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AS the 27th Draws Near
As with my last TURBT in Feb. I’m like an anxious child at Christmas time, thinking I might get coal in my stocking. Unlike the first TURBT, I was more concerned with the procedure, this time it is more about what they might find.
First time for anything can be frightening but subsequent times can cause different feelings.
When its all said and done I go back to one of my favorite quotes
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.Regards,
Anne -
26 Replies
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Thank you, it might take me sometime to understand, but I really appreciate you sending me this information. Hope you are doing well now and on the road to recovery.
Regards,
Anne
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Dear Anne,
I was recently diagnosed with TCC though I was fighting the Non-Hodgkin’s lymphoma for a long time now (since 1992). There are so many new treatments for lymphomas/leukemias now that sometimes it’s hard to chose. When I started looking for similar treatments for TCC I was surprised that for the last decade there was almost no progress. But then I found some new research that just started that will drastically change the front line therapies for this cancer, too. What I tell myself is that I need to hang on for 5 more years and then we will have plenty of wonderful choices. The major progress comes from the monoclonal antibodies specific for each cancer and from engineered car t cells. Both are in development now for the bladder cancer. That will be the medicine of the future. The first monoclonal antibody for the PD-L1 receptor got a breakthrough therapy designation for bladder cancer from the FDA. It might be approved very soon or has been approved already. Please, check the articles section where I put some links about some new research that I found. So, keep your spirits up. I understand that some papers are difficult to understand even for me although I am a biochemist. If you google car t cells it gives you some explanation. -
Unfortunately he didn’t do that, not sure why he wouldn’t follow those steps. Even more of a reason for me to make an appointment at Moffitt. Within eight months to have one very large over 5cm, and the other five months later 2.9 cm, seems to me they are growing rather quickly.
Thanks everyone I really appreciate all your support and knowledge.
Anne
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You may have seen us mention here on the Forum often that it is not uncommon for a second TURB to be performed several weeks after the first. After the pathology report comes back, the urologist has a much better idea of where/what he might be looking at inside the bladder. He can then take more samples from areas of concern and arrive at a much better diagnosis. This is common practice in many situations.
In my case, the first TURB showed low grade papillary plus some “areas of irritation.” My urologist went right back and really took samples where the “irritation” was noted and the final diagnosis was papillary AND CIS. This led, of course, to quite different treatment plans than if it had just been low grade.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
After first TURBT waited 3 weeks had BCG 6 weeks 4 weeks later did cystoscope, I think he did take a biopsy from two areas, I remember because it hurt. Then 3 months later cystoscope found another tumor different area, then TURBT.
My urologist said that after the first TURB they do biopsy and if it’s not sufficient they repeat TURB.
Pathology should indicate that they got muscle with the sample. Often, most cases including mine have a second TURB to confirm this.
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.
For my last TURBT Oct. 27th on my way into the operating room I asked the doctor to make sure he had gotten a muscle sample. Because I had read this article the previous week. Now do I know if he did I’m not sure would the slides state that this portion was muscle?
Thank you,
Anne
[quote=”AnneH” post=47316]https://www.google.com/url?sa=t&source=web&rct=j&ei=sbFVVMPdMcypgwTO84PgAQ&url=http://newsroom.ucla.edu/releases/quality-of-biopsy-directly-linked-to-survival-in-patients-with-bladder-cancer&ved=0CCAQFjAA&usg=AFQjCNFQuDnYzoZYnspb4SFMjuY0Vn8i8g&sig2=mW8lWRMbO-Z6ll6TMDM95g
Here is the article sorry I thought someone here posted this information. It really opened my eyes to the possibility since I’m not at an NCI center I might be at risk .[/quote]
Dear moderators, could you please put this link in the article section. Otherwise it hard to find it. Thanks.
Alan thank you, I’m really confused on what my next steps should be. It’s not comforting when you doubt your doctor’s instructions.
Please don’t stop sending me your comments.
Regards,
Anne
Hi Sara Anne,
I know that you are not doctors but I respect your opinion. Im having a difficult time not sure what to do. I did read an article that stated if it’s less than 5%high grade, you treat it as low grade. But it didn’t take into consideration any other factors, such as recurrence, finding a new tumor in a different area. Do you know if it is low grade tumor, isn’t slow growing and recurrence usually doesn’t happen within the first two years?
He pretty much said expect another one in Feb.
The only NCI in Florida is Moffitt guess I will make an appointment Monday.Please continue to post comments.
Thank you again for your help.
Anne
Anne, I may have been similar 6.5 years ago as my URO was stunned with my biopsy after his cystoscope. He said what I had used to be grade 2 but, most now grade 1 or 3 and as I had some some high grade cells he immediately put be on BCG (he studied under one of the pioneers-Dr. Lamm). I second Sara Anne that a second opinion might be in order with a “few” high grade cells found. You want someone that sees a lot of BC!
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.
Anne, as many of us say over and over we are not doctors. So our advice is just about worth what you pay for it! However, the “high grade” part would concern me. Have you considering getting a second opinion on your treatment from a place that specializes in bladder cancer? Yes, Hopkins confirmed the pathology…which is important…but I would wonder why your urologist is taking a “watch and wait” approach if there is high grade present.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Results after meeting with my Doctor.
Doctor said it’s the same grade as the one from February grade two. I stated that is no longer used, it’s either high or low..he said okay it’s low. Asked what are our next steps, he said do nothing until your three month cystoscope, slated for February. I stated the BCG didn’t work he said we don’t know that to be true, it might have progressed without it. Then why wouldn’t we continue with BCG? He than proceeded to say he or I shouldn’t be surprised if another tumor was found in three months.
Based on his response I sent my slides to John Hopkins, keep in mind they only had slides, didn’t know size or that I have had recurrence within first year of diagnosis and had BCG for six weeks.
1. Bladder Tumor resection
A, Benign Urothelium and underlying Stroma.
B. Non-invasive low grade papillary urothelial carcinoma with focal<5% Non invasive high grade papillary urothelial carcinoma.Note the significance of a very minor component of high grade tumor in an otherwise lower grade lesion is of unknown prognostic significance.
That is what I got, so I'm assuming that my diagnosis from my urologist is correct. I'm hoping someone out there can confirm this.
Thank you everyone..
Glad for the good news Anne!
(another)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.Sign In to reply.
