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Adenocarcinoma - scheduled for partial cystectomy

3 years 1 month ago #49668 by CatherineH
Oh Lorraine... I'm so sorry all these things have been so difficult and stressful. That's the last thing you need while trying to heal your body and your spirit. The good news I read was that all your 3-month cystos have been clear.

I understand your worry about toxins, chemicals, etc. I was the exact same way for almost a year. I stopped using almost all beauty products, lotions, etc. I made myself crazy worrying about pesticides and processed foods. That did make me eat better, but every day when I woke up the word "cancer" was floating in front of me. It was only after finding this forum where I could communicate with others about my fears that it started to get better.

It took another couple of years to let all that constant worry go. I now go days (maybe even a week) without thinking about bc, except I always check for any sign of blood when I go to the bathroom. I guess that's my last residual fear hanging on.

I still try to cut down on my toxic load which I think is a good idea for everyone. I use Dr. Bronner's peppermint soap in the shower, Dr. Bronner's Sal-Suds for all household cleaning, have finally stopped coloring my hair but only because I got tired of all the upkeep. I am finally comfortable with every day life again, but it was a long road to get here.

I guess I'm just saying that your worry will subside with time if you allow yourself that luxury. Finding a way to let go of being angry about it will help tremendously. I finally went to see a counselor to help me cope with the bc on top of my own already existing PTSD and anxiety issues.

I hope you will continue to post here, if just to let some of your bottled up feelings out. It will help with your emotional healing so your energy can go into getting back to a full life, even after bc.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: lorrainevalentine

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3 years 1 month ago #49657 by DougG
Lorraine,
Sorry to hear that you have had stress and drama to deal with besides the bladder cancer. Hope things get less stressful. I did remove your email address...not allowed on this site. Sounds like you have made some healthy decisions this year! Way to go!
Anita

Anita
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Caregiver
The following user(s) said Thank You: lorrainevalentine

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3 years 1 month ago - 3 years 1 month ago #49656 by lorrainevalentine
I can't believe more than a year has gone by that I have posted. I shut down. I couldn't deal with everything that was going on in my life at the time of surgery and shortly after. I had some family issues (to say the least). The one's I relied on for 100% support - made my recovery that much more difficult. But back to the actual topic - I have been having check ups every 3 months. Today was another 3 monther since last year. My doctor said I would be doing 3 month check ups for 2 years. :( I'm fine with the precaution, but I am feeling really pissed about having this be a part of my life. I want so much for there to be a cure. I want answers - I want this to not happen to anyone else. I just don't get it. I have had a stressful year. After surgery, things piled on, and we had to move out of our home less than 5 months later. I returned back to work only to deal with "workplace issues" and my stress has been through the roof since last year. I have changed my eating. Went vegan/vegetarian and lost 40 lbs. But the last few months have been a little difficult and I am notorious for stress eating. I am doing my best to eat natural/organic, cut out all toxic household items in the home, use non toxic products for shampoo, deodorant, make up, etc. Every thing I put on my body, I check my "think dirty" app I downloaded to check the toxicity level and carcinogen level. More than a year later, I haven't eased up much on the paranoia I feel. Nobody gets it. Nobody but you kind folks here. That's where I'm at right now. I wish posting here was easier :) LOL I could do a monthly blog if I could. I will do better checking in. But life just took over and handed me the perfect storm last year. I pray for us all and I am thankful for this website. If anyone has any questions for me - or yell at me to check in!!! :) LOL

God bless us all!

Lorraine Valentine, Arizona

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4 years 1 month ago #47387 by CatherineH
Nono... You're very welcome. I hope your appointment tomorrow goes well. Let us know.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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4 years 1 month ago #47385 by nono
Catherine,
Thank so much for the speedy reply. I'm so very frustrated. My surgery was extensive, the team said they removed most of the dome (about the size of a roma tomato and 1/4" thick.) I will follow up with my primary care Dr. tomorrow. I hope to return to work on Jan 1st, I work at Ford where a restroom is not always around the corner :o(

Nono

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4 years 1 month ago #47383 by CatherineH
Hello nono... welcome to the forum. I'm sorry you are having issues resulting from your surgery. It sounds like your bladder was reduced quite a bit in size. Hopefully your bladder will be able to stretch a little bit over time but you may always have this challenge to some degree. Urgency every two hours must be very disruptive to your day, and especially to your sleep. Was your tumor an adenocarcinoma also?

I was very fortunate in that my tumor was discovered fairly early and was only 1.6 cm (about 2/3 inch). That allowed my surgeon to remove a smaller portion of the bladder wall around the tumor site in the middle of the dome between the ureters. I had a pretty quick physical recovery from the surgery. I really can't tell much difference now than before the surgery.

If I had to cite an issue, I did find that it was harder to hold urine back for a few months. I think that was largely due to wearing the catheter for nearly a month post-op and losing muscle tone. I was told to do Kegel exercises and I think that probably helped. At any rate, now almost 5 years later I am pretty much back to normal.

Please post any other questions or other issues you are having. We are always here to listen...

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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