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Most likely non invasive high grade cancer…:thoughts????
My dad has his turbt yesterday to remove a 1cm tumor. Doctor said he also “burnt” an area next to the tumor that would probably turn into something within the next 6 months. He is sending the tumor to pathology but is guessing it’s high grade. How can he tell???? Said my dad will need 6 weeks of BCG if it’s high grade and without the treatments he has an 88 percent chance recurrence. So…in all honesty…what are we looking at here???? Prognosis? My dad is 73. He’s otherwise healthy and would love to live a while longer. I was really hoping for better news but I don’t understand how the doc can “guess” the grade by looking??? And what’s it mean about burning the other small area!!? Any help would be appreciated. I’ve been awake all night with worry.
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7 Replies
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This is about as good as it gets…congratulations!!!
Just remember that bladder cancer has a nasty little habit…it can come back. So take the appointments for checkups with the urologist very seriously. The usual protocol is every three months for two years, then every six months for the next four years, and then annually forever,
Again, great news!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Well the doctor was wrong….path came back as low grade!!!!
Non invasive low grade urothelial carcinoma.
Architectural: papillary
Flat carcinoma in situ: not present
Lamina propria: present but not involved by Tumor
Muscularis propria: present but not involved by tumorThoughts??????? I’m thinking this is good news.
Nope. Never had a recurrence. (your mileage may vary!)
BCG is not fun, but very do-able. It is certainly much better than the chemotherapy that many patients with other diagnoses need. There are side effects, and they increase as the treatments continue which indicates that the treatments are WORKING, kicking up the immune system. But you don’t need to worry about these until you get a firm diagnosis.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Sara Anne,
Thank you! Positive outcomes make me feel better!!!!!! Obviously I hope it turns out to be low grade but I’m guessing he saw something that made him guess high grade. Have you ever had a recurrence in all these years???? How are the BCG treatments to tolerate???? I’m hoping he will make it ok. Thanks again.
Hi there, Jessica.
Alan has given you some good information, but thought I would just add to it a bit. I was diagnosed with high grade over 11 years ago, did the BCG routine, and have been cancer-free ever since.
The urologist probably did take a sample of the suspicious area before he got rid of it. They usually take samples of multiple areas of the bladder. He then removes anything that looks like a “tumor” and burns off anything that is not a discrete tumor but looks funny.
The return rate he quoted is without further treatment. We are fortunate to have something like BCG which is the standard of care for high grade bladder cancer and is often very successful. Your dad has a very good chance of beating this!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks Alan! I thought that about him maybe seeing CIS patch too. He did mention “burning an area that looked as it could develop into something in 6 months”. I wonder if that’s what he means? Wouldn’t he want to biopsy that though? Not just burn it away???
Obviously I’m scared but I’m hopeful he will beat this.
He’s doing well today and the pain is improving as the time goes on. His follow up is next week so we should get path then. Thanks again.
Jessica0027,
I am with you as many of us have often said “one knows NOTHING until the pathology is done/read”. Even my own URO when I asked said the same thing although when I pressed he guessed low grade. He was surprised when it came back high grade.
IF he saw CIS in conjunction with a 1 CM growth, red rash like area that is what he probably was guessing on as it is always high grade. Let’s not dwell too much as it is meaningless as mentioned until you get the report.
The important key is the doc got good margins on the sample and the muscle is not invaded. 1 CM is considered small on these types of tumors. Also, 88% recurrence. 2 thoughts here. I have never seen such a stat that high (I have edited as I now see “untreated” which is true if high grade is left alone)…more like 50% otherwise with treatment. Second, any stat is just that…meaningless as everyone is an individual. BCG does work on the majority of patients including many that post here.
Take the deep breath and take one day at a time. If I had to guess your Dad will beat this as “Stats” say a good majority do and will live many more years. Good reasons to be optimistic!
Lastly, if you ever lose confidence in your Doc many of here say get a second opinion for fresh eyes and peace of mind. Keep posting as you go and pst yourself on the back as a caregiver! It really sounds like your URO is on top of it.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.Sign In to reply.