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My Diagnosis – What should i do next
Hi,
I was recently diagnosed and had a TURB Surgery and pathology reports are Back.
I had a multi focal (Total of 3)small tumors, Transcitional Cell Carcinomas of high grade, T1- Had not invaded the muscle.
The Dr. is recommending BCG Treatment and next follow up Cystoscopy 3 month after the initial TUR. But he has not recomended a new TUR. Should He? Who should i see for a second opinion, a Urologist, Oncologis?
Regards,
Camilo
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Age 40 Male DX – Jan 23, 2008 Multifocal T1G3
Triathlete 4ever8 Replies-
Rosie…In regard to Eoquin…Spectrum Pharmaceuticals out of Irvine, Ca Phase 3 protocols are open and currently recruiting patients in the United States.
Pat -
Hello Camilo,
The urologist did a through job by including a muscle tissue specimen in your pathology report. In my opinion through much research, there are countries more advanced in bladder cancer treatment than the United states. Often times the new recommendations and newest tested treatments originate from another country. A good case in point is a treatment known as Eoquin where effective chemical resections are done without the need for surgery (TURB). There is a write up on the success and use of this in other countries but the US does not presently allow nor is doing clinical trials for chemical resection. Presently, Eoquin is only being used in a clinical trial in the use as a one time installment after TURB. I would much prefer a chemical resection than another cut and burn surgery. So possibly your country has some innovative treatment that would not necessitate a trip the the US.
Your controversial friend LOL, Rosie -
Hi,
There was muscalr tissue sent to the patholgist and it found “no invation of the muscularis propia”. I sent the guidelines to the Dr. And we schedule a follow up appointment.
I am scheduling a second opinion with a Uro-Oncologist but unfortunatly i live in a small country and even though our primary medicine is up to par with most countries in the world we don’t count with highly specialized reference/university hospitals like the US.
Depending on the opinion of other Dr. I will try that possibility of traveling to the US. I will keep you posted.
Camilo
Triathlete 4ever
Hi, and welcome,
I read an article recently about guidelines and bladder cancer, and the trouble is that nobody follows them, less than 5% of uros who were surveyed. What better way for uros to get educated than for patients to point out recommended guidelines and ask for them to be used?As to your question about the choice between uro or oncologist, in an ideal situation the answer is a uro-oncologist. There can be many modes of treatment coming into play depending on things. A good pathologist is also a must, and uro-pathologists are only found in the top institutions. Second opinions on pathology are often recommended if there’s the slightest doubt of putting yourself at risk of mis-diagnosis.
Understaging is common, as is overstaging, but of course the risk lies in missing a muscle invasive tumor and treating it too conservatively. The 2nd TUR approach can be very informative, tumor is found on the re-TUR too often with T1 tumors. Now it’s official in both the US and Europe to do a 2nd TUR for T1 or high risk tumors.
Your doctor is following the guidelines when it comes to recommending BCG for a T1 high grade tumor, it is an excellent treatment if it works (and it does most of the time).
I wish you the best,
Wendy
Cynthia, thanks for the link you gave for the new AUA guidelines for bladder cancer. It is important to note that the recommendations for a second TURB is advised when there is no “muscle tissue” taken to be analyzed in Pathology from the original TURB. So Camilo in answer to your question I would ask did your biopsy contain muscle tissue? If not, a second TURB is the recommendation before starting treatment. I see the new recommendation now encourages a chemo agent be instilled at the resection because Dr. Hall said, “It’s thought that when you biopsy or resect a tumor, you can release cancer cells that can then seed other areas of the bladder.” Sure makes sense to me. Mitomycin was specifically named as a chemo agent in this article but I know there are other chemo agents also being used effectively. I am so thankful I finally had one instillation of Mitomycin at my 5th resection last September.. The information contained in this article indications for treatment and/or the effectiveness with BCG and Mitomycin for low grade was also quite informative. Rosie
Camilo,
Here is a good piece that you might find interesting it is the newest recommendations on returb from the AUA.
Chin up and straight forward
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
Hi Camilo,
Your case sounds a lot like mine.
I was diagnosed April Fools Day last year.
I had 6 BCG treatments over the summer. My first
cystoscope, a few months after BCG showed no signs of any recurrence.
My Dr. just took another look today and said it’s still 100% clean! I’ll do
3 more BCG treatments in April and then checkups on a regular basis after that.
Being the eternal optimist, I’ll say I’ve beaten it.It never hurts to get a second opinion but his plan sounds
exactly like the one I followed.
All I can add is to be optimistic. It can be dealt with and gotten past.
I intend to be living proof of that for many years to come.Good Luck
PR
Hey Camilo!!
We have the same Dx…multi-focal T1 G3. I feel very comfortable with my Urologist decision to do a Re TURB about 6 weeks after initial TURB to check for residual tumor. He did find residual too!! I had Mitomycin with each TURB and began BCG’s about 5 months after initial Dx.
I obtained a 2nd opinion (and 3rd biopsy) from a nearby University teaching hospital which was also a multidisciplinary clinic. This means that there were Urologists, Radiologist and Oncologist all sitting at a round table discussing my case.
If there is any way to obtain a second opinion from a teaching hospital or multidisciplinary clinic, I would highly recommend it.
Nice to meet you,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
