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introduction, my situation

2 years 11 months ago #50256 by jimjeffcoat

sara.anne wrote: your reading is correct....the nasty little secret about low grade bladder cancer IS that is does tend to recur. This is why the exam schedule that your doctor proposes is critical. You must be scrupulous about keeping those appointments! I am now 8 years out, on yearly exams, and still cancer-free.

Like you, I was never a smoker but my husband was (died of lung cancer) so I sometimes wonder if second-hand smoke was not a factor. But we will never know.

One more thing, be sure to get copies of the pathology reports for your records. The more information you have the better off you will be.


No worries about keeping my appointments. I've been followed by an oncologist & dermatologist since being treated for metastatic melanoma in the early 90s. (By staging I was in the 30% 5-year survival group at the time of that diagnosis, so I consider myself blessed). And my wife is about 3 years out from low grade mucoepidermoid carcinoma of the parotid gland, still has regular follow up with the head&neck surgeon. So just one more to add to our already full plate of Dr visits!

I do have a copy of my pathology. Plus I should be able to access my records through the "patient portal" - but it takes a while for records to show up there, think they wait till they are "officially" signed by the providers before they post stuff.

Also I work in health care, so am certainly aware of the importance of keeping everything current.

Thanks for all your kind words, it looks like a very friendly community - and I have double reason for being here, both as a patient and family member.

Jim/OKC

TURBT w/ Mitomycin 12/14/15 (PUNLMP)
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2 years 11 months ago #50255 by sara.anne
Jim, so sorry you are joining us....but we are a great bunch! Papillary uorthelial is probably the most common presentation of bladder cancer, but it IS cancer. My first diagnosis was papillary. A few months later CIS was found also. And your reading is correct....the nasty little secret about low grade bladder cancer IS that is does tend to recur. This is why the exam schedule that your doctor proposes is critical. You must be scrupulous about keeping those appointments! I am now 8 years out, on yearly exams, and still cancer-free.

Like you, I was never a smoker but my husband was (died of lung cancer) so I sometimes wonder if second-hand smoke was not a factor. But we will never know.

One more thing, be sure to get copies of the pathology reports for your records. The more information you have the better off you will be.

Wishing you the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 11 months ago - 2 years 11 months ago #50254 by Alan
Hey thanks for the comeback on the football and the part your family played in baseball. I find history fun be it sports, politics, and in general.

Sounds like you have a good grasp of your bladder cancer! As you said checkups are the key. While I am now on yearly, I don't miss any plus I schedule my annual physical 6 months apart from the scope to do a cytology, mainly because mine was high grade.

Visit this forum anytime! Good luck to you!

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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2 years 11 months ago #50252 by jimjeffcoat
My tumor was very small, and my urologist is very confident it was 100% removed. The issue with the PUNLMP is that even though they rarely become malignant, they tend to recur at other sites within the bladder. So I will be getting flexible cystoscopy in the office at 3 months, 6 months, and yearly thereafter. If another one pops up, then most certainly I would be looking at another TURBT to remove it. Don't know if they would do Mitomycin again, since my first tumor wasn't actually malignant. That's something I will need to ask my urologist about the next time I see him.

And, no, I am not related to the Jim Jeffcoat of Dallas Cowboys fame. But I've certainly been asked about that more times than I could count. I followed his career pretty closely while he was playing, he was a great defensive end. Was a defensive line coach for the Cowboys for a few years after he retired, think he coaches at the college level now. Used to (maybe still does) own an Allstate insurance agency in the DFW area. His kids are all star athletes, has a son that plays college football, I think.

Now my dad did have a first cousin named Hal Jeffcoat who played major league baseball. Should be a short Wikipedia article on him. Unfortunately, Hal passed away a few years ago. Was both a pitcher and outfielder, if I recall.

Jim
Oklahoma City

TURBT w/ Mitomycin 12/14/15 (PUNLMP)

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2 years 11 months ago - 2 years 11 months ago #50247 by Alan
Jim,

A second TURB is often done to verify "margins" were reached on the pathology. So, yes, a second may be done. It does sound your 1st was thorough-maybe just a second opinion via another pathology study might be worthwhile and maybe would preclude a second TURB if clear. Personally, my URO did not like my report and did a second because of this. I know a good number on this board have sent their slides to John Hopkins for viewing. This is all conjecture as I am not a doctor nor do I know all of your facts/factors.

It is great to read about a person at 90 doing well beating this disease. It is good for all of us! Sounds like you and your Dad have a wonderful relationship!

Gotta ask. Are you part of the great football family?

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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2 years 11 months ago #50238 by jimjeffcoat
Thanks for your reply. Have done a bit of reading on the PUNLMP and, as the name suggests, seems unlikely to spread or become malignant. But it looks like they have a tendency to recur, so I may be looking at another TURBT at some point in the future. The one I had was NOT fun, the pain voiding was excruciating for about a week. (Not sure how much of it was due to the surgery itself or the Mitomycin).

With regards to my dad, he is a most remarkable man. He just turned 90, lives alone, still drives, and takes exceptionally good care of his urostomy. He has become better at managing the ostomy appliances than the wound care nurses at the hospital, and has showed them several tips and tricks he has picked up on his own to help it last longer and not leak. If I'm in half as good a shape by the time I'm 80, I'll be truly fortunate. (I'm 56 right now, BTW.)

Jim / OKC

TURBT w/ Mitomycin 12/14/15 (PUNLMP)
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