Just received the path report

17 years 1 month ago #3828 by goingamakeit
Replied by goingamakeit on topic Just received the path report
Rosemary - Tim,

Thanks for the response to my post. I have been on pins and needles awaiting this path report. I was hoping for better news considering the initial report by the Doc after surgery.

It concerns me greatly to sit around for the next 3 months doing nothing if in reality I need to be taking action. I've been trying to learn all that I can so I can have some level of control regarding decisions concerning my care. I'm not sure how I feel about the wait and shave approach...I need to digest over the weekend. I have a bro-in-law that is a radiologist. He suggested, in addition to working with a Urologist, getting with a Oncologist now. Where might you direct me for additional information? If you were to seek the very best care where would you go?

goingamakeit

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17 years 1 month ago #3826 by Rosemary
Replied by Rosemary on topic Just received the path report
Going,

I copied this from the front page of the forum listed under Dr. Lamm's BCG recommendations....

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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17 years 1 month ago #3825 by timb
Replied by timb on topic Just received the path report
Going
First off, welcome to the forum. I'm sure you'll find lots of useful information on here. Your journey reminded me of my own early experience of blood in the urine some 14 years ago. I think I felt a bit giddy too. It's not really what you expect to see down there and it doesn't take much blood to make things shockingly red. I personally never had a T1 tumour. My tumours started as G1Ta and ended up as G3 with CIS - still Ta. I had my bladder removed last October after a year and a half with BCG which the CIS and tumours resisted. Or at least avoided somehow!. I think the watch and wait approach is often the norm with your pathology and stage of treatment - you can just get one appearance and then nothing more for years and years. Although different doctors favour more or less aggressive protocols and if your disease is persistent at that grade and stage I personally wouldn't mess around before upping the ante and taking a more proactive approach. Some docs would already have you on the BCG by now.

One of the many downsides with this illness is that whatever ways you choose to treat it, it's always a gamble. You're damned if you do and damned if you don't. There's a ton of statistics out there. Actually, as I'm sure you are discovering, you can find a statistic out there to match whatever outcome you desire for your illness! Or you can bum yourself out by finding a paricularly gloomy stat that fits your situation! It's all pretty confusing. There's certainly plenty to read on the internet!

Take care and fire some of those questions at the boards here. People are very helpful and there's a wealth of experience

All the best

Tim

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17 years 1 month ago #3824 by Rosemary
Replied by Rosemary on topic Just received the path report
Dear Going,

Hmmm.. We are very close in Stage and Grade (T1G3), but my experience was a little different. For one thing, how does the doc know that he got all the tumor? My doc was one to err on the side of caution and he did a re -TUR 6 weeks after the first. He expected residual tumor and found it....

Once again, because of my gender and age, and wondering what progression would be like for the next 25 years of my life (I was 53, I'm 54 now)....he sent me to the highest BC authority in our state (UNC Chapel HIll) for a second opinion. Erring again on the side of caution. .. I had a double check of muscle tissue for biospy. It came back clean.

Anyway, I'm just comparing experience and see quite a difference. What do you think? I'm a little confused about whether or not you've already been to the consult....

Your BC friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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17 years 1 month ago #3823 by goingamakeit
Just received the path report was created by goingamakeit
Well...looks like I'm going to get to know a whole new group of friends...and start upon my path of learning about this disease!

My journey started just a little over a month ago...blood in the urine. Immediately had a flushed feeling come over me (probably the blood draining out of my brain knowing that wasn't a good thing - and since I've been a smoker for 28 years expecting that someday it would catch up with me). Realizing it wasn't a fluke I went home for lunch and told my wife I needed to see the doctor.

Even though I got in that same day by the time of my office visit the visible blood had subsided. Lab still showed blood so he scheduled an IVP within the week, which came back showing a kidney stone. What a relief...missed the bullet, it's only a stone. But, since I have been a smoker he scheduled a visit to the urologist.

The lab prior to my initial visit to the specialist revealed blood even though it wasn't visible. Again, since I am (was) a smoker he scheduled a cysto in the office a week later. Did a lot of research over the next week and didn't like what I found. Didn't sleep very much that week either! As I was pulling into the medical office parking lot for the procedure it was as if I already knew what I was going to hear. Unfortunately...I wasn't mistaken. The good news was that he found the source of the bleeding. Said it looked small - fern like and there was only one. The bad news of course is that it was probably cancer. He then explained the drill...in that we were going to see each other a lot over then next couple of years then a little less for up to 5 years. BTW...who was the sadistic individual that came up with the penis clamp?

Well...you guys have been through this - traveled the road before me. So, you remember the head-trip for the next week while waiting for the surgery. Surgery went fine...in fact had to catch a plane for a business trip 26 hours post op. Did my best to concentrate on biz and have a few laughs along the way for the next 5 days.

Upon my return, this Monday, I called to get the path report and as expected it was cancer. Nurse told me it was low grade and then scheduled my 3-month follow-up exam. I was still feeling like I was in the dark - certainly not feeling in control - so I asked for a consultation. Went in today to ask all the questions but primarily to review the path report. The report states that I have a papillary transitional cell carcinoma grade G-2, stage T1 that has invaded the lamina propria.

As I stated...I'm new to all this...but it is interesting how my vocabulary has broadened in the last 3 weeks. I feel better just being better informed but still have many questions. And yes...I quit smoking. Today is day 14!

Treatment plan is wait and see - shave if there is a reoccurrence. At this stage/grade would that be the norm?

Cheers to all...looking forward to knowing you. ;)

Goingamakeit

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