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what to expect
Posted by annie on November 19, 2011 at 1:43 pmThis has happened so quickly and in spite of preparing myself psychologically, I am unprepared for the physical after effects. I am going for cystoscopy on 11/21/2011 at 8am for biopsy. The doctor said depending on that he will either perform TURBT right away or if found to be invasive I think I will have a day or two to prepare for more serious surgery. My question for you folks out there, what is it like to have a catheter/ostomy bag for 5-10 days for a woman? I am trying to get the ducks in a row before Monday but honestly it’s hard to figure out what to google next! Am I going to be horizontal for a few days? Will I be able to have a BM? Any and I mean any advice is so appreciated. FYI 54 yr old female with 6 months of gross hematuria. Did the GYN visits (3) and all tests, went to PCP 3 times and he was very unconcerned and told me to go to gastroenterologist, which I did. After 6 months of heavier and heavier bleeding I took it upon myself to go to a urologist. Had CT scan and have 1.8 x2.0 cm mass detected. Can anyone offer any advice.
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M0DougG replied 13 years, 2 months ago 6 Members · 10 Replies10 Replies-
Hi Annie,
I was just thinking about you and wondered how your day went. Hope it went well.
Anita
Anita
Forum Moderator
CaregiverI had my first TURBT under light general anesthesia (outpatient), and had no need for a catheter. I went home in a few hours. However, my tumor was smaller than yours. In addition, after the surgery the urologist was 99% certain it was low grade and noninvasive, which was confirmed later by the pathology report. One thing to keep in mind is that a second TURBT is highly recommended, after you’ve healed somewhat from the first one, in order to make sure the initial surgery got the whole tumor and also to verify the original pathology report. (Unfortunately, it’s not uncommon for bladder cancer to be “understaged” at the time of the initial TURBT.)
Best of luck!
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.Sara Anne,
You think you’re confused? (insert joke here!)
I sorta had a worse case scenerio with the first Urologist. Again after 6 months of doctor visits and GYN procedures, I made my first appt on 11/10/2011 with female Urologist. I really liked her and after she got sample from bladder she came back in the room and said I needed a CT scan pronto because of gross hematuria and lots of white blood cells. She used the collective “we’ll need to see you in a couple days” and didn’t tell me that I was her last patient in Texas. She moved to MN the next day! The next day I got the CT scan 11/11/2011 and come Monday morning her office called and said they needed to see me that afternoon for cystoscopy. They then told me the size of tumor. I didn’t like the way I was treated by that particular office (thought they should have told me earlier about her leaving) so I made appt for new urologist on 11/18/2011. This DR and his P.A. went over the CT results and the collective opinion was cystoscopy 8am with same day TURB in hospital but as out patient. I’m thinking this is best case scenerio…that it is early, small, wham bam.
Thank you for your input….
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M0Annie, I am a little confused as to exactly what procedures you will be doing. A cystoscopy allows the uro to see the bladder and see what might be going on. This is usually done in the urologist’s office, and is usually “no big deal.” (Says she having had MANY of these.) However, for a biopsy that would include enough tissue to analyze and to check for muscle involvement, should there be a tumor, it is usual to have a TURB under general anesthesia.
It would take a few days usually for the pathology results to come back after the TURB, and, should the results indicate muscle involvement or very high grade tumor, discussion would be held as to where to go from there. IF this is this case, it might not be a bad idea to get a second opinion from a really top bladder cancer center (MD Anderson?) before making life-changing decisions.
After a cystoscopy, you may feel a little uncomfortable…I usually have an urge to pee for about an hour, and then am back to normal. After a TURB, I am mostly groggy from the anesthesia and a little uncomfortable again. Back to normal the next day. Have never required a catheter, but individuals vary. Most of the “horror stories” you read on this Forum are from MEN. For once, women have it much easier since nature did not bless us with a prostate, which causes much discomfort (I am told).
Hope this helps…I may have misunderstood the procedures you are facing, but this is the usual.
Good Luck!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorWow! Thank you guys so much! I guess, though I think I know a lot of info for a lay-person, it still hasn’t sunk in that Bladder cancer is..well… cancer! Does that make sense? I guess I’m not sure if my urologist is the end all. If he doesn’t suggest an oncologist, should I seek one on my own? At this point I know it can go two ways. Either immediate TURBT or the bigger more complicated surgery if the tumor is invasive.
I just printed some info on the catheterization process so I ‘ve got more reading to do. That is new to me and hence the fear.
I accept your good energy and wishes. Thanks again.
Annie
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M0Hi Annie. Glad to hear you’re on the right track, unfortunately it’s BC. You’ll soon have a better idea which directions to proceed. Let’s give you positive thoughts 11/21. My first visit was a Turbt, and went home wearing the bag for 10 days. After the first day of shock & recovery, was right back to work. Using the bag system was not a comfortable procedure. Opps, a male here. If interested, my newbie story is appearing under non-invasive, “Joining the BC Club”. We wish you the best.
Hi again Anne… as far as the TURBT goes, I had mine early in the morning, was home by 1:00 p.m. I had a catheter (first time with that) and took it very easy the rest of the day. The doctor said that if my urine was clear the next morning, they would remove it. I had not seen any blood to speak of, and when I went back the next morning at 10:00 after checking me, it was taken out. By that afternoon, I was out running errands. I know everyone may not have such an easy time of it, but mine went very smoothly.
The TURBT was performed by my local uro. It was after the path report came back that he referred me to Vanderbilt where I had surgery. I did the same as you between my TURBT and first consult with VB… started reading everything I could find out there and finally had to stop because it was too scary letting the imagination run wild.
I didn’t find this site until 8 months after my surgery and it was a blessing. I’m glad you are here at this point so we can try to answer your questions based on what we’ve learned in our own journeys.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNHello Anne… Bravo for you for taking your health into your own hands by going to a urologist on your own. It is maddening how little doctors know about the bladder to the point of rarely considering it in their diagnostic thinking, especially for women. My mass (1.6 cm) was discovered at age 55 by my very persistent female gynecologist on my first visit to check on a little blood I had seen on the toilet tissue.
After your biopsy (and/or TURBT), a pathologist will examine it and provide your doctor (and make sure to ask for a copy for yourself) with a path report which will determine what type it is and if invasive/non-invasive. That will determine your treatment options. That generally takes more than a couple of days… maybe up to a week to get the report back.
Unless you are somewhere on par with MD Anderson (for example), before having a “more serious surgery,” our collective advice here is to always get a second opinion from a major cancer center who handles a lot of bladder cancer cases, even if you have complete confidence in your local urologist. My local uro sent me to Vanderbilt Medical Center in Nashville because my path report came back in the “rare” category which he was not familiar with as far as treatment went.
It is hard not to jump ahead since so much of the info on the internet jumps right to bladder removal. There are considerations before that depending on the stage/grade of a tumor. Many can be removed with close followup and BCG treatments, so a mass does not immediately send you to the cystectomy option. But, for anyone going down that road, there are many here who have come out the other side of that procedure and can guide them through and provide much comfort and support.
Will be thinking of you on Monday. Best wishes…
Catherine
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNThanks Anita,
I think I will try that chat room thing. I know what you mean about getting ahead of one’s self…I think I spent 1 night of fatalistic thinking and then just went totally pro-active. It is such a weird feeling though. All the fears and emotions mixed with resolve of “hey this is just a new road I go down”. I am in Austin Tx and I have gotten the work situation taken care of a a couple of weeks but am totally clueless about what I will need on the home front. It really does matter that there are people like you out there to look to!
Anne
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M0Annie,
Welcome to our forum. You sound like a “take the bull by the horns” kind of a girl, which I congratulate you for. I am also 54, a caregiver to another age 54! You will not be horizontal for any length of time. You may even go home on Monday…and yes, you should be able to have a BM. Doug’s doctor has him take stool softeners (which are over the counter), so you may want to buy some of those. Where are you located? There are people on the forum who will be helpful on helping you identify the closest major medical center that specializes in bladder cancer.
As all here will agree, the waiting is the worst part. Take a deep breath and try not to get ahead of yourself.
On Sunday evenings at 8 PM EST, we have a chat room open. You are welcome to join us there. There are people there with varied experiences with bladder cancer and you can ask any questions you have then. In the meantime, keep posting to the forum!
Anita
Anita
Forum Moderator
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