Newly Diagnosed

Hi I am Holly. Iwas diagnosed with high grade bladder cancer 1 week ago. Had surgery 2 days later. They took a 2.5 cm tumor from the top of my bladder. It had got thru most of the muscle so they also took a portion of my bladder. I have not been told specifically what stage I am, but the tumor was very aggressive and they suspect lymphovascular invasion. The urologist is suggesting BCG and wait and see. I am a breast and cervical cancer survivor and I am not convinced this is the best way. I am 42 female, and a newly wed of 6 weeks. I would like to get some sound advice on how you decided to proceed. I am trying to get in to CTCA asap to evaluate options. Thank youand God bless you all :)

Hi again, I decided to call the pathologist so I know what stage etc. She said it was a grade 3 stage T2 atleast with suspected lymph invasion. That without the full bladder in pathology it could be a T3 or T4 . Any input is appreciated. God Bless

 

On 2/5/2007 Bloomin64 wrote:

Hi again, I decided to call the pathologist so I know what stage etc. She said it was a grade 3 stage T2 atleast with suspected lymph invasion. That without the full bladder in pathology it could be a T3 or T4 . Any input is appreciated. God Bless

Hi just wanted to show my support and to let you know you are not alone with your questions. I found I really good web site for Bladder Cancer at www.blcwebcafe.org There you will find people who have been there and maybe can answer some questions. I know how disapointing it can be when you can't find the answers you are looking for. I have a very rare cancer that started from my belly button and went through my bladder and I have had one operation to remove half , but know doc's see cat scans showing signs of cancer again so I am going to have the hole Bladder removed because they have no other cure for urachal cancer ( Belly Button Cancer) I hope to hear that you have found some support from this site and maybe the one I suggested.

Hi and thank you for the support. I have been reading posts here and at the cafe -learning much, praying much. Will you be getting a neobladder if you lose the other 1/2 of the bladder?

   My last week has been overwhelming...The BCG wait and see really didn't set ok. Thru reading others posts I learned about the top 40 cancer hospitols and the 2nd opinion programs. I was at  a local oncologist for review and was told perhaps a more aggressive approach was warranted: removing a portion of my bladder, chemo and radiation in strong ammounts. Then yesterday I was reviewed at University of Wisconsin Madison. They feel the bladder MUST be removed after they do many more biopsies to be sure the cancer is out and the bladder neck is ok. That the grade cancer I had/have is extremely dangerous and likely understaged. The DR does 2 neobladders a week and said chemo would still be used as this cancer accessed my lymph and blood sysytems.

  I am again, stunned at the range of treatments. I am inclined to believe the UW Madison based on reputation. Any thoughts here would be so appreciated. God Bless

 

On 2/9/2007 Bloomin64 wrote:

Hi and thank you for the support. I have been reading posts here and at the cafe -learning much, praying much. Will you be getting a neobladder if you lose the other 1/2 of the bladder?

   My last week has been overwhelming...The BCG wait and see really didn't set ok. Thru reading others posts I learned about the top 40 cancer hospitols and the 2nd opinion programs. I was at  a local oncologist for review and was told perhaps a more aggressive approach was warranted: removing a portion of my bladder, chemo and radiation in strong ammounts. Then yesterday I was reviewed at University of Wisconsin Madison. They feel the bladder MUST be removed after they do many more biopsies to be sure the cancer is out and the bladder neck is ok. That the grade cancer I had/have is extremely dangerous and likely understaged. The DR does 2 neobladders a week and said chemo would still be used as this cancer accessed my lymph and blood sysytems.

  I am again, stunned at the range of treatments. I am inclined to believe the UW Madison based on reputation. Any thoughts here would be so appreciated. God Bless

Sorry to hear all the bad news and I hope some how it will turn on a more sunnier note soon. It took a very long time for me to come to terms with the fact that I will have a neo Bladder at the age of 35. I felt cheated out of a fulling life but as time has passed I can't wait until Feb.19 to have the surgery.I think I realized that I could die and my kids could lose their mother and that was far more scary than losing my bladder and I am going to have this operation done to give my kids what they deserve a happy and healthy mom no matter what it cost me. Life is alot of hard lessons and it teaches what really matters , cancer is tough but we are tougher. 

Take care

P.S have you tried the other web site I told you about?I think you could really find alot of help from the people there. I don't know that much about regular Bladder cancer because thats not where my cancer started so the treatments are much different. This is the only connection I have to relating to somewhat of the same experiences I have had.

www.blcewbcafe.org

  Hi Daisy,

   Yes I have been to the other website, and then some. As much as I am getting educated on the medical realities of the cancer, I am also getting exposure to the emotional side too. Just on Friday my cath was removed and at first things seemed to work fine. On Saturday I was having pain and trouble urinating again. On Sunday morning there was blood in the toilet and I almost hyperventilated. I called DR terrified. Feeling "safe" seems to be a distant memory.

   On Wednesday the Dr is doing frozen section biopsies to see if my bladder neck is ok and to be sure the margins are clean. Then he will telll if I can neobladder, idiana bag or if a stoma is the best I can do. The anxiety level is about overwhelming.

   The 1st DR who did the TUR and tumor removal 10 days ago is no longer my DR. He got very upset that I am not trusting the BCG to be effective based on the 2nd opinion from UW MAdison. I asked him to still be my urologist after the UW treatments and that will not be ok by him. UW DR even called ( with some operative note questions) and the treatment was argued. This happen with anyone else?

     I trust my UW DR and I feel confident with how we are proceeding to beat the cancer. I am trying to gain more control over the freaking out moments but they seem to come out of nowhere. This is normal?

   Thank you for the input and support, I wish all the very best and God Bless, Holly

On 2/5/2007 Bloomin64 wrote:

Hi I am Holly. Iwas diagnosed with high grade bladder cancer 1 week ago. Had surgery 2 days later. They took a 2.5 cm tumor from the top of my bladder. It had got thru most of the muscle so they also took a portion of my bladder. I have not been told specifically what stage I am, but the tumor was very aggressive and they suspect lymphovascular invasion. The urologist is suggesting BCG and wait and see. I am a breast and cervical cancer survivor and I am not convinced this is the best way. I am 42 female, and a newly wed of 6 weeks. I would like to get some sound advice on how you decided to proceed. I am trying to get in to CTCA asap to evaluate options. Thank youand God bless you all :)

Hi Holly, I'm Tom in Atlanta, I was diagnosed with bladder cancer last summer (series of small turmors located at the entrance to the bladder). My UR suggested the BCG treatment-I went through 6 sessions and the turmors left. My Oncologist said to wait until April and then do a CAT scan, like you I'm not content with a passive approach, I prefer an aggressive approach. I sought and was given a 2nd opinion by another Onc. Dr. who agreed with the first. Waiting is driving me nuts and I just might try another opinion at MD Anderson in Texas (who have an outstandin reputation in 'cancer') If I do I'll post the results. Hang in kido, by the way what is CTCA?