, and I was sent home with a catheter. BCG treatments followed. A cysto followup one year later revealed another single tumor. Surgery again, followed by BCG/Interferon treatments. I did so well, my urologist last year said I could go one year without a cysto but to call if any problems. At six months into that cancer-free year, I again saw blood in my urine and the urge to urinate frequently. Yup, cysto revealed 3 tumors, 2 papillary and 1 high-grade. An oncologist told me my only chance is to have my bladder removed. Maybe I've fought this fight long enough, maybe bladder replacement will save my life? My urologist is grudgingly but kindly willing to try interferon/BCG again - but for two years with close monitoring. Any sign of failure will result in bladder replacement. That would be my next step. I've lost over 11 pounds in the last few weeks, and am starting to look sick. I'm uncertain what to do. I guess the thing is, I'm not afraid to die -- but I would like to stay around to see grandchildren aggravate my kids the way they aggravated me -- and no one is expecting at this time, so I need to hang around. smilies/cheesy.gif Weird what I think of when I contemplate my living and one day passing.

Gerald S. Burchell
March 18, 2010
66.18.146.104

Hello I was diagnosed with superficial Bladder Cancer in Sep/2005. After passing blood clots and then passing a gross amouth of blood. Biopsy revealed in had not penetrated the bladder wall. Did 8 BCG treatments over 8 weeks. Then another biopsy, I was told that BCG treatments were my only option. If they didn't work my bladder would have to be removed. I was told that the cancer was gone, and 2nd opinion from John Hopkins University also confirmed there was no cancer present. After that I had 3 more BCG Treatments, and a Cysto every 6 months followed up the next month with 3 more BCG Treatments. Every check up look as though the cancer had came back, but each time it was the treatment that left red marks on the bladder wall. ( during the 1st 13 treatments I could go to work after ward with little to no discomfort, and work and nonone even new I had undergone treatments for bladder cancer, but as the treatments went on, it became mind over matter just trying to hold the treatments in for 2 hours. Has anyone else expreinced this? Last september/2009 I had a perfect check up. I was told if my next check up was as good as this one, no more treatments only check ups every 6 mos. Then came 16Mar 2010, the cysto revealed three red spots, now I dont know what to do. My doctor had told me that if it ever comes back during treatment he'll have to remove my bladder. He told me that the cysto test looks good although not perfect. He actually said it wasn't bad, yet he did so as he put his hand on my shoulders as a lay in the surgery room. He told me that he'll have to talk to me is his office about the next step. I am terrorified. He didn't even mention about having a biopsy ( even though I know he's going to do one anyways ) I am 52, Single, never been married, and no children. I would sure like to meet someone. Does superficial bladder cancer always result in an RC? And how long after an RC will I beable to live? Or WorK? There are pictures of Bladder Cancer surviors on this web site, yet the picture shows them before they receive an RC. Pray for me Gerald S. Burchell

PS I believe I aquire this from the Marines. I was a hazardous Materials /waste inspector at 29 Palms CA. I went to over sea the clean up of some PCB's that cooked and expanded out of a transformer after it was hit by lighting. The civilain had not mask on, I had a white rubber band mask on, when the fire department game they had on full respirators on. When I return back to the office my Lt. Col. told me I was breatheing in Highly dangerous chemicals. He told me to wright the date down for my own records. I didn't because I was younger and dumb. 9 years later I'd be out of the corps, and pissing out blood.

Tad Wooten
April 03, 2010
70.250.179.241

Gerald, My name is Tad Wooten and I am 30 years old in Texas. I was first diagnosed in 2007 with superficial BC low grade with 4 recurs even after BCG and Mitomycin. I would like for you to contact my oncologist urologist name Arthur Sagalowsky who is the Head Professor at UT Southwesten Medical in Dallas, TX. He is the guru in BC. I feel for you to have a RC for superficial BC is super crazy and feel Dr. Sagalowsky could answer your questions and help with treatments. I chose UT Southwestern over MD Anderson because of Dr. Sags credits in BC research and treatments.

chris
May 03, 2010
75.236.229.61

any info anyone can give me would be helpful. My brother was diagnosed 3 weeks ago with bladder cancer. It is invasive and in his muscle so they are acting quickly. He has asked my help in decision making so in turn I ask help with how to research this quickly. He has been advised to do 8 weeks of chemo and then have his bladder and prostrate removed. He has been told they would try to do a neobladder. His doctor has done 200 surgeries and 50 neobladders. How do you find the best doctor to do this in the Boston area? My brother is scared to death it will end his sexual performence forever.

Catherine H
October 06, 2010
76.122.226.100

Hello everyone... I am touched by all your stories of courage and determination. My ob/gyn found a small (1.6 cm) bladder tumor on 1/4/2010. I had seen a few times a light stain of blood on the tissue after going to the bathroom and assumed some slight post-menopausal bleeding. I am 55 and in very good health, and had never even had a UTI, so bladder issues NEVER occurred to me. I had none of the risk factors. However, I remembered she had told me that ANY blood after menopause is never normal, so I made an appointment right away. She did not see any obvious signs to cause bleeding, but she would not give up and decided to do an ultrasound. Bingo... there was a walnut-looking tumor near the top of my bladder. She made an appt. for me at the urologist which led to a TURBT on 1/21, pathology back on 1/28. It was an adenocarcinoma, and he referred me to Vanderbilt University in Nashville because he had little experience in that area. I feared the worst while waiting for my VB appt. on 2/4 because the more I read, the worse things sounded. There's so little info on bladder adenocarcinomas, and what's out there is not encouraging. Because the tumor site was at the dome and relatively small, the surgeon opted to do a partial cystectomy on 2/25. Findings were that a tiny bit of tumor had been left behind by the TUR and was removed, it was primary to the bladder, and 2 margins and lymph nodes clear. I've had two 3-mo. cystoscopies and both looked great. I know I should be overjoyed at the news (and I am) but with so little info, I find myself constantly searching for data and feeling anxious about a recurrence. I have to stop doing that, but I feel pretty alone since there is so little information and experiences out there. Thanks for letting me air my anxieties here because my family really doesn't understand the nature of bladder cancer and doesn't want to talk about the possibility that it comes back. Blessings to all of you!

vancouver steve
November 30, 2010
99.199.127.53

After many ladroscopic surgeries I took second opinion of a team of doctors at bc cancer agency. My bladder was removed and a duct installed. Recovery was difficult and still is. I am lucky to be here as my family doc told me -a patient who was too vain to commit to the knife and was dead in two years.

Dave Durrant
December 31, 2010
184.10.254.62

This is written in response to Gerald S. Burchell. Please consider other treatments than radical cycstectomy - that's really, well. too radical. After diagnosis of superficial bladder cancer in Sept 2001, I had TURBT with Mitimycin instillation immediately post surgery at VA Medical Center in Mpls. Then cystoscopy, cytology and tumor markers on three month schedule until Dec 2010. I am considered cancer free at this time [NED] but expect to monitor this situation for the rest of my life. VA Medical Center Mpls is a teaching hospital connected with Univ of Minn Medical School and Mayo. People and treatments are top notch. My docs have told me to forget about RC for the time being because conditions simply don't warrant it. As a veteran, you should be able to use VA system and you may be able to reconstruct your service caused exposures to get some relief. Talk to your county veteran's service officer for more details - also American Legion and VFW might be able to help you.

Gerald S. Burchell
January 25, 2011
98.154.38.27

Hello all, I am still here counting my blessing, and dealing with the curses. Last march I wrote that something was wrong, will it turn out to be an ulcer which contained no cancer. However 6 mos. later I went in for another check up after which he told me there was no reason for me to come back every 6 mos. Because there is no cancer, and there hasn't been in cancer. But then several days later I was at work and I pee'd out blood. By the way I dont have Superficial BC, I had CIS. They ask for a urine sample, and it found that I had a urine tract infection that was resitance to antibotics. So they gave me a different type of antibotics. Since then I have been passing blood clots (3) and I pee'd out blood again. They believe its comming from my upper urine tract, and on the 26jan I am under going a IVP to see whats up. I believe something is wrong, and I believe its in side my bladder. Also last year I went to the hospital 4 times each time I caught a fever over 105. My left leg swelled up. They did ultra sounds each time for blood clots and each time they said it was Cellulitis but no one told me how. Well on thanksgiving I had to work. I had to drive to Long Beach, South Central L.A., Pasadena, and back to Fontana. As I was driving back I notice it became increasingly hard for me to sit down. It was becoming very painful, I thought I was going to have to call a ambulance. I pulled into a gas station and walked around, and got back into the van, and it never happended again. Last night I was sleep on the floor /carpet. I woke up and turn over on my left side and notice that my hip was hurting for no reason, my right hip wasn't hurting. My left hip is still hurting as a type this message. I just dawned on me that every time I went to the hospital because of a fever and my right leg was swelling I had been sitting down for a long period of time, My gut feeling tells me that all this has to do with my bladder. Everyone else thanks I'm nuts. However tomorrow I going to have everything checked out. Dave Durrant thank you for the information. Has anyone heard of CARNIVORA,

ankit
February 05, 2011
59.182.121.135

hello,
God bless all,
my father had bladder cancer, we got the tumour removed. we even had 6 bcg instillations. yesterday after cystoschopy(spell may be wrong) doctor descovered one red spot in the bladder. urine cytology says cancer cell in the urine. fluid cytology report pending.
but it has been confirmed cancer has reaccured.
getting a ct scan done on wed. may god be with us ,
i wanna try to save my fathers bladder, but if he says we have to remove the bladder we will have to do it.
my father is very strong its me thats shaken.....

Tom Steinmetz
March 10, 2011
74.128.157.204

Hello Everyone!

It has been a long time since I have been around, and I apologize for that. Today we celebrated my daughter Hope's 7th birthday! It is hard to believe that she is turning 7, and Alana has now made it 8 years without a recurrence. To update those who are new to the site, my wife, Alana, was diagnosed with a 5 cm T1/G3 tumor when she was 19 weeks pregnant with Hope. The tumor was removed successfully, and she underwent BCG therapy after Hope was born. She continues to get yearly booster rounds of the BCG just in case, since she tolerates it so well. We are very much aware how lucky we are, and we thank the Lord for it. I continue to think about and pray for the folks who I met while trading emails on this excellent web site. I will try to get with Wendy to get a couple of more recent pictures of Hope loaded up. My message to all who were recently diagnosed - keep praying - miracles DO happen.

Julie Warwick
July 12, 2011
124.149.22.64

I feel a bit overwhelmed at times

Julie Warwick
July 12, 2011
124.149.22.64

Hello, I was diagnosed with renal cell carcinoma in my kidney and had my left kidney removed in March. 2 months later they found transitional cell carcinoma in my bladder. Curently undergoing BCG treatment. I am female and 50. I also suffered a ruptured brain aneurism 6 years ago and took 11 months to recover. Am feeling a bit overwhelmed at times.

Gerald S. Burchell
October 03, 2011
192.248.248.215

Hello everyone this is Gerald S. Burchell again. Seems as though I only come here when I am in crises mode. Everything had been looking good. I had a nother check up where he went inside. He told me it was the best check up ever. Sometimes I don't know what to believe. Because I thought something was big time wrong. It was a gut feeling that something is not right. However, I took the blessing he gave me. Shortly after I got the worse UTI ever it smelt like sewer water when I urinated. I actually thought the sewer line was backing up. I even went outside to see if the septic tank was full and it was. I became alarmed when I had to go to the bathroom when I was hiking. Then I founded out that smell was comming from me. Some antibiotics knocked that out. Yet when I was giving the nurse a urine sample a large piece of bloodied skin came out. No one was alarmed they figured it was from the UTI. 3weeks ago my doctor wanted me to give him another urine sample which came back negative. But last Monday I passed a blood clot and this morning I passed another one. I believe my last BCG treatment was 12 or 18 months ago. I was wondering if there is a reoccurrence, foes that mean I have to have my bladder removed. Also my doctor doesn't talk to me much. And after reading about all the other methods and procedures I found here I wonder if my doctor knows about them. I live in The Riverside, CA area. My knew email address is: geraldsburchell@me.com my old one still works but this one is the one that Apple updated. You know the last time posted here I had a cysto that came back negative. Yet before and after I passed blood clots. My FISH test, IVP of my entire UT, and prostate tests all came back negative. Furthermore my last test was the best ever. No one ever found out where that blood had came from. Conversantly my doctor office call me 3weeks ago and told me he wanted to see me ASAP it was an emergency, the call scared me. But when I went into the office. ( I had no money to pay them ) he decided not to see me. Just give them a urine sample and he'll see me on December 13 th at my next cysto. That was really odd. I need your help and your prayers. In sep 2005 a biopsy ruled that I had BC / CIS at multiple sites. After 8 BCG treatments and another biopsy which came back negative in March 2006, and doing those 3 week BCG then a cysto and FISH every 6 months for about 3 1/2 years I have been cancer free. So if there is a reoccurrence now. What are my options? You may email, fax, snail mail this post to anyone that you might know that can help me. Look at Deacon John. Sincerely, Gerald S. Burchell

PS Deacon John did all those treatments knock out the cancer or was it the last ones only. I know that Jesus Gave you the victory bro. And I hope that you can continue to rejoice in the victory. AMEN. I don't want to under go a RC, unless it's a last resort.

PSS why is it so dang hard to log in or send/ add comments. How many times do I have to put in the security images in.

Mainah
January 19, 2012
74.78.67.165

In Sept 2010 my husband had a fall at work which led to blood in his urine, and the Dr's discovered a tumor with the biopsy results being bladder cancer, and recommended an immediate RC. We opted for the neobladder but during the surgery (robotic) they found that the cancer had spread to the lymph so they chose to do the urostomy (illeal conduit) instead. Since the surgery, he has had 3 major infections - typical, we're told - and decided not to do the adjuvent chemo since there are no stats to support any benefits, and he has been deemed incurable so he chose quality vs quantity. Other than coping with the infections, he's doing well but it's tough since we're young and now have no sex life...but we focus on the positives and the fact that he's alive.
Had the surgery done at the VAMC in San Diego - what an outstanding team of surgeons, nurses and staff there...highly recommended if anyone is in the area and considering hospitals.

gennaro andreozzi
July 07, 2012
173.52.8.92

This may not be inspirational but I feel I must tell my story.
I am now 77 years old.
10 years ago I found blood in my urine...early stage non-invasive bladder cancer.
After BCG treatments failed and almost killed me I opted for surgery.
I received an Indian pouch.(the way to go) After an 11 hour operation in which the doctors removed my bladder, urithera, prostate and all of the cancer.
No Chemo treatments were necessary.(yeah)
I had recurring kidney infections for years. I am now taking medication that does not allow bacteria in my urine to attack my kidneys.(what a relief).
The doctors preserved some nerves so I have all the feelings and libido of a teenager but none of the erections.
They never told me that with the lack of recurring erections the penis shrivels to that of a 2 year old's.
My wife just keeps reminding me that at least I am alive...I guess.


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