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hi again
Thought I would wait till my follow up cystoscopy :(
I have a tiny tumor that came back He said the size of a lower case O so i guess like this o . he will outpatient this by zapping it in his office. He said he does this quite often since bcg doesn’t work for everyone.i was upset but I think it is early and I am not dying or anything. I just don’t know what will be suggested after he gets rid of the latest tumor.
More bcg? If not what other stuff do they do?
I am mad, sad, all kinds of emotions right now . they kind of keep creeping up on me . then I am ok for a few hours , then I start all over .
hope everyone else is doing well.
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18 Replies
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That was so funny Flamenco heehee, it does feel like that :laugh:
pemquid, i did get a $3000 break on the procedure , he charged$1400 instead of $4300 what he would charge someone on medicare since I don’t have insurance at the moment. I thought that was really nice of him. he said it is the same as they would pay him, but he gets the rest from medicare. i won’t get that for years so i sure am glad i been saving and investing my money . now i know why .
but he is all paid for for now. :)
no biopsy , but i trust him and his judgment about all that stuff.
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Hi Susan.
well i can·t tell you how happy i am today. My cysto all clear, can breathe a sigh of reief for another 3 months. Guess we will be scheduled again for about same datein 3 months time. Glad all went ok for you. And yes, this time can·t understand why am drinking water but peeing sulphuric acid LOL
your bc friend Flamenco -
I’m glad to hear your procedure went well. Did you ask your urologist about doing a biopsy? Or, did he just “zap” without taking a sample first? Although it costs more to have the biopsy and pathology report, I feel a lot better knowing that this is done (maybe easy for me to say, since I have insurance and just a $20 co-pay for the in-office procedure).
You mention that your procedure was costly. If you do not have insurance, some doctor’s offices are willing to charge patients on a sliding scale based on income. It might not hurt to ask. If you do have insurance, some insurance plans will pay for procedures done in the hospital (outpatient surgery) and won’t pay for the same thing if done in the doctor’s office. Since it’s more expensive to have procedures done in the hospital, I can’t understand why companies would do this. Our healthcare system is surely in need of a major overhaul!
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.
Well i had it done and of course it burns like heck to pee,but other than that I am just really tired.
He will do a follow up cysto thing in 3 months , but not doing anything else for now. so I guess if it comes back then he will suggest some more treatment.I think I will call and ask about that. it cost alot to have this done, so if there is another way to get rid of the tumors it sure would be nice.
But i am ok, and it wasn’t as bad as I thought. I even got to watch it done on a tv thing while he was digging around . pretty interesting .but i’d rather just watch than participate lol.
by the way the tumor was actually pretty if you didn’t knwo what it was. it looked like a flower . isn’t that weird/
Hi Susan,
will be wishing you luck on the 18th. I go for my cysto the same day so keeping fingers crossed for myself too !!
From past experience with the “zapping”” I personally take a dose of Diezepan before I go. Am not usually too nervous about things but the first time I had it done with no tranquilizer I was shaking like a jelly after not because of any pain, but the noise the machine made before each zap !!! A bit like how you tense up when you hear the dentist drill even though your tooth is numb !
Hope we both have good news to share on the 18th
Regards, Flamenco
Thank you all very much. It is a very, very tiny tumor , and I do trust my doctor. He is one of the best in around my area. He and his staff really seem to care.
I am sad tonight but feel ok most of the time. i try not to have so much of that sorry for myself stuff but it does come up when i least expect it.i’ve had a very nice weekend so far so i really shouldn’t feel sad . i just really wanted to come here and say that nothing was found. at least I won’t be dying from it. just a big stupid bother to have that tube stuck up my peepee another time :)
Who in their right mind wants to be a urologist anyway? i guess you got to be kinda weird , if you ask me, but sure glad there are some .my operation (procedure) is thursday the 18th . bye for now and thanks again
Oh, I won’t be having anesthesia , just a local bladder numbing . I hope it numbs it really good . sighing
Hi Susant,
Your emotions about your latest news mirror mine. I really had a hard time dealing with facing another turb after 2 years of 3 turbs, 9 BCG treatments and many cystos.:( I also began to question the constant need for general anesthesia for my very tiny tumor or polyp. I got my medical records and found that I had had no biopsy of the previous “tiny tumors”. They had been “burned away”. I do not doubt that they were there, I just could not face yet another round of something I suddenly saw as unecessarily invasive.
I do not know if my feelings were merely a denial of BCG failure (and I do not know if it has failed really) or just anger at the doctor who was supposed to “save me”.
I urge you to request your medical records, review them and get another doctor’s opinion. You may have all the faith you can have in your doctor. You may be just feeling those emotions of anger and denial. Sometimes just hearing your diagnosis explained again can help.
Our forum is the place to lay it out and help the thinking process. People who are going through the same procedures can guide and calm you. You can step back and take a deep breath before going on. With BC it is really hard to keep on doing what seems like a losing plan over and over, and getting the same results.
we all deserve a “sick” day once in awhile. it helps clear the air , so we can start the battle again
you go girl..we’re all here to help
peter
grampadonut
dx t2-g3
05/07/08
Just so you know it is ok to have a pity day. I do it myself every once in a while. BC is such a sneaky b*****d that it can scare us. So have your pity day and feel better. Then pick yourself up and battle on. Just remember we are marching by your side.
Webs
Sorry I am being a baby about this, but I am very depressed and having a pity me day today.
Is it pretty much ok to feel sad and worried that maybe this will lead to worse and worse cancer? Will it lead to cancer in other places? I can’t believe this is happneing to me. No one in either side of myfamily has had this. i feel very picked on right now like the whole world is against me.i suppose it will pass just that it is making me tear up all day :(
You all seem to take this much better than me :unsure:
Pat, (and Susan)
We have had the discussion about “zapping” before. Lots of us were uncomfortable with the idea. I searched the forum and found the answer Wendy gave a while back and it makes sense….
Re: Has any one been “zap” for reacurance? 1 Year, 3 Months ago
Hi,I’ve met a lot of folks that are zapped in the office for small recurrences. The rationale is that it saves the bladder unnecessary wear and tear, no biopsies are done and no resection/cutting. It’s only used in cases where there are small, single, low grade tumors=the doctor can tell if it’s low grade especially if he/she knows for sure that’s what the patient has had in the past. When there is the slightest doubt, pathology is needed, and laser removal of bladder tumors makes pathology impossible.
You mention that you had BCG, do you know what the original diagnosis, stage and grade, was? Was this your first recurrence since finishing BCG?
All the best,
Wendy
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi Susan,
Sorry to hear that you had a recurrence, but you sound as though you are in good hands. I·ve also had a couple of recurrences, zapped in surgery , and at the moment all clear. Have my 3 month scan next week, so will let you know how I go on. Good luck with yours.
FlamencoI don’t like the idea of no biopsy no matter how small it is.
Pat
It really is discouraging to have a recurrence, no mater how tiny, and no matter how much you tell yourself that the odds of a recurrence are very high statistically. I was just plain mad myself, especially since it happened at the 2 year anniversary when I was looking forward to going to 6-month check-ups.
I concur that you should make sure the uro excises the tumor, even though it’s tiny. My recent recurrence was two tumors, each the size of a pinhead, and the uro cut out one for biopsy, then “zapped” (fulgurated) both of them. This was an in-office procedure, and went fine (he had me take a sedative and painkiller ahead of time, and used local anesthesia). Even though he was sure the new tumors were the same type as the original one (low grade, papillary, non-invasive) he wanted to do biopsy to make sure. Because of the recurrence, he’s now got me on my first round of BCG. I gather you’ve been on BCG; have you done a full course of 6 weeks, with follow-up 3-week maintenance over a period of time? I think you can continue with BCG even if there’s a recurrence, but they may want to try BCG+interferon. My uro uses mitomycin when BCG doesn’t seem to be doing the trick.
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.
Apparently I messed up the varying font size in my post.
You know what I mean though.that’s why regular checks are a good idea. Catch it quick and get rid of it quick.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
