Link between uc and peritonei pseudomyxoma (cancer)???

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Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 3/14/2009 9:59 PM (GMT -6)   
I have been doing some research on peritonei pseudomyxoma for my uncle who has been dx'd with it.  I came across some startling info regarding a minute link between uc and pmp.  Of course this is terrifying to me as I know our risk for cancer with uc is increased as it is.
 
Has anyone heard of this or had any experience with this?
 
Charlotte
Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 3/15/2009 3:08 AM (GMT -6)   
Hi..it doesn't state that pseudomyxoma peritonei and UC are linked, but it might be that patients who have colonic/appendix/ovary involvement of some disease may be more likely to contract PMP. I don't know if there is a specific test for it, but cancer markers as well as scans would help to make a diagnosis.

I can relate to your fear, for I have UC-related liver disease, and that ups the cancer %. Scary to be sure.

You should, however, bring this up to your doctor and research if there are specific tests considering you do have UC and a relative who has PMP. It also seems it's more often in women than in men....but that could be because PMP can also originate in the ovaries, which would tip the scales in that %.
 
Curious how your uncle came about the diagnosis...what were his symptoms, etc?

quincy


*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 3/15/2009 1:22 PM (GMT -6)   

Hi Quincy,

Thanks for the note, I plan on talking to my GI about it in a few weeks.  I have blood tests done each time I have remicade and I know he checks all the "levels" to be safe, but it is still scary!

My uncle, who is very fit for his age, was having some abdominal pain, bloating and all around discomfort.  He thought that the had eaten a bad bag of salad or was suffering the flu.  He went in and had some tests done and after a ct scan, that is how they discovered his pmp.  He was looking into a ver risky surgery called the sugarbaker procedure where they essentially remove all of your abdominal organs and "blast" the lining of your abdomen with chemo and then put everything back but the surgeons have stated he is too far progressed to consider it.

All these diseases are awful!


Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 3/15/2009 5:00 PM (GMT -6)   
WOW....sounds absolutely scary for your uncle. It's good they caught it, for basically the disease is relatively painless/silent until it's more advanced.

Is your uncle related to your dad or mom? Does UC run in your family as well?

q
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 3/15/2009 8:45 PM (GMT -6)   

Quincy,

My uncle is pretty scared but he is hanging in there.  I think it is just sinking in that he won't have the surgery as a viable option. 

I am adopted so I don't know any of my medical history, unfortunately.  I actually contacted my birth mother several years ago (after searching for her for many years I found out that she lived 10 minutes from me! - another story).  She didn't share any medical info with me so I am still left wondering.


Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 3/16/2009 12:12 AM (GMT -6)   
Hi there....I just found this, and it states that the Sugarbaker procedure does include surgery.  Of course, I know nothing about it, but just curious as to why your uncle states that he's not viable for surgery.
 
 
Thanks for the clarification regarding your birth status.....maybe one day you could ask for info regarding family health.  Would she be able to get any info regarding the birth father?
 
I think, however, that you being adopted with no family health history, the docs would put you in a more testing process for things...but if you don't have any other things happening except UC..you may just be one in the lineage that only has it. 
 
Hope your uncle's surgery goes well...keep me posted if you don't mind? 
quincy
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 3/16/2009 11:19 AM (GMT -6)   

Hi -

Thanks for the info about the surgery!  The surgeons at the university hospital here said my uncle is not a candidate because the cancer is too far progressed already.  Pretty scary!

I just posted about the results of my colonoscopy last week and am terrified!  let me know what you think!

I actually asked my birth mother for any medical history and she just never replied to me.  I tried asking her to jus tsned me what she knows without having any contact but I never heard from her.  My ob/gyn sends me for mammograms already (I am 36 and had my first at 35).

All of this is so scary!


Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.

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