Just Received the basic news

8 years 5 months ago #49608 by LillianG
Replied by LillianG on topic Just Received the basic news
Henriz, with what I've read about different facilities since I was diagnosed in mid-May, I agree that you are in the best of hands at MD Anderson. (I have both engineering and medical schooling/background, so I am very detail oriented when I research 'stuff' that affects my health and well being.) After reading some of the semi-frightening side effects in previous posts, I'd like to reassure you a bit and share my own experience with TURBs, mitomycin C, and BCG treatments. I do believe that women can tolerate these procedures and treatments better than men. I think part of that is the 'plumbing', and part of it is because we are accustomed to tolerating abdominal cramping and discomfort.

After my first TURB, I took only one narcotic pain pill; then, I moved to Advil every 4 hours for about 12 hours. I also had mitomycin C at the end of that procedure, and had minimal discomfort. After my second TURB, I took a few Advils, but did not require any narcotic pain pills. I've completed my initial six BCG treatments and the only side effects that I experienced were basic flu-like symptoms for 24-48 hours after each installation (chills, tired, etc). There were some other minor side effects, but they dissipated within the first few days of each treatment. It's been a few weeks since my 6th treatment, and the only side effect I still have is a bit of fatigue. I think that could be from lack of exercise, which is something I'm just getting back into.

I hope this bit of information helps to reassure you that these procedures and treatments can be well tolerated. Good luck and keep us posted, Lily.

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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8 years 5 months ago #49605 by Henriz
Replied by Henriz on topic Just Received the basic news
Lillian,
I do feel better knowing I am in the good hands of M D Anderson. They are so different from the local urologist that did my initial surgery, which I thought was perhaps a kidney stone blocking my kidney. If I had even had a thought of something like this, I would not have had the surgery here locally. I probably would have gone to Dallas. But it is what it is, and I now know, and I am in the best of hands.

And I found this site, and it has given me a world of peace knowing that I have all of you to lean on through this process.

Henri

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8 years 5 months ago #49604 by OldEngineer
Replied by OldEngineer on topic Just Received the basic news
I need to remind myself that women are best to give advice to other women regarding TURBT because we men have that darn prostate, making our plumbing more complicated and making the opportunity for pain much higher. So indeed my experience may not be typical in general - possibly more typical for males but less so for women.

One other point - I would encourage you to talk to your doctor about ibuprofen - my doc said not to use it because it does "thin the blood" a bit making bleeding after the procedure more likely (like aspirin); that is why Percocet and oxycodone are narcotics on a base of Tylenol (acetaminophen) instead of other analgesics.

Of course I hope you do not need narcotics; but having been through many surgeries unrelated to TURBT (e.g., inguinal hernia, hemorrhoidectomy, etc.), the trick is always to keep the narcotics AHEAD of the pain. Hence my focus on that. For the record, after my first TURBT where my tumor was removed, I needed 16 oxycodone doses; after the second TURBT which involved biopsies and a bit more "digging" at the original site but not as extensive, I only needed six. I have a reasonable threshold for pain, but my situation was exacerbated by cystitis (inflammation of the bladder) induced by the procedure and the use of the mitomycin-C as intravesical chemotherapy afterwards. As Cynthia indicated, whether to use the mitomycin-C is the doctor's decision but my urologist told me it was pretty standard if the urologist performing the procedure visually concludes the growths are likely to be cancerous. And frankly, I'd rather suffer the consequences of cystitis than worry about loose cancer cells in my bladder which would have been killed had mitomycin-C been used.

Again, good luck to you, we are all pulling for you!

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October
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8 years 5 months ago #49603 by LillianG
Replied by LillianG on topic Just Received the basic news
Just a quick note to wish you smooth sailing through the tests and TURB. I suspect that you will feel much better about all of this once you have a solid diagnosis (I know I did).

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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8 years 5 months ago #49602 by Henriz
Replied by Henriz on topic Just Received the basic news
Yes, Ann. I am thinking it won't be a lot worse. I am hopeful. I know I am in good hands. I am very positive. I am so impressed with the MDA hospital and I haven't even been there yet.
Henri

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8 years 5 months ago #49600 by pemquid
Replied by pemquid on topic Just Received the basic news
I had forgotten you already had the surgery in September. What you are having now is likely to be somewhat more extensive, but hopefully aftereffects won't be too much worse. I never had the pyridium but understand a lot of people find it very helpful. For pain I used ibuprufen, which also has anti-inflammatory properties. Drinking a lot of water to keep the urine diluted also seems to help with the burning.

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.
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