Urethral Cancer

[cdeskins]

I was diagnosed with urethral cancer in 2005, had surgery to remove the urethra, bladder, womb, and one kidney, and then a urinary diversion from the good kidney to stoma. I underwent 31 treatments of radiation with 6 weekly treatments of chemo The following year I had to have a portion of my small intestine removed due to damage caused by the radiation. After a couple of good scans, it was determined that the cancer spread to my lungs. Because the growth is minimal I am presently doing all that I can to build up my immune system and WBC.

I am trying mega supplements along with Iscador (mistletoe extract) and will undergo chemo at a later date.

Are there any urethral cancer survivors out there and what have you done?

[UroDoc]

Sorry to hear about your disease progression. I have several patients whom I have operated on that have survived urethral cancer, however the disease had not spread. Based on what you surgeries you had done I assume you have transitonal cell cancer. This is most often but not always brought on by smoking, so if you currently smoke I would advise quitting. Hopefully another patient with urethral cancer will log on and relate their experiences with you. Good luck.

[cdeskins]

Fortunately, I do not smoke, but I did in the past. I would say I stopped smoking about 12-15 years ago. I worked out at the gym, took cardio classes, ate well balance meals. It is had to say what the real cause was. In between my two pregnancies, I had a bout of bad pap tests and dysplacia, which we assumed was under control. I know this is where the HPV comes in. During my first pregnancy I had vaginal warts removed. Again this is part of it. Other than that, which is enough, I guess, these are the only problems I have had in my 56 years. I do, have a lot of cancer in my family. Breast Cancer, Lung cancer, Bladder cancer, ......

My cancer was squamous cell carcinoma.

At the present time, I am feeling great and fortunate that the cancer is slow in increasing. I was hoping the Iscador would prove to be beneficial in that maybe it would make the tumors disappear.

I posted because I was hoping maybe someone might have done something different to offer. I am open to any new ideas.

I have read some articles about Vitamin C intravenous trials.

There is not a lot on the internet about different therapies or any information on surviving patients.

[jazzytee]

I was dignosis with urethral cancer july 2006. I under went 2 rounds of chemotherapy and 5 weeks of radiation ending with radiation seed implant. I was out of work for about 2 and half months. I return to work part time for 4 months. During this time, My urologist inserted supra pubic catheter (July 2006 -February 2007). I am currently working full time, attending school part time and a single parent. I am able to void on my own. I have minor incontience. The only medicines I take are blood pressure, pyridum and bladder spasm meds at bed time. I am currently under going hyperbaric treatment to treat radiation burns in the vagina area. Other than this, I feel fine. If I can help anyone with questions, please e-mail me.

[DavidC]

Hi...my first time on this site...and I am not much of a techie...so hope this attempt to make contact is successful! I was recently diagnosed with both Prostate and Urethral cancer...a double whammy! I was given to understand that whilst the Prostate cancer was common...the Urethral cancer was very rare...and to have both together unheard of! Radical surgery was proposed as the way forward...exit bladder, prostate and urethra. I sought a second opinion and was given the same sobering news. However, the second urologist felt that the mutilation involved warranted exploring radical radiation and chemo...and after reviewing my case a group of oncologists proposed a plan that involved variable radiation (35 treatments)...and six weekly chemo. In part this approach was based upon the histology of the urethra biopsy...which indicated the cells were transitional...and similar to those found in bladder cancer. It was felt that the urethra cancer cells would possibly respond similarly to those found in bladder cancer. I am nearly finished my treatment (two more weeks to go)...and then I will have to wait until the end of March before tests (MRI scans etc) can be done to assess the effectiveness of the treatment. The side effect have been cumulative...nausea, painful urination, and gastro irritation...but thus far bearable...oh and am losing some of my pubic hairs, and the skin in that area is sensitive. Perhaps one of the most destressing aspects of my condition has been the conflicting information...with one "expert" on the web claiming only a 3% success rate for conventional treatment (radiation/chemo...a claim vehemently dismissed by my oncologist. Sigh! It does seem as though there are simply more questions than answers, and no place to hide from the chronic stress that such a diagnosis brings to one's life. Fortunately I am blessed with a loving and supportive partner, so I guess there is a God after all! I wish anyone reading this post the warmest of season's greetings, and best wishes for the new year!

[bamawland]

Hi. First time here. My sister (71 yrs) has recently been diagnosed with that "rare" scary urethral cancer. Had her first visit with the radiation/ocologist today. Seems her doctor has never seen a case of urethral cancer so she's ordering a P.E.T. Scan & MRI next week. At this point, her dr. has no clue as to how she will treat her until the test results are in. As you can imagine, we are at our wits end. She was sent to Vanderbilt Univ. in Nashville, TN for 2nd opinion 2 weeks ago. Any consolation that there is hope for her? Thanks for any replies.

[dineshsingh]

I am giving some detail about the treatment of Urethral Cancer.Please try this and share with me if u get any relief.

Treatment

Treatment for urethral cancer depends on the stage and location of the disease, and the patient's age, sex, and overall health. Options include chemotherapy, radiation, and surgery. Because urethral cancer is often invasive, surgery is the primary method of treatment. Chemotherapy and radiation are often used as adjuvant therapies.

[benmas]

Hi DavidC. I have also have been diagnosed with urethral cancer last July 2007. The mass was seen at the posterior bulbomembranous urethra. Surgical excision of the mass was done. I had undergone an external radiation therapy from december to january (with about 28 sessions). I had an MRI done last April 4, and it shows that there is a recurrence of the mass in the region of the bulbomembranous urethra and is already extending into the surrounding perineum including the ishio-cavernous muscle with anterior portion of the levator ani and outer layer of the anterior rectum. it also infiltrates a portion of the inner gland of the prostate gland. there is also a small irregular enhancing focus in the floor of the urinary bladder adjacent to the prostatic urethra which appears to be an extension of the mass. My doctor advised me to have a radical cystoprostatectomy and penectomy (exit bladder, urethra prostate and penis), and he will make a urinary diversion (ileal conduit). i am 50 years old and a diabetic. i am very much concerned with the wound healing and chances of survival after the surgery. i've read that there is 50% chance of recurrence even when surgery is done. i currently have a urinary catheter, and i am experiencing mild infections. i would like to know the progress of your treatment. i hope you can share it to me.

i also hope that someone can help me with this and advise me on what's the best treatment option for my case. i am also interested in clinical trials if there are any, so please do inform me about this matter.

[onforgetable]

Hello, just found this site...

We are a very small group I am happy to have found you;
July 2006 i found out that i had adencarcinoma diverticulum urethral cancer
i was told that i am the 51st person in the world to have this type

In octtober 2006 i had the big surgery an Indiana pouch, they removed my bladder, urethral and the frount wall of my vigina i was told that chemo would not work with this type.

[slabdraw]

Just tuned in to this site and am glad to share my experience. On Jan 2, 2008 I had my bladder and prostate removed (Transitional Cell Cancer) and began to undergo chemotherapy treatments. In the latter part of May the doctor discovered a mass at the base of the Urethral. On June 12, 2008 surgery was performed to remove the Urethral. I then underwent additional chemotherapy treatments until November 2008 and treatments were stopped because of complications with the kidneys. Cat scans since surgery have been satisfactory but neither my urologist or oncologist will say the word "cure". They will only say I am stable. Actually I feel good except I have contineous scrotial pain since the June 12, 2008 urethral surgery. It hurts 24/7 and my urologist has no idea what causes it and hence I am not taking any medicine or doing anything to relieve the pain. If anyone had similar results with scrotial pain I would appreciate feedback. Best of luck to all who have experienced this cancer.