The Colon Club

Hi Everyone,

Dick just finished his 28th treatment. He unhooked yesterday and helped me set up my classroom all day today. He is a wonderful man.

He wants to know who out there also has mucinous adenocarcinoma and what your story is. In other words is there a pattern with this cancer? Did you find a treatment that worked? (I know what does worked mean? 1 year, 5 years, 10 year?)

That would be great if you could share you story.

Aloha,
Kathleen

I just pm'd you with some questions before I saw this.

I have mucinous adenocarcinoma. I was diagnosed as stage II (that was before the a, b staging), I had chemo/radiation and then surgery. I wanted adjuvant chemo but they didn't do it back then for stage II. Then about a year and a couple of months later I five lymph nodes show positive and 2 lung nodules. They did a bronchoscopy to biopsy the lung nodules but they were to small and they couldn't get a specimen, they were able to biopsy a lymph node and it was positive for the same cancer. So, we can't be a hundred percent sure if the lung nodules were cancerous or not and they disappeared with the first PET scan and haven't been back since (that's been about a year). When I was first diagnosed I read that mucinous adenocarcinoma was more agressive than adenocarcinoma. I guess the mucinous factor makes it go from place to place easier.

It sounds like Dick and I are similar, I've had about 20 rounds of chemo I guess, 21 on Monday. It sounds like he's doing pretty good. I was too up until this round of oxi I just started again. This one has been wiping the energy right out of me and the last treatment I was SICK for 9 days and on day 1 my throat closed up in the middle of the night. That was really scarey. I don't even want to go and do chemo on Monday but I will and hopefully it will be better if he runs it slower and I don't take the calcium and magnesium (my heart rate went up into the 130's and I had chest pain).

So, I guess that's my story. If you have any questions feel free to ask. Tell me Dick's story.

God Bless!
Terry

I just pm'd you with some questions before I saw this.

I have mucinous adenocarcinoma. I was diagnosed as stage II (that was before the a, b staging), I had chemo/radiation and then surgery. I wanted adjuvant chemo but they didn't do it back then for stage II. Then about a year and a couple of months later I five lymph nodes show positive and 2 lung nodules. They did a bronchoscopy to biopsy the lung nodules but they were to small and they couldn't get a specimen, they were able to biopsy a lymph node and it was positive for the same cancer. So, we can't be a hundred percent sure if the lung nodules were cancerous or not and they disappeared with the first PET scan and haven't been back since (that's been about a year). When I was first diagnosed I read that mucinous adenocarcinoma was more agressive than adenocarcinoma. I guess the mucinous factor makes it go from place to place easier.

It sounds like Dick and I are similar, I've had about 20 rounds of chemo I guess, 21 on Monday. It sounds like he's doing pretty good. I was too up until this round of oxi I just started again. This one has been wiping the energy right out of me and the last treatment I was SICK for 9 days and on day 1 my throat closed up in the middle of the night. That was really scarey. I don't even want to go and do chemo on Monday but I will and hopefully it will be better if he runs it slower and I don't take the calcium and magnesium (my heart rate went up into the 130's and I had chest pain).

So, I guess that's my story. If you have any questions feel free to ask. Tell me Dick's story.

God Bless!
Terry

I was dxed with mucinous adenocarcinoma with signet ring features via biopsy June 2009.

I was given T4 as a size, since the cancer was considered outside the organ of origin. my cancer was atypical since it was a fistula i had been sporting for about 14 years. It branched off the rectum and exited perianally. I also have crohns disease (Dx '94).

after another abcess that burst and drained, I happened to have an appointment w/ my GI, who did not like the way it looked, and wanted me to see the surgeon. The surgeon in question was already familiar with my fistula, he even gave a go at plugging it the year before. and it failed. So, in '09 the surgeon's "Spidey senses were tingling" (don't knock the reference, this guy is ay-MAZE-ing) and off to exploratory under anasthesiafor said biopsies.

He referred me to the oncologist and radiologist (both awesome). treatment ended up being eight rounds of folfox, biweekly, followed by 28 days of radiation + 5FU infusing 24/7. Three months later, surgery which removed the cancer and a lot of surrounding tissue and a permanent colostomy. surgery also included plastics to close me up.

the pathology post op was T3N0M0. 19 nodes were removed, all negative. I pressed the surgeon for a stage. he said an aggressive stage II. the oncologist liked it.

I will be six months post op as of 8/26.

I have (had??) mucinous adenocarcinoma and did the resection and 6 months of oxaliplatin. At the one year mark, I'm clear. I can only hope it stays that way over the long term.

bump

I was diagnosed with mucinous adenocarcinoma 2-1/2 weeks ago. Stage 1, Tumor T2. I was told that rarely is it caught this early. 17/17 Nodes are clean. I have elected to do adjuvant chemo as a preventative method. My wife works in the oncolgists office as an EMT. I am still recoving from the section - the tumor was 4CM and encapsulated a 3CM tumor, all intact. Though it broke the intestinal wall, the fat surrounding the colon (thank you McDonalds) held the tumor from hitting my liver. Surgeon had clean margins for resection, and since it was just barely up against the stomach, removed a portion of that. My CEA is at normal 2.7 - all blood counts are good.

However, I am terrified knowing what I know about this type of cancer. I have been treated for PTSD for the past few years - so imagine how nuts I may be now.

My point is, I would love to share and have shared with me to as well as from you brave souls. I am honored to be in your presence as a part of this most helpful community.

Thank you!

UPDATE - Onc said on 1/19/2011 that I was incorrectly told that this is mucinous - it is not.