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Facing recurrence

5 years 3 months ago #45293 by Alan
This one of the best sites I have found for the pros and cons of each.

http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

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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5 years 3 months ago - 5 years 3 months ago #45278 by FarRed
Under 65 is only for the hospital I went to. Your doctor is best to answer that. I guess as long as you're in reasonable health and have the insurance.

What you are asking about is nerve/vascular sparing. Don't be shy about offending your doctor by inquiring about who is the best, especially when it comes to the prostate. Ask around, patients, nurses, etc. Ask a lot of questions about this procedure, such as if they are using robotics--I heard a report that the DaVinci may not be as great as we're told, enough that there is an ambulance chaser commercial out. I don't know about the success rate when it comes to sex after this surgery. It would be interesting to hear. Let's just say I've had issues.

Something else you might ask about. There is a "check valve" between the bladder and your kidneys-ever wonder why it doesn't back up? They take it out as part of the procedure. This means you have to be careful to urinate regularly or the back pressure can damage the kidneys. I'd ask if taking it out is necessary. Surgeons LOVE to cut.

Age: 50
Bladder cancer diagnosed Mar, 2010.
Robotic assisted laproscopic cystoprostatectomy with Studer neo-bladder, 2010.
UMC Tucson

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5 years 3 months ago #45276 by dman
Sorry this posting is so long, but have also wondering about the neo if something like were needed in the future. What are the requirements besides being under 65 to qualify? I am going to UCSF, am wondering if they would have a surgeon with enough experience to perform this or if my insurance (Blue Shield) would pay for it.

Also wondering about the prostate factor. I'm hearing some surgeons are able to peel the prostate away from the nerve endings and sex is still an option. Does anyone know if this been successful with most surgeries, and can anyone describe what having sex is like after undergoing this? I'm starting to go through the "enlarged prostate" symptoms, and am wondering if those go away when the prostate is removed.

Please forgive me if I sound a little clueless; I'm a newbie and trying to learn as much as I can.

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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5 years 3 months ago - 5 years 3 months ago #45275 by dman
Wow, just stumbled on to this and we're almost in identical situations. I was also diagnosed with lung CA in 2008 and beat it... very large neuroendocrine tumor the size of a grapefruit, got chemo, radiation, and took graviola... tumor shrunk to 2.9 cm in four months and never recurred. They wanted to remove it and do a pneumenoectomy, but I refused, and continued the treatment. My doctor has always admired me for standing my ground, but things have taken a different turn now. I'm 57, thought for the last five years I was going to remain cancer free, and on my last CT a month ago the doc asked for a PET because he thought he saw some growth in the lung. They were wrong, but coincidentally found something else lighting up on my bladder. After a cystoscopy and discovering a 2.5 cm papillary tumor, undergoing a (lovely) TURBT, and a lot of hellish waiting, I was just staged on Monday with Ta, high grade, and have an ominous feeling about it. Getting ready for BCG treatments on 9/12. Yes, I was a smoker until I was first diagnosed with lung CA, but I've spoken with a few people in the last couple of days who've have told me that it's also not unusual to develop a second cancer after undergoing chemo and radiation (and I had a lot of the latter, and the chemo pretty much wrecked me too). They said it usually recurs somewhere in the body between 5-7 years due to immunity issues from the treatment. Having a hard time dealing with the sudden letdown after thinking I'd beat this disease. This is a second type of cancer, unrelated to the first. Is yours a metastistis, or is it also a second type?

I agree that it would be a good idea to get a second and third opinion. It sounds like you're facing making some tough decisions. You didn't give a lot of detail as to what stage your bladder cancer is right now. Please feel free to befriend me and write if you feel like it. All we can both do is hang in there and try and support each other.

Doug

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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5 years 5 months ago - 5 years 5 months ago #45040 by FarRed
Congrats on beating lung cancer.

I suppose the first piece of advice is to make sure you get a 2nd and 3rd opinion. I am interested that you had chemo. That was not an option for me, unless you're referring to the TB treatment. Anyway, neos are a minor miracle, being able to walk around with a semblance of normalcy. But no matter how rosey the doctor may make it sound, neo-bladder management is no cakewalk. My doctor won't even do it for patients over 65. Half of all neo patients have to cath themselves at least once, 5-10 percent have to everyday. Some people can do this no problem--not me. I'm determined to be part of the One-timer Club.

Day time control is usually not a problem for most. I’ve heard of people even skydiving. Success with nighttime incontinence varies, and can go on for several years.

That said, for my type of cancer (papillary, carcinoma insitu, and T1 High Grade), it was a no brainer--the TB treatment had a 40 percent recurrence after 5 years, 5-10 percent for the neo. You've probably heard too many bad stories about conservative approaches to treating cancer, so opted for the neo. It was a two-month recovery until I was able to go back to work fulltime, but others fair better.

Have them check for prostate cancer now. It comes out anyway with the bladder, but it's best to know everything going in.

Finally, DEMAND the best surgeon, someone who's done the surgery for neos for many years. With all the nerve and vascular cutting they have to do, you can end up impotent, and drugs may not help this.

Age: 50
Bladder cancer diagnosed Mar, 2010.
Robotic assisted laproscopic cystoprostatectomy with Studer neo-bladder, 2010.
UMC Tucson
The following user(s) said Thank You: DougG

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5 years 5 months ago #45036 by johnny
Hi everyone,,I am newby,, 52 years old, had lung cancer,, beat it in 2008.. and now I have Bladder cancer which had 4 months of chemo to try and save it,, but a new tumor has formed and you know the rest. I have to make a choice and the more I read about the neo,, the more I wonder. .can anyone give me any advice?

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