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Information about a partial Cystectomy

10 years 2 months ago #21802 by Cynthia
This is a reply from Sherri; hopefully by tomorrow we will have here online with us so she can post.

Thank you to everyone who responded. I will be a member soon and will be able to chat more often. I am going to a Harvard teaching hospital and feel comfortable with my urologist.None of my slides showed muscle invasion but they believe it went up to the muscle wall.I am meeting with the Dr. next week to discuss everything with him so I should know more then.Please send me any information you have. I am very new to all of this.Thank you for your support.


Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 2 months ago #21796 by Webs
Sherri,
So sorry you are going through this. I was diagnosed in April. For a very short time they talked about doing a partial cyctectomy on me. My Tumor was at the dome of the bladder and they thought it might have a urachel origin. After my biopsy it was clear that it was not and that it was muscle invasive. My doctor was very adament in his belief that if there is muscle involvement that a radical cyctectomy was necessary.

I know that this is a hard time with some tough decisions to be made. Make sure you get your information from very qualified people. I am 39 now and know that I will be around for my 9 and 12 year for a long time. If you need to talk I am in the chat room a lot or you can email me.

Webs

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10 years 2 months ago - 10 years 2 months ago #21794 by Patricia
Sherri......they THINK it is muscle invasive? If your pathology slides were sent to Memorial Sloan i think they would have been definative on that. Were the slides not good enough to make a diagnosis? I've never heard of a partial done on muscle invasive bladder cancer. Where are you being treated? I would seek a second opinion in person at a major medical/cancer center.
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4HMVSN6-3M&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_version=1&_urlVersion=0&_userid=10&md5=9079fbf7bb6eec6a6e2dddea63dc0fb7
By the way i was also muscle invasive low grade and second opinion at MSK..my blood work was perfect, my CT and chest x-rays clean but for the blc, my bone scan perfect. Dr. Herr did my second TURB and removed what the first uro did not get out and got all the margins and all of the cancer from the first layer of muscle. I think he saved my life with his magical scalpel. I then went on to have a cystectomy and Indiana Pouch and i'm still clean going on 6 yrs........Pat
P.S. found this
Germ cell, bladder and other non-trophoblastic malignancies
Non-trophoblastic cancer cells, germ cell tumors (dysgerminoma and testicular tumors), bladder cancer, ovarian cancer and certain other malignancies may generate a small amount of hCG alpha and beta subunit. Commonly, the amount of subunit is insufficient for combination to occur to make intact hCG. In these cases, variable concentrations, commonly very low concentrations (<100 mIU/ml) of free ß-subunit is present in the serum, and low concentration of predominantly ß-core fragment (the terminal breakdown product of ß-subunit) in urine samples. The free ß-subunit in serum may be detected by total hCG assays (detect intact hCG and free ß-subunit). Often the most sensitive marker for these disease may be ß-core fragment in urine.

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10 years 2 months ago #21791 by Alan
Sherri,

All I can say is Sloan Kettering is highly respected and you are in good hands. I would encourage asking lots of questions. It would be just speculation but, as you said the scan was clean & blood work was good then you have something good to hang on to. I am almost a newbie being DX;d 5 months ago-non invasive papillary ,small tumor taking BCG for now. Feel free to get set up with this site. It is WONDERFUL and Cynthia does a great job. Take one day at a time-I know that isn't easy. Would hazard a guess in a year you'll look as this a just a bad stretch.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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10 years 2 months ago - 10 years 2 months ago #21789 by Cynthia
The following is from a new user Sherri. She is having a little problem getting signed in and while we are working on it, I told her I would post this for her so that she could start hearing from others.

I am 45, married and have a 6 year old and am very scared. I was bleeding over the summer and went to my OB and they said I had a non viable pregnancy. I had positive HCG ( a hormone that detects pregnancy in my blood). I spend all summer trying to get rid of the pregnancy because they thought it could be tubal and would be dangerous if they didn't find it. I had day surgery and my OB checked my entire pelvic area and tubes and found nothing. She called me and said I had to have a CT scan because it is very rare but I might have a tumor in my chest or liver. Turns out I had a mass in my bladder. It is very rare for bladder cancer to have HCG in it. I had it removed and they think it invaded the wall of the muscle. After several opinions and my pathology being sent to Sloan Kettering and everywhere else I am having a partial cystectomy. It is localized. The thing that is scarey is they said eventhough all my scans are clean and my blood is normal and my OB surgically examined my pelvic area they can not give me any type of diagnosis until they partially remove my bladder and sent it into pathology. They said it is a good sign that my blood is normal and I had they day surgery but they won't be sure until they do the partial. My surgery is in 2 weeks and I wanted to find out information about a partial and what my recovery will be like as what my chances good pathology is.

Thanks for your help.

Sherri


Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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