Radical Cystectomy Scheduled for February 2023

By AnnieO

1 min read

I was diagnosed with NMIBC in 2021 and have had 4 turbts because it keeps recurring. Had BCG and it didn't work, and the last pathology report indicated that it has now progressed to high grade muscle invasive.

So many questions...

So...I had a CT which showed no metastasis but am due to meet with an oncologist about chemotherapy before Radical Cystectomy (RC). And that scares the patooties out of me! I've heard so many horror stories about chemo and its side effects!

So many questions about the treatments and the surgery! Most of them center on the logistics of survival after treatment and surgery. I'm a fairly healthy and active 73-year-old woman - but I live alone with no close relatives nearby. I have pets that will need care and then I will need to care for myself. I'm just trying to figure out how long the recovery period is (and I'm aware that everyone is different). How long before I can bend enough to feed a cat or clean a litter box? How about driving? I heal fast and I'm tough, but it would help if I could plan and arrange help if needed!

My doctors either tell me that I will be back to normal activities in no time or scare me silly telling me about all sorts of potential side effects. I was hoping that someone who has gone through this might help by sharing their experience!
Thanks in advance!

This is my story.

Share Your Bladder Cancer Story Today

Help others feel a little less alone

Share Your Story

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Linda Urbanski Member
@AnnieO - Having treatments and a major surgery would scare anyone but I will tell you from my personal experience that you can get through it. I was 63 but the only treatments I had prior were 2 Turbts with mitomycin following those. I was in good shape and pretty active also. I also live alone with grown kids not too far away but no pets. I personally believe that your general health, the expertise of the surgeon and a good attitude are a great combination for a successful surgery. My surgery was on a Tuesday, I went home Sunday morning and returned to a full time job 4 weeks post surgery. I would not recommend that but it worked for me and certainly took my mind off things. My recovery was good and I was back to pretty much 100% within 2 months. Walking and hydrating and a positive attitude are valuable and important. I would be happy to discuss any questions you have and also have a tip sheet that I email out if interested. Feel free to message me if you would find it of value. Linda Urbanski (moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
Laura MacKenzie Member
<inline-mention username="AnnieO" user-id="4191226"/> Hi. I can’t help with the chemo as I didn’t have it but can help with RC as I had one 5 years ago come 1 Nov. Please ask any questions you may. I can tell you the recovery takes time but you can love a good life afterwards. Wishing you well. As an introduction this may help <a href='https://bladdercancer.net/treatment/bladder-removal-cystectomy' target='_blank'>https://bladdercancer.net/treatment/bladder-removal-cystectomy</a> Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
1. Laura MacKenzie Member
 <inline-mention username="AnnieO" user-id="4191226"/> hi. No need to apology. We are here to support when needed but equally we understand people have lots going on. Appointments, things to consider and decisions to make. I am glad to hear you have made good progress and been able to discuss your options with the oncologists to allow you to make an informed decision. Even more importantly the right decision for you. I wish you all the best for the surgery. We are here at any point to answer any questions you may have from our experiences. It will take time to recover from the surgery and I will be honest it will seem tough initially but most importantly, is to know you can recover and get back to a very normal life. Wishing you all the best and I will keep you in my thoughts. Look forward to hearing from you when you feel up to it. Sending positive vibes from Scotland your way. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
2. Linda Urbanski Member
 @AnnieO - I am pleased to hear that you have made a decision and will be moving forward. As difficult as it can be to make these decisions, it is much easier once you have done that and have a clear path moving forward. Please keep us updated and know that we are here always to provide support and answer questions that we can from personal experiences. My best to you. Linda Urbanski (moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
gnick540 Member
I'm a 72 YO male, so my reaction to surgery and recovery might be different. As I noted in my own story elsewhere on this website, my pain level was very low - even before I left the hospital. Having a cath for three weeks was bothersome but I was able to tend to my cat with few problems. Of course I couldn't carry a bucket of litter, so occasional help like that will be required. Feeding and watering was fine too. Good luck. 
1. AnnieO Member
 <inline-mention username="gnick540" user-id="4229275"/> thanks for sharing your experience with this... I also have a pretty low pain level most of the time, so I'm not too worried about that. It's funny how little things like worrying about whether the cats will be impacted by my condition can rise to the top of the list! Glad that you seem to have had little trouble with recovery - I've got my fingers crossed! It helps a lot to hear from others who have gone through this!
2. Laura MacKenzie Member
 <inline-mention username="AnnieO" user-id="4191226"/> now you have decided to move forward with surgery, you may find our featured collection useful to read. <a href='https://bladdercancer.net/living-with-a-urinary-diversion' target='_blank'>https://bladdercancer.net/living-with-a-urinary-diversion</a> take care. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
gnick540 Member
I want to add a comment about doing chemo. My apologies for not addressing all your questions in my first reply -- I hate when people do that to me! Because I had zero symptoms of cancer during the 8 months following diagnosis, I was understandably reluctant to submit to RC surgery. My surgeon referred me to a chemo Dr who offered Keytruda, but with only 30% success rate and a very real chance of serious organ damage, I quickly eliminated that option!! I did endure a three month treatment of low dose chemo at a private cancer clinic (which failed to stop the growth of tumors), but the negative effect on my overall health was not worth continuing. For me, chemo is not an option I would choose ever again.
1. AnnieO Member
 <inline-mention username="gnick540" user-id="4229275"/> I had a similar reaction to being confronted with the potential for nasty and potentially permanent damage from doing chemo before the RC surgery. Although my bc seems to have progressed to muscle invasive, it still wasn't causing any real symptoms, and there's been no evidence on any scans, etc. that it's spread anywhere. When I asked the oncologist about the long-term advantages of doing chemo and then surgery, vs just going ahead and doing the surgery, the answer suggested that doing the chemo might offer me a 5% greater chance of no recurrence. Well - considering quality of life issues, that just wasn't a big enough difference. So I have opted to forego the chemo prior to surgery. Hoping I haven't made a big mistake - I'm sure its the right choice for some people, but right now, not for me. I'm now going to focus on making it through the surgery and recovery, and getting used to my new body configuration, and then I will get back to living happily ever after (however long that may be)! Fingers crossed! And a fairly big smiley face... 
2. Laura MacKenzie Member
 <inline-mention username="AnnieO" user-id="4191226"/> you have a fantastic attitude and outlook on life. I know from experience that is as much a key ingredient in your road through surgery and recovery as anything. It will serve you well. Walk forward positively knowing you have made the right next steps for you. Have a good day ahead. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
gnick540 Member
I completely agree with your plan. Knocking down your body's immune system with chemo before surgery sounds like the opposite of what you should do. I didn't see whether you've already decided to go neo or ostomy bag. Are you still debating? 
1. Laura MacKenzie Member
 <inline-mention username="AnnieO" user-id="4191226"/> I have two bags as a result of my surgery (rare case and I knew ahead of surgery) I can confirm you can live a very good life. They don’t stop me doing anything and absolutely beyond the rock on a hill walk would be no different to anyone else. In my case, the bag was only option available to me. I do like the fact I can sleep through the night for 7 hours without getting up. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>
2. Linda Urbanski Member
 @AnnieO - Glad that you made a choice and have such a great attitude. It is not an easy choice but important that we make it based on our needs and not others. I have a tip sheet that I keep updated and would be happy to email it to you. If you are interested, please message me. Keep us updated on how you are doing. My best always. Linda Urbanski (moderator, <a href='http://Bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
gnick540 Member
I had read about neo but was afraid to ask my surgeon -- UNTIL HE SUGGESTED IT. The only downside he said was "an hour longer surgery and an extra day in recovery". I immediately accepted the neo option and have been 100% happy that I did. I understand that some people will not have the same outcome, but resuming normal bathroom procedures has been the ideal solution for me. I could have adapted to an external bag if there were no option, but I certainly wouldn't choose it now. I recommend you have another discussion with your surgeon. 
1. Laura MacKenzie Member
 <inline-mention username="gnick540" user-id="4229275"/> it is definitely important to review all available options available to us and make an informed decision. Take care. Laura, Moderator, <a href='http://BladderCancer.net' target='_blank'>BladderCancer.net</a>

Community Poll

Have you taken our In America survey yet?