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1 year 8 months ago #56641 by Alan

OK, you know a little more than you did and I like your day by day attack. A second TURB is almost always done when it is diagnosed as high grade but, also to verify what stage. As there are questions let's just hope for the best and prepare for any other possibilities.

Cling to the fact that stage 2 is a lot better than 3 or 4. Just maybe it will come back as stage1! You are still beatable and treatable and if the eventuality is a cystectomy there are MANY that have posted here and leading enjoyable/productive lives. There are lots worse cancers! And, we all know others in lots worse predicaments. You will come out of this stronger and more effective in your life going forward!

Your idea of a second opinion is also a good one as fresh eyes can verify or even give you more options!

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 8 months ago #56637 by tgrocky
Well This is TGROCKY again and I just wanted the people who replied to me and others that I got my pathology report when I went to see my Surgeon Dr. Wong on the 10th of this month (January) She told me that my tumor was in a very challenging position and that she believe she got most of it but not all of it. They believe it is a T2 and is a HIGH GRADE and that they believe that it may be invading the muscle lining of the bladder and she set up a second operation for February 18th to try and get the rest of it and too see just how bad the damage is and we will know after we get back the pathology report the next course of treatment which at this point may be BCG treatments or I may have to have my bladder removed. You can imagine how I was feeling at this point, very upset to say the least. I asked my surgeon again is it that bad she said yes it is. She said "I'm sorry" and I told her it is not her fault. She did recommend another surgeon who is also an cancer doctor as well who has more knowledge and experience in this. So at this point I am still scheduled for my second surgery on the 18th of February and I also made an appointment with this other urologist/oncologist for February 1st and see what he suggests and I will take it from there.

At this point now I am just waiting and that is so so so so HARD to do for me. As I try to keep myself busy but when there is down time I start thinking and I usually get pretty upset. I tell my closest friend that I do NOT want to lose my bladder as I want to try everything even if they think it may not work as every body's body is different and responds differntly. I am very scared that I may lose my bladder and I do not think I could handle that.

I did read on several website that once you are diagnoised with cancer your life changes forever and at this point I can see that they are right and it is VERY scary and a lot of times I feel so alone andscared.

At this point I am just trying to take it day by day.


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1 year 8 months ago #56596 by Jack R

Time for what is likely a bit of good news for you.

You are right about on schedule for having blood clots and a bit of blood show up. After a resection - removal of tumor, and perhaps taking of some random biopsies, the the places where tissue were removed form scabs, just like any wound. Between about 7 to 10 days, give or take, the scabs come off of the bladder, there is a bit of bleeding, and thus clots can form.

I have been there. Clots start coming out, then stop, blocking the urethra or catheter, and you (me) are plugged up. It IS time for the ER or a call to the clinic for an appointment NOW. I have had to go back into the OR to have biopsy areas cauterized again after clot blockages. All part of what can happen.

It would have been helpful if you had been told about this in advance, and been prepared for the possibility; I was well warned.

It sounds like you have a doc who is on top of things, and has you on track to address the bladder problem.

The pathology report will be the key to continuing care and recovery. Let's hope it is ready, and that you will know soon where things stand. Waiting, and worrying, is the worst part of dealing with bladder cancer (IF it is cancer).


What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back...

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1 year 8 months ago - 1 year 8 months ago #56594 by DougG
I understand you being scared. Like Alan said, one day at a time. As for the catheter blockage, so sorry to hear that you had that....Doug had that one time and it was horrible. He could barely stand to sit down for me to drive him to the ER. A male nurse came and got us in the waiting room and told us that he was a "penile magician". He did get the catheter flowing and Doug felt immediate relief....Doug was originally diagnosed in 2001; he only has had the catheter blockage one time. The clots do continue for a while during the healing process. I hope you will feel better after seeing your urologist and having the catheter out.
Best wishes. Try to relax and watch your favorite sport or TV show or whatever will take your mind off this! Please do let us know what your surgeon says. We do care.

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1 year 8 months ago #56593 by Alan
Welcome, tgrocky. Sorry why you are here. There are MANY that have posted on this forum over the years and the word is this is treatable and beatable. Until you have your patology report you really don't know exactly what you have and any plan to attack it. It IS still possible it is not bladder cancer. The surgery you had likely was a TURB (transurethral resection of the bladder) and it sounds like they had to take a large section which probably is caused by taking it all out. As your report will be given to you in the next day or so, I won't even guess what the next step is so please come back. Someone should see this and have a "been there and done that". One thing I have learned it iis one day at a time! That is all we can control.

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 8 months ago #56591 by tgrocky
Hello All!

This is hard for me to type, because I am getting upset just thinking about my future.

Back in early November I was going on a trip to be with some good friends in California for Thanksgiving so I left on the 15th of November and I was planning to stay about 16 days or so, anyway after the first week I was getting concerned that I have been urinating dark brown for quite a while actually since early October but I thought it would go away and I did not want to mess up my plans for my vacation as I was really looking forward to it. So I had blood work done and gave a urine sample while I was in California and when I got back home in December 3rd the following day I went to see my doctor for the results. My doctor said I had a lot of blood in my urine so she had me make an appointment with a urologist. It was VERY hard to get an appointment any sooner then January 8th 2019 and I tried to do better with no luck at all. Well a day or so later I was talking to a friend of mine and mentioned my problem and it just so happens his wife works for the corporate of the urologist people I was trying to get an appointment sooner then the 8th, well she pulled a few strings and got my appointment moved to December 17th. (I was so HAPPY)

So on the 17the I went to my first appointment with my urologist and it was a brief physical followed by a lot of questions and I asked him what I might have and my doctor said it could be an urinary tract infection or a prostrate infection or bladder cancer and he leaned towards bladder cancer so he had me get a CT scan on December 24th and he will see me again on December 26th and he would do a cystoscope. Well when I came back on the 27th he did the cystoscope and then asked me as I was getting dress if I would have a problem getting to another procedure as Said no, then he said see me in my office when you are dressed. so I while I got dressed I knew I was in DEEP TROUBLE so I walk to his office and he said you have bladder cancer and I was choked up but ws able to ask how bad and he said not good it is malignant and very big about the size of a baseball. It a minute for me to come back to earth and then I asked what is next he said surgery ASAP and I said I need time to think about this and he said honestly if it were me I would have had surgery yesterday. So he set up the surgery for January 2nd 2019, I was very nervous and upset of all this news at once, very hard to handle.

Soon the 2nd I had the surgery and the surgeon told me afterwards that she think she got most of it and we just have to wait for the pathology report to come back. Well today is the 10th and I am scheduled an appointment with my surgeon the get my Cather out as they have left it in because I had a hole in my bladder after surgery and I got a cystogram done yesterday to see if the hole healed and it did so she may I hope take the tube out of me today. During this whole process I been seeing blood clots in my urine even before I seen the urologist in fact yesterday I had to go to the emergency ward as my Cather tube was blocked nd I could not pass no urine and the pain was very much a felt I really had to go but nothing was happening.

I am still hoping today my surgeon will have my pathology report as I do not know what to expect and I am getting more and more scared as not knowing is so HARD but in some ways I do not want to know. Especially because I am still passing blood clots. I want to know what is next to do and just really how bad do I have it.



Early back in December I went to my family doctor for a full physical as I have not had one for quite a while and I

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