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.
@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, Bladdercancer.net team member)
how very positive and uplifting. Your post was heartening, thank you. Angela @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, Bladdercancer.net team member)
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.
@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, Bladdercancer.net team member)@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, Bladdercancer.net team member)
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. I have stage 2 aggressive muscle invasion as well. I did not allow the suggested bladder removal. Instead I chose chemo/radiation lasting 2 months. I am followed closely and it is now the one year mark with no reoccurrence. That may not sound like much but my husband and I decided we’ll take each say as a victory. I am 74 and I just didn’t want to lose my bladder or my lifestyle. I made the right decision for ME…. This is an enormous decision to make. My husband supports me 100%. Good luck….trust your decision. @jennifer N. - I wish you well with your treatments and pray that they will be successful. Please keep us updated as to your progress. On another note - For a significant number of us who have had RC, we have had minimal lifestyle changes. My best to you. Linda ( moderator, Bladdercancer.net team member)
@siri - the most important things are that you receive treatment if needed and that the decisions are those that you choose. My best to you. Please keep us posted. Linda ( moderator, Bladdercancer.net team member)
