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Mom has stage 2 bladder cancer getting radical cystectomy
Hello everyone!
First I would like to commend all of you for your bravery snd sharing your inspiring stories! I’m writing on behalf of my mom. She was undiagnosed for months after countless times of reporting blood to her uro/gyn after pecerary was placed for bladder prolapse. It wasnt until she bled like she had her period that the nurse practitioner sent put for a ct scan. She is at stage 2 and needs a radical cystectomy to bladder removed. Doc says she will be likely cured if she does this as its only invasian is muscle wall. She is 77 and in good health besides artificial aortic heart valve and some weaker kidney function due to this 83 snd 14 percent. Doc said this is the only option. I was hoping to preserve bladder. Tunor is high grade. Is this the right treatment? Will she be able to do all the normal things she did before? Take long walks? Thanks in advance and again, I’ve received such comfort reading all of your inspiration stories! -
9 Replies
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Thank you Alan,
I just wish there was a way around not losing her bladder. I know one tumor was muscle invasive snd one was not. I keep thinking I should have encouraged her to get a second opinion in June and she woukdnt have had go go through this. Good questions Alan. I really appreciate it. -
Anne, you are asking all the right questions for your Mom. Pat yourself on the back, it affects you too! I am adding a file that has lots of good questions (just pick and choose the ones that fit you) that I copied from someone else as I have not had to have a cystectomy. I have had a triple bypass along with a few hernia and carotid artery surgeries. Almost all abdominal/torso surgery recoveries are marathons NOT sprints. Meaning listen closely and do EXACTLY what your doc’s tell you to do. Listen to your body and most of the time it is NOT push the envelope but more like work until a little fatigue. Usually lifting no more than a gallon of milk if that much, which 8 pounds. As Cynthia said, walking is always good stairs are probably a few weeks wait..
Thank you so much cynthia! I’m so happy this forum exists! I have a feeling I will have more questions again soon! Thanks again!!
Thank you so much cynthia. I’m still in disbelief that this is happening. I know it’s different for everyone, but how long does it take for stoma to go down in swelling?
Ask her doctor when she can do stairs post op. My husband and I found that getting a notebook and putting our questions in it and the doctors answers. We went to all my appointments together and he would take notes. If you or someone can do that it helps a lot. It has been a long time but I remember I could not do steps for some weeks, lift over a certain amount or drive. This surgery will take the starch out of you. When I came home I needed help, housekeeping, nourishing easily digestible food, getting her up and going, and help getting out of the shower. But as time went on I got stronger and within four months I was dancing at a friends wedding. How fast someone heals is as individual as your finger prints and influenced by many things. But again ask your Moms doctor what is average. You all can get through this. I always looked at it as a hard journey to the other side of wellness. A step at a time, first surgery then recovery, then regular checkups. Don’t worry about knowing every thing at once just what you need to know for the next step you all will learn as you go. And we are here if you need us.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thank you thank you Cynthia! My mom is asking about stairs. I guess stairs shouldn’t be a problem?
Your Mom is having her surgery at one of the top places for blc in the country. As for the showering they will tell you when she can start showering again as well as restrictions if any. I’m a bath girl but had to shower until they gave me the go ahead. Walking is the best thing in the world of you after this surgery so encourage her to walk as much as she can and to go a little further every day. They will let you know when they want her to start walking I got back from recovery and was up and took a few steps at 3am because the mattress was trying to murder my back. By the way that mattress was a big part of my recovery as I would do anything to get out of that bed. If you have questions ask away ass many of us have been there done that. For most of us life returns to normal following surgery it may take time but people are surprisingly adaptive.
We are here if you need us.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thank you so much for your reassurance Cynthia! I have to say you look amazing and are so inspiring. I’m so happy I found this group. She is having it done at sloan Kettering in new York. I’m just thinking snd I know she is secretly thinking it too thst if we would have caught in stage 1, maybe this wouldnt hsve to happen. Do you think high grade tumors start out so high grade? Also, I’m wondering how she will shower. I guess i have to look it up. I’m just hoping her life wont change too much snd that she can still take her long walks.
Anne, sorry you have to be here. I was diagnosed with stage 2 at 48 I am now 62. My bladder was removed, I have a diversion and it has changed my life very little. Once bladder cancer has become invasive bladder removal has shown to offer the highest survival rate possible. The trouble with bladder cancer is that it has a high rate of recurrence and by being invasive your Mom’s cancer has already shown itself to be aggressive. There is a bladder saving protocol but it is a very intense treatment protocol and if it fails you have to have what they referr to as a salvage radical cystectomy. Also the protocol should be done at a cancer center of excellence that has a history of using the protocol, I was in treatment from Oct. to May. I went through it myself and after 20 trips to chemotherapy and 40 to radiation the cancer came back within months. The radiation can do a lot of damage to surrounding tissue and complicate surgery. Having been weakened by the intense chemotherapy and radiation it greatly prolonged my recovery. Looking back I realize that I was more intent on saving my bladder than saving my life.
What ever your Mom does know we are here for both of you.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietySign In to reply.
