Adenocarcinoma-Rare BC
Hello, my sister was recently diagnosed with a rare BC. Dr.s are saying they want to treat like colon cancer. Has anyone been told they have adenocarcinoma/rare BC? If so, what treatment(s) were recommended?
Also, is radical cystectomy always the case?
@Rgonza17 - Welcome to this group. I wish better circumstances were the reason that you have joined us but we are here to provide information from our personal experiences as well as a great deal of support. I am not familiar with all of the different bladder cancers so I can not provide specific information. Also, I am not a medical professional but am someone who has been through bladder cancer, tests and surgeries. Do you have information as to the stage and grade of your sister's cancer? Treatment options are usually determined and suggested based on stage and grade. Radical cystectomy is a surgery that is recommended to some patients with the goal of getting rid of the cancer. My cancer was stage one but an aggressive form so I did not choose BCG but moved on to have my bladder removed over 8 years ago. Where is your sister in the staging etc? Has she had a TURBT? What is her medical team suggesting for treatments at this time? I understand that this is a challenging time and one where you want to help out your sister any way possible. This site is a great source of comfort and support. If you have more specific info that will help us with more information. Please also know that if RC is the best option for your sister - that many many of us have had radical cystectomies and lead a full and active life. Sending hugs and prayers your way. We are here for you so please reach out any time. Linda Urbanski (moderator, Bladdercancer.net team member)
Hi Linda, thank you SO much for responding.
My sister is T3 grade, aggressive but they haven’t given it a stage.
She had a TURBT about 6 weeks ago. The Dr said he removed what he could see but found out it went into the muscle.
They told her standard procedure is chemo & then removal of the bladder. She really does not want to do the cystectomy. And is not wanting to deal with the bag the rest of her life. (She’s only 5😎.
Today she had tests done to see if it has spread.
I’m sure you know how devastating this is for her as well as her family.
here to support in any way I can. You can ask anything. This my latest article which I think helps to sum up the journey to acceptance of my ostomies. Please keep
In touch and let me know how your sister gets on. I can send you other suitable links once you know the next steps. https://bladdercancer.net/living/the-gift-that-keeps-on-giving Laura, Moderator, BladderCancer.netok I sure will! Thank you so much!
She’s only 58
thank you for sharing your sister's story. I am so sorry for your being here, but I am glad you're here as you will find a lot of great information and support.
I am not a medical professional, nor do I have medical training. I am just a dorky primary caregiver, who researched and learned a lot through experience.
My Mom was diagnosed with aggressive bladder cancer, with T1 tumor. Her doctors made sure she understood it was aggressive and radical cystectomy should be considered. My Mom also didn't want RC, so she fought. She went through multiple TURBTs, BCG treatments, and ultimately chemo. Nothing worked.
T3 means your sister's has already invaded through connecting tissues and into surrounding fatty tissues. This is one small step from spreading to outside organs, and metastasis and not something you want to experience with bladder cancer. I would definitely weigh the pros of radical cystectomy and support your sister in finding out urinary diversion options available for her.
Please let us know if we can be of any help or support to the both of you. I hope and pray for miraculous healing for her and peace for your minds and hearts. Wishing you all my best, Charles (Moderator / BladderCancer.net)
firstly I am so sorry to hear of your sister’s diagnosis. Having support at times like this is key. She has you and you have us. I too had a rarer form of bladder cancer and sometimes getting the information or others with similar experiences is a little harder. I am not medically trained but I have read on medical sites as well as Adenocarcinoma in the bladder as a primary cancer, it is often a secondary cancer for example from the colon. Have they confirmed it is primary in the bladder? Perhaps why they are looking to treat like colon cancer if it originated there? It is worth writing down any questions you both have to ask the medical team. Sorry I can’t give any more specific advice on this type of cancer. Laura, Moderator, BladderCancer.net
