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    Procedure or Surgery

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    SortingItOut asked a questionBladder Cancer

    Simple cystectomy with urinary diversion surgery

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    Oh No (Cancer is back/Recurred ): Completed BCG treatments and went back to my doctor for the first checkup after the last dose. It broke my heart when he told me that there were more tumors and that they would have to be removed. So, now I'm waiting for the hospital to call and schedule the next round of surgery.

    Once the surgery is complete, then we have to determine what to do next. According to my doctor, if none of the tumors are invasive, then we'll start a more aggressive chemo based treatment, similar to how the BCG was performed - once a week for six weeks put into the bladder.

    If any of the tumors are invasive, then we have to consider removing by bladder and forming a part of my intestine to replace my bladder.

    Very depressed about this news. I had high hopes for the BCG working but my doctor said there are few people that are just prone to getting these tumors and I just happen to be one of the group. Just great.

    • Deidre's Avatar

      I am getting ready to start BCG treatments the first week of Sept. I was diagnosed last year with muscle invasive bladder CA. I had three months of chemo, then had urine cytology, FISH test, CT scan, PET scan and extensive biopsy going into the fat layer. No cancer was found, just some superficial "atypical" cells, so that's why I am having the BCG. I have read that for some people that can't tolerate BCG or are considered BCG failure, they can use Mitomycin/interferon possibly. Has your doctor suggested that? Typically treatment for muscle invasive is chemo first then radical cystectomy or chemo/radiation. But with radiation, damage can be done to adjacent organs, so that is risky. I was advised against having that. It can also make the surgery more difficult later on. I will pray your tumors are not invasive. Wish you only good news! I know it can be discouraging, but hang in there!

      about 5 years ago
    • 1rlanec1's Avatar

      I apologize, it has been a roller coaster ride since my post. I was not aware that you responded. I am so sorry. I would have stayed in touch. I do so now. I don't want to scare you, so if you are sensitive, then don't read the rest. I don't know how to filter my husbands experience.

      Also, Matt's bladder cancer that he has experienced is very rare, it spread to the upper tract and into his kidney's. Matt is among the 3-4-5% that goes thru this. Most bladder cancer patients never receive Matt's current diagnosis.

      Also, please remember that for a very long time, Bladder Cancer was considered an elderly disease. Now, things have changed and Bladder Cancer is receiving the focus that is needed but there is so much research that must be done. Unless you are participating in a clinical trial and the treatments are standard based on staging/diagnosis.

      It is said to say but If Matt and I could go back in the future 6 years, I would have fought tooth and nail to have his bladder removed..

      I do hope you have hope.. Hope is what will carry you thru.

      My husband's diagnosis has changed. I will share my husband complete history with Bladder Cancer since being diagnosed 11/27/2007:
      *17+ TURST
      *One Ureterectomy
      *Right Nephroureterectomy (of course they removed his good kidney which contained a transitional cell carcinoma type tumor). The remaining left kidney was damaged by colonized tumor cells blocking the opening of the ureter prior to being diagnosed.

      Cysto report: 10 new tumors in the bladder and a mass in the left kidney.
      *Recommendation for left Nephroureterectomy and radical cystectomy.
      Which meant: removal of the bladder, prostate, urethra, some of the lymph nodes, and left kidney/ureter. No reconstruction of the bladder since there were no kidneys around to filter the toxins.. Immediately start dialysis after surgery and hope that in two - three years Matt would remain cancer free to be able to become a recipient of a donated kidney.

      Here is where the roller coaster starts. So many things have occurred since 9/27/2013.

      So, the ball started rolling to have the left Nephroureterectomy and radical cystectomy. But I need to back up a bit since I left one thing out..

      The week of Matt's cysto on 9/27/2013 - I noticed that Matt had lost a few pounds and he mentioned that his stomach hurt, and had nausea (not symptoms of non-invasive bladder cancer). I told the Urologist on the day of his cysto, but the Dr. thought it was due to stress - no physical exam of touching the abdomen.

      After the cysto, we received a call saying there was a mass in the left kidney and multiple non invasive tumors in the bladder. The only option was to proceed with the left Nephroureterectomy and radical cystectomy. The Dr. was very confident that the cancer had not spread outside of the bladder. I asked if there was going to be a CT or PET/CT to confirm his assumption and he said yes - that was a good idea to rule out any metastasis but he remained confident that due to Matt only having non-invasive tumors, there was a very, very small chance metastasis had occurred.

      The day before the CT Scan, we met with the Urology surgeon that was scheduled to remove Matt's entire urinary system, I told him as well about Matt's symptoms and his new weight loss of 10+ lbs. The Dr. said that this was a stressful time and it was most likely an ulcer from the stress, and no abdominal exam.

      The CT scan occurred the next day. We received the results from the CT scan on Thursday... A single phone call that said there was a new diagnosis and a new course of action was required.

      Matt's cancer has metastasized to multiple areas outside of his bladder. The plan no longer included removing the kidney or bladder. Traditional Chemo is the best treatment.

      His diagnosis is incurable metastatic bladder cancer. We don't know much more. I hope to know more on Monday.

      The only reason why I am providing so much detail is that I hope to help you.

      Always get a second opinion when it involves a major surgery.

      Question everything

      Ask so many questions that the Dr. is blown away.

      Ask for x-rays/scans/etc.

      Always request a documented pathology and diagnosis from all of your doctors.
      You can always call:[phone number redacted]. I am not sure if this is against the rules.. Cancer has no rules, neither do I..

      almost 5 years ago
    • 1rlanec1's Avatar

      I guess my number can't be provided since it was redacted, I apologize to the website.

      almost 5 years ago
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    Question: BCG Effectiveness

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    SortingItOut asked a questionBladder Cancer

    BCG Effectiveness

    • carm's Avatar

      Hello, I am an oncology nurse and BCG is actually the tuberculosis test. It is used in bladder cancer to stimulate the immune system. It is usually given in direct contact with the tumor for 6 weeks, once a week. It is usually reported from patients as a flu-like side effect. Best of luck to you, Carm RN.

      over 5 years ago
    • GregA0406's Avatar

      I underwent BCG treatment in the Fall of 2011. The treatment was 100% effective and my bladder has been cancer-free since (I have other issues, but not in the bladder). It can be uncomfortable, but no worse than other procedures that you have already endured. Drink "LOTS" of water immediately after the procedure. They will tell you not to urinate for about 2 hours. Do your best to hold it. When you do urinate, you will have a strong "burning" sensation. The more water you are able to drink, and hold, after the procedure, the less intense the burning sensation. Sometimes I didn't quite make it 2 hours (but was pretty close). Remember to drink lots of water and also follow the safety procedures regarding cleansing of the toilet.

      Good Luck!

      over 5 years ago
    • benj622's Avatar

      I am in the process of going through the procedure, I have had the initial six and two threes. So far I have not had really any problems except the one time when I has some drinks, that was a no no and I paid of it.

      So far the exams have been clear for me so maybe it is working!! I do hope so.

      over 5 years ago