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Newly diagnoised with questions.
Hello,
I’ve been lurking around for a few weeks reading the forum posts and gathering information but I haven’t felt the need to make a post until now. (I will be sending a donation to Dalton this weekend as the information I have gathered so far has been very valuable to me.)
Anyway, in short, here is my situation:
I had a TURBT a few weeks ago and two tumors were removed. One was very large (6.0 cm x 6.0 cm x 1.5 cm) and was T1HG. The other tumor was smaller (1.5 cm x 1.5 cm x 0.3 cm) and was Stage 0, low grade.
My doctor believes he got all of the tumors out. So here is my first question (of many):
I saw my doctor the other day and he said he isn’t doing any further treatment for three months. From everything I’ve read it seems a dose of mitomycin or some BCG is the normal next immediate step, especially considering that I had multiply tumors and one was very large and high grade. He was saying that because the tumor was so big he wants to give my bladder time to heal before he applies any medication, if any medication is needed at all.
Does this sound right? Any opinions?
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!7 Replies-
I went to Johns Hopkins (to a bladder cancer specialist, as recommended by this group). He recommended that he go back in and take a look inside my bladder to see if there is any more cancer (he is going to put some kind of dye in there that lights up if cancer is present) then, if all clear (which I hope), I’ll begin six weeks of BCG. He doesn’t think I need to wait any longer for my bladder to heal, although treatment doesn’t begin until early November. I’ll keep you posted.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
Thank you everyone for the information. I have an appointment with Hopkins. I’ll keep looking at the site (and contribute information when I can) and I will certainly keep you updated on my own story.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
John, your instincts are good on this one. I would get a second opinion if you are confused. I would definitely go forward with JH’s, pathology is an interesting thing it seems that experience with the type of cancer being looked at matters it is always a good idea especially with a T1 DX that you make sure there are good margins. The probability of it coming back the same is 60-40 depending on the study but enough to want a review with a center that sees a lot of blc. T1 is noninvasive but it is the one right before T2 so you want to make sure that you are very sure of your treatment and pathology. A second opinion is a great idea even if it offers peace of mind that they both agree. I am not trying to scare you blc is very treatable at this stage you just want to make sure you make informed decisions and keep doing well. A good choice is someplace a University Hospital, an NCI affiliate hospital or best of all a major center. JH’s is one of the best in the world if you are near. Under help in the main menu is a link to our treatment finding if you want recommendations let us know what state you are in.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thanks again, Sara.
I had a specific concern (that he wasn’t giving me BCG fast enough) but your opinion on that made me feel better and now I feel like I probably should hold off on getting a second opinion. I was going to have the slides sent to Hopkins. That’s the way they do it.
I guess it wouldn’t hurt getting a second opinion but I think Hopkins is going to say the same thing my doc said (and your opinion confirmed).
Now I’m confused.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
It is never too early to get a second opinion, as long as you know what questions to ask. I assume that you will have the path slides sent to JH? They will double check the diagnosis and can confirm or modify the one you received from your urologist. Or will you be going yourself for an exam?
Do you have specific concerns or are you just looking for confirmation?
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you so much, Sara. That is a relief.
I’m getting a second opinion from Johns Hopkins. Do you think it is too early for a second opinion?
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
Hi John, and welcome to the club you didn’t want to join!!
Yes, your doctor seems to be doing exactly what he should Some urologists do a wash of the bladder immediately after the TURB (while you are still asleep) and some don’t. For high grade, non-invasive cancer, BCG IS the treatment of choice, and the urologist needs to wait until the bladder has healed from the TURB…usually 3-4 weeks. In your case, since the tumor was so large and the “open wound” area correspondingly large, his caution in waiting a bit longer is certainly justified. If there is any chance of the BCG getting into your blood system, he will postpone the treatment.
However, IMHO, once the bladder is healed BCG would definitely be indicated. At that point, I would want a really good reason why he wouldn’t recommend it.
Good luck to you (and BTW, contributions are always helpful…this is truly a volunteer organization!!)
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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