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Unknown Lesion...Terrified

4 years 3 weeks ago #51528 by purrrkat
Surgery postponed to Wednesday the 20th...Not. Happy. When one is terrified anyway, one clings to the things that can be counted on--like, it will all be done tomorrow. So it's another morning waking up full of terror and dread and wondering if I'll be around to see my daughter through her bumpy adolescence, worrying I'm going to leave my husband without the love of his life.

I know it sounds overly dramatic, but I'm really struggling right now.

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4 years 3 weeks ago #51521 by purrrkat

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4 years 3 weeks ago #51518 by Alan

I echo everyone else also. On cytology. It is more of an extra check. The TURB will be the real dianostic test as the cells will be read and graded. Also, often a second TURB is done to be sure make sure "margins" are included just to be safe. Scared, we all were and we all handle it differently, so there is no right or wrong. Not saying my mind is any better or worse but, I worked through the why pretty quickly as I concluded it has happened, there was nothing I could do to change that and I moved forward. Take one day at a time!

Here is hoping the pathology says it is nothing. Then we can kick you out of our "club"! If not, we will be here to listen and answer and help win this battle.

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.
The following user(s) said Thank You: purrrkat

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4 years 3 weeks ago #51516 by purrrkat
Lillian, thank you for the info and encouraging words.

You mention you had grade 3 cancer; did you have cytology done, and if so, did it come back positive? I've had cytology but it was negative, and I've read that it's not very accurate at revealing lower grade tumors (I'm trying to hope for lower-grade!), though it sounds like BCG has worked for you. Excellent.

And I completely agree. I will be better when I know exactly what I'm dealing with.

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4 years 3 weeks ago #51515 by LillianG
Purrcat, try to relax and breathe. I remember how scared I felt when I heard the word cancer. That was 14 months ago, and I'm doing just fine now. The waiting and not knowing exactly what you'll be dealing with is definitely the hardest part. Once you get a full diagnosis, you and your doctor(s) can come up with a treatment plan (if needed), and your fears will begin to subside.

With regards to the TURBT - I've had two of them, both as outpatient and came home about an hour after each procedure. The first TURBT was to remove the tumor. My pathology came back as high-grade transitional cell carcinoma (TCC), so I had a second TURBT about 6 weeks later to make sure that the entire tumor was removed - and to get a deeper sample/biopsy to verify the stage (mine = superficial non-invasive). After the first TURBT while I was still under anesthesia, my doctor instilled a mytomycin wash (chemo) inside my bladder. Both times, I came home with a catheter and went back the following day to have it removed. The catheter was more of a necessary nuisance than anything else. There was some slight discomfort/ cramps for a few days after each TURBT, but it really wasn't too bad. I never took any prescription pain pills, Advil was all I needed. I was also a bit tired, but some of that was from the anesthesia. Also, I suggest that you avoid binding foods before and after the procedure; the anesthesia can cause some constipation - and that's no fun after a TURBT (or any other time, for that matter :) And no lifting of anything more than 10 LB for a few days.

Please keep us posted, and feel free to ask any questions that you may have.

Take care of you,

5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.

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4 years 3 weeks ago #51514 by MadLove
Dear purrkat,

After the TURBT, plan to take it easy for a day or more and stay hydrated. You may be sent home with some prescription medicines. In my husband's case, he received an antibiotic, prescription pain reliever and pyridium (relieves bladder discomfort and temporarily causes urine to be orange. Droplets can stain surfaces.)

Each TURBT recovery time will be different and seems to effected by how much area is, as my husband calls it, scraped.

His cancer type, CIS, appears as more of a diffuse rash growth and covered a good bit of bladder at the time of the first TURBT. He came home that time with a Foley catheter and pretty much stayed in bed until the catheter was removed.

The next two TURBT's involved less "scraping", the catheter was removed in the recovery room and he was able resume most of his usual activities, although he did have instructions to limit lifting anything over 10 pounds for awhile.

He took leave or teleworked from home the day after those procedures to avoid any urgent bathroom situation during his 65 mile work commute. When he did return to work, he carried a disposal urinal in a brown paper go bag just in case he had to, well, go, during his commute. There is apparently some finesse required but you find ways to do what has to be done. :)

You are likely to hear from other forum posters about their TURBT recovery experiences. Keep posting with any questions.

Best wishes.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

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