-
Just diagnosed
Just diagnosed with a 5mm tumor in my bladder . Needless to say I am frightened as is my wife I am a 53-year-old male in healthy other than this. Everything I have heard seems to indicate that everything will be fine. Is there anybody else in the same situation as I am any words of encouragement would help thank you for reading
-
50 Replies
-
Good for you, Lupenbill!
-
12 weeks off the smokes for me done with that I will never smoke again
-
Excellent. Congratulations!
-
At this point I think my guardian angel drinks heavily. :) The good news is that this whole incident has given me the strength to quit smoking, after over twenty years! 3 weeks “sober” of nicotine.
Heather
Dx 5/25/2016, First cysto and TURBT 5/23/2016, 2nd cysto and TURBT 6/20/2016, Original tumor size (by CT): 7.3 cm x 4.8 cm x 4.8 cm, BCG 8/31/2016-10/12/2016,
Cysto 11/15/2016: Recurrence :(, TURBT (#3) 12/5/2016, BCG x 3 weeks, off 1 week x 1 year (end Jan 2018)
Cysto 4/5/17: NED!!
Heather, WOW. I want the name of YOUR guardian angel!
Best wishes for your BCG treatments starting next month <3.
I had no symptoms, which is the scariest thing for me. No UTI symptoms, no pain, no blood, no difficulties with urinating. Then I developed a fever I couldn’t kick, finally went to urgent care who sent me to the ER with sepsis. My mom (thank goodness) who drove me told the doctor I once had a kidney stone (years and years ago) so she did an abdominal/pelvic CT that found a huge mass in my bladder. Thank god for fevers.
Heather
Diagnosed 5/25/2016
First cysto and TURBT 5/23/2016
Nephrostomy placement 5/24/2016
Second cysto and TURBT 6/20/2016
Papillary urothelial carcinoma, mostly low grade
No stromal invasion, no metastasis
Original tumor size (by CT): 7.3×4.8×4.8
Starting BCG 8/21/2016
Heather
Dx 5/25/2016, First cysto and TURBT 5/23/2016, 2nd cysto and TURBT 6/20/2016, Original tumor size (by CT): 7.3 cm x 4.8 cm x 4.8 cm, BCG 8/31/2016-10/12/2016,
Cysto 11/15/2016: Recurrence :(, TURBT (#3) 12/5/2016, BCG x 3 weeks, off 1 week x 1 year (end Jan 2018)
Cysto 4/5/17: NED!!
Thank you for your kind words, Lupenbill.
Part of your story remind me of a humorous truism: “A nagging wife will save your life.” ;-)
There really is no “standard” set of symptoms which may indicate bladder cancer. Some people have microscopic blood in their urine, some have a lot, some have none. In my case I had a year of “urinary tract infections” treated by my internist with Cipro. And they kept coming back. Finally, a nurse practitioner told me that IF you have more than 3 uti’s in a year you need to see a urologist. I did. Finally someone checked and there were no bacteria present!!! DUH. CIS!!! I have never had any urinary blood of any kind!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Purrrkat
I’m very sorry to hear that you are in the same situation as I. As you know from my posts that I had papillary carcinoma 4 mm two of them. When the pathobiology report came back it was high grade. I’m praying for you that yours comes back low grade. But even if it comes back as high-grade with BCG treatments the outcome is virtually the same the outlook is extremely good. As for how I found mine I pass of good amount of blood one day. I did not think much of it as I am a very active person and do a lot of heavy activities. I just chalked it up as overexertion on a empty bladder. I mentioned it to my wife that evening and she insisted I see a doctor. I am very glad that she did otherwise we would not have caught it as early as we did. I know that waiting for the pathobiology Report it’s going to be very hard for you to do. It was for me. Regardless of how the pathobiology report come back I believe you’re going to be fine it was caught early and you are in a good spot you seem to have a good sense of where this is going. I did speak with my son about it and he handled it very well I think he handled it better than I. Children amaze me at how resilient they are. I did reassure him that I’m going to live to be a very old man and hopefully embarrass him in front of his kids.
Hi Lupinbill,
I’m in a similar situation, just a few steps behind. My urologist found a small tumor, papillary appearance, less than 1 cm in size. I had my TURBT yesterday, which went fine, and the doctor still thinks low grade and Ta. Now, the wait for pathology results :-(.
I wanted to ask you, and others can chime in as well, what symptoms did you have that ultimately led to finding your tumor? For me, it was a few instances of very faint hematuria; if my vision weren’t as good as it is, I might have missed it. That was over a month ago, and none since, not even on dipstick tests.
It’s just amazing to me that such a small mass would produce enough blood that I could see it. I guess that’s the one blessing, if you can call it that, of bladder cancer. It does announce itself, and early.
I also wanted to comment on your concerns about discussing your condition with your son. I have a 13-year-old daughter and have been completely open with her throughout this process, unknowns and all. This seems to be working very well. It has decreased MY stress because I feel I can be “myself” around the house and if I have a low moment, she knows what it’s about. My husband and I can discuss issues about it with her present (such as appointments, opinions on doctors, etc) and I think the implied “normalcy” is good. She also knows, as I have reassured her, that this type of cancer at this stage is highly treatable. Fact. And that I will most likely live long enough to ultimately die of “old age.” I’m 50 now.
Best wishes to you. Nice to meet you, apologies for the circumstances ;-).
Lupenbill, telling my son and my 4 siblings was very difficult, but they all reacted very well. I gave them all of the statistics and explained what my treatment path would be. For me, I felt much better after I told them.
Sending some good vibes that it goes well for you too :)
Take care,
Lillian
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.
Lillian
I’m trying to get back into the fun part of life. Some days much harder than others. Spending a lot of time thinking about this and logically I know the odds are in my favor of having perfectly normal life. Today’s going to be a very difficult day. I think we intend on talking to her 13-year-old son today about this. I think this is a big source anxiety The fear of how he will react
Send some good thoughts this way. This is going to be very hard for me to do.Lupenbill
Well, it sounds like we have the same Ta HG diagnosis. We are two of the lucky ones who got diagnosed at the Ta (non-invasive) stage. Our odds of beating this wretched beast are very favorable.
All I can say is make sure that you like your urologist and his staff, because you will be seeing them a lot. The BCG treatments are not much fun, but they are very doable. I’ve had 10 treatments so far, and other than some minor discomfort for a few hours after each treatment, I can’t complain. I’ve remained ‘All Clear’ since my first TURBT, which was more than a year ago, so I feel confident that the treatments are working.
It’s much easier said than done, but try to relax and get back into the fun part of your life and live in the present. Try to stop worrying about the future, and take it one day at a time.
Take care of you,
LillianG
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.
One other thing… I usually ask for the lidocaine gel when they do the catheter. It doesn’t really do much for the catheter, but it helps with the first void after the BCG has been inside for 2 hours. AZO is your friend. It’s ok to cry when it burns and scream…Don’t feel weak if you need T3 or any other pain relief. This doesn’t have to be made intentionally unpleasant.
It’s not for everyone, but I had a few edibles when I got my diagnosis too (turns out may reduce risk…) . The catheters are not that painful and only the repetition is what sucks, but as lousy as this sounds, you start to get used to it. My doctor put it in perspective for me. He said, “Josh, there are lot of really terrible horrific cancers out there. Some have terrible consequence, painful treatment, and some where you will wish for death – this isn’t one of them. There usually is little to no spread if you keep up on treatments and preventive care, like scopes. You will die one day, but it is really doubtful it’s going to be from this. So – if you had to get cancer, this isn’t that bad and if you had to catch it, now is the time you want to. Plan to continue along with your life and every few months for the next year and a half you will have to come back and see me or a nurse for a few minutes of unpleasantness.”
I also have a neighbor that just went through Prostate cancer and 2 friends in the middle of treatment for colo-rectal. I have never been more thankful to have bladder cancer – as crazy as that sounds. In the end – little changes in our lives other than we need to be vigilant and get scoped and pay attention to our urine, again, as crazy as that sounds.
Sign In to reply.