Not really colon cancer, but being treated as it were

onein10000 · June 2004

This is my first post on this board.

Last year, I was experiencing some bladder problems, and my urologist, after doing both a PSA and a biopsy, said there was "nothing there" and treated me with Cipro for 10 days. After repeating this twice and not having any results, I went to a different urologist who decided there was something there and did a abdomen and pelvic CT and a bladder biopsy. The diagnosis he gave me (a week before Christmas) was urachal cancer. Because there a question if this was the primary cancer, I was referred for a colonoscopy (done New Years Eve), which was inconclusive as to the primary site. Was it colon invading the bladder, or vice-versa?

As a result of the complexities involved (they estimated 5 to 8 hours for the surgeries), the actual procedures weren't done until February of this year. Rather than urachal or even colon cancer, the surgeon discovered that it was stage III appendiceal with mets. The urologist and colo-rectal surgeons ended up taking my appendix, a good portion of the colon, a part of the bladder and about 8 lymph nodes, leaving me with a colostomy. The rest of the mets had gone into the pelvic sidewall, which is inoperable and not considered to be viable for radiation.

Because this is rather rare (about 1 in 8-10,000 cases from the literature I've seen) the doctors can't really offer much advice other than to treat it as a type of colon cancer and see what might work.

I was finally able to get referred for treatment and had the first IV of Oxaliplatin last Friday. They also have me on 2000 mg Xeloda, twice daily. Aside from a couple of minor side effects, things seem to be going pretty good (in view of the side effects they warned were possible). My CEA is normal and cannot be used as a marker, so the results will probably need to be checked with additional blood tests and/or CT scans to see is this is working or not.

My next appointment with the doctor is the 17th of this month, so hopefully they will be able to have some news for me.

kerry · June 2004

Wow!! What a diagnosis. I'm so sorry, but at least you found out what it was and now to work on a treatment plan and get it "nipped in the bud." Please let us know how you are doing. You will be added to my prayers. Take care.

Kerry

spongebob · June 2004

Ahoy, onein10000 -

Well, your name certainly fits. What a unique form of cancer. Where are you being treated? Are there any research or trials near you?

Welcome to the semi-colons - you certainly appear to meet the criteria for joining us!

Hope all is well at your next visit on the 17th.

Cheers

- SpongeBob

Fitlisa · June 2004

Hi Onein10000

I am very new to this board also, so a welcome from one newbie to another. You will find, as I have, how caring everyone here is - we are all in the same board and therefore we, moreso than most in your life, can really understand and relate to what you are feeling.

I hope your appt. on the 17th goes well that your treatments continue well for you. Dont hesitate to write or to post here whenever you need support.

Lisa

rep801 · June 2004

Hello Onin10000.

Understand what you are facing. While what I have is not identical to you, mine is also an extemely rare cancer (in that 1 out of 10,000+ incident rate) that most physicians tend to view as a form of colon cancer. All I can do is encourage you to research, research, research. Perhaps you will find a specialist that knows more about your particular condition. I know from my research (since my form of cancer also arose from the appendix) that there are some physicians around the country that do specialize in these various rare abdominal cancers. You may want to check out www.pmppals.org in the physician tab to see if any of those specialists can add any value.

I have been dealing with my condition for nearly 4 years now. In my quarterly checkup with my specialist yesterday, my specialist (who I really respect and credit with signifantly extending my life) responded twice with "who knows, it is worth a try, and you have become more of an expert than most doctors". In one sense that is pretty frightening, but it also gives you a very good base on which to judge doctor's recommendations. Again, just keep researching.

Best wishes on your upcoming appointment.

Bob

kangatoo · June 2004

rep801 said:
Hello Onin10000.

Understand what you are facing. While what I have is not identical to you, mine is also an extemely rare cancer (in that 1 out of 10,000+ incident rate) that most physicians tend to view as a form of colon cancer. All I can do is encourage you to research, research, research. Perhaps you will find a specialist that knows more about your particular condition. I know from my research (since my form of cancer also arose from the appendix) that there are some physicians around the country that do specialize in these various rare abdominal cancers. You may want to check out www.pmppals.org in the physician tab to see if any of those specialists can add any value.

I have been dealing with my condition for nearly 4 years now. In my quarterly checkup with my specialist yesterday, my specialist (who I really respect and credit with signifantly extending my life) responded twice with "who knows, it is worth a try, and you have become more of an expert than most doctors". In one sense that is pretty frightening, but it also gives you a very good base on which to judge doctor's recommendations. Again, just keep researching.

Best wishes on your upcoming appointment.

Bob

HI--welcome Onein10000---You know, we could all buy a lottery ticket with better odds n still lose!!!
Sorry to hear of your cancer but nonetheless you have come to a place where all of us care about each other.I hope you are able to find some info here from others that can help you thru this journey.
No matter how "down" we can get it is always a comfort to know our friends here can relate to our worries--please keep us informed of your progress.
luv n huggs--kanga n Jen

paulswife · February 2005

My name is Kerri and my husband was diagnosed february 2004 with stage four urachal cancer. He had 1/3 of his bladder removed and a colon resection. We then flew to Houston, Texas and went to MD Anderson Medical Center where he began very aggressive chemotherapy. 5-FU, Leucovorin, Cisplatin, and Gemzar. It was a five day regimen every three weeks for four months. It was tough, but my husband made it through. He then went through additonal chemotherapy with irretintican and Avastin starting in August of 2004. This October, our world stopped again. Paul had terrible abdominal pain, we went to the hospital and the cancer was back. We couldn't believe it. He had additional surgery to try and remove the tumor, but when they got inside of him, the cancer was too advanced to operate. It was scary. He too had a colostomy, which was difficult for a 40 year man to have. But we are pretty good at it now. The hardest part was when the doctor told us that Paul had 4 to 8 months to live at the most. He said the disease was too advanced. When we left the hospital, the nurses asked me if I wanted to start hospice. I couldn't believe this was happening!
When we got home we phone our oncologist who we have so much faith in. He said, there is one more thing we could try. They biopsied the tumor and sent it away to see if it would be eligable for treatment with erbitux. erbitux is a new drug for colon cancer, and head and neck cancers. Our prayers were answered, and the test came back that it was eligible for the erbitux. It has been four months now and my husbands pain in not worse, and he is still here! The oncologist is hopeful the erbitux could be working.
I hope by sharing my husband's story you can see you are not alone in fighting a cancer hardly anyone knows anything about. There are only 45 documented cases of urachal cancer at MD Anderson, which is the biggest cancer hospital in the world! Where we live in northern California, our oncologist has never seen a case in his career. We were told in Texas that urachal cancer effect one in 5 million people.
LIVESTRONG, we are thinking of you and hope you are doing well.

RNP32 · March 2005

rep801 said:
Hello Onin10000.

Understand what you are facing. While what I have is not identical to you, mine is also an extemely rare cancer (in that 1 out of 10,000+ incident rate) that most physicians tend to view as a form of colon cancer. All I can do is encourage you to research, research, research. Perhaps you will find a specialist that knows more about your particular condition. I know from my research (since my form of cancer also arose from the appendix) that there are some physicians around the country that do specialize in these various rare abdominal cancers. You may want to check out www.pmppals.org in the physician tab to see if any of those specialists can add any value.

I have been dealing with my condition for nearly 4 years now. In my quarterly checkup with my specialist yesterday, my specialist (who I really respect and credit with signifantly extending my life) responded twice with "who knows, it is worth a try, and you have become more of an expert than most doctors". In one sense that is pretty frightening, but it also gives you a very good base on which to judge doctor's recommendations. Again, just keep researching.

Best wishes on your upcoming appointment.

Bob

Hey All,

My mother (only 46 yrs- old!) was just diagnosed with signet ring adencarcinoma (of the appendix). She originally went in for a hysterectomy when the docs discovered how "odd" her appendix looked. They ended up removing her appendix, part of her colon, and all her female organs. They could only remove 80-90% of the cancer leaving the rest in her pelvic region. They are hoping to get the rest with chemo. I am having a hard time finding information on the disease. Doctors have little to offer us as well. We have seen a few doctors in our area, including U of M hospital in Ann Arbor, MI. Mom started her chemo yesterday and seems very nervous about it. I thought it might help her to know that there are others out there battling the same type of thing. Any information you're willing to offer would be greatly appreciated. I'm curious to hear more about others' experiences, doctors you've talked to, info. they've offered you, etc. I hope to hear from you soon. Until then, good luck and God bless.

Rachael

Not really colon cancer, but being treated as it were

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