Re:urachal adenocarcinoma

Hello, my name is Nicole and I was diagnosed with Urachal Cancer (adenocarcinoma) with spread to my peritoneum. I have mucinin in my belly too. I was diagnosed last month and started treatment at Dana Farber in Boston. I haven't been able to find anyone, however I know of two woman successfully treated in Massachusetts that I'm trying to find.

How long have you had it, what treatment have you been doing, who is treating you?

Nicole

Thank you. I’m very discouraged for I can not find anyone alive with urachal cancer that spread to The peritoneal wall. Nor can I find anyone with andocarcinoma mucinin that spread.

I had stage 4 bladder cancer, my bladder and prostate were removed in 2017, after a month cancer came back with a vengence, lungs,liver,and lymph nodes. I was placed on palliative care and was offered immunotherapy. after a few months I started getting better and the cancer was going away. Ive recently had a CT scan done and am waiting for results. Everyone is different for me KEYTRUDA worked but there are many new immunotherapies coming out , one may work for you! Don't go by percentages I know I used to do the same. but by that scale I would have died Dec of 2017. its 2019! never give up!

Good luck! I hope That your treatment works

I responded Above about 7 years ago. I didnt Have the exact same cancer as you, but it was an adenocarcinoma if the bladder urachus.

I had Surgery to remove the tumor and then radiation and chemo. Happy to say that I’m a 23, almost 24 year survivor!

The best advice I can Give you is to stay positive and fight with every ounce of your being. Learn some meditation strategies and create a positive mindset where you focus completely on getting healthy! I’m not saying I never felt defeated and sad .. but I didbt Let myself dwell on it - I found The silver lining in whatever I could.

The cancer was life changing! I am Alive, well, and sooooo thankful! I apprecite Every single person in my life so much more! I am Thankful for each and every day I can Get out of bed and go about living my life. I have A new little grandson and I feel So blessed to be here to get to know him!

Be strong! I’ll be praying for you!

I have urachal andocarcinoma mucinin
I had cytoreduction with hipec.
About to have chemo port to stomach
Anyone else have this and is alive?

Hello dzkimmi & Catherine

I replied on the other thread - but then spotted this one too. I agree your story is an inspiration - just what is needed amongst all the negative stuff we read about adenocarcinoma of urachas or bladder.

Catherine it was good that they could cut it out whilst it was small - dzkimmi - do you mind me asking what size your UA was when it was discovered? As you both know - surgery is the best chance of a cure.

I had symptoms for a while - that were put down to other medical problems - so I have only known about the UA for a relatively short time - another reason why the current prognosis is so hard to accept.

Heading off to bed - its been a long day chasing alternative therapies in the city

will catch up with you both soon

take care and thanks for posting your story

dixie