I don’t want a Cystecomy!

Hi everyone!

I was told I have bladder cancer after a Cystocopy TURB surgery this Nov 2019.

The biopsies from that showed invasive T2 Cancer into inner muscl.

I am currently doing chemotherapy for the next 12 weeks!

They still will want to remove my bladder!

I'm taking Beta-Glucans as a vitamin. ever heard of these ! 

any advice!

 

David!

 

Comments

  • annie4145
    annie4145 Member Posts: 218 Member
    I don't have your type of

    I don't have your type of cancer, so I don't know all the details of treatment, but evaluate your options carefully.  You can always get a second opinion befoer deciding about surgery.   I also read up alot about treatment options before my treatment.  I looked at the NCCN guidelines and google scholar, and drove my doctor nuts, I'm sure.  But when I did get treated, I was sure that it was what I wanted.  Alot of it depends on your personal life.  Age, whether you have young children etc.  But it sounds just what I read briefly, that this is the standard of care for your treatment?  Is that true?   I was diganosed with Stage III cancer, and the statistics seem a little worse than it is for bladder cancer.  I have children, ages 11 and 13, so it is important that I treated aggressively to make sure that I beat the cancer.  I would encourage you to do everything that is necessary to get the best possible results whatever that is. Farreah Faccett might have lived longer had she received surgery but she didn't want to.  Just be knowledgeable about your different options.  Listen to the doctors, but make sure that you understand what they are telling you, and don't do something if you are not comfortable with it until you get enough information to make you comfortable.   Is there a good hospital near you?  

  • Lakeside
    Lakeside Member Posts: 3
    edited December 2019 #3
    cysectomy

    Well David, as they say, been there, done that, got that T-shirt.

    Exactly 2 years ago this last November, I too was diagnosed with bladder cancer,  but more advanced than yours, T3a. I went through 3 months of chemo (2 types) then on March 30, 2018 I had a radical cysectomy, via DaVinci robotic surgery. I was in the hospital for just 4 nights. I choose the ileal conduit with stoma. So, I wear a urostomy bag. I now have had 3 CT scans, (every 6 months) post surgery and I remain cancer free. I will have my 4th CT in another 6 months and if still cancer free, will have  1 CT scan per year for the next 3 years.

    You are fortunate, as I was, to still have your cancer contained inside your bladder. Should it escape and spread to surrounding tissue/organs, you will be in trouble. This is why they recommend chemo pre-surgery. They want the cancer as dead as possible before bladder removal. Yes, I understand completely your hesitation of having your bladder removed. However, you must consider the risk of not having it removed. It is VERY difficult to know if it has escaped or not until it has. The risk is very high.

    I returned to work 4 weeks after my surgery and have been just fine ever since. Quality of life is fine, as now it all just seems like a bad dream. Getting used to wearing a urostomy bag has of course taken some time to get used to but no big deal. I will tell you that, should you choose the ileal conduit with stoma, there is a 70% chance or so that you will develope a parastomal hernia as I have. The Doctors DID NOT MENTION THIS COULD HAPPEN. Not once was this mentioned, which I remain just a little upset about. With a 70% chance of happening, they damn sure should have told me about the possibility!  Since mine was noticed early via CT scan, I am confident I will not require further surgery. I simply wear a hernia belt when very active. There is no pain at all. Please take a good look at all options to replace your bladder carefully. There are pro's and con's to all options.

    Best of luck to you David. It will all turn out just fine.

     

    Best Regards,

    Lakeside

  • mikamouse
    mikamouse Member Posts: 4 Member
    edited February 2021 #4
    New Here...

    Hello, I'm Janet and I just had my bladder removed Dec 15th. As well as fat glands, uterus and lymph nodes. I was diagnosed 

    July 28th with stage 2 invasive cancer.,For me everything moved really quickly I trusted my doctors because I have been with them for many many years so I within one week I had my CAT scan my ultrasound I had a scope and a scope biopsy and the following week I started chemotherapy so August September October November I did for month of two Kemos yeah I did I am Gemzar And I can't pronounce the other one. This whole situation has been a bad dream I have lost 45 pounds I can't eat because I still have a fax from the chemo I was told that they were going to rebuild my bladder so I would not need a bag but because of some internal stuff that they discovered I am I had to have a bag. The chemo has caused some kidney issues for me now which my cake creatine was trying to get back to normal I've been dehydrated and I have to go for fluids to three times a week and I will for the next three months my surgery I think I said December 15 I had acquired a infection so for New Year's I was back in the hospital I have. I don't mind having the bag it's not that hard it's easy to hide it's just a matter of finding the right hardware. Which two I have already found it so that's not too bad I think the being worn out from my kidneys is probably worse but this whole thing happened so quick AN like everybody says it's like a bad nightmare and I still haven't even excepted it I am I've had phantom pain which is like if someone has a leg removed and they could still feel it afterwards it was temporary. Lasted about a week. I will I am I'd rather have a bag then have cancer they mine was all contained within my bladder and but they did find a little bit in my fat cells starting to grow so they they had pulled out all of those they pulled out my lymph nodes they pulled out my uterus so am I don't have anything in there anymore. I also had contracted COVID-19 well in the hospital I am a some symptomatic so I didn't have any symptoms I think God I had enough going on but as of this week I'm starting to feel really good I drove for the first time I got a full approval from my doctors to be able to do things it's taking me a little longer because of my kidneys him I think most people probably may not that's just a side effect unfortunately and it did affect my kidneys would I do it again absolutely I'd rather be here than not be here and I am so grateful that we found this at stage two and I am hoping you know I go for my arm my six month arm CAT scans and I I hope it remains this way I really do I'm I'm nervous about that I'm 59 and my daughter had cancer she had melanoma eight months pregnant when she was 25 and she's now and 37 so I'm hoping that that follows suit.

  • 61psych
    61psych Member Posts: 5
    edited April 2021 #5
    Lakeside said:

    cysectomy

    Well David, as they say, been there, done that, got that T-shirt.

    Exactly 2 years ago this last November, I too was diagnosed with bladder cancer,  but more advanced than yours, T3a. I went through 3 months of chemo (2 types) then on March 30, 2018 I had a radical cysectomy, via DaVinci robotic surgery. I was in the hospital for just 4 nights. I choose the ileal conduit with stoma. So, I wear a urostomy bag. I now have had 3 CT scans, (every 6 months) post surgery and I remain cancer free. I will have my 4th CT in another 6 months and if still cancer free, will have  1 CT scan per year for the next 3 years.

    You are fortunate, as I was, to still have your cancer contained inside your bladder. Should it escape and spread to surrounding tissue/organs, you will be in trouble. This is why they recommend chemo pre-surgery. They want the cancer as dead as possible before bladder removal. Yes, I understand completely your hesitation of having your bladder removed. However, you must consider the risk of not having it removed. It is VERY difficult to know if it has escaped or not until it has. The risk is very high.

    I returned to work 4 weeks after my surgery and have been just fine ever since. Quality of life is fine, as now it all just seems like a bad dream. Getting used to wearing a urostomy bag has of course taken some time to get used to but no big deal. I will tell you that, should you choose the ileal conduit with stoma, there is a 70% chance or so that you will develope a parastomal hernia as I have. The Doctors DID NOT MENTION THIS COULD HAPPEN. Not once was this mentioned, which I remain just a little upset about. With a 70% chance of happening, they damn sure should have told me about the possibility!  Since mine was noticed early via CT scan, I am confident I will not require further surgery. I simply wear a hernia belt when very active. There is no pain at all. Please take a good look at all options to replace your bladder carefully. There are pro's and con's to all options.

    Best of luck to you David. It will all turn out just fine.

     

    Best Regards,

    Lakeside

    thanks

    Thanks Lakeside,

    I appreciate the info, especially the 70% chance of parastomal hernia.  Never heard of it even after consult with surgeon who's recommending stoma vs bladder rebuild.  Removal is required at this point. I'm really looking for as much info I can gather to decide between stoma vs rebuild.

    Thanks again,

    Bernard