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My Husband Wants to Keep His Bladder At All Costs

Hello there community. My name is Jennifer and my husband was diagnosed with Stage 2, high grade, muscle invasive bladder cancer as of April, 2021. He had the muscle invasive tumor removed as of 04/13/2021 and he is having strong chemotherapy treatments, but he is completely against having his bladder removed.

Are there others out there whom have managed to keep your bladder through this disease, specifically when diagnosed as Stage 2, high grade, muscle invasive?
When I try to research it, if he keeps his bladder he is just increasing the chance for the cancer to metastasize. But he is extremely against having his bladder removed.
His last CT Scan didn't show any signs of cancer in his bladder, in fact his bladder looked normal. So, it's hard for us to understand that if his bladder looks normal, without cancer, why does it still need to be removed???
Any resources, personal testimonies or recommendations are welcome! Thank you in advance! From, a loving caregiver...hoping for the best for my husband of almost 15 years.

  1. thanks for your post. Many people that are diagnosed at Stage 2 do retain their bladders, but it does then require ongoing follow-ups and cystoscopies, sometimes for the remainder of your life. Our team here is non-clinical, so we cannot offer medical advice. However, many who are told that they should have bladder removal seek second opinions with another bladder cancer specialist. I personally would not rely on CT scans, cystoscopies are the gold standard as they can see things that CT scans will not pick up on. We do have several of our community members who have retained their bladders, but I don't know what stage they were initially diagnosed with.

    I was diagnosed with Stage 3B, very invasive, about the size of a grapefruit at the time of my surgery. It had grown through my bladder wall and started attaching to my cervix. Removal was the only option for me, but I'm so glad I did it and did not resist it. I would not be alive today if I had. Having a urinary diversion does not stop you from living the lifestyle you want, but bladder cancer can. You can do everything that you did with a urinary diversion - no matter which one is chosen - as you can without a diversion...sometimes more because you're not constantly seeking out the nearest toilet!

    We wish you and your husband lots of luck through the journey. Thanks for sharing. And I hope that others who actually have retained their bladders chime in and share their experiences with you. ~Liz, Moderator

    1. thanks for sharing! Glad to hear that things seem to be going well for you! Thoughts and prayers with you as well. ~Liz, Moderator

    2. Thanks!! God is good all the time!!

  2. @Jennifer N. I am sorry that your husband is dealing with this. Bladder cancer is as they say "a slippery slope". There are people out there and I assume some on this site, who have had invasive cancer and kept their bladder. There are also people like Liz who were diagnosed at a later stage and me at an earlier stage and we both have had our bladders out. I would assume that your husband's medical team will provide options. And of course a 2nd opinion is always a good idea. I know others who have been in clinical trials. If it happens to come up that his best options is a cystectomy, please know that there are many many of us out there who are bladderless and doing just fine. I hope that his results come back good. Please keep us updated. Sending prayers your way. Linda ( moderator, team member)

    1. how very positive and uplifting. Your post was heartening, thank you. Angela

    2. @Angela - you are very welcome. Please reach out if I can be of any help to you with your upcoming surgery. My best to you. Linda ( moderator, team member)

  3. Hi Liz and Linda... 1st of all thank you for your responses! We met with a new surgeon today and I'm so thankful in regards to how down to earth & helpful he was. He recommended for the bladder to be removed. My husband is still having a hard time accepting it, but he is slowly coming around to the idea. I keep telling him I want him to live as long as possible. We'll be married for 15 yrs this coming January. This Dr explained things better than other Dr's. So thankful for that.

    1. @Jennifer N. I am happy to hear that you found a doctor who would better explain things and take the time needed hopefully to understand his treatment suggestions. Feeling more comfortable is extremely important.
      I do not know where you are located but........I am the co-chair of a great event the annual North Carolina Bladder cancer Retreat - the end of Sept. It is a retreat (12th year) where bladder cancer survivors meet, enjoy the scenery, gain support, lots of info, handouts, swag etc. It is a very uplifting event and not a debbie downer at all. It is the perfect place for people to meet others who are going through EXACTLY what you are.. We will have several people there who have been through RC and would happily answer any and all questions you have. Others have chosen different treatments and will tell about that also. If you would like info, please message me. Another suggestion that does not involve travel is to have both you and your husband actually speak with or maybe meet people ( locally) who have had RC. There are thousands out there and many are more than willing to help others understand what changes and adaptations your husband may go through should he choose that treatment. I never push my choice on anyone as this is a very personal decision but will always be available to help others through their choice. RC is not a death sentence but certainly can help get your life back. My best as always. Linda ( moderator, team member)

    2. @Jennifer N. We are always here to help reach out if needed. I am not saying RC is a walk in the park but many of us lead active normal lives being bladderless. In the end, the decision is up to your husband with your support. My best to you both. Linda ( moderator, team member)

  4. The timeline you posted is almost the same as mine. I’m 66 and Stage 2 came out of nowhere. Of the three layers in the bladder, my growth went through 1 1/2 and was removed. I am on the BCG treatments and go back every three months for a check. The docs say this will be the 4 year plan to keep ahead of it coming back. Did I smoke, drink, drugs, exposed to carcinogenic substances? Nope. Never. The docs said that I just fit the demo for bladder cancer. Lucky me.

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