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Bladder Cancer

Bladder Cancer

Posted by FayeMarie on Jan 29, 2017 3:13 pm

My surgeon/oncologist/urologist tells me that bladder cancer is fairly common, but l have yet to talk to another person who has it.  I feel the need to talk to other folks who are living with this type of cancer and how they are dealing with it physically...mentally...and emotionally.  This rollercoaster ride spanning the last 5 years is exhausting me and has me feeling as though l am riding these rails alone.

Re: Bladder Cancer

Posted by itsawonderfullife on Jan 30, 2017 5:14 pm

I don't have bladder cancer but wanted to let you know there are others and others that want to support you. I am glad to hear that you were diagnosed and are undergoing treatment. My Mom was diagnosed when the bladder cancer was too far advanced, despite having the classic symptom for years prior and not being sent for tests. I am a caregiver for my husband who has laryngeal cancer and either a spread to the lung or a separate lung cancer. I hope you find others dealing with the same type of cancer who can help but, in the meantime, just wanted to let you know someone's listening.
 

Re: Bladder Cancer

Posted by Stevenmussell on Jan 31, 2017 8:53 am

Thanks for support itsawonderfullife.

Re: Bladder Cancer

Posted by Lacey_adminCCS on Jan 31, 2017 10:26 am

FayeMarie and StevenMussell,

Have you guys been able to connect? Your both relatively new to the site with bladder cancer.
What treatments have you had?
What challenges are you facing?


Also click here to view a list of other members who have experience with bladder cancer. I hope this helps!

 

Re: Bladder Cancer

Posted by FayeMarie on Jan 31, 2017 11:13 am

Thank you for reaching out to me.  I'm sorry to hear that your mom was diagnosed too late to be helped.  I think that...for me anyway...the toughest part of dealing with this disease is that the recurral rate. 80%.  It simply seems to never go away.  This makes it very difficult...at times...to achieve a feeeling of positivity.  It seems like everytime l just beging to feel physically healed that it is time for my next cystoscopy and now maintenance BCG 

Re: Bladder Cancer

Posted by FayeMarie on Jan 31, 2017 11:19 am

Lacey_adminCCS:
FayeMarie and StevenMussell,

Have you guys been able to connect? Your both relatively new to the site with bladder cancer.
What treatments have you had?
What challenges are you facing?


Also click here to view a list of other members who have experience with bladder cancer. I hope this helps!

 No Lacey  l have not met Steven Mussell  l would certainly be willing to connect with him if he is willing.  How would l go about doing this?  Please let me know.
I found only two others on this site with bladder cancer and there have been no posts made by them since 2013.  Needless to say, l am not hopeful about hearing back from them.  Also...how would l go about trying to set up a support group here in my community?  Can you point me in the right direction?
Faye Marie

 

Re: Bladder Cancer

Posted by Warriorprincess on Feb 1, 2017 6:51 am

Hello, I am Liz aka warrior princess. I too was diagnosed with bladder cancer. It's scary, and in women less common. Feel free to message, I will answer any questions that I can
liz
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer

Posted by FayeMarie on Feb 2, 2017 10:40 am

Hi Liz. How long have you been living with this?  I have been dealing with it for about 5 & 1/2 years now.  I had BCG treatments in early 2013 and again in late 2016 and now l'm about to go through 3 more BCG treatments which are labeled maintenance therapy, to be followed up by anothe cystoscopy in early April.  I'm starting to feel tired of all the intrusions into my bladder and of the almost constant healing time required afterwards...not to mention the fatigue and feeling sick after each BCG treatment.  I try so hard to concentrate on the positive...but...sometimes that is a difficult thing to do.  Am l just feeling sorry for myself, or are others feeling the same as l do, or going through what l am?  What have you experienced in your journey with bladder cancer?

Re: Bladder Cancer

Posted by Warriorprincess on Feb 3, 2017 7:14 am

Hello!
Well first off , you have much more knowledge and experience than I do! I was diagnosed with bladder cancer just over a year ago. I have been through surgery and my first set of bcg treatments. Taking a grateful break until my next scope in May. So far the little demon has been kept at bay
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer

Posted by livingwithbladdercancer on Feb 21, 2017 6:04 pm

I was diagnosed with bladder cancer in Dec. 2014, had a radical cystoprostatectomy and subsequent Chemotherapy. I have since been diagnosed with small lymphatic lymphoma and developed at abdominal aortic aneurysm that is growing. It has been a journey, but .... but .... I am doing great and go to work every day and enjoy life the most as possible. I have maintained an online journal at LivingWithBladderCancer.com talking about the journey and the things I have felt going along the road. There have been times of feeling utter hopelessness, especially when I hear of others I have known have lost their battle, but I always try to look at the positive. It starts every day. I wake up. That is a complete sentence. I wake up. Everything else can be dealt with. It is not all flowers and rainbows, of course, there are bad days, but one expects those and recognizes it and push through it and get centered again. I do believe attitude is one of the strongest medicines.

Re: Bladder Cancer

Posted by Lacey_adminCCS on Feb 23, 2017 11:44 am

livingwithbladdercancer:
I was diagnosed with bladder cancer in Dec. 2014, had a radical cystoprostatectomy and subsequent Chemotherapy. I have since been diagnosed with small lymphatic lymphoma and developed at abdominal aortic aneurysm that is growing. It has been a journey, but .... but .... I am doing great and go to work every day and enjoy life the most as possible. I have maintained an online journal at LivingWithBladderCancer.com talking about the journey and the things I have felt going along the road. There have been times of feeling utter hopelessness, especially when I hear of others I have known have lost their battle, but I always try to look at the positive. It starts every day. I wake up. That is a complete sentence. I wake up. Everything else can be dealt with. It is not all flowers and rainbows, of course, there are bad days, but one expects those and recognizes it and push through it and get centered again. I do believe attitude is one of the strongest medicines.

livingwithbladdercancer‍ -Thank you so much for sharing your journey and positive attitude with us.

"It starts every day. I wake up. That is a complete sentence. I wake up. Everything else can be dealt with."  

Powerful words!

Lacey

Re: Bladder Cancer

Posted by Warriorprincess on Sep 15, 2017 3:38 pm

livingwithbladdercancer‍ , you have such a amazing attitude. I try and most days succeed. There is some pretty awesome wisdom in your journey. And certainly this is what I aspire to do/be. Finally heading back to work, grandchildren are all in school, I no longer need to be my husband's caregiver, he has recovered from his heart surgery . Excited to find something else to think about , it will make it easier . 
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer

Posted by Annamarie444 on Sep 19, 2017 3:53 am

I was diagnosed with bladder cancer in October 2016 it's high grade and extremely aggressive Ive had many surgeries to remove the tumours and also BCG treatments in which the cancer continued to grow I'm at the stage now where nothing more can be done I have been in extreme pain since this whole thing began which they say is unusual. My bladder has to come out and I'm scared This will happen quickly in the next couple of weeks . I would love to talk to someone who also has bladder cancer

Re: Bladder Cancer

Posted by Elsie13 on Sep 21, 2017 5:59 pm

Hello Annamarie444‍ This does sound very scary and it's so awful you have that pain. Perhaps you can connect with Warriorprincess‍ and livingwithbladdercancer‍  .
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Bladder Cancer

Posted by Warriorprincess on Sep 21, 2017 8:01 pm

Hello Annamarie444 i am Liz , and I also have bladder cancer, I am so sorry that you have been struggling. It's such a scarry place to be. Please if you need to just talk, i am here. I will send you a friend request , and if you prefer we can chat privately. Big Hug Liz
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer

Posted by ssgirl on Sep 22, 2017 1:11 am

Annamarie444‍ My husband has stage 4 bladder cancer, unfortunately it was already metastasized by the time he was diagnosed.  He did not have the option of removal because of this.  A friend of ours also has bladder cancer and had his bladder removed last year. The surgeon made a neo bladder.  He seems to be doing very well with it.  Perhaps there is someone on this group who has had this done.  This must be very scary for you, but perhaps talking to someone who has gone through it would help.  Is there a support group at the cancer clinic where you live?  Sending good thoughts your way.

Re: Bladder Cancer

Posted by Warriorprincess on Nov 29, 2017 4:16 pm

It's been a while since we all chatted. How's everyone holding up ?  Do any of you still feel like there is something there ? At times I still feel pain from my surgery. I really think it's all in my head , but I thought i would ask. It's been over a year since my surgery to remove the tumors . What about you , do you still feel this?
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer

Posted by Bubbiewarrior on Nov 30, 2017 9:29 am

Hi It's Pam speaking it has been awhile. I have completed October 19, 2017 14 rounds of chemo 33 radiation treatments for muscle invasive bladder cancer. Still trying for bladder preservation I really don't want them to take my bladder. I called bladder cancer yesterday to see if they can find me anyone who has been through  the same, no luck. I will be going Dec 13 to Princess Margaret for a cystoscope and hopefully hear goods news and maybe my tumour is dead. On dec 20th for a ct scan. Trying to keep positive and find my new normal. Each day is a gift and one day at a time. Big hugs to all xo 

Re: Bladder Cancer

Posted by Warriorprincess on Nov 30, 2017 4:04 pm

Bubbiewarrior‍ , Pam you have been through a lot this past while , so glad you have finished the treatments! Are you feeling ok? Keep up the positive attitude , you got this lady!
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer

Posted by Bubbiewarrior on Nov 30, 2017 8:36 pm

Thanks so much. Starting to feel stronger everyday and trying to find my new normal

Re: Bladder Cancer

Posted by SunnysMom on Dec 1, 2017 8:52 am

HI from SunnysMom.
I'm new to the forum.  You've been thru the rigors.  Have a couple of friends who have been thru your difficulties too, and I've worked hands on in home care for over 20 years .  Be Very careful of infection, and any symptoms there of, head to your DR asap.  Due to your treatments, there might be some de-sensitized areas in you bladder and abdomen. Hopefully your docs have already made you aware-some don't.
 Good Luck to you and wishing you the best.
 

Re: Bladder Cancer

Posted by SunnysMom on Dec 1, 2017 10:32 am

Lacey,
I just read your Feb 23rd post:  loosely--- This morning,  I woke up, a full sentence. Everything else can be dealt with.  So true.  Your words give me new inspiration. 
I've been struggling-mostly mentally with the fear of the unknown-and yes, there is no point in that-stay positve.  Cancer is a life altering experience.  Exactly, one year ago I had a mastectomy followed by the whole armpit axillary nodes removal.  Diagnosed with esrogen +, stage 3,  Invasive Lobular mammary carcinoma, 4 sentinel nodes malignant and most gratefully, 0/26 axillary nodes involved. Evidence-apparently- as far back as 9 yrs ago on mammograms  of great abnormalities, but every report I, and my family DRS received-all was reviewed as normal !!! This discovery, we were informed of after 3 biopsies I insisted upon after an 11cm tumour erupted to the upper surface of my breast one evening.  It was my surgical oncologist from WCH in Toronto and my local KW general surgeon we were linked up with who disclosed this info.  Very shocking to say the least.  I declined chemo, as lobular breast  cancer is proving resistant to the current 4 chemo drug therapies, no radiation, (which is a whole other story), but taking the AI, Exemestane, and have gone pretty much organic with my diet.  I  have retired, now 65 yrs old, from 26 yrs in providing home care services,  and exercise a fair bit, walking quickly a few kms with our sheltie daily, dance on my own to loud tunes of the 70's, 80's and 90's, (my own personal music therapy),  go bowling which I totally suck at, but it's fun, play cards, cook, read and rest .  Other than increasing tinnitus, which seems to prevail with most Aromatase inhibitors, and insomnia, I feel amazingly well, and have more energy now than in the last several years.  Still working on the scariness aspect and hopeful attitude, surrounding such a diagnosis.  However, que sera, sera.  None of us know how our futures will play out.
My Mother died of the same form of breast cancer, 27 yrs ago, mets to duodenum and liver/belly ascites, did 2 rounds of chemo, and sadly, only lasted 10 months after her mastectomy.  My elder sister, diagnosed at 62, chose no chemo-our brother in law- a hematology oncologist did not recommend it, nor did her own oncologist, but did half most of the recommended radiation treatments, and AI treatment for 10 yrs (horrible tamoxifen and a better experience with arimidex) and is alive and well, no recurence any where, still enjoying life at 79.   All three of us diagnosed with Lobular breast CA, but strangely no genetic mutation factors found      (8 genes tested-all negative).     
My greatest wish is that people not put so much trust, so blindly,  in their doctors in believing that chemo will cure them.  Chemotherapy is the most toxic, hazardous, immune-system (one's LIFE force) disabling treatment, and is sometimes fatal.  It does not work for everyone, creates some permanent, and difficult nt disabilities, with negative organ effects also, and is a VERY difficult  personal decision to make.  My husband developed one of the most horrendous cases of stress psoriasis, just watching me torment over this decision(and HE wasn't the cancer patient).  I could not imagine how he would have coped while I went thru chemo.  We have no immediated family, very little personal support, many "perceived" friends have "disappeared" after revealing my diagnosis-most hurtful-and consistent home care is negligible, with PSW's and nursing systems just not as supportive in the rural areas  of KW, as years ago. My local oncologist would only answer my listed questions, and openly told us, she didn't want to "scare" me out of doing chemo, thus choosing not to disclose too much info.  When I revealed I'd been in the nursing profession, she all but clammed up, RED FLAGS with her and a similar experience also with the radiation oncologist.  Neither one of them made me feel I could trust anything they told me.  And we need to trust them, don't we.

It is, also,  a little known fact, cancer hospitals receive HUGE funding dollars from our goverment, drug companies and private philanthropic organizations in exchange for a patient's consent signature.  It really makes one think, why chemo is so encouraged, and the motives behind it,  when research indicates there's a less than 3% positive benefit, over all.  But , there again, it is a personal choice.  My hat's off to ALL those strong and brave individuals who have endured IV chemo, radiation and have lived, or died,  from the process.  I stand in awe of your incredibly, courageous efforts.

 

Re: Bladder Cancer

Posted by ACH2015 on Dec 1, 2017 11:49 am

SunnysMom‍ 

​You are right that we all have to decide what treatments we choose to fight cancer.

​I also agree that individuals need to be as well informed by their doctors about "realistic expectations" as possible regarding the reasons for treatments, any possible choices and the expected outcome of each.

​I should state my cancer was not Bladder Cancer.

​I had chemo - surgery and radiation to treat my cancer. The chemo was recommended for the purpose of shrinking and killing the tumor(s) to make the surgery less invasive.

​Surgery was completed to remove the cancer, and radiation treatments were used to sterilize the surgical area and hopefully kill off any remaining / surviving cancer cells.

None of these treatments were specifically described to me as a "cure" - they were described as treatments - in hopes of ridding me of the cancer they could find. 

​I am glad to know that many thousands of people have not had a recurrence or cancer after initial treatments and interventions and consider themselves cured.

​I have recently been diagnosed with what has been described as a "recurrence" of the same cancer I was previously treated for.

​I am disappointed to be going through this again, but I believe that having agreed to the previous treatments was in my best interest and were the appropriate medically approved options available to me in my specific case.

​So much research is ongoing with new strategies and outside of the box thinking to treat cancer. Unfortunately many of us will have to wait for the appropriate clinical trials and stagings to benefit from newer and possibly better therapies to deal with our cancers.

​Until then, I accept that doctor's can only treat you for the cancer they can find - and use only the medically approved therapies they have at their disposal.

​A lot of us would not be here today without the research that has gone on, and thankfully many more will survive tomorrow because of the research ongoing today.

ACH2015



 

Re: Bladder Cancer

Posted by SunnysMom on Dec 1, 2017 2:34 pm

Well said, and I appreciate the reply.  The best of all possible outcomes I wish for you.

Re: Bladder Cancer

Posted by Elsie13 on Dec 2, 2017 4:30 pm

SunnysMom‍ Sorry to hear about your diagnosis and glad you are feeling well, now. There are lots of people here in cancerconnection who have had chemo, and some are waiting to start chemo, so can you please refer us to the study that shows the less than 3% positive benefit of chemo. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!