Thanks, Wendy, Pat,Rosie, Warren and Joe for the sympathy and support. I hate to complain anytime, but, when it's my turn to open my mouth and out comes the BLAHS, it's so nice to know that you guys are there to catch me.
I can't say that I feel better or worse, but, I have been using a medicated powder (Caldesene) in my underclothes and the burning on urination is better.
I took some Cranberry and also some Probiotics and can also report that the terrible raw, yeast rash under my breasts has suddenly, somehow disappeared.
Warren, I'm guessing that my frequent urination is gynecolgical in nature and probably would be cured with a hysterectomy. I don't realistically think it is metastatic cancer, but, given my history, it does pop into my mind. BTW, you seem like you must be a very good Doctor! You are good at listening!
Joe, you are such an inspiration. Your honesty is always appreciated.
Thanks to you all, and now, I will bow out of Sally's thread, and just send good thoughts her way, and thank her for letting me gripe a little on her dime...
Best regards to my friends,
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Rosemary I hope things get better for you but Stage IV now I know you are having a bad day. That doctoring part you are speaking of since 2000 when I went out on disability for my bi-femoral bypass operation ( blocked arteries in legs ) my life has not been the same. It's just been one medical thing after another and last Sept was the icing on the cake. Laying in the hospital recovering from my left hip replacement in shear fing pain because they screwed my pain meds up took 24 hrs. to get that straightened out which seemed like 3 days when your in pain. The whole time I'm going thru this I have a tumor growing on my bladder the size of an orange and I find this out right after I get the green light from my hip. I can't count how many Dr's I have seen and tests I have done since 2000. Right now I am cancer free and do not have to see my surgeon till November. When I was being treated for my cancer I felt as though the Univ of Pa. was my second home so for now I am just enjoying the time not seeing anyone wearing a white coat. I had that bathroom problem also I was up like you 3 or 4 times until my surgery and my bladder out. Now I have to get up once usually have to set alarm and go, so I am sleeping better because as I said I only get up once. Yup having the Indiana Pouch the only pain is going to the bathroom on a schedule me the most being 5 hrs to empty pouch so I have a schedule where b4 when I had my bladder I did not so the only difference now is I know when I must go but I'm alive Anything else goes wrong the only white coats I'll be seeing will be the ones with them guys holding butterfly nets chasing me because I will now be one that has flew over the cuckoo nest. Joe
I'm also sorry to hear you are feeling so badly. A couple of things came to my mind, pro-biotics and cranberry capsules. "Culterelle" is highly recommended by many as a pro-biotic from health food stores and cranberry caps also supposedly help prevent UTI and help UTI symptoms. Could be worth a try if you haven't already.
Maybe you don't have to accept this pain and discomfort as part of the package, maybe it is fixable; maybe it will take time. It could also be side effects of BCG and Mito as Pat implied, and that should also clear up with time.
As for worrying about metastasized blc, you can check this with cytology and/or FISH or BladderChek if you're seriously concerned.
I have had burning symptoms upon urination for about 2 weeks. It burns way down at the bottom and tingles as urine fills up and it is an uncomfortable feeling. It feels like cystitis.
I have an idea that it is related to a recurring yeast infection that seems to be thriving in every warm place inside and outside of my body.
There are so many things that these problems COULD BE. And I am so very tired of doctors (and dentists, too) that I almost just want to say, "Let it Be." Because I have been checked and rechecked and then checked again, and no one can tell me what is really wrong.
So, after about the 3rd opinion, I've decided to just live with my symptoms and just hope that it isn't metastatic cancer.
Sorry, Ya'll, I guess I've had a rough day
After all the help you've given folks on this forum, you're entitled to complain a little and get at least a sympathetic ear, if not a little help.
You didn't say what diagnostic evaluations you had, and I know you know your stuff, but... have you seen your gynecologist? Vaginitis can mimic cystitis as you probably know since you've been treated for yeast infections. I know of a situation where a patient was treated frequently with metrogel for bacterial vaginosis and various yeast treatments with no relief. She went to a new Gyno who treated her with ¿boric acid? (not sure if that was what she was treated with) to change the pH, and she had a miraculous cure. Antibiotics had really messed things up.
Now we all have bad days. I know that I've had more than a few during the two times my stricture acted up giving me pain and urinary symptoms for a month each time, but why think of METASTATIC cancer. If anything it should be local, and you have had the appropriate urological follow up for that. And frankly, I've had more painful and annoying symptoms from my treatment and it's complications than I ever did from the cancer.
Keep the faith, and don't give up on your doctors even when they're not coming up with answers. Unfortunately you still need to be vigilant about follow up on the original cancer.
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
Rosemary, I take Ultimate 10 Probiotic which has all the friendly bacteria rather than just the kind find in yogurt. When I was first diagnosed with blc my doctor asked if I had many "yeast" infections in my health history. I replied I had many. He nodded his head and said that is a typical reply from those he treats for Urinary cancers. Co-coincidentally I was also watching a local program by Doug Kaufman who stated wrote aand wrote a book called The Fungus Connection. I ordered and read the book. He later wrote a book called The Germ that Causes cancer. Interesting ideas presented in both books. Although I didn't go on the recommended etc. I did start taking probiotics. Rosie
Rosemary eat your yogart.
Seems to me not one of these doctors is willing to admit to any side effects of BCG or Mitomycin........it seems to be such a variable with everyone. Thats just so unacceptable.
I'm like Zac..i'm happy my bladder is out...i could never have gone through what you guys have. Pat