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Mucinous Adenocarcinoma

zigswife
Posts: 62
Joined: Jul 2009

In my obsessive reading about all the details of my husband's cc, I am finding that the characteristic of being "mucinous" is not fantastic. Are there other stage IVs out there who have this characteristic of their tumors- I would feel much better hearing from you!

Thanks!

polarprincess
Posts: 210
Joined: Aug 2008

I am not stage IV but i responded on another thread about 2 people i knew from my hospital that had the mucinous adenocarcinoma..and i know years later they are both still alive and disease free..in fact one is running a daycare.. so hopefully that gives you some hope!!

zigswife
Posts: 62
Joined: Jul 2009

Thank you so much!

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

My husband has been battling this rare condition since Nov.07. When you have time maybe you could give some backround of your experiences. I would love to be a support to you. Also stage IV.
Bless you and take care, Trish

bdee
Posts: 305
Joined: Feb 2009

How is your husband doing? I was diagnosed in January 2009 and still reading all kinds of scary statistics. What chemo is your husband on?
I, also, am Stage IV but my doctor calls it Stage IV colon cancer.

Debbie

bdee
Posts: 305
Joined: Feb 2009

I was diagnosed as Stage IV with mucinous adenocarcinoma in January 2009. I had ten pounds of the mucous removed then four liters of sterile water flushed out the rest. I now have seven tumors under or around my spleen, liver, lower right and left abdominal cavity and in the perinatal wall. I was on oxialplatin, 5FU and Avastin for the first three months, but the oxi was killing me faster than the cancer would, so now I'm only on 5fu and Avastin since March. My tumors are not going away, four are slightly larger and three are slightly smaller. I have some pain from the tumors, but my CEA is only 3.4 so my doctor will not suggest any more surgeries or a bone scan until my CEA reaches 5.
My husband and I have read so much on mucinous adenocarcinoma and talked to other doctors who tell us that the heated chemo is really the only way to get rid of the tumors. But Arkansas does not have a doctor who performs this procedure and the one person I know personally who went through the procedure still has tumors. More than I do, so we are not going to go that route unless we have to.
If you want to get in touch with me, please don't hesitate.

Debbie

zigswife
Posts: 62
Joined: Jul 2009

Debbie-
I'm not sure the extent to which this characteristic will play a roll in my husband's treatment and they way they described it is that the tumors have musinous features. The only thing the doctors have really mentioned about it is that it may make it difficult for the tumors to show up on the PET scans. All the other information I've seen on it is from reading on the internet and it seems that there are some varying opinions about how it changes the prognosis. I would love to get some information from you about what you've found out about it!

bdee
Posts: 305
Joined: Feb 2009

My tumors showed up fine on my first PET scan right before my surgery, but I'm not having another PET scan until my CEA reaches 5. I know all seven of them show up on my CT Scans. I have one of those every three months. Has your husband had surgery yet? Was mucous removed?

Debbie

zigswife
Posts: 62
Joined: Jul 2009

It sounds like its a feature of the tumors but they're still relatively small so it doesn't sound like they've gotten too out of control yet. Our surgeon (for the colon resection) said we should have the PET scan (What? The UVA oncologist said it wouldn't show up?!?) so we are waiting to get the appointment for it. I'm hoping the PET scan will help determine any other spots (there is some discussion about where else it is showing up) of concern. My goal is for them to take as much of his liver as they need to so that they can get all that *&@#$ out of there!

bdee
Posts: 305
Joined: Feb 2009

My tumors are in anything, they are around in under my spleen liver and all around my abdominal cavity. According to my onc, he will be doing the PET scan to determine if the cancer has spread outside of the abdominal cavity. I'm scared about that.
Did you husband have a lot of mucous taken out of his abdomen when he was operated on? Did the mucous start in his appendix?

Debbie

zigswife
Posts: 62
Joined: Jul 2009

Debbie-
I responded to your post and my computer got unhappy and apparently the post never made it- sorry! Anyway, the onc said there was mucous in the cells so it sounds like it is a characteristic of the tumor rather than something it is actively producing (especially since the mass in his colon had apparently been there for about five years).

Have you had the PET scan yet? One onc said the tumors wouldn't show up on the PET scan but the surgeon said they could and has ordered one. I'm curious as to whether yours showed up or not.

bdee
Posts: 305
Joined: Feb 2009

I had a PET scan the day before my surgery, but not since then. My surgery was in late January. My onc says he won't do another one until my CEA has gone back up to 5, now it is 3.4. It goes up every month, so I am expecting another PET in October. I do have CT Scans every three months and the tumors show up fine on them, even my littlest tumor at .8cm.

My mass was fast growing. DId your husband's mass start in his appendix?

Debbie

zigswife
Posts: 62
Joined: Jul 2009

It started in his colon and has spread to his liver, most likely to a pancreatic lymph node, and hopefully that's it. We get the PET scan on Wednesday- do you remember how long it took before the results were available for yours?

bdee
Posts: 305
Joined: Feb 2009

The surgeon had the results the very next day before my surgery which was at 8:30 a.m.

Debbie

taipei
Posts: 33
Joined: Aug 2008

I was dx with this kind of charcteristic of tumors on June 2003, met to liver and lungs, after surgeries, 3 kinds chemo, I am ned since aug 2007, praise the Lord.

bdee
Posts: 305
Joined: Feb 2009

I would like to know the name of the chemo drugs you took. Maybe I can ask my doctor about them because he's not giving me that much hope of ever being ned, just keeping the tumors down with 5FU and Avastin.

Thanks and congrats,
Debbie

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

Wanted to make sure you saw my post, so I started a new topic titled mucinous adenocarcinoma of the appendix- Stage 1V.

taipei
Posts: 33
Joined: Aug 2008

first was folfiri(5fu,leucovorin, camptosar) for about one year, then folfox about 6times, stabilzed, for 6mo, third was avastin and xeloda for maintence, about 11 months, then left lower lung wedage resection, aug 07 had right side wedage resected. Hope this would help, God bless you.

juliebeth
Posts: 21
Joined: Sep 2009

I have been told that if you have ca in the lung then you cannot have surgery. Who did your surgery

taipei
Posts: 33
Joined: Aug 2008

I had abdomen and chest scan on 8/26/2009, saw the onc this morning, his is happy, I am happy, another NED scan, Praise the Lord. God bless you all.

juliebeth
Posts: 21
Joined: Sep 2009

What is your husband's status now. I have mucinous adenocarinoma of the app. stage 4.

zigswife
Posts: 62
Joined: Jul 2009

I'm not sure if that was in response to my original post, but I just saw it and wanted to respond. My husband responded well to the first six rounds of FOLFOX and Avastin and will be getting an MRI next week to see if he can go through with a liver resection (we have two surgeons who say there is a good possibility!). The PET scan showed that two of the original tumors are no longer lighting up and the third has about half as much activity as it did in the beginning. At the same time, the mucinous features of the tumors means there still could be some activity going on but that it isn't showing up on the PET scan. Now I just wait with my fingers crossed and see what the surgeons say.

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