Not Really Sure Where I Belong

moomaus
moomaus Member Posts: 8
edited March 2014 in Bladder Cancer #1
Hello all. I'm not new to cancer but I'm new to this board. Don't know if I should be in the bladder cancer or kidney cancer group but all help or direction would be greatly appreciated. My husband has been a six year survivor of stage III colon cancer and just received his officially cured credintials September 2009. About three weeks ago, without any warning whatsoever, he experienced visible blood in his urine. We didn't waste any time and after seeing his internist, went straight to a urologist and while there was no more visible signs of blood, under the microscope, there still was. Given his colon cancer history, a ct scan was order which showed no tumors but a shrinkage of the right ureter. By the way, his scans in September for the all clear of colon cancer showed ABSOLUTELY NOTHING. He then went for a ureoscope (?) and they found what they believe are two tiny tumors in his right ureter...one near the bladder, the other near the kidney. Make a long story short and while we don't have the pathology report yet, they are moving quickly and he is scheduled for surgery December 31, 2009 to have his kidney and right ureter removed (no mention yet about the bladder as apparently it is all clear. I find so little information on this subject as I know this is a very uncommon form of cancer; highly cureable if in the early stages, not so great if not. All indicators thus far show that it is contained within the ureter but how can something like this not show up two months ago and now it's there. Please to anyone, advice, encourage, information, whatever would be so greatly appreciated. Thank you.

Comments

  • dukers101
    dukers101 Member Posts: 14
    #2
    Hi,
    Wondering how you made
    Hi,
    Wondering how you made out. My husbands cancer was in the ureter and after years of treatment, he had to have his bladder removed last week as it has a very high occurence rate of moving into the bladder.Just curious as to what they ended up finiding in your husbands case.
    Good luck
  • Frank Fitz
    Frank Fitz Member Posts: 19
    #3
    Surgery Update
    How did the surgery go? I had my kidney, ureter and bladder cuff removed 1/22/10 and now on the mend. Curious about your husband. Hope it went well!
  • dukers101
    dukers101 Member Posts: 14
    #4
    Frank Fitz said:

    Surgery Update
    How did the surgery go? I had my kidney, ureter and bladder cuff removed 1/22/10 and now on the mend. Curious about your husband. Hope it went well!

    Hi,
    His surgery went fine- 6
    Hi,
    His surgery went fine- 6 1/2 hrs as they were able to create a bladder without him having to end up with a bag which is what he wanted-spent 7 days in the hospital and now on the mend. He is having quite a bit of pain and is on pain meds every 3 hrs-the trick is to take the pain meds before the pain starts!!The foctor feels he is healing well.
    How are you doing? Did they take the surrounding lymph nodes as well?
    Let me know how you are doing?
  • Frank Fitz
    Frank Fitz Member Posts: 19
    #5
    dukers101 said:

    Hi,
    His surgery went fine- 6
    Hi,
    His surgery went fine- 6 1/2 hrs as they were able to create a bladder without him having to end up with a bag which is what he wanted-spent 7 days in the hospital and now on the mend. He is having quite a bit of pain and is on pain meds every 3 hrs-the trick is to take the pain meds before the pain starts!!The foctor feels he is healing well.
    How are you doing? Did they take the surrounding lymph nodes as well?
    Let me know how you are doing?

    Surgery
    Glad to hear the surgery went well. I hope the pain subsides soon.

    I am doing better each day. No they did not remove any nodes as there was no evidence of its spreading. Fatigue comes and goes but is tolerable so far.

    Take care.
  • louisa1
    louisa1 Member Posts: 2
    #6
    Hope things are better in your world
    I read you posting and was happy to hear that they think they have contained the spread of this rare form of cancer. I too have been dx with Urothelial Carcinoma and have been searching for information and treatment options. I am now minus my left kidney, ureter and bladder cuff but they did find some microscopic cells in the fatty tissue outside the ureter tumor site. So it looks like we are going to be dealing with this for some time. I will be heading to a cancer center in March to see what out next steps are. I still feel like I am walking around in some kind or alternate world and that this is not happening. How can you have cancer and not have any symptoms, no pain, none of the symptoms that read about. Please let me know how things are going in your world. I will keep positive thought for you. Louisa
  • Frank Fitz
    Frank Fitz Member Posts: 19
    #7
    louisa1 said:

    Hope things are better in your world
    I read you posting and was happy to hear that they think they have contained the spread of this rare form of cancer. I too have been dx with Urothelial Carcinoma and have been searching for information and treatment options. I am now minus my left kidney, ureter and bladder cuff but they did find some microscopic cells in the fatty tissue outside the ureter tumor site. So it looks like we are going to be dealing with this for some time. I will be heading to a cancer center in March to see what out next steps are. I still feel like I am walking around in some kind or alternate world and that this is not happening. How can you have cancer and not have any symptoms, no pain, none of the symptoms that read about. Please let me know how things are going in your world. I will keep positive thought for you. Louisa

    Treatment
    Where did you have the surgery done? I am curious about any treatment options you may learn about from the next clinic you go to. I realize that finding cells in fatty tissue was not good news but hopefully that means they can treat that area in some way. Prayers that all turns out well. Keep us posted please.

    Frank
  • moomaus
    moomaus Member Posts: 8
    #8
    dukers101 said:

    Hi,
    Wondering how you made
    Hi,
    Wondering how you made out. My husbands cancer was in the ureter and after years of treatment, he had to have his bladder removed last week as it has a very high occurence rate of moving into the bladder.Just curious as to what they ended up finiding in your husbands case.
    Good luck

    To dukers101
    Sorry for the long, long delay in getting back. Just posted a new post today. We made out well after surgery but alas, as indicated in the new post, his first cysto was yesterday and there are three tumors in his bladder...that after having the tumor in his ureter removed on December 31,2009!!! Can't believe it! Three friggen tumors after three months. Pathology after surgery did show well contained T1 transitional cell tumor but high grade...grade 3. No further treatment was recommended after surgery but I'm finding out more and more that a few rounds of BCG wouldn't have hurt! He's scheduled to have these three new tumors removed next week and then BCG! We are planning to leave for Europe in two weeks but will absolutely postpone as I'm thinking the six straight weeks of BCG would be better than just one treatment, then none for five weeks, and then resume. Again, sorry for the delay. How are things with your husband?
  • moomaus
    moomaus Member Posts: 8
    #9
    Frank Fitz said:

    Surgery Update
    How did the surgery go? I had my kidney, ureter and bladder cuff removed 1/22/10 and now on the mend. Curious about your husband. Hope it went well!

    Hi Frank and sorry for the long delay in getting back. I've noticed responses on this board take a long time...I'm trying to find a board where you don't wait so long. When I was on the colon cancer board, man I hardly got a question posted and within an hour, there were five or six answers and more as time went buy. At any rate, surgery went fine but it's already back...the cancer, that is. Now in the bladder. See me response to dukers101 for more details along with a brand new post that I did today. Hoping things are well for you....Monika
  • dukers101
    dukers101 Member Posts: 14
    #10
    moomaus said:

    To dukers101
    Sorry for the long, long delay in getting back. Just posted a new post today. We made out well after surgery but alas, as indicated in the new post, his first cysto was yesterday and there are three tumors in his bladder...that after having the tumor in his ureter removed on December 31,2009!!! Can't believe it! Three friggen tumors after three months. Pathology after surgery did show well contained T1 transitional cell tumor but high grade...grade 3. No further treatment was recommended after surgery but I'm finding out more and more that a few rounds of BCG wouldn't have hurt! He's scheduled to have these three new tumors removed next week and then BCG! We are planning to leave for Europe in two weeks but will absolutely postpone as I'm thinking the six straight weeks of BCG would be better than just one treatment, then none for five weeks, and then resume. Again, sorry for the delay. How are things with your husband?

    I would recommend your husband having the BCG treatment- if this would be like an extra insurance policy, then he should do it. SOme things I have read, recommended chemo as a back up measure. I did not check into this further as my husbands doctor said this would not be for him. He has been in and out of the hospital 3 times with septis- infection that landed him in the hospital anywhere from 4 to 8 days and almost died from these infections. he is doing better now during the day but s wearing diapers all the time. AWhen he falls asleep, he looses control an is very frustrated with the recovery process even though his doctor feels he is doing very well. I think this trip you have planned is going to be hard on him especially when and if he does the BCG treatments- it does wipe you out.Plus he is having surgery-would not be going anywhere right now. Maybe a different kind of trip-not sure where you live but gong somewhere close by. Let me know how you make out-best wishes

Discussion Boards