Urachal Cancer Survivor

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RE: Urachal Cancer Survivor

by vtoole on Thu Dec 08, 2016 04:15 AM

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On Dec 07, 2016 11:16 PM Michaelscrosby wrote:

Hello,

In Sept 2016 I went to the emergency room with stomach pains, not sure if related but CT scan showed Urachal Mass. Surgery in October 2016 confirmed Urachal Adenocarcinoma. Surgery went well, all of the mass was removed intact and mass was confined to the urachal mucosa and margins were negative. Surgeon removed mass en bloc and small part of bladder wall as precaution, but did not remove any more of the bladder, nor my belly button, nor any lymph nodes. The surgeon and hospital tumor board met to discuss treatment and recommended no further treatment, no further removals, no radiation, no chemo. Only plan is to follow up with CT Scans in 3 month intervals. Based on my understanding my surgery seemed to show best case scenario (assume stage 1). But I am concerned about not taking a more proactive approach to treatment. I don't really want to remove my entire bladder if not necessary but I'm not entirely comfortable with the sitting around and waiting approach either. I'd be interested to hear others opinions on the subject and if there are any other stage 1 or 2 people on here and what their treatment was? My hospital and Dr are with Piedmont Hospital here in Atlanta GA and I understand that they are somehow affiliated with MD Anderson in Houston. I am considering contacting MD Anderson for second opinion. Does anyone know of any other good hospitals for this type of cancer? Thank you all and may God bless us all.

Hello Michael, Sorry for your situation. My best advice to you is to most definitely contact MDAnderson. Please don't wait. There is a Dr. Seifert-Ratdke who is in the Urology Department there who discovered the 5FU chemo regimen that has helped many. My husband waited for 6 months before going to MDAnderson and I would not recommend waiting at all. I am also skeptical about not having your belly button removed and not removing more of the bladder than just "the wall." What does that mean? Did they get the entire tumor (mass)? Also, resecting the lymph nodes is pretty standard in this rare agressive cancer in order to determine if metastasis has occurred. Why did the doctor not do that? They typically do an en bloc resection- removing the tumor (partial or complete cystectomy), remove the belly button (as the cancerous urachal remnant is attached to the belly button), and take out a good number of lymph nodes to determine if the margins are clear or not - if metastasis has occurred. I strongly urge you to go back and read al the previous entries in this blog. There are many pages with an incredible wealth of information. Reading everyone's experiences and treatments gives you the questions to ask your doctor and helps you be more fully informed. I wish you the best of luck. Prayers. Vivian Toole

RE: Mom Has Urachal Adenocarcinoma

by FredOliop on Tue Dec 13, 2016 10:10 PM

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Yes thanks for the not

RE: Mom Has Urachal Adenocarcinoma

by annopo on Wed Dec 28, 2016 12:18 PM

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Hi all, I'm Ford from Thailand. I''m 30 yrs. old male and I've been diagnosed to have Urachal cancer in November 2016. The tumor size is 4.5x2.5x2.5cm and it invading to bladder musculate. I have done the surgery, doctor has took out the tumor, belly button and 10% of bladder with margin. The pathological report saids that the margin is clear but there is a presence of lymphatic invasion. However, lymp nodes that doctor took out about 21 nodes is free from cancer. My doctor told me that he clean everything that can be seen. Next step, doctor suggest me to have a chemo therapy with the formular of bladder cancer used. I know very little about this cancer and I don't know what stage it is?? I'm so worry about its recurrence and I don't know if I applied the chemotherapy as the doctor recommended, it will be recur or not?? I try to learn something form this board and hope anyone here can help me to overcome this difficult time. God bless you all. Ford

RE: Mom Has Urachal Adenocarcinoma

by vtoole on Wed Dec 28, 2016 04:49 PM

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On Dec 28, 2016 12:18 PM annopo wrote:

Hi all, I'm Ford from Thailand. I''m 30 yrs. old male and I've been diagnosed to have Urachal cancer in November 2016. The tumor size is 4.5x2.5x2.5cm and it invading to bladder musculate. I have done the surgery, doctor has took out the tumor, belly button and 10% of bladder with margin. The pathological report saids that the margin is clear but there is a presence of lymphatic invasion. However, lymp nodes that doctor took out about 21 nodes is free from cancer. My doctor told me that he clean everything that can be seen. Next step, doctor suggest me to have a chemo therapy with the formular of bladder cancer used. I know very little about this cancer and I don't know what stage it is?? I'm so worry about its recurrence and I don't know if I applied the chemotherapy as the doctor recommended, it will be recur or not?? I try to learn something form this board and hope anyone here can help me to overcome this difficult time. God bless you all. Ford
Hello Ford, So sorry for you're having to travel this road of this disease. It sounds as though the doctor has done what he can do so far. I wholeheartedly agree with him that you MUST do the chemomregimen. Which one is it? The chemo is systemic and so will go through your entire body. This disease is systemic if it has "lymphatic or invasion."'our lymph nodes are located all over our body and "catch" the bad stuff in our system. However, they also spread things throughout the body as well. This disease is so rare and very tricky. Be sure to also ask for genetic testing. They can now do it through your blood (or tissue biopsy from some of the tissue already removed from your bladder.) This way, you can gain other options for treatment. They have experimental treatments based on your genetic abberations. My husband underwent 4 different treatments based off n his own genetic peculiarities.'These treatments worked for periods of Time and prolonged his life. I strongly encourage you to go back and read the entries in this blog. Go way back and read them all. It is a wealth of information of others in your same exact situation and gives you the many different options and paths others took. It also arms you with lots of questions for your doctor's day helps you be your best advocate. By the way, your doctor definitely should know the stage of your cancer. There is a very clear system that is used for staging. Insist on his being clear and honest with you. Get a second opinion if you can. Also, have him get in touch with Dr. Arlene Seifert-Rathke at MDAnderson Cancer Center in Houstin, Texas. She "invented" one of the chemo regimens that worked for my husband. Best of luck to you on your journey. Never give up. Keep reading. Keep asking questions. Keep posting what's happening as you go along and ask more questions. Positive thoughts coming your way. Vivian

RE: Urachal Cancer Survivor

by Michaelscrosby on Mon Jan 09, 2017 04:42 AM

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Hello Vivian, Thank you for your reply. I have an appointment scheduled with Dr. Ratdke in 2 weeks. They have already scheduled a complete bone scan and a cardiac scan for me. Perhaps even more tests to be scheduled. Just to clarify my previous post. The surgeon did remove the entire mass in one whole piece, it was confined within the urachal mucosa. It was not grossly invading the bladder, so they decided to only do partial cystectomy of the bladder wall muscle. I learned that they did take some lymph nodes and the Pathology reports just indicated "questionalble lymph nodes". Pathology report also indicates margins are free from involvement. Appreciate your further thoughts. Thank you.

RE: Urachal Cancer Survivor

by PhilA on Tue Jan 10, 2017 02:31 AM

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Hi Michael,

I'm glad you have an appointment with Dr. Radtke.   I am a urachal cancer survivor.  My surgery date was Feb 2012.  The standard procedure is to remove the umbilicus whether or not there is any cancer that is seen.  That's what I had done.  I also chose to have chemo of cisplatin, taxol and ifosfamide. My regimen was different that the one given for standard adenocarcinoma because part of my tumour was identified as sarcomatoid.  Dr. Radtke will fill you in on the best treatment for your particular situation and whether you should have an additional surgery.  Also - it doesnt hurt to get a second opinion on the pathology.  I had my second opinion from Johns Hopkins.  Phil

RE: Urachal Cancer Survivor

by vtoole on Tue Jan 10, 2017 03:37 AM

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On Jan 09, 2017 4:42 AM Michaelscrosby wrote:

Hello Vivian, Thank you for your reply. I have an appointment scheduled with Dr. Ratdke in 2 weeks. They have already scheduled a complete bone scan and a cardiac scan for me. Perhaps even more tests to be scheduled. Just to clarify my previous post. The surgeon did remove the entire mass in one whole piece, it was confined within the urachal mucosa. It was not grossly invading the bladder, so they decided to only do partial cystectomy of the bladder wall muscle. I learned that they did take some lymph nodes and the Pathology reports just indicated "questionalble lymph nodes". Pathology report also indicates margins are free from involvement. Appreciate your further thoughts. Thank you.

Hello Michael, glad to hear from you. I am also glad to hear you have an appointment with Dr. Seifert-Rathke. A partial cystectomy is, indeed, a very viable option! I have not heard of a pathology report of "questionable lymph nodes." I am certain MDA will clarify that. Do you mind sharing with me why they are doing a cardiac scan? I've honestly not heard of that either. My husband did have thoracic scans regularly that also always included the condition of his arteries. I think the good news is "margins are free from involvement." I agree with Phil removal of the urachus is important. Studies show that there is better long term remission if they do an "en bloc resection" - removal of urachus. I'm in total favor of chemo regimen follow up to surgery. But, again, Dr. S.R. will give you excellent advice/care. Be sure to go back (if you haven't already) and read all this blog's entries so that you have full picture of everyone's surgeries and various treatments that have been used and been successful. I am sending positive thoughts your way. Please let me know how things go with Dr. SR.

RE: Mom Has Urachal Adenocarcinoma

by ShaunGilly on Tue Jan 10, 2017 03:47 AM

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Hi, I have been reading a lot of the posts on this forum since receiving my diagnosis last week (Urachal Mucinous Adenocarcinoma) I am a 32yo bloke form Perth Australia, I have not been able to find anyone in Aus that is or has been through this cancer so I am reching out here. I was originally told I had a bladder mass 7.5cm x 6.5cm x 5.5cm (roughly a baseball) but upon TURBT it has found to have originated outside the bladder and invaded through the bladder wall. Pathology report states well-differentiated Urachal cancer and I have been scheduled for partial cystectomy and umbilicotomy with chance of some bowel removed too. Chemo I am told is not needed. Anyone have any info on recovery after surgery or living with smaller bladder. so many questions and not a lot of information out there. 

Cheers

RE: Mom Has Urachal Adenocarcinoma

by Michaelscrosby on Tue Jan 10, 2017 04:41 AM

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Hi, do a Facebook search for urachal adenocarcinoma, I believe you will find a gentleman in Brisbane who is going through it as well. His Facebook posts/blog have been very helpful to me.

RE: Mom Has Urachal Adenocarcinoma

by vtoole on Tue Jan 17, 2017 07:13 PM

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On Jan 10, 2017 3:47 AM ShaunGilly wrote:

Hi, I have been reading a lot of the posts on this forum since receiving my diagnosis last week (Urachal Mucinous Adenocarcinoma) I am a 32yo bloke form Perth Australia, I have not been able to find anyone in Aus that is or has been through this cancer so I am reching out here. I was originally told I had a bladder mass 7.5cm x 6.5cm x 5.5cm (roughly a baseball) but upon TURBT it has found to have originated outside the bladder and invaded through the bladder wall. Pathology report states well-differentiated Urachal cancer and I have been scheduled for partial cystectomy and umbilicotomy with chance of some bowel removed too. Chemo I am told is not needed. Anyone have any info on recovery after surgery or living with smaller bladder. so many questions and not a lot of information out there. 

Cheers

Hi Shaun...so sorry to find you here on this website. I am unfamiliar as to how the cancer invaded from outside the bladder wall if it is UA. I was under the pression - from my husband's diagnosis and years of treatment - that Urachal Adenocarcinoma travels from the belly button down into the dome if the bladder and then if it spreads it could go outside the bladder wall and into the surrounding organs - one of which is the colon.. I would go back over all these blog entries in this site and read all of them. There is so much information from so many different people in so many countries and states. They write about diagnoses, treatments they've had, etc. it's a world of info you can't get elsewhere, I believe. If you have bowel involvement, and, if there is some chance the UA originated in the bowel, then, Vectibix is a very viable "chemo" treatment that works against colorectal cancer cells which are remarkably similar to the UA cell. I'm a big proponent of chemo follow up in most cases of UA. That's been my experience. I wish you health and healing. Vivian
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