[rob1234]

sorry to gil for the long time to reply. trouble is that in the last year, in addition to the nmibc, i also had a brain stem stroke. with the stroke i was unimaginably lucky ad came out pretty much whole, t was a rough go.

for the bladder cancer the news is equally good. just had a cysto the other day and according to the very best urologist around, it  “looks good” and he is very pleased. another look in 3 months and yet another round of bcg. i dont mind as the alternative is death.

year before last i also had an incarcerated hernia, (get it fixed or die, soon). i haven’t been coming here due to recovery from the stroke.

i have been luckier than any human has a right to expect and am grateful that this bard is here as it is a very good support and helps reduce stress.

thanks to all and i will keep updating.

r stull

[rob1234]

sorry for taking so long to reply. thx to gil for the information.      it wasnt too long for the bcg, all is well. go for the cysto, which i have every reason to believe will come out clean.

 

r stull

[rob1234]

please forgive my absence and lack of replies. sometimes i think the universe is out to get me.  on the 22nd feb i had a (minor) brain stem stroke. got through that with a boatload of new blood pressure drugs. then my urologist ( who i have ABSOLUTE faith in) is off for a month. i will post results as soon as i get them.

earth isnt getting rid of me that easily, got through the incarcerated hernia, weathered the stroke and honestly believe i am going to beat the bladder cancer.

cheers to all

 

rob1234

[rob1234]

Bladderboy:   myself not knowing what to expect stopped drinking first thing in the morning. i had my appointments at around 11:00 am so it wasnt much of a stretch. remember (unless your doctor says different) they want this stuff held in for 2 hours.

my doctor “installed” the bcg and then let me go about my day. i got someone else to drive me the first time so i knew what to expect and then drove my self after that. i waited better than 2 hours and then “let her fly”.

of course, your doctor/urologist/ and the facility might have a different way of doing things. maybe they have a pamphlet regarding the procedure?

good luck with everything

 

rob

[rob1234]

i forgot to put the update here with the results of the second “look”. they took 2 small samples to send to the lab. what they got back was no cancerous cells detected. next is the bcg, and i just had the fourth this past thursday.

 

rob stull

[rob1234]

2 hours and 32 minutes

marysue, my urologist actually said that all that turning was no necessary. he said it is not really necessary anymore. he was in his street clothes when he did the job and the nurse who helped him clean up after was in normal scrubs. i was given no special instructions regarding disposal.

he did say something that was strange (to me). he knows on of my 2 tumors (both very small and T1’s) was high grade from the lab. he said he didnt think it was high grade still but the lab wins.

rob stull

[rob1234]

i (personally) have only recently been diagnosed. dec 5th they will be going in for a cystobiopsy. i am told that this is the second look after the turbt on oct 10th. it is to see if anything has come back and to make absolutely sure there has been no muscle involvement. the doctor says (very well experienced) that he doesnt think it has penetrated any muscle.

i had been cautiously optimistic as he said assuming an all clear, it was going to be BCG. now i get this letter with strange things like 1/3 doses,etc. i am not willing to take the chances. the other drugs (if no bcg) arent as good (i am told). therefore, i will be asking for radical cystectomy. i know they take other goodies too but i am willing to put up with any side effects.

this is a rather “icky” turn of events. ostomy, here i come

dont mean to be a downer and apologize

 

rob stull

 

[rob1234]

on dec 5th i am up for a cystobiopsy. i am told that this is the “second look” after the turbt on october 10th.

 

rob1234

[rob1234]

thank you jack and mary sue. not helping my nerves was the fact that i have also been recently diagnosed with ptsd. i wont bother with the details but it is being brought under control and now i find that my bladder cancer is becoming easier  (a little) to deal with.

my urologist will NOT be permitted to get away with what he previously did. apparently i was “forgotten” and my turbt was the first time he had gone in to see what was going on. i know that the second “peek” is supposed to happen around 6 weeks from the first. that puts it at the 21st of november. i will be “inquiring” with his staff starting this monday.

since this whole thing was found by accident, i am not going to screw up the gift the universe/karma has given me.

will keep everyone apprised and thx again

 

rob

[rob1234]

thank you for that. this board is an absolute god send. for someone who’s cancer was found by complete and total accident and is really, still getting used to the idea.

now its a waiting game, to see what they find on the second follow up turbt. he said he thought it wasnt into the muscle, so i will go with that until proven otherwise.

will be seeing everyone.

rob s

[rob1234]

i have found at times recently that my situation has fled taking my manners with it. i am nervous to the nth degree about all this. everyone i know has told me that my chances with the above are very good.

please accept my apologies if i seem rude, it was not my intention

r stull

[rob1234]

i should learn to spell and use punctuation.

tumor “a”- label on container “superficial bladder tumor” transurethral resection

diagnosis ” noninvasive papillary urothelial carcinoma, high grade

 

tumour “b”- label on container “deep bladder tumor” transurethral resection:

diagnosis: ffocal cauterized papillary urothelial carcinoma

unremarkable muscularis propria is sampled

 

i thought tumour “a” and i still think its a T0, and “b” is a T1 and has not penetrated the muscle layer yet., the mucosa, yes, but nor the muscle, other wise the muscularis propria would not have been unremarkable.

 

the next turbt (he siad) was to ensure it did not penetrate the muscle layer (he said he didnt think it did). then bcg.

 

tumor “a” was 1.9cm x 0.8cm x 0.5cm

tumor “b” was 1.6cm x 0.6cm x 0.5cm

both seem a little on the small size. thats what i am telling myself anyway.

 

rob

 

[rob1234]

tomorrow will be 2 weeks since the TURBT. the pain has mostly gone away but i am becoming concerned because the stream is beginning to widen near the end like a spray. any thoughts?

rs

[rob1234]

well, the results are in

A.) Urinary Bladder “superficial bladder tumor”, Transurethral Resection:

non invasive papillary urothelial carcinoma, high grade

B.)Urinary Bladder”deep Bladder Tumor”, transurethral resection:

Focal Cauterized Papillary Urothelial carcinoma

unremarkable muscularis propria is sampled.

 

my take on the above is

A.) high grade yes, but non invasive says it hasnt even begun to penetrate the bladder wall yet. its size (1.9 x 0.8 x 0.5 cm) is on the small size. i believe it can successfully be treated.

B.) “deep bladder tumor” was just the label on the specimen jar. its size (1.6 x 0.6 x 0.5 cm) is smaller than the first one. the muscularis propria is unremarkable, so in good shape.

 

i believe they are both treatable with a good chance of success. what i have are 2 small papillary (mushroom shaped) that were attached to the wall of my bladder without penetrating the muscle layer.

 

any opinions?  still have to discuss the results with the doctor, but i am holding out hope that these will be easy to treat.

 

rs

[rob1234]

thx for that.  the timing seems to be lengthening to around an hour and a half. as for path results, i am going to get a copy right now so i know what to ask at the appointment next week.

 

rx

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