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  • So treatment day is Wed for me. Wed night was pretty rough with straight up burning in my urethra! Thursday I was exhausted and bladder was sore. Friday I was pretty normal but today (Sat), I am exhausted, very mild fever and just don't feel good. I explained to my nurse this week that last week was tolerable with some burning and discomfort Wed, mild fatigue sick feel on Thur but Fri, Sat were good for me but Sunday, I felt like I had flu. Achy and drained. She said it is perfectly normal for it to come and go like that and it will get tougher as it goes. Well gosh, this week has kicked my tail and it has me totally on edge for 3rd treatment this coming Wed.. I am a hairstylist and have moved clients to Mon, Tues and hoping this will pass by Monday. Has anyone experienced a reaction like this?

    What advice would you give to someone who has just been diagnosed with bladder cancer?

    After a year I finally got a diagnosis, albeit not one I really wanted to hear. Bladder cancer. The first urologist I had really gave me the run around with tests and procedures, and after 8 months never found the problem. Long story there. I got a second opinion and after he saw the medications weren't working, did a urine cytology test that came back positive. He then did a Cystoscopy with biopsy that confirmed bladder cancer. It appears to be confined to the inner wall of the bladder but he said it was everywhere on the inner bladder wall. I'm now doing Mitomyacin bladder infusions and have completed 3 of 6 treatments and will be re-evaluated a month after treatment #6. I'm a 58 year old man that has work in the trucking-gas and oil industry all my life. I guess it caught up to me.

    Following removal of an adenocarcinoma from my bladder in October '18, it has been recommended that I have my bladder removed. This type of tumor is so rare that I am unable to come to a decision. I had a paper review carried out by a Harvard teaching hospital in Boston who agree with my consultants recommendations on the basis of the rarity of this type of tumor in the bladder. I am trying various alternative treatments including vegan diet, juicing, CBD oil, sound therapy. In addition I rec'd a blessing in November, during which I was told it was gone. At my request I had a further biopsy on 25 January and today learn that there is no evidence of any malignancy in my bladder. Have appt next week with Consultant and want to be prepared in my fight to keep my bladder. Surely if there is no malignancy in the bladder then the sensible approach would be to keep bladder and have regular check ups? The Pet Scan showed no other growths but did show 2 of my pelvic lymph nodes light up near the site of tumor. I am going to request that they remove just those lymph nodes as against removing all my lymph nodes as suggested. Does anyone have an opinion?

    I had my 12th treatment of BCG last October. I immediately had severe pain and trouble with frequent urination. Six months later and a two week dose of Isoniazid I still have pain although is is much less severe. According to my Urologist I contracted BCG cystitis. I am told that only about 8% of patients that undergo BCG treatments develop this. Has anyone else gone through this and can you give me a bit of insight as to how long I may have to endure this. Thanks...

    A bladder cancer diagnosis can feel like a whirlwind of information, including the doctor's advice for treatment. It can be difficult to know what to expect from the treatment you may receive. This is a space to share about your treatment experiences, and read about others.

    Starting BCG for stage 1 and want details...what happens when I'm home? How will I feel, physically? Dr. Said Id have UTI symptoms, but have others experienced more than that? I've read about the precautions (bleaching the toilet) but want to hear from someone whose gone through it.

    For some, starting conversations regarding end of life care can be very difficult. When is the right time to start that conversation? Who do we start the conversation with? What are the next steps after a conversation? Hearing about others experience with these talks can be super helpful. Share your thoughts or ask a question or two below!

    Welcome to the community! Introduce yourself below to begin connecting with our community members!

    I just found this site last week and read all the stories and wish to thank all of you. Makes me realize I am not the only one with this curse. I posted my story today. Jerry

    Looking for a urologist at UCSF for a friend newly diagnosed. Any recommendations?

    In response to a poll, most bladder cancer community members said that bladder cancer has influenced the way they view sex and intimacy. How has bladder cancer impacted your sex life?

    It's been a year since being diagnosed with t1 high grade non-invasive bladder cancer. So I decided to look back at some of the blogs I was putting out to friends and family at the beginning of my journey. Below is my second blog put out and it reads: Since learning of my cancer in April my living conditions have changed dramatically. Prior to the cancer I was very out going, confident and able to mix well with others. I am now anxious every time I leave the house and feel more comfortable staying in doors. I'm unable to sustain the physical activities I once use to participate in and living with the pain is so depressing. The mental discomfort prior to each toilet use is draining and the actual effort of passing urine is excruciating and relentless. I feel trapped at the moment and long for the day when I can get my life back on track. What totally amazes me most about this blog is that I honestly couldn't remember now a year down the road that I was actually feeling like that. Don't get me wrong it's been a very tough year with a lot of painful moments and frustrating times, but for some reason my main memories have been about the positive things that have happened, such as responding well to the BCG treatment I've been receiving. The techniques I've learnt for coping with my anxiety when having a cystoscopy and the moment I was told my recurrence was low grade superficial. So I wondered if others had similar experiences to me when it came to your overall thoughts about your bladder cancer journey?

    Do you appreciate things more after having bladder cancer? What do you appreciate most in your life?

    Do you have any tips for diet and exercise? This is a place to share about what has helped you, or any challenges you may face.

    Do you think you got all the information you needed when you were first diagnosed with bladder cancer? What information would have been helpful to have?

    Whether you have been diagnosed with bladder cancer recently, long ago, are in treatment, out of treatment, or a caregiver, self-care can play an important role in your well-being. What self-care activities have helped you the most? Do you have any self-care ideas you would like to share? Please post in the comments below!

    Having cancer is mentally and physically draining. So when going through treatment the sex & intimacy with your partner can decrease. its of course at times impossible for certain periods after treatment to even consider whether you could have sex. My first 4 months after diagnosis were filled with 2 operations to remove tumours. after the first operation it took me 4 weeks to recover, or so I thought. At that point after the 4 weeks, me and my wife attempted to have sex, which turned out to be very painful for me. This of course can leave your partner feeling fearful of trying or contemplating having any intimacy with you, because they fear leaving you in pain. As a male I found that whilst having treatment and in recovery post any procedure, I became very weary of having any sex or intimacy. For a while I never considered how my wife felt about the lack of intimacy between us and my wife welcomed the conversation when I asked her how she felt. It turned out that although I was suffering, my wife too was emotionally suffering because of the 'intimate' distance my cancer created between us. What I didn't realise being a typical man, is that a kiss and a cuddle can go a long way. The sex will come in time, which it did, and I've been trying my best to be intimate with my wife whenever I'm having treatment. I'm now nine months into my cancer journey and I'm more aware of how I will be feeling during treatments and what my recovery times will be. I'm also now aware of when sex with my wife will be satisfying for both of us. It does take time and getting used too, but the sex & intimacy will get better, so long as you both work at it and try to understand each others needs and fears. Noel, Team Member

    What are your tips to get you through the holidays?
Viewing 19 topics - 1 through 19 (of 19 total)