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Upstaging to muscle invasive significance?

1 month 1 week ago #55890 by frannie72
My husband had the restaging TURBT yesterday, along with laser treatment for his stones (lithotripsy didn't work). The doctor said he took out more from the original area and then several samples from areas in the bladder that looked atypical and "angry." This is new information, that there are "angry" looking areas within the bladder lining - but he's not sure if they were already there or if it's inflammation/trauma from the stent, the stone debris going thru there etc.

Is that a typical finding of bladder cancer, that areas look "angry"?

We have an appointment on 10/11 to get the results of the biopsies.

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2 months 13 hours ago #55814 by frannie72
Yes, one day at a time. I apologize for the typos in my previous post, should not have been trying to post on my phone in the hospital! At the moment, nothing happening until October 1st, he'll have an abdominal CT, then the TURBT restaging on October 4, then I suppose a week wait and then we'll know what we're actually dealing with. I am just truly hoping this is something we can put behind us soon. I am sensing, though, from reading various posts, that even if the TURBT restaging shows nothing new, he'll have to be monitored, which I guess means regular scopes and scans? I've tried to get info from the urologist but he is not saying anything really, I suppose until we know more. But as you said, one day at a time, until we get new information.

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2 months 1 day ago #55806 by Alan
When a DX is high grade a second TURB is almost always done just to be safe. The bad part is waiting to be re-scheduled (hopefully they have already done that) coupled with the pathology report. The probability is that is where it will stop and the normal treatment is BCG or immunotherapy. I have learned with this or any other of life's issues it is simply take one day at a time...and I know that is easier said than done.

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 months 1 day ago #55799 by frannie72
My husband had lithotripsy today, hopefully it will work on the large stone he has.

Dr. mentioned to be after the procedure when I asked him about the upcoming restating and he said that the path report "surprised him" because it seemed "out of proportion" with the mass he removed. So he thought it was low grade and it turned out to be high grade T1 papillary. He wants to back in and see what else is going on.

Is he trying to say that the situation is more worrisome? It may be more than the original 2 cm mass he removed?

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2 months 5 days ago #55771 by Jack R
Frannie,

I think that it is fair to say that everyone of us who get a cancer diagnosis feelsas if we were slammed to the ground and we are not sure how to get back up.

There is never enough time to deal with all the questions that arise once we start to breathe again. Doctors are just too busy. In that vacuum, our worst fears have a chance to surface. Unless we can get pointed toward the answers we so badly want, we can be lost.

Is your husband interested in searching on line, or asking those pesky (and seemingly embarrassing) questions that need answers ? the internet has both helpful and downright dangerous information; there are many well known groups that offer factual information on ANY facet of the cancer experience.

This forum is a good source of group-vetted information and referral to other sites. Cancer.org the American Cancer Society is reliable, as is Cancer.gov the National Institutes of Health web site.

Once cancer has found us, we need to address our worst fears and concerns, because we need to make care decisions. We need knowledge to replace fear, for ourselves and our families.

An alternate to using the net for answers is to ask for a referral to a social worker or cancer navigator to ANSWER all the questions that bother or nag at us.

Fear offers no hope. Things do get better the longer you are past the initial shock.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3

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2 months 5 days ago #55770 by frannie72
Thank you so much for your helpful posts.


It seems like the treatment plan for T1 is highly individualized depending on many variables and criteria. I was reading that in some cases, they even do cystectomy for high grade T1! My husband is older (71), would that make a difference? He's terrified of nothing but a cystectomy. This has been such a shock, he's always in very good health, we have been married for 22 years and the first time he was ever really sick was last year when his flu turned into pneumonia. We have a so-called "age gap" marriage (I'm in mid 40's) and have minor children so he's panicking a bit.
The following user(s) said Thank You: Jack R

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