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Non Invasive Bladder Cancer
Posted byslabman on April 22, 2008 at 3:59 am
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Start of DiscussionNow0 of 0 repliesJune 2018
Well, I got through that dreaded first BCG treatment and must confess it was a lot easier than I thought(At least so far). Had no trouble holding the stuff in for the two hours and then only experienced a small amount of aching joints for a couple hours after going home. Hope I feel this good in the morning.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009Ddoyle replied 16 years, 1 month ago12 Members·24 Replies
24 Replies
Rosemary
Member
April 22, 2008 at 10:19 am
Slab,
Keep us posted as to how it’s going.
ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Joey
Member
April 22, 2008 at 12:07 pm
Slabman, hopefully you will have minor symptoms like I did for my initial 6 treatments. I had my first Cysto follow up last week and everything was clear.
Hang in there.
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Slabman
Member
April 22, 2008 at 2:57 pm
Thanks, gang. I woke up with a little nausea this AM, but not much else that I can tell. So, so far, so good. Sure hope others can get through these treatments as well as I have so far.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009Gina
Member
April 22, 2008 at 6:32 pm
slabman…glad it went well!!….one down.. ;)..keep us posted, will be thinking of you!!
joe…CONGRATS!…that’s huge…i can’t wait to hear those same words!! how long after your last treatment did they do the cysto?….thanks..gina
Joey
Member
April 24, 2008 at 12:47 pm
Gina they waited 4 weeks.
Joe
Gina
Member
April 25, 2008 at 1:30 am
thanks joe!…i hope that’s what they do for me…they said something about checking every 3 months…so i hope they don’t wait that long!!! it’s been almost 3 months since my turb…we’ll see..next week is my last bcg!! yippeee!! take care,gina
wendy
Member
April 25, 2008 at 11:07 am
[quote author=gina link=topic=2154.msg16098#msg16098 date=1209087036]
thanks joe!…i hope that’s what they do for me…they said something about checking every 3 months…so i hope they don’t wait that long!!! it’s been almost 3 months since my turb…we’ll see..next week is my last bcg!! yippeee!! take care,gina
[/quote]Hi Gina,
But…it takes a while for the BCG to do its work. Although looking at 4 wks can be interesting, there might still be tumor left, giving the false impression that BCG isn’t working, while in fact it takes about 3 months to have the full effect and can even be working up to six months later! It’s hard to know what is best, protocols often differ, doctor preference can run the show but patient’s preference is also extremely important. Insurance may be an aspect, perhaps that is one reason follow ups differ sometimes. If a person can pay cash, they can get any test they want!
I’m glad you’re finished next week, and I hope you can arrange for the follow up that feels best to you. But cystoscopy is an invasive procedure you don’t wanna do unless really needed. Experts complain that it’s overused, brings risk over the long term (complications such as urethral strictures and damage to the bladder etc), but that patients demand it. Sure…for our own sanity!
We need more reliable non invasive follow up tests, that’s for sure.
I wish you much success with BCG.
WendySlabman
Member
April 25, 2008 at 1:22 pm
Right-on, Gina. The thought of all those “entries” is very disconcerting to me. My plumbing is still not right 4 weeks after my cysto. The Doc calls it “a little scar tissue”, but I call it abrasive damage to the urethra. These guys are always down-playing things, it seems.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009Joey
Member
April 25, 2008 at 2:44 pm
Hi Wendy. The reason for the 4 week cycto follow up was because it was already 4 months since my initial surgery. The good news was that the cytology and FISH tests were negative for cancer cells. A biopsy showed some atypical cells that the pathology report indicated fall short of a dx of CIS/severe dysplasia. As I may need to have a stent put in because of a ureter being blocked either by scar tissue or inflammation from the BCG, my doctor is going to do another biopsy this time a little deaper to be on the safe side. Visually he could not see any recurrence. I appreciate your insight to everyone’s questions. I will then have 3 more BCG treatments.
Thanks Joe
wendy
Member
April 25, 2008 at 6:57 pm
[quote author=banxs link=topic=2154.msg16112#msg16112 date=1209134677]
Hi Wendy. The reason for the 4 week cycto follow up was because it was already 4 months since my initial surgery. The good news was that the cytology and FISH tests were negative for cancer cells. A biopsy showed some atypical cells that the pathology report indicated fall short of a dx of CIS/severe dysplasia. As I may need to have a stent put in because of a ureter being blocked either by scar tissue or inflammation from the BCG, my doctor is going to do another biopsy this time a little deaper to be on the safe side. Visually he could not see any recurrence. I appreciate your insight to everyone’s questions. I will then have 3 more BCG treatments.
Thanks Joe
[/quote]Hi Joe,
This makes perfect sense from what I have read and heard over years of listening to BCG warriors. Getting the 3 maintenance treatments is recommended now in all guidelines for high grade or T1, or Cis. A good biopsy is essential- to be safe.
Sorry about the blockage in the ureter, and I hope it goes away with no trouble. Not visualizing any recurrence is very good!
Where are you going for treatment? Some cancer centers in the US are trialing ‘photodynamic diagnosis’, where the uro inserts a fluorescent dye in the bladder, lets it sit, following which the cancer much better visualized than with regular cystoscopy using white light can. If you can get access to this new tool (phase III trials, approved in Europesince ’05) I’d say go for it!
http://blcwebcafe.org/content/view/93/103/lang,english/
Wishing you all the best,
WendySlabman
Member
May 6, 2008 at 10:29 pm
I can’t believe this. Did #3 yesterday and today I feel great! No aches/pains, etc. A touch of nausea, but no biggie. I did hedge a bit by taking some Tylenol both before and after this treatment and it helped a lot.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009sara-anne
Member
May 7, 2008 at 12:12 am
Slabman, I will have no. 5 tomorrow. So far absolutely no somatic problems…even feel better than I did before. Only result has been several hours of discomfort afterward…burning, have to pee every five minutes….but that doesn’t last.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorMini2008
Member
May 11, 2008 at 10:48 pm
Hope everyone’s treatments are going well.
My husband went for #4 last Wednesday and it came back that he had blood in his urine. They postponed the treatment. This weekend his burning while he urinates and continuous pain in the bladder still are there.
I am not sure if this is normal. I am new here and I apologize for posting about the situation on someone else’s thread. Was just hoping for some insight. Thanks.
I do wish everyone the best with the treatments.
Slabman
Member
May 11, 2008 at 11:16 pm
Guess I spoke too soon. 3 days after #3 I began to sense some discomfort while urinating. Thought it was just because I drank a fair bit of iced tea and it activated my prostate. Then 3 days later I came up with a fever of 102.8 and for the past two days have been laying low, fighting these high temps. For the record, the Doc said BCG symptoms should have occurred within a day or two of treatment, so this was a BCG-induced bladder infection. Something for others to keep in mind when they go through their treatments. BTW….he didn’t want me on Ciprofloxin for an extended period, but with this development, I think we all should stay on antibiotics as a precaution. Tomorrow is #4, but I’m sure it’ll be deferred.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009Slabman
Member
May 13, 2008 at 2:03 pm
A couple days have elapsed and I’m very slow recovering from these symptoms. I think the assumed bladder infection is not the case and this is plain old BCG-induced side effects. Aching joints, wildly-fluctuating temps from 96 to 102.8, nausea/vomiting, lower back pain, fluid buildup in my ears and resultant dizziness/unstableness. Does this seem like the case?
I had to miss treatment #4, so what will this mean to the remaining treatment schedule? Is this going to occur after each subsequent treatment?
I have a friend who just had a brain tumor removed, so I don’t ever want to complain about MY symptoms too much….he’s going through much worse.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009
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