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KyLibrarian
Posts: 10
Joined: Feb 2004

My father was diagnosed with bladder cancer last month. He had surgery Wednesday, and we were prepared for a radical cystectomy and ileal conduit. However, once he was opened up, the surgeons found that the cancer had attached itself to the pelvic wall and was inoperable. He hasn't been given a timeline, but we were told that chemo and radiation may shrink the tumor and buy him some time.
We are having a hard time dealing with this. I am a 30-year-old cancer survivor myself (Hodgkin's lymphoma--2 years since diagnosis) and don't want to accept that this is terminal, even though I know it is.
Does anyone have experience with inoperable bladder cancer? What should we expect?

DoubleKnot
Posts: 41
Joined: Dec 2004

Hello KyLibrarian,

I am sorry to hear that you and your Dad are going through this horrible disease. My husband was diagnosed with bladder cancer that was invasive cancer and it had gone into the muscle. They removed his bladder/prostrate and 5 lymphnodes. He had the Radical Cystectomy w/Ileo Conduit. That surgery was in July 2004. Well now he has been diagnosed with lung cancer in both lungs, that they think is inoperable since the large tumor is right behind his heart. They thought that it was metastasized bladder cancer, but the biopsy showed that it was new lung cancer. No bladder cancer cells were found in the tumor biopsy. The other lung has several nodules and he also has cancer in the middle of his chest, plus we were told in his neck. We were told that if my husband had his left lung removed that has the large tumor in it, "it would buy him more time." Without the surgery, they told him that he had one year. I have heard that the chemo/radiation will shrink the tumors and "buy them more time." Just like with your situation, I think that they can only guess how long they have to live. Only God knows that, but still we need to know as much as possible what is going on with them. We will find out Feb.3 what the Oncologist has to say about all of this. My husband isn't going to have the surgery, since they would only be removing that one tumor along with part/all of the leftlung, and would be leaving the remaining cancers. The surgeon said that he thought that my husbands cancer/tumor was also inoperable. From here on, I will be like you and it will be just guessing and watching. I don't think that they are telling us everything, even though I have told them that I want to know all of it, even if they choose not to tell my husband. Then it would be my choice as to what my husband knows. I feel like he has the right to know the facts. The best of luck to all of you. It sure isn't an easy thing to deal with I know, I am also in the same position as you are now.

Sincerely,
Lin

DoubleKnot
Posts: 41
Joined: Dec 2004

Hello KyLibrarian,

I am sending you a site that was shared with me by "Dane" on the Caregiversrus.org site (Yahoo Support Sites). I don't know if it might be something that you would be interested in, but he said that his wife had this cyberknife radiation treatment on tumors in her brain. (from the way that I understand it) I am sure that if you go to the Yahoo Support Sites and check, Dane Gayle is the one that shared this with me. He might be able to give you more info. He "swears" by this, because he said that his wife wouldn't be here, if it wasn't for this. I hope that it helps you and your Dad. The best of luck to you both.

Sincerely,
Lin

You can read up on Cyberknife at:
http://www.accuray.com/cyberknife.htm and
http://www.bch.org/services/cancercare.cfm/CyberKnife

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