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  • Newly diagnosed and overwhelmed

    Posted by chaismom on July 30, 2017 at 12:09 am

    I was diagnosed with bladder cancer on 6/13 and have since undergone TURBT and found that the tumors (one large-ish and several small) had invaded the muscle. CT scan seems to indicate that it has not gone further, though another has been ordered to confirm. My oncologist is Max Meng at UCSF. He’s going to do a second TURBT on the 14th of August. I need to make a decision re: chemo followed by bladder removal and/or neo bladder and chemo/radiation/chemo and then keeping my bladder and repeating the scope (and possibly the TURBT) every 3 months. I’m 67, female, heavy and not in great shape. How do people make this decision? I’m overwhelmed. Not a whole lot to be found for neo bladder in women (recent). And keeping my bladder seems like it could come with a 50% that I’ll lose it later on (if I’m understanding it correctly). I need information on the pros and cons of each choice. I should also say that, while I have a great support system, I live alone and while my daughters and sibs are more than supportive the daughters are both pregnant and don’t live that close to me (90 minutes and 3 hrs respectively) and my sibs are an hour or so away. UCSF – where I will get treatment- is nearly 2 hrs from home. I am also still working full-time. Yikes! Any input would be greatly appreciated.

    texasbonfire replied 7 years, 2 months ago 5 Members · 7 Replies
  • 7 Replies
  • texasbonfire's avatar

    texasbonfire

    Member
    November 27, 2017 at 4:23 pm

    Shann,

    How are you doing with chemo?

  • texasbonfire's avatar

    texasbonfire

    Member
    November 27, 2017 at 4:21 pm

    Hello KathyH514!

    I had my radical cystectomy surgery September 11, 2017 – that’s 11 weeks ago and I have adjusted quickly with no problems. The surgery was postponed due to Hurricane Harvey. When they performed the surgery, they “injected” long acting pain killer in/around the incision which made recovery possible on just Tylenol for me once discharged from hospital (4 days).I did feel abdominal pain when laughing, coughing or sneezing though. The worst part of recovery was being severely constipated and no appetite first four weeks. If you can’t drink Ensure, grab a vitamin and drink a glass of regular milk (or 2%, etc).

    The main reasons for my team to discourage the neobladder are: possibility of more complications during and after surgery; women have a higher instance of incontinence than men; the neobladder is made from intestine and will have mucus threads that can block urination; and, a possibility of cancer developing in the urethra (otherwise removed if you get the urostomy bag). Also to consider is that you may not be able to fully empty the neobladder so catheters will be needed. That is not something I wanted to do. Add to all of this, the fact that you have to “potty train” you new plumbing for 9 or more months.

    The Indiana pouch requires using a catheter to empty (again not what I want to do), may have more complications than the ileal post-op, leakage, and pouch irrigation due to mucus.

    I have a urostomy pouch, but need to try a few types as I had no idea there are so many! I am still getting used to to how much output there is – had no idea I produced so much urine. No one seems to notice the pouch until it gets somewhat full, and even then it just looks like I have something in my pocket. I change the bag twice weekly. I have returned to exercising (moderately) and started training today to hopefully run a 5K in March to celebrate my one year anniversary of starting chemo. That’s 16 weeks from now, so wish me luck!

    Brief recap – stage IV bladder cancer that was also found in a couple of lymph nodes February 2017. Started chemo March 20, 2017. Had radical cystectomy September 11, 2017. Follow-up with pathology results stated no active cancer found in bladder, but a few cells in a lymph node out of the 24 that were removed. All margins were negative. CT scan at 8 weeks can back good. Monitoring every 3 months with 1st appointment in February 2018.

    Sending good vibes, well wishes and big hugs to everyone! Carol

  • KathyH514's avatar

    KathyH514

    Member
    November 9, 2017 at 2:13 am

    Hello Texasbonfire,
    You mentioned that the Indiana pouch was discourage by your treatment team. Could you provide details? Right now trying to decide between indiana pouch or the ileal conduit, a neobladder is not an option. I keep going back and forth between the two. I am a 58 year old female. Thank you for any information you can provide.

  • Chaismom's avatar

    Chaismom

    Member
    September 4, 2017 at 9:26 pm

    Hi BJ,
    I was just cleaning out my spam folder and came across your reply to my original email. I’m pretty sure I never responded.

    Thank you for replying with exactly the right advice. Now, almost 2 months later, I have undergone the second resection, which confirmed the diagnosis and added “extensive squamous cell differentiation” to the mix. Based on that info and, after doing a whole lot of research and meeting with several docs, I’ve decided to go forward with the chemo/ bladder removal choice. Making the decision helped me calm down a bit. I will start chemo next Monday and am a bit anxious about that. I’ll do 4 cycles, followed by the surgery 6 weeks later. It’s gonna be a long haul, but I’m nothing, if not resilient.

    Anyway, thanks again. And my apologies for the delayed response.
    Shanna

  • texasbonfire's avatar

    texasbonfire

    Member
    August 22, 2017 at 8:14 pm

    I am a 58 year old, single female and my kids live out of state. I was diagnosed with stage IV February 10, 2017. The cancer had gone to nearby lymph nodes.

    I am treated at MD Anderson in Houston (lucky to live here!) Four rounds of Ifosfamide/Gemzar/Doxorubicin (inpatient treatment) followed by two rounds of Gemzar/Cisplatin. Did good on the 1st chemo cocktail, but the second cocktail knocked me pretty good and we stopped after two rounds. My lymph nodes were in complete remission after four rounds and my last cystoscopy made the doctors confident to move on with surgery. I have been working throughout treatment, although sometimes it was from home.

    My surgery is August 30. I had a hysterectomy 20 years ago, so that will not be part of this cystectomy. I have done a lot of research and decided to go with the ostomy bag. I am moderately active (swimming, biking, etc) and have found a good number of athletes with bags!

    Up to 40% of women have some level on incontinence with the Neobladder. I initially thought I would go that way, but found out about the incontinence rate, using catheters, and being potty trained. There is more, but you get the idea.

    The Indiana pouch was discouraged by my treatment team. If you want details on that, let me know.

    Oh…during my chemo, I used Zofran for nausea during treatment and it worked. I sometimes would have an unhappy stomach, but never vomited or was miserable. The first shot of Neulasta made me feel like I had been hit by a truck. During the second round of chemo, I was given Claritin, which almost eliminated the pain I had from Neulasta.

    Everyone is different, so your experience will be different from mine. Surround yourself with positive and happy things. It can make a difference!

    Wishing you the best!!

  • BJ's avatar

    BJ

    Member
    August 10, 2017 at 6:07 pm

    Hi,

    Take a deep breath and on your computer go to these sites
    Uptodate.com/contents/bladder-cancer-treatment- invasive-cancer
    mayoclinic.org bladder cancer
    also just type in you questions and things will come up

    Good Luck and relax.

  • sara.anne's avatar

    sara.anne

    Member
    July 30, 2017 at 3:12 am

    So sorry that you find yourself here….and you do have a lot facing you in the near future! You are very fortunate that you are in a place where you have an “abundance of riches” in the treatment of bladder cancer, however.

    First, please remember that if the cancer has not spread beyond the bladder, radical cystectomy (removal of the bladder) is a definite CURE. And many people live full lives without a bladder.

    I have not had to face the decisions that you are going to be making, but there is always the thought that someday I might have to, so I have sort of figured out what I might do in your situation. But these are very personal decisions.

    Most patients do have the bladder removed; radiation treatment has not always been successful and can lead to surgical complications later if it becomes necessary to remove the bladder later. It is somewhat controversial and is often considered experimental.

    As you have probably read, there are three major types of urinary diversions if your bladder is removed. A really good summary of these can be found
    https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

    Neobladders have not been as successful with women as they are with men, and a good percentage of women who have had them are either incontinent or super-continent and have to cath. This is also the most complex surgery. Our president, Cynthia, has an Indiana pouch and is very happy with it. I am sure that she will probably post here tomorrow. The simplest, of course, is the ileal conduit where urine is collected in a bag outside the body.

    Whichever diversion people have, they seem to adapt and live comfortably with it. You want to be sure that whichever you might chose you have a surgeon who is familiar with that diversion and who is experienced in the surgery required.

    If you feel that you need a second opinion, Stanford University Medical center is also a great place for bladder cancer treatment.

    Please feel free to ask any questions you might have, and someone will be sure to respond! Remember that we are not doctors, but rather people who have been facing bladder cancer head-on!

    Best of luck to you

    Sara Anne


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

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