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How fast does HG CIS & HG papillary tumors spread?

1 year 3 months ago #55658 by cltyxx
Hi,

Have you asked for a 2nd opinion on your treatment? We are not doctors here so it would be worthwhile seeking other doctors' advice, such as from John Hopkins or any other NCI hospitals. They would be more objective to your case. I bet they would be more possible to answer your question as well. I heard it would not take long to get the 2nd opinion and believe me, it would help resolve the uncertainty.

Good luck to you!

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1 year 3 months ago #55656 by tmcbladder
Thanks Alan.

I do have the emails to both oncologists asking advice, so I feel that some movement of some sort should come from that. If not, then yep, I may have to go to another surgeon.

Thanks a bunch for your quick response again. Just a listening ear on a bad day means so much.

DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...

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1 year 3 months ago - 1 year 3 months ago #55654 by Alan
Ah, yes that is a complicated mix! I have learned at some point in time you have to trust someone and push forward. I feel that some form of chemo prior may help but, that is way above my pay grade. I just know that is often a help listening/reading from others.

Being just stage 1 is a plus.

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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1 year 3 months ago #55653 by tmcbladder
Hi Alan-

Thanks for the quick response. I live in Charlotte, NC and the surgeon is one of the most highly rated at Levine Cancer Institute. They said since it takes 8 hours, and a 2nd surgeon for the hysterectomy part of it, that it is very hard to coordinate with them for a full day and therefore Oct. 10th is the soonest. This is very frustrating since the other oncologist said I don't have but a month, (which is up mid-August). I hope that I do not have to go to a surgeon that is not as good. I am not yet stage 2, but he is concerned that the CIS tumors will spread to my urethra, uterers and uterus soon.

I am hoping that they can at least do some type of treatment to keep them from spreading. They suggested Gemcitabine and Doctaxel if I wanted to try one more treatment. Maybe I can get that now to keep the CIS from spreading.

DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...

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1 year 3 months ago - 1 year 3 months ago #55652 by Alan
That is a long time to wait, 74 days. Almost makes me wonder if they actually do many of these wherever you are at. Are you able insurance wise to find another hospital or group to have this done? What area of the country do you live? Perhaps someone here will have another source to go to.

As far as progression. What stage did your oncologist say you were at? Stage 2 (muscle invasive) is better than stage 3a or 3b (hitting final layers) or is it possible it is still stage 1 as you had BCG? So those are factors. As none of us are doctors I would not want to speculate on how fast things would move as we are all different. Also, many times a regimen of chemo is done before surgery.

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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1 year 3 months ago #55651 by tmcbladder
I've decided to have a cystectomy since my treatments did not work and I have HG Papillary & HG CIS tumors. The first surgery slot is not until October 10th (74 days from now). I saw 2 oncology specialists this month and one said I had a month tops till mine spread outside of the bladder. That was on July 18th. What in the world do I do now??? Any advice out there?

DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...

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