I'm not sure what to do. Any help out there?

paulf
paulf Member Posts: 13
edited March 2014 in Bladder Cancer #1
Please take the time to read my urologist's notes to my personal physician. I want to have as much information as I can when I see him again. I'll probably have to decide whether or not I want to remove my bladder or wait and see.

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He writes: I rebiopsied the site of [the patients] previous bladder tumor. It is still considered a nonpapillary, high-grade carcinoma. There is no obvious muscle invasion, but it is considered very high grade. This puts us into a position to where we really have two options. One is to continue to follow him and rebiopsy him a very frequent intervals. I certainly would not want to go over three months without rebiopsying him. The other option, of course, is to take the bladder out.

I worries me that this are still contained a high-grade tumor and the fact that it is not a papillary type of tumor. Probably the most conservative thing to do would be to take the bladder out, but that is an awfully big step to take, and I certainly would be willing to sit tight and rebiopsy that area again in two to three months, if that is what [the patient] wants to do.

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I learned the above information from a bungled telephone call from a secretary and then the letter in the mail. I've made my adjustments to the initial diagnosis and, amazingly, having the bladder removed seems like a good idea right now. However, I wouldn't mind waiting a few months to see, as long as I'm not endangering my life. I have an appointment with an oncologist before I go back to my urologist . I want to get a bigger picture and look at all of me as well as seeing if there's any other treatment. If you've been faced with a similar decision or can add to my information, I would really appreciate it. So far I've had two transurethral resections and thought that a BCG treatment was next, but, apparently, the high-grade aspect (T2a) precludes this. Right now I'm not sure if that's correct.

Two nights ago I was basically a puddle and couldn't have written a word about this, but I've gotten some perspective from seeing my personal physician and getting an appointment with an oncologist (even though I haven't seen her yet) has really helped me. My urologist may be doing right by my bladder, but he has bungled the communication and human aspect of it and some of his staff, in my opinion, has forgotten that they're dealing with a person and not just records. The other two physicians that I'm dealing with and will be dealing with will do a little more hand holding and I really need that right now.

Other than this, I'm in great health and take excellent care of myself with diet and exercise. Let's hope that's a factor.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hi,
    My name is Jo Dell Carlson. I had the high grade tumors also. The doctors waited to talk my bladder out, and they waited to long. IF I had it to do over again, I would have gotten it out then. Do not wait. I have had a urostomy for 4 years now, and I have never regreted having my bladder remover. Because they waited so long, the cancer travel to my lung. I have had 28 surgeries. Six of which were major. They have removed my right kidney, right ureter, urethra, bladder, mets to left lung, they removed the tumor and gave me chemo, and it came back right after chemo above my urostomy.
    I am currently cancer free, but I believe I would still be about to work and not have had all these surgeries if they had taken the bladder out in the first place.
    You can email me at jodellcarlson@hotmail.com
  • msh
    msh Member Posts: 5
    #3
    I had 1/4 of my bladder removed at age 50 from cancer from endometriosis. Prior to surgery I told my surgeons to be radical and make sure they got all the cancer and left nothing to chance. I told them if they removed my bladder I wanted an interior pouch/stoma that I could drain via my abdomen. I didn't know 'til I woke up whether this was done or not. I did keep 75% of my bladder but I would still tell them the same thing--go for the cancer. With the chance of recurring cancer, eventually you might compromise your chances, and fooling around with catheters and a bag is also a long painful process involving infection. I know it is very very traumatic, but I think it is ok to go for the most you can do to safeguard your future. In the long run, I think you gain comfort too with your bladder situation!!!! My cancer recurred but it is in my lungs, and my kidney now!!!! All this within 8 months of finishing chemo.Go for your best chance.Hang in there!!!! I will pray for you.
  • santiago
    santiago Member Posts: 4
    #4
    I had my bladder removed 7 years ago, and I am still cancer free. Listen real close to your Urologist, mine convinced me that bladder removal was the best option available. Read my web-page for more info. My Web Page is in the Personal Web Pages under Santiago.
  • paulf
    paulf Member Posts: 13
    #5
    santiago said:

    I had my bladder removed 7 years ago, and I am still cancer free. Listen real close to your Urologist, mine convinced me that bladder removal was the best option available. Read my web-page for more info. My Web Page is in the Personal Web Pages under Santiago.

    Thanks for responding to my posting. Actually, I had already read your web page and it really helped to lift my spirits; believe me they need it.

    I'm starting to pull myself out of the hole and am being more proactive. I have an appointment with an oncologist prior to an appointment with my surgeon. I want to have a more comprehensive view of things and ensure myself that the rest of me is okay. I also went online and found a urologist/oncologist who specializes in bladder tumors and urinary diversion. He practices at Emory University, a top teaching school/hospital in Atlanta. I feel that my surgeon has done a good job with me so far (other than communication and bedside manner) but I think I want this guy for the actual bladder removal.

    You don't know how your web page and letter helped me. When I actually know something and have put this behind me I hope to be able to be of help to others too.

    Hablas espanol?

    Sincerely,

    Paul Fontana
    Cohutta
  • Raysbw7
    Raysbw7 Member Posts: 3
    #6
    I also would urge that you have the bladder removed as soon as possible. My husband had his removed, and they thought they got it all; his was high-grade transitional, also. Well, the tumors sent cells to his pelvis, and the cancer is there, now. He had 8 months cancer-free, and was happy about that, but now he thinks that the cancer will kill him, because this time it is inoperable. Please do what you have to, to take care of yourself; your doctors can only do so much, and you have to do the rest. Maybe this sounds harsh, but it is what we have to live with, every day. He now has internal bleeding from somewhere (don't know where) and his urethra is stopped up, probably from blood clots. He had a blood clot in his leg, and they put him on Coumadin; I think that's what is messing him up now. Since he is bleeding internally, they took him off of it. We'll see what the CT scan says, this afternoon. You have my very best wishes, hon. :)
  • DoubleKnot
    DoubleKnot Member Posts: 41
    #7
    Hello Paul,

    I see that your post was in Oct. and I sure hope by now, you have received the surgery to illiminate the problem. Please don't wait too long! My husband had his bladder and prostrate removed because the cancer was into the muscles of the bladder. He waited too long. He had been passing blood for months, but didn't tell me. He had the Cystectomy w/Ileo Conduit. He has been wearing the Ostomy Bag for about one and one half years now. As I said, he waited too long, because now the doctor thinks that the bladder cancer metastasized to his lung and possibly elsewhere. A suggestion, if you have this operation, have a "Stoma Specialist" to instruct you on how to change your bag and to tell you what the best flange and bag is to use on yourself. The RIGHT FLANGE AND BAG is very important and use an Ostomy Belt to help hold the bag and flange securely next to your body. If you or any of the readers, are having trouble because maybe the wrong flange was put on them and there is leakage, I will be more than glad to send the info. to you about the BEST flange and bag to stop the leakage problem. It was extremely rough, when my husband had the problem with the leakage and absolutely none of the nurses could help with it. It took a Stoma Specialist from out of town, to come to our home and to know what the problem was and that was the wrong flange. She was like an Angel since by God, when we didn't know what to do to correct the problem. IF you don't feel comfortable with the diagnosis, get a second opinion though. The best of luck to you!

    If you need info.I will be glad to help with any info. that I have learned from my husbands surgery and ordeal, and from the Stoma Expert.

    Sincerely,
    DoubleKnot
  • DoubleKnot
    DoubleKnot Member Posts: 41
    #8
    Raysbw7 said:

    I also would urge that you have the bladder removed as soon as possible. My husband had his removed, and they thought they got it all; his was high-grade transitional, also. Well, the tumors sent cells to his pelvis, and the cancer is there, now. He had 8 months cancer-free, and was happy about that, but now he thinks that the cancer will kill him, because this time it is inoperable. Please do what you have to, to take care of yourself; your doctors can only do so much, and you have to do the rest. Maybe this sounds harsh, but it is what we have to live with, every day. He now has internal bleeding from somewhere (don't know where) and his urethra is stopped up, probably from blood clots. He had a blood clot in his leg, and they put him on Coumadin; I think that's what is messing him up now. Since he is bleeding internally, they took him off of it. We'll see what the CT scan says, this afternoon. You have my very best wishes, hon. :)

    Hello Raysbw,

    You mentioned that your husband had bladder cancer and it metastasized to the pelvic area and he is going to have a CT done on him. I hope that you received good news for a welcome change.

    My husband also had bladder/prostrate cancer approx. 1 1/2 years ago and now he has to have a Pet Scan, because they think that the cancer has metastasized to his lung and possibly elsewhere. The whole body Pet Scan will give us definite answers. My husband also had a massive stroke many years ago, so this is just the latest thing to hit him. Because of his stroke I guess, he didn't tell me that he was having problems with passing blood, so that I could see that he received the necessary medical attention.

    I/We don't know what the outcome will be on the Pet Scan, we will just have to wait and see and then deal with it. It definitely is a challenge in our daily lives, isn't it? We should know around Christmas time what we will be facing in the future. Between the Oncologist and the Urologist, they have been kept busy diagnosing and caring for my husband. Hopefully, it will be good news ahead.
    You are not alone in what you guys are going through. I understand very well. Keep your chin up and take care.

    Sincerely,
    DoubleKnot
  • paulf
    paulf Member Posts: 13
    #9
    Raysbw7 said:

    I also would urge that you have the bladder removed as soon as possible. My husband had his removed, and they thought they got it all; his was high-grade transitional, also. Well, the tumors sent cells to his pelvis, and the cancer is there, now. He had 8 months cancer-free, and was happy about that, but now he thinks that the cancer will kill him, because this time it is inoperable. Please do what you have to, to take care of yourself; your doctors can only do so much, and you have to do the rest. Maybe this sounds harsh, but it is what we have to live with, every day. He now has internal bleeding from somewhere (don't know where) and his urethra is stopped up, probably from blood clots. He had a blood clot in his leg, and they put him on Coumadin; I think that's what is messing him up now. Since he is bleeding internally, they took him off of it. We'll see what the CT scan says, this afternoon. You have my very best wishes, hon. :)

    Thanks for answering. I felt the same way but have since found a urologist/oncologist at Emory University Hospital in Atlanta. I think that he is pretty cutting edge and he said to forget about having my bladder removed; that what I have is very treatable. He did what he calls a "rollerball" technique, which cauterized the surface of the bladder. Then he filled the bladder with Mitomycin, an antibiotic and anti-cancer agent. I'll go back for more treatments of BCG and Interferon (http://blcwebcafe.org/interferon.asp). I really feel that I'm doing the right thing.

    I hadn't seen this post untill today, but I hope that all went well with your husband. Please let me know.

    Paul
  • paulf
    paulf Member Posts: 13
    #10
    DoubleKnot said:

    Hello Raysbw,

    You mentioned that your husband had bladder cancer and it metastasized to the pelvic area and he is going to have a CT done on him. I hope that you received good news for a welcome change.

    My husband also had bladder/prostrate cancer approx. 1 1/2 years ago and now he has to have a Pet Scan, because they think that the cancer has metastasized to his lung and possibly elsewhere. The whole body Pet Scan will give us definite answers. My husband also had a massive stroke many years ago, so this is just the latest thing to hit him. Because of his stroke I guess, he didn't tell me that he was having problems with passing blood, so that I could see that he received the necessary medical attention.

    I/We don't know what the outcome will be on the Pet Scan, we will just have to wait and see and then deal with it. It definitely is a challenge in our daily lives, isn't it? We should know around Christmas time what we will be facing in the future. Between the Oncologist and the Urologist, they have been kept busy diagnosing and caring for my husband. Hopefully, it will be good news ahead.
    You are not alone in what you guys are going through. I understand very well. Keep your chin up and take care.

    Sincerely,
    DoubleKnot

    Thanks, DoubleKnot. As you can see above in my response to Raysbw7, I think that I've gotten the right help. Before I found the urologist/oncologist at Emory I think I was getting the best level of care that my urologist could give but that's all. It was when I mentioned neobladder surgery to him that he said if that was I wanted (should he have to remove the bladder) he would have to send me out of town. When I showed him the credentials of the Emory doctor he said that that's who I should see. I feel confident that my new guy is doing the right thing.

    Please let me know how you and your husband are doing. Merry Christmas!

    Paul
  • sheridan
    sheridan Member Posts: 14
    #11
    paulf said:

    Thanks for answering. I felt the same way but have since found a urologist/oncologist at Emory University Hospital in Atlanta. I think that he is pretty cutting edge and he said to forget about having my bladder removed; that what I have is very treatable. He did what he calls a "rollerball" technique, which cauterized the surface of the bladder. Then he filled the bladder with Mitomycin, an antibiotic and anti-cancer agent. I'll go back for more treatments of BCG and Interferon (http://blcwebcafe.org/interferon.asp). I really feel that I'm doing the right thing.

    I hadn't seen this post untill today, but I hope that all went well with your husband. Please let me know.

    Paul

    I had two surgeries (Dec 2003)(Jan 2004) for removing three tumors and the scraping and biopsy by oncology urologist, and so far that seems to work. My last cystoscopy Dec. 14 showed no cancer. I know removal of bladder and making a new one from intestines is done but I am not sure if I could live with that. Being an eunich and having to wear diapers seems to me a terrible reduction in the quality of life. I think that this factor has to be weighed when considering such a drastic measure like removing the bladder and prostate and leaving my penis just a leaky hose. On the other hand there is a case for surviving cancer at any cost to quality of life. I am just glad I didn't have to make this kind of decision.
  • paulf
    paulf Member Posts: 13
    #12
    sheridan said:

    I had two surgeries (Dec 2003)(Jan 2004) for removing three tumors and the scraping and biopsy by oncology urologist, and so far that seems to work. My last cystoscopy Dec. 14 showed no cancer. I know removal of bladder and making a new one from intestines is done but I am not sure if I could live with that. Being an eunich and having to wear diapers seems to me a terrible reduction in the quality of life. I think that this factor has to be weighed when considering such a drastic measure like removing the bladder and prostate and leaving my penis just a leaky hose. On the other hand there is a case for surviving cancer at any cost to quality of life. I am just glad I didn't have to make this kind of decision.

    I'm glad that everything has worked for you so far. I really hope that you stay cancer free. My cancer is high grade and seems to be more aggressive. August, October and December surgeries and biopsies have shown it's still there. In December, after the biopsy, my new urologist/oncologist at Emory in Atlanta did an electrical cauterization of the bladder lining followed by an instillation of mitomycin. In another 10 days I'll go for 6 weekly instillations of BCG and Interferon, then a wait of 6 more weeks and then another look. I'm hoping that this takes care of it. You didn't mention how old you are but I'm 63 and while the thought of being impotent doesn't exactly thrill me (no pun intended) I'll take it over the alternative, which is having it eventually kill me. I'm glad that you didn't have to make that choice and I hope that I don't either. I'll be updating my personal web page (The Beginning...) as my treatment progresses. Right now it can only be seen by browsing but take a look if you can find it. I wish you continued good luck.
  • Military
    Military Member Posts: 31
    #13
    Your Doctor's report sounds exacly like mine roughly 10 months ago. I went through two procedures to have the tumors removed only to have them come back in a month. The cancer was considered high grade. I opted to get a second opinion. In this case I used the USC NOrris cancer center. My doctor was a David Skinner who is the Head of Urology at USC. I had what is described as a Radical Cystecomy with Continent Urinary Reservoir. This is osmetimes refered to as a Kock Pouch. Dr. Skinner is one of the best in the world and your Urologist has probably heard of him. Their office is able to refer you to a doctor who trained in this procedure in your area. Simply put they remove the bladder and make a new bladder from your lower intestine. This procedure allows you to urinate just as in the past. You can go scuba diving, swim in a pool and ride a Harley or play golf. If your concern is the removal of the prostrate, you can have a penile pump implanted at the same time as the operation. This allows you to function as in the past only better. My cancer had not progressed into the muscle or lymph nodes. I had the operation in July and recovered fully in four months. The doctors concerns were that not to operation quickly only contributed to the potential that the cancer could spread. Once the operations was over, they confirmed that I was cancer free and there was no need for chemo or radiation. The USC/Norris Cancer Hospital can be reached at 323.865.3000. Their e mail address is www.uscnorris.com. I would suggest that you consider this procedure. I can be reached at chooser@earthlink.net. If you get a reject notice it is my computer set up to segregate e mails from people that I have not communicated with. I will get your e mail. In order for me to identify it immediately just list in the subject "bladder cancer". Feel free to contact me.

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