Urethral Cancer

[livingwith]

This is a new adventure for me to be posting my “story”…however if it helps someone else in some way that would be the main purpose OR if anyone knows of more management activities I may explore would appreciate correspondence. I was diagnosed with uretheral adenocarcinoma July 9, 2007, after a sudden on-set of being unable to void and aggresive work up following that episode.
I had surgery on 08/24 of a pelvic exenteration, cystecomy and creation of a urinary contuit. At ...Read the full article

[baby_sister]

Hi, I am still not sure where to post, but I will try here as maybe you can give me some advice. It seems my urologist is dragging his feet as I am a poor, charity care patient, young(for cancer anyways, 42) and a woman. I have had hematuria for years. Years ago they just said I had harmless cysts in my kidneys, and the blood was just a leaky kidney. Last year they said the cysts were hyper dense and sent me to a urologist. He did a CT with contrast, and said my left kidney was full of stones, but none that could be taken out. (never mentioned the cysts, even though all of this has always been on my left kidney). Then he did a cystoscopy and said all he said was squamous metaplasia and hemmorages. He sent a bladder wash to cytology. He has scheduled another one for July, but never said what my results were so I went and got the reports myself. It said
Atypical cells present.
Clusters of atypical urothelial cells, squamous cells, columner cells, and traces of blood.
Neoplasm cannot be ruled out.
I have researched this, plus I am in college to receive my BSN degree, so I understand a little of this terminology. It sounds like a high possibility of cancer. I have a continous ache in my bladder area, and when I have to urinate it gets unbearable. Plus my left side hurts off and on too. I have been trying to find the answer if this is common practice to wait so long and test again, when it seems that that could be dangerous. I don't want it to spread it I do have cancer. Please, I just would like advice from people who I am sure have had these tests and know about it.

[sisterinlaw19]

Hi,

This may sound strange but am I glad I found you. My sister-in-law was diagnosed with urethral adenocarcinoma in November/December. In February, she went through an 11 hour surgery to perform a lower pelvic exoneration. When biopsy reports came back, it had showed that cancer was in the part of the bladder that was left. They went back in, in April and removed the rest of the bladder and her uterus and unfortunately, it has matastisized to her intestine. She also has a urinay diversion that was created and still has the extra line until she is healed. After that she will empty out through her belly button every so many hours. She has had many infections and has lost 40 pounds since February. She has little energy and just wants to go back to her life. Her doctors where she is being treated which is one of the best in the country have decided against any form of chemo therapy and agree that radiation is not an option. They have told her that they cannot cure her disease. However....I'm furious with this institution. As bad as this is, I cannot for the life of me understand why they are not going to at least try a clinical trial. We have contacted MD Anderson and are awaiting further instruction. Everywhere we look, there is the exact same information....almost as if the same document was printed and copied to every web-site. She is only 38 years old and has been told that her's is very unusual because she is so young. We need help. Any ideas from any survivors would be great.

Thanks so much!

[Thursdaychild]

Reply to sisterinlaw: I am so sorry to hear of your sister's-in-law and her experience...it is quite frustrating etc. Certainly I am not qualified to answer any questions of another's illness and/or treatment but I can offer my sincere empathy and maybe a couple of suggestions that may help in some way... First the patient's overall health status probably has some bearing on treatment options; secondly, for sure the "kind" of cancer and it's progress would have significance. It is true apparently that not much is published on uretheral cancer, and it is noted to be rare, or unusual in most articles I can find, and additionally the "kind" of cancer ( mine being adenocarcinoma etc ) adds to the dimensions of treatment options and follow up, I do not hink there are any clinical trials at least not for the "kind" of cancer mine is. The "spread" or metastasis is another factor that can be a huge consideration for treatment options. Understanding what is going on is very important for everyone, so it would be helpful for a family member or friend to accompany your sister-in-law to her treatment visits, and take notes, ask questions etc. Most physician's may not have the time to address all questions, but they almost certainly have nurses or nurse practitioners who can be very helpful in providing answers to most questions. I know your sister in law is lucky to have you trying to help with this.

[sisterinlaw19]

Thank you for your kind words. We are still looking into treatement options though at this point, we have not been accepted into any. Our biggest hope will be at MD Anderson in Texas. Her's as well is adenocarcinoma and it is the rarest of the three types of urethral cancer. We'll keep you posted and thanks again so much.

[sisterinlaw19]

Hi again,

My sister-in-law recently relapsed. Three weeks ago they said that all looked good and now they say that the cancer is back in her intestine over her colon. I'm sure it was there but was so small at the time. Her counts are a little off and infections have set in. If they can clear these obstacles, they will start chemo on August 1st. (taxol and carboplatin) They are to be putting a port in as well. I don't know how I feel about this. It seems she just keeps metastisizing over and over and this time surgery is not an option. This is the first time they will start chemo as well. They can't cure her but are able to extend her life I guess is what they are saying. Were praying for her to be healed. Any advice out there? Thanks for everything. Hope you are feeling good and on your way to happy days.

becky

[Thursdaychild]

sister in law sorry to hear of your sisterinlaw I amlate checking in on this channel for have been at my own battles recently I surely hope by now you (she) has some good relief going on... I wish Ihad something to offer but my prayers are with you..... an update on mine etc I had completed chemo and radiation and in may 23 had PET found that those treatments have been sucessful for me however I have grown two masses in my lung.....sooo we have done biopsy which was neg, and then watched and repeated CT which showed they doubled in size from 05/23 to 07/16 sooo I am just now home from haveing those removed from my lungs a thorocotomy another huge surgery but I am recovering fairly well sooo far we know it is cancer but I do not yet know if it is related to my uretheral ca or is a new cancer (lung primary etc ) I can wait on knowing that til I am well enough to see the doc to receive treatments etc that will be next week I think soo for now trying to recover and I am very sore ..... other wise hoping for some good news here I hope by now you have been abe to start the chemo and it is working for you what is confusing and amazing to me is how such a variety of symptoms and locations this seems to take and the devastation of course along with it it seems to me that other cancers are confined to general locations or travel a fairly well defined course for even metastasis but this is just weird to me what are your thoughts ?? about that and what have you all been told about something about that "element" of this ???? hope for the best for you til next time

[sisterinlaw19]

Hi....hope you are getting around better now that some time has gone by for your recovery. I absolutely agree with you about this cancer. It was explained to us like this.....This cancer grows like a weed. It starts off in the urethral area...it's taken out and it pops up somewhere else. You manage that site and then it appears somewhere else. It finds a home that it is happy in....gets detected...treated and then finds another home. As far as Lynnie goes....she is doing quite well. She has gone through three treatments and has handled it remarkably. She will be going for her scans next week and then will get the results soon after that. The hope is that the tumors have responded and that no new ones are detected. She is very careful now not to be around germs, people that are sick...colds, flu, etc. She looks great and is feeling very well. It's hard to believe that after everything she has gone through, she wakes each morning with a renewed sense of life and is determined to beat this. Our prayers are with you. Keep up the fight....As Randy Pausch said....Brick walls are there for a reason. They give us a chance to show how badly we want something. God Bless. Keep in touch and much love to you.

becky

[Thursdaychild]

It is great hearing about your sister-in-law. And it is wonderful that her response is so positive. I think I am doing really well too. At the moment, I am recovering from a thorocotomy (lung surgery). I had this on Aug 13 and the two specimens were positive for metastasis of the uretheral cancer; however they feel that they did get the enitre "process". I had another PET last Monday and learned Thursday that there is still "an area" in my lungs, however it appears this could be some residual of the lung surgery or maybe I am thinking, scar tissue of the needle biopsy done prior to the surgery . I have learned that the lung surgery was bigger than even I anticipated and although I am doing well and have had no complications, I guess I am anxious to "feel better". I had almost gotten to that point prior the surgery from this same experience last year. HOWEVER, my doctor has been wonderful through all of this and at this time we are "watching" it No treatments are recommended at this time, and of course we are not certain "what" it "is" yet and I am not strong enough for further treatments right now. We will repeat the CT in November and check for what its status is at that time. I am very hopeful that it will have resolved and hence "all" the cancer GONE !! That is my prayer, andI believe that is actually possible. STILL though I cannot find any news of uretheral cancer or even comments of others except from you and my doctors. It seems that it is a strange variable to most of the other cancers in some respects and very little is known of the outcomes of treatments. All the negative information I found getting into this, I am now hoping is maybe "not so true", and maybe one case at a time our positive outcomes can matter to benefit others some way. If you hear of any avenues towards "that end" , I would be happy to participate in ways that I can. I know my doctor gave me an aggressive chemo, and we are still very hopeful of its success. I will get over this surgery soon I am certain, and "staying healthy" still my current goal. My hair has returned and although I have "earned" it , I was auburn haired and now SILVER, which is a huge adjustment ! But another change I can live with.... Take care and best wishes for your sister-in-law
Thursdaychild