Help

8 years 6 months ago - 8 years 6 months ago #49386 by amandah
Replied by amandah on topic Help
Hi,
As others have said - sorry you have to be here - but it is a great place to get info.

My husband was diagnosed with muscle invasive bladder cancer in February. I know that you want to know the grade but in the early stages it really isn't helpful. You just need to listen to what needs to be done and get it done by whomever you feel comfortable with. The first surgeon we saw was all for just cutting out the bladder immediately (which in retrospect may have been the best option!). We then got a second opinion from a surgeon who knew more about the bladder cancer treatment, and was younger so had been trained in more robotic surgery, reconstructions etc. and suggested Chemo first. We have no idea if he was any better but my husband felt much more comfortable with him, and with the team (chemo) approach.

Studies do show that cancer before the surgery is more successful. However, not many studies have been done on chemo AFTER surgery, so it's not conclusive.

However, he only had 2 of the 4 rounds of chemo because scans showed it was not doing anything i.e. the tumor hadn't shrunk, it was probably SO big (9cms) that the chemo just wasn't helping. He was booked for surgery as soon as the effect of the chemo had worn off. He then had surgery where they did a radical cystectomy, removed his prostate and all 8 lymph nodes (2 were found to have cancerous cells). The cancer was too far into the bladder neck for them to give him the neobladder he'd hoped for, and at 56 yrs old he didn't want a bag so he opted for the indiana pouch.

All along I wanted to know the stage but looking back it wouldn't have been helpful to know anyway. What difference will it make to the treatment? The consultant's and oncologists will help you with the best technology has to offer.

As our oncologist tells us "This is curable." My husband has just finished a different course of chemo, (used by the MD Anderson Cancer center) Dose Dense MVAC, as the previous chemo drugs (Gemzar & Cisplatin) didn't seem to be effective for him. I'm telling you all this because we seem to have been through a number of options, regardless of the stage of the cancer.

Has it worked? We'll know in 5 years apparently. That is very hard to hear/know but we have to just hope - like most cancer patients - that it doesn't come back.
Reading reports on this forum shows us that it is possible to survive this cancer. Be prepared to know more about the bladder than you ever wanted to!! Stay positive, and get the best advice you can.

Love and best wishes, Amanda
The following user(s) said Thank You: DougG, cmymob

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

8 years 6 months ago #49385 by Plk
Replied by Plk on topic Help
Dear Cmymob,
I was diagnosed with high grade invasive bladder cancer in February, based on a biopsy. My tumor was abutting the muscle wall. I was seen at the Cancer Institute of NJ by a surgeon who specializes in all types of bladder can we and he told me that surgery was more successful when chemotherapy was done first. He said it made surgery easier and provide a high long term success rate, and less chance of cancer spreading. I am not a doctor, but if you are not at a cancer center, seek out a second opinion. Chemo wasn't easy, but my scan showed no spreading and the bladder tumor was significantly smaller. II am having a radical cystectomy with an Indiana Pouch next month, so I am still learning a lot, but these are just my thoughts based on my experience.

PLK in NJ
The following user(s) said Thank You: cmymob

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

8 years 6 months ago #49380 by Cynthia
Replied by Cynthia on topic Help
Sorry you have to be with us but welcome to our community. First off as for the stage and grade I am glad that you asked for your pathology report. Where as the best pathology can only be done after the Radical Cystectomy many times it will remain the same and it gives you an idea of what you are dealing with. T2 is stage two by the way the same as I was diagnosed with ten years ago. Here is a link to our page that will give you some more reading on grading and staging.

bladdercancersupport.org/bladder-cancer-help/information/staging-and-grading-pathology-bladder-cancer

If you are not getting treatment at a center of excellence for bladder cancer you might want to think of a second opinion. Experience in the type of diversion you are receiving is very important in outcome. For example the local Urologist that dxed me did not give me any choice in the type of diversion he offered. He also did not think that it was important to preserve nerves for sexual function. He did a few Radical Cystectomys a year. The Doctor who did my RC did three to five a week and I have a diversion that works much better for me than what was offered locally. We had a conversation about preserving sexual function prior to surgery and I was very relieved that he was very aware of the issues with nerve sparing in both men and woman.

I know right now you are in shock but take a big breath this can be done many of us have been where you are now and have came out the other side.

Keep us updated and ask questions we are here for you.

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
The following user(s) said Thank You: cmymob

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

8 years 6 months ago - 8 years 6 months ago #49379 by Alan
Replied by Alan on topic Help
Sorry you are here but, glad you found us. Bladder cancers normally are rated as stage/then grade. T2 does mean stage 2 (muscle invasive) but, I also read possible lymphatic invasion-which I presume means possible lymph involvement. A couple of items. None of us are doctors but, often we suggest a second opinion however don't delay because of your reports. You want a large practice or teaching hospital that does many of these and not prostatic cancer. How many does your surgeon do a year is important as you want someone doing 30-50+ a year. Your path report is yours-you paid for it so get a copy. There is a wealth of info on this site so take advantage of it as I am a terrible typist!

In case your husband does need a cystectomy here is a link of the 3 types of diversions available: my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

Keep posting with questions, someone will have a suggestion or answer.

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.
The following user(s) said Thank You: cmymob

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

8 years 6 months ago #49377 by cmymob
Help was created by cmymob
My 53 year old husband was diagnosed with Bladder Cancer this week. He is waiting for his consultation and surgery date for a radical bladder cystectomy. When I asked the doctor what stage his cancer was he said to wait until after his surgery. This didn't seem correct to me. Anyway..we later received his pathology report..It says Urothelial (transitional cell) Carcinoma he has invasive high grade urothelial carcinoma infiltrating muscularis propria (pT2) focus consistent with lymphatic invasion Can anyone tell me what stage this means. I think pT2 means stage 3 but Im not positive. Also if anyone is familiar to this cancer any knowledge or advice would be greatly appreciated. I love my husband so much. This is like a bad dream.

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

Moderators: Cynthiaeddieksara.anne