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Adenocarcinoma – scheduled for partial cystectomy
I’m a 40 year old female (non-smoker) – I was diagnosed with bladder cancer in May, had the surgery via urethra (sorry not good with medical terms) where they removed it…found it in the dome of the bladder. Biopsy showed it was “adenocarcinoma”. Now I’m scheduled for this partial cystectomy next Thursday. I’m feeling super anxious and scared about what to expect. Just wondering if anyone has this thing? (adenocarcinoma) and if anyone can share their experience regarding hospital stay, recovery, what to expect?? I was fortunate this didn’t spread anywhere (lungs, etc.) but still don’t know what the heck to expect….being a female – the inconvenience of menstruation after surgery with a catheter!! Just super anxious. Thanks for listening.
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22 Replies
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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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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
Forum Moderator
Caregiver
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
Nono… You’re very welcome. I hope your appointment tomorrow goes well. Let us know.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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
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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Catherine,
at 53 I was diagnosed with muscle invasive bc in June 2014, I had a partial removal on Sept 26th. My Dr. removed most of the dome, my margins were clean and 18 lymph nods removed. Healing is going well but I’m having issues holding my urine. Currently taking 10 mg Veslcsre once a day. I go every 2 hours, if I cant get to the restroom I have an accident. The Dr said it takes time. I know I have to get used to a new normal. Did you experience any issues.
Hello Lorraine… I hope this finds you improving each day and feeling much better all around. You hopefully have been freed from the catheter by now and are able to get around easily and easing back into some of your everyday routine.
So happy the staple removal wasn’t as bad as you thought it might be. Often the dread and anticipation are worse than the actual event.
I look forward to hearing from you again this week.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Just checking in. It’s 3am (Arizona time) and as you can see, not sleeping well these days. I have to say last Wednesday’s uro appt went ok. They removed the 30 staples. Honestly it didn’t hurt. A slight pinch on a few of them and the rest I barely felt. I did take a pain pill prior to the appt just in case because I was so scared it would hurt. At least it calmed me down. So I can shower since then! Which is great. He said my scar healed nicely. This Friday I have appt for that x-Ray thing you mentioned Catherine, but unfortunately it won’t be until the following Tuesday until this catheter is removed. Of course if the x-Ray shows all is well and that the bladder isn’t leaking. So hopefully just one more week of this.
My uro is only about 10-15 min away from my house so the drive is not bad. Everything I was complaining about last week is better this week.
Family & friends have been super supportive so I’m so blessed with that. All of this has happened so quickly since I was first diagnosed in May. it really helps to have this website to go to for added support from people who are or have experienced the same or similar things with BC.
I will check in again next week.
God bless,
Lorraine
Hello Lorraine… I have been thinking about you and hoping things were going as smoothly possible for you. Yikes… you have some challenges that I didn’t have to deal with. I did not have staples but dissolving stitches so I never had to have anything removed, and showering was never a problem once I got home. And, I didn’t have anything inserted into my neck. I only had a little bulb thing with a small tube in my abdomen that acted as a drain but it was removed the morning I left the hospital. In light of all that, you are doing great although I’m sure you don’t feel like it much of the time right now.
When I went back for the first check with the surgeon after my procedure, I still had the catheter and they did a test called a static cystogram to make sure the bladder had healed so there would be no leakage of urine. For that, they put about 100cc of a contrast agent (Isovue 300) into my bladder, then took different views to ensure nothing showed up outside the bladder. It was pretty much painless since they could inject and drain the liquid via the Foley catheter connector. Once that checked out good, the nurse removed the catheter when I got back to the doctor’s office from radiology.
I hope your appointments go well this week with your PCP and uro. I’m sorry you’re having these difficulties… it is not an easy thing to go through and I think the mental recovery is much harder than the physical. Our minds want to pull us over to the dark side sometimes and it can be a hard thing to resist.
Where did you have your surgery? Hopefully you don’t have a long drive on top of everything else. Please continue to update us on your progress and I will keep sending positive thoughts your way.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Just wanted to check in. It’s been 10 days since my surgery. Physically I am doing better every day. Mentally this has truly been a challenge. I absolutely hate this catheter. I got staples for stitches so I can’t shower just sponge bath. I’m bruised on my arm from the A-line and my neck hurts from whatever other needle/thingy they stuck for surgery. I don’t recall the name of that. It was supposed to be if I needed a transfusion??? I did get chemo injected in the bladder and it sat there for a couple of hours. It was that mitomycin stuff. I haven’t left the house. I have a follow up this Tuesday with my PCP and my follow up with my urologist on Wednesday. I don’t know if the staples come out but was told catheter stays in longer. Hopefully I will find out Wednesday when exactly it comes out. I desperately want to not be tied to this thing. The urges to pee is not a good feeling. Sometimes even hurts. My nerves about making sure it all stays clean and I don’t get an infection is driving me crazy. I am trying not to let this small set back get the best of me. It’s super hard.
Now I’m afraid of how it’s going to feel to get the staples removed. And if I will have any problems peeing once the catheter eventually comes out.
Just when I get my mind right I fall back into a scared-unsure-frustrated state of mind. I go back and forth with angry, grateful, pity, blessed….
Needless to say, my first full week home has been difficult. Mostly due to my mind and spirit. Hopefully, week two will get better and I can report positivity next time.
Hi Lorraine! I’m glad to hear your surgery went well. I wish you have a speeding recovery! Also, make sure you are doing deep breathing exercise so you don’t get post op pneumonia.
Lorraine… How wonderful to hear from you so soon!!! I am so happy you have this part behind you and now you can concentrate on your recovery.
I remember the first time the nurses came in to get me up to walk on the evening of my surgery. Ouch! But it got easier each time. Rest as much as you can and hope you are out of there soon.
I look forward to future good reports!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Hi Lorraine,At 11 a.m. in Spain) So pleased your surgery went ok and the pain control is good so far. Will be thinking of you , and wishing you a swift and uneventful recovery xx
Diane
It’s 1:51am (Arizoa time). I was a big ball of nerves prior to surgery but when I woke from surgery I was very confused. Was almost unsure if the procedure took place at all because my pain was next to nothing! Praise be to God! My biggest worry and it was taken care of. I have had the best team of doctors & staff caring for me. I just wanted to tell you that & express my appreciation to you again for communicating with me. :) blessings to you! I will be back later to tell more! :)
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