× click the New Topic button to post

Results of my 1st TURBT/Patholgy Diagnosis

1 month 4 weeks ago - 1 month 4 weeks ago #57639 by NelsJenn
Dear Jack and Sara Anne,

Thanks so much for the response, and for emphasizing the responsibility I have to myself in seeking out the best option for my cancer treatment. Moreover, that these decisions are mine to make and for me to live with.

You know, I am very thankful that I found all of you. Reading everyone's story, not only educates me on the bladder cancer journey, but it also makes me feel that I'm not alone in this.

Going to UCSF will be quite a trip, since Arcata is a five hour drive to San Francisco. We are asking ourselves, Can treatment be realistically done at such a distance? What happens when complications, even simple ones, happen? I think about when my catheter was removed and my groin muscles tightened up and I was left with excruciating pain. Who will I go to when UCSF is a five hour drive away? Would I check in at the local emergency room? Would my present urologist still want to be involved with my care?

I am guessing these concerns will need to be negotiated.......

Thanks for the clarity and support, Lee

Please Log in or Create an account to join the conversation.

1 month 4 weeks ago - 1 month 4 weeks ago #57637 by Jack R
Lee,

There is no disrespect in seeking a second opinion, or choosing one recommendation over another. All responsibility for decision making is on you, and all doctors expect that you understand and will carefully consider all available options. Where and with whom you will treat is your decision.

Your current doctor HAS recommended bladder-sparing treatment. Apparently, in her/his opinion, you are a good candidate for BCG treatment. A second opinion may support or disagree with that recommendation.

The 3 or 4 year BCG treatment plan you describe (Dr Lamm or SWOG protocol) has good studies as to effectiveness. If at any point the treatment is not working or stops working, it is then time to reconsider all options.

Bluelight is new. It is helpful in detecting cancer for some people. It provided no additional information for me.

*IF* you get the point of a RC, yes, you want someone who specializes in the procedure. It is not a procedure that my great local urologist would perform.

You need enough information or opinions to be comfortable in your choice of how to proceed. It can be a daunting task.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

Please Log in or Create an account to join the conversation.

1 month 4 weeks ago #57636 by sara.anne
Whoa! I am not recommending which way you go here....that is an important decision and it is YOURS. I was just pointing out that your current urologist has, so far, done just what needed to be done (often someone posts here and it is hard NOT to say "run as fast as you can away from that doctor"....which we cannot, of course, say.)

Since you feel that you might get a better, clearer diagnosis elsewhere then that is what you need to do. AND it needs to be done asap since there are still some major questions in your diagnosis. Yes, your second TURB should probably be done with the new docs.

My comment about BCG was because I wondered if you lived within "commuting" distance of San Francisco. I had to drive 20 minutes after treatment and sometimes that was difficult!

I am definitely not against second opinions. In fact, we often joke that our motto here should be "Get a Second Opinion." My urologist told me at the beginning that if it came time for him to recommend cystectomy he would REQUIRE that I get one.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

1 month 4 weeks ago #57635 by NelsJenn
Dear Sara Anne,

I am feeling by your feedback that I should continue my bladder cancer treatment with my present urologist, instead of going to UCSF. I can see getting the intravesical Immunotherapy with BCG with my present urologist, since the procedure is not complicated (you just fill the bladder up with the BCG and let it sit). On the other hand, it's hard not to have my second second TURBT done at UCSF with their use of blue light cystoscopy and laser cutting technology.

Furthermore, if it gets to the point of getting a R/C, won't it be better getting it done at a facility that have surgeons doing RCs a lot and utilizing robotics?

Of course, all the fancy tools, such as blue light cystoscopy, could not be so much better than a skilled surgeon with skilled hands and/or a good eye. I am assuming the new technology is more precise and complete. Is my assumption wrong?

Am I overlooking something about my present urologist in my desire to go get treatment at UCSF?

Please advise, since I don't wish to be disrespectful to my urologist. I just want the best course of action to get rid of the cancer in my bladdder.

Much thanks, Lee

Please Log in or Create an account to join the conversation.

2 months 7 hours ago #57622 by sara.anne
First of all, Lee, the advice we always give after a diagnosis such as yours is....take a deep breath! This is NOT the best diagnosis (I would put it in second place!), but it is certainly not the worst. What your urologist is recommending is exactly what he should recommend. A second TURB will take away any uncertainty caused by there not being any muscle present in one of the samples and should always be done in such cases. Unfortunately, many urologists (unlike yours) do not do this.

If you still feel that you need a second opinion, now would be the time to do it. Your urologist is recommending the second TURB asap just in case the muscle is involved in the area where that is uncertain. His treatment recommendations would change if that is so, so that is why the urgency.

BCG is not a complicated procedure and is done in the urologist's office. Should you go to San Francisco for a second opinion, and should it mirror your current urologist's, you might want to do the BCG closer to home.

Many of us have had diagnoses similar to yours, done the BCG, and are doing great.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

2 months 8 hours ago #57621 by NelsJenn
Dear Members,

I have received a diagnosis from pathology after my first TURBT, where my urologist took tissue samples and removed as much of the cancer in my bladder as he could. I have been classified as a T1, High Grade, bladder cancer patient. Although my bladder cancer is superficial (the cancer has not invaded the muscle layer), the cancer was extensive throughout my bladder. Below is the summary of my pathology report:

Pathology Final Diagnosis
====================

1. RIGHT ANTERIOR BLADDER, TRANSURETHRAL RESECTION:
- INVASIVE UROTHELIAL CARCINOMA, HIGH GRADE WITH GLANDULAR
DIFFERENTIATION.
- TUMOR INVADES LAMINA PROPRIA.
- MUSCULARIS PROPRIA NOT PRESENT.

2. LEFT POSTERIOR BLADDER WALL, TRANSURETHRAL RESECTION:
- INVASIVE UROTHELIAL CARCINOMA, HIGH GRADE WITH GLANDULAR
DIFFERENTIATION.
- TUMOR INVADES LAMINA PROPRIA.
- MUSCULARIS PROPRIA PRESENT AND UNINVOLVED.


My urologist went over my treatment options yesterday. He did not recommend any form of bladder preservation approaches, because of the extensive spread of the cancer and the use of radiation which will affect the surrounding organs, such as the intestines, kidneys, liver, etc.

He did, however, recommended another TURBT with Mitomycin-C and a series of intravesical Immunotherapy of BCG. This three to four year treatment plan would look like this:

2 TURBT Procedures with Mitomycin-C (2-4 weeks apart)
6 Intravesical Immunotherapy Procedures with BCG (1 every week)
3 Intravesical Immunotherapy Procedures with BCG (1 every 3 months)
4 Intravesical Immunotherapy Procedures with BCG (1 every 6 months)
Close observation by Cystoscopy 1 every 3 months for 2 years
Close observation by Cystoscopy 1 every 6 months for 2 years

My urologist said the goal would be to eradicate the cancer cells so that they would not invade the muscle layer of the bladder and spread throughout the body. With that said, he indicated that the treatment is not guaranteed, and the cancer could spread throughout the bladder and other organs at any time of the treatment.

With that said, he said I could consider an R/C at this time.

I am in a state of shock and fear. Do these options sound correct? Has anyone had similar experiences with their bladder cancer journey? Does anyone have any advice? My wife and I are struggling with what to do!

Moreover, my wife and I have been searching for a hospital that has a specialization in bladder cancer treatment, and we have found the University of California, San Francisco and Stanford University. Our urologist supports our need to have a second opinion to verify his assessment, but I get the feeling that he still wants to implement the treatments. He has been eager to move forward with the second TURBT procedure. In fact, he wanted to schedule this second TURBT in two weeks after the first one! Does this sound right?

I am thinking of getting further treatment from UCSF or Stanford, because these places utilize technologies like blue light and laser resection tools. Will these tools increase the chances of eradicating the cancer cells in my bladder? Furthermore, if I need an R/C, I would like to have it done at a facility that utilizes robotics and has surgeons that have done R/Cs in large volumes. Is there a tactful way of expressing these concerns to my urologist without insulting him and/or alienizing ourselves to him?

Can intravesical Immunotherapy be done by traveling to UCSF or Stanford? Has anyone in this forum done this?

If you have any feedback, please write back to me. Very thankfully, Lee

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 743 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: mda4960
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 52348 Total Subjects: 6784 Total Users: 8284
Powered by Kunena Forum