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urachal adenocarcinoma
Hello to one and all
Hope you are enjoying one of life’s better days.
Due to unexpected developments I need to hear from anyone who has tried a chemotherapy only approach to UA or indeed anyone that has information on the same subject please.
My Mum is an awe of my continuing positivity in the light of recent news – but as I said to her – if you are thrown into the deep end of the swimming pool you don’t let yourself sink and start counting the tiles – you swim for the surface
any help to keep above the waves appreciated [url=http://www.freesmileys.org/smileys.php]
all the best to everyone
dixie
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19 Replies
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Schulz, we deleted the post with your telephone number. To protect your privacy and on the advice of our attorneys we cannot allow personal, identifiable information to be posted on the Forum….Sorry
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
Schulz,
We all live and learn I know a bit about bladder cancer but I am always aware the more I know the more there is to know. I did research when this came up and did not catch that this is a type of bladder cancer. We launched this forum in 2008 and this is the first time in my memory we have talked about this type or it has come up in my research. Please feel free to educate us does it originate from bladder cancer cells? By the way your right Cisplatin is an interesting trip, I did the same cocktail + 1 in 2004 and 2005.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Cynthia,
I have met with 4 oncologist that all treat bladder and have been told that this is a type of bladder cancer. I am so great fil that it exists because other urachal cancer patients have posted. Urachal is a bladder type cancer but extremely rare. Told only 10 a year.
Hopefully the postings of others will find answers and common hopeful treatments
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there Are many more people with urachal cancer then the medical community feels.
Yes I have urachal with identifying characteristics of the dome of the bladder. Mine spread to ovaries and peritoneal wall I had cytoreduction with hipec and an about to take on the chemo regimentWho treated you? How aggressive was the tumor? Mine is a high grade
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I was diagnosed with urachal andocarcinoma with mucinin to the Peritoneal wall. Which is the devil. I had cytoreduction with hipec
This took place 2/9/19. I’m about to be treated with 6 months of chemo Gemcitabine and nasty cisplatin. They tell me I’m in a research group of “1” but now I just found you that makes 2. What grade is your tumor cell as far as aggressive??? That’s th big question. Mine is high. Did you have the peritoneal wall cleared if cancer? It’s a must -
Nreidy, Schulz,
As you know we do bladder cancer here but you are more than welcome to our community. While we can’t help you a lot with the specifics of your cancer we can support and we can give you what we know about chemo and such. I know this note doesn’t answer your questions but I just wanted to say welcome.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
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
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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.
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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!
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC. -
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!
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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
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Thank you for posting this. It is wonderful to hear from someone first hand who has been through this particular journey. You inspire me to hope for the best rather than dwell on the fears that accompany any type of cancer diagnosis.
My adenocarcinoma was not urachal but totally inside the bladder. I also had a partial cystectomy at the dome where the tumor was located. Fortunately mine was still considered small (1.6 cm) but it had wormed itself into the first half of the wall muscle. After getting clean margins and no lymph node involvement detected, I had no followup treatment other than continuing close monitoring with regular cystos and periodic CT scans.
Again, welcome to the forum and thanks for sharing your story!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
I am a 16 year cancer survivor. I had adenocarcinoma of the bladder – urachal origin. Not sure if its the same thing you guys are talking about. I just wanted to give you some hope :)
I was stage 3, and my only symptom was some blood in my urine. I wont go into the whole story, just wanted to let you know what treatment I had.
I had surgery to remove that portion of my bladder (where the tumor attached – top dome area). Then I had 6 weeks of radiation, and 6 months of chemotherapy (cistplatin and 5-FU, then changed to carboplatin & 5-FU). This was 16 years ago, and I am sure they have better drugs/procedures now.
Regardless, I am still here, 16 years later. I am pretty darn healthy. I have a few side effects from all the treatments, but nothing that keeps me from doing my daily tasks. I work full-time, excercise and pretty much do anything I choose.
I prayed a lot, and still do. I refused to allow the cancer to stay in my body. I think staying positive and fighting with everything you have is the best strategy!
If you have any questions, please ask :)
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Hello Catherine
thanks for your input – I have investigated the link and posted there hoping someone will come up with an idea.
That attitude you expressed is so right – doing ok till someone tells you otherwise – that is one of the things that helped me the morning following the bombshell – I realised that although the news was worse – physically I felt exactly the same – the power of a positive mind is all important.
take care off to catch up on some ZZZZ’s [url=http://www.freesmileys.org/smileys.php]
dixie
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