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Ready to tell my story

8 years 5 months ago #40430 by rbmc
Hi Sally......
glad you had fast action, although a rough start. I went home with the cath/bag after the first trip too, adding to the anxiety of "how bad was it?". And finally realizing/accepting that BC is a long term journey, not just removing a cancer and its gone. You sound confident with the MD, but a second opinion, if nothing else, may reassure your approach, or recommend changes. Take time now to enjoy that wedding. You want to be around to spoil those grandkids. RB

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8 years 6 months ago #40359 by DougG

Hope your surgery goes well on Monday. Congratulations on your daughter's upcoming wedding! I would say focus on your recovery and the wedding until after the first of the year and then pursue a 2nd opinion. If you tell us what state you live in, several people can help recommend the place to go for the 2nd opinion.


PS Hope your surgery this time is easier than last (with no catheter).

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8 years 6 months ago #40345 by Cynthia
Sally it is always a good idea to get a second opinion when dealing with any cancer. If nothing else it is a reality check to make sure that you are going the right route.

Keep in mind that having low grade bladder cancer is a case of surveillance to make sure that it does not upgrade of progress. Low grade is the best case scenario as far as bladder cancer goes but find a doctor you trust because you will be dealing with them for rechecks for a very long time.

At fist for all of us this is a lot to wrap our mind around but with time it becomes part of our lives.

I am sorry you have to be here but welcome to our community.

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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8 years 6 months ago #40344 by Lynda
Hi Sally -

Sorry to hear that your having to deal with this again. It does seem to pop up at the most inconvenient time doesn't it? I have had a full RC to treat my BC and can offer a compassionate ear. BUT we have several ladies who have had treatments as you are going thru now and I know they will be chiming in soon. Keep asking questions and doing your research. I think it was a very good thing to change Drs. Confidence in the Dr. treating you can make all the difference in the world (my husband didn't like my first uro either).

Keep sending us updates. We look forward to hearing a all clear report.



3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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8 years 6 months ago #40334 by SallyZ
Hi everyone, after purusing this site on and off since being diagnosed back in late June, I am ready to share my story. I started seeing small blood clots in my urine in June. I have a history of kidney stones and assummed I again needed an ESWL of which I have had 2 before. I went to my urologist who did an in-office cystoscopy who promptly discovered I had 3 papillary tumors, in other words bladder cancer. Say what? Me? No way. I don't smoke, don't work with chemicals, exercise, eat right, am the picture of health. He explained to me the procedure of TURBT and BCG treatments and scheduled me for surgery. In the meantime my husband was not comfortable with this physician as he was quite elderly, so we asked an MD friend who he would go to if it was him and he gave us a name of another physician, who thankfully called and got me in and was able to operate on me within the next couple days as I had already had all the lab work, etc done for the other physician. The TURBT wasn't as easy as I thought, I bled more than the MD liked so he kept me overnight with the catheter in and I ended up having to go home with the catheter for a week. What a relief to get that out! I had my 1-week appointment to discuss the pathology and was diagnosed with low grade TA papillary carcinoma. He suggested BCG treatments because I was an atypical case. I completed the 6-week treatment with ease had no side effects whatsoever. Went for my 3-month followup cystoscopy last Monday and he saw a spot he did not like and biopsied it. I saw him again this Monday and good news, it was indeed another low-grade carcinoma, bad news the BCG did not work. I am scheduled for another TURBT of this area this coming Monday and I noticed on my paperwork that I received in the mail today that it says TURBT and Mitomycin so from what I have read this seems to be a standard protocol for recurrences. I trust this MD as he comes highly recommended, but I guess I would like to know what I might expect next or any questions I should be asking before the TURBT or after. I am trying to stay positive here as much as I can. Why is it timing of this kind of thing is always so wrong. My daughter gets married at the end of this month and I am so looking forward to that, but having to deal with this inbetween and put on a brave front is hard.

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