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Endoscopy nurse with colon cancer

EndoRN1985
Posts: 17
Joined: Jun 2019

Hello everyone, I'm Andrew. Ironically, I am an endoscopy nurse at a hospital and see, unfortunately, colon cancer quite a bit. I am 34, and wow was I shocked to receive this diagnosis. 

Last September, I had a few weeks of not feeling well. Eventually I developed RLQ pain, and after a few days had a CT (helps having a bunch of friends as GI docs, they all were helpful!). I was not too surprised for it to reveal appendicitis, but it had ruptured. Luckily, it was contained (phlegmon), and I didn't need surgery. Never had an elevated WBC so didnt suspect appendicitis until the pain started. Anyway, fast forward, after a follow up CT looked like it was resolving, to this spring when I had a colonoscopy. It was recommended by a surgeon friend (a small percentage of appendicits cases are related to carcinoid), and she saved my ***. A mass was found in the cecum, biopsies showed resolving appendicitis (9 months later?). A cecectomy was recommended, which the surgeon said afterward did not look like cancer. Well, it was. Mucinous adenocarcinoma, T3 lesion. I then had a follow up R Hemi, and am 3 weeks post op. I'm back at work, albeit not 100%, but start chemo in a few weeks.

 

Chemo was recommended due to it being a mucinous CA, as well as the inability of pathology to determine its site of genesis (appendix or cecum) as well as a perforation. A CT showed no mets, but I had an elevated CA125 (can indicate peritoneal dissemination), as well as an elevated liver enzyme. There were fortunately no nodes positive, but all the above leaves me in a weird gray area.

 

Has anyone here had mucinous CA, and after treatment, did you have a recurrence? I'm having follow ups to the labs, as they were mildly elevated, and hopefully they are false positives. 

I am obviously on the younger side, with two younger kids (7 and 4) and am curious what going through chemo will be like, especially its impact on my energy, both for work and home. Is there anything recommended you found helped with that?

 

It's been a very interesting experience being on the other side of the gourney (3 preps in 3 weeks, yuck!) but very valuable in my opinion. So much support from so many people, and I hope it all ends with complete cure. Thanks for reading the rambling story above. Any advice you could give yo live as ordinary a life as possible would be appreciated! 

 

Andrew

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Can you start again at the beginning and dumb it down for me? Ha ha. To be honest, I didn't understand some of what you described. And I don't know if mine was mucinous. Is that normally something they'd tell a patient? For all I know it was. I can't even remember what the letter(s) are after my stage. And I don;t want to ask because it'll send me running to see what it means on Dr Google even though I know the futility of that.

I was told that there was an oncologist at the cancer centre I go to that was diagnosed with colon cancer and had the surgery and just a few days after the surgery died of a blood clot, likely from it. I thought that was ironic. And sad.

Anyway, I hope you'll get some answers on here. Welcome to the forum.

Jan

EndoRN1985
Posts: 17
Joined: Jun 2019

Mucinous adenocarcinoma is a subtype of colon cancer that makes up about 10% of colon cancers, which are generally adenocarcinoma.  Your doctor would have referred to it as such, or another more rare type, signet ring. Anyway, I probably read 15 journals and studies on this, and it appeared that mucinous cancers are more likely to spread because they create a jelly like substance (the cancer arises from the mucin or mucous producing cells). The fact that I had a perforation increases the risk, so I was curious if people who had a similar pathology, had a recurrence. Specifically, things or symptoms I can watch for in the future. Thanks for welcoming me!

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

Sorry you have to be here but I'm not quite sure all the language you used.  I'm not able to help you, but if you could explain it a little better maybe I'll be able to help you better.   Wishing you the best.  Welcome to the board - you have found a great group.

Kim

EndoRN1985
Posts: 17
Joined: Jun 2019

Hey Kim, thank you. I elaborated a bit above, and was hoping for some advice on dealing with the effects of chemo, particularly maintaining an active lifestyle with my job and two kids. I'm used to working irregular hours from being on call, but I think this might be on another level entirely. Thanks for your response! 

 

Andrew

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

  I am not sure What chemo they will reccommend. When I was dxed with stage3c into six nodes they suggested that 5fu//leucovorin was the best bet. It nearly put me into renal failure due to dehydration. They then changed to 48 sessions of 5fu enhanced with levamisole.  Levamisole was banned in 2001 for fatal side effects. The only use for it now seems to be as a anti-parasitic in animals and by drug lords to cut cocaine. It treated me poorly but I still managed to work right thru chemo and live a life, if not totally normal. I was 48 at the time. I am now 69 , still cancer free and still working 4 days a week. I have found that there was a lot of collateral damage to me from chemo. It caused stage2 ckd with nephrotic syndrome symptoms. It is controlled well . I take cyclosporine twice a day. I have a lot of heart problems  ,mainly neurological with premature ectopics and atrial flutter//fib. I have severe peripheral neuropathy in both legs. I don't take anything for the neuropathy but I am on warfarin for my heart. I don't drink or smoke and I eat a boring diet of foods that I have found that do not compromise my health. Surviving survival is not easy but over 21 years of survival up , it beats the alternative. Best of luck, Ron.

EndoRN1985
Posts: 17
Joined: Jun 2019

Thanks for the reply. I will start Capox for 3 months. They did a study and found it was just as good doing it for 3 months as 6, so that's a step in the right direction for sure. Cuts down on all the nasty side effects (specifically permanent neuropathy) but not the benefit. I used to work as an infusion nurse also, and administered a lot of 5FU, and was glad to be given the option for Capox, because 5FU is 6 months of 46 hour infusions which would be a huge drag. But as you mentioned, all the risks are worth it since the outcome is better than the alternative! 

zx10guy
Posts: 199
Joined: Dec 2013

Hi Andrew.  Sorry you're here.  My advice.... While you have fellow colleagues that are providing valuable guidance and advice, I would immediately consult with a major cancer center.  What concerns me is the location of your tumor, the mucinous nature of it, and finally the fact you had a ruptured appendix.  My worry is that the cause of the appendix rupture is due to a tumor within the appendix which would move you into an even more rare category of appendicial cancer.  Did the surgeon take any samples of the area around the appendix rupture for pathology?

Appendicial cancer is no joke and requires specific expertise.  There are two people I know of who have appendicial cancer on this board:  Abrub and me.  My situation was a lucky circumstance because of my elevated CEA level causing a search for the cause.  The polyp in my appendix was found by chance during a colonoscopy.  I'm also in the very rare category of having colon cancer prior to having appendicial cancer.

I would also suggest you join Colontown on Facebook.  Lots of resources there.

EndoRN1985
Posts: 17
Joined: Jun 2019

I have been prescribed Capox, for 3 months. When I had my appendicitis with rupture, my appendix completely exploded; there was nothing left. I cant believe I worked for a couple days after it ruptured, I didn't feel too bad. They did a thorough look during my colectomy and saw no evidence of other tumor bulk anywhere, but did not take any biopsies of peritoneum. My presentation is one for the books, for sure. I'm actually looking forward to chemo. There are so many unusual factors in my situation, I want to be as aggressive as possible to avoid any risk of recurrence, since muscinous cancer is at higher risk of just that. Thanks for the info of the Facebook group, I will check it out!

 

Andrew

zx10guy
Posts: 199
Joined: Dec 2013

Here's the link to request Colontown membership:

https://colontown.org/colontown-intake-form/

Since you were an infusion nurse before, you probably already know about the hand foot syndrome for Xeloda.  I'd still get a second opinion from a major cancer center about your situation.  I can't but wonder if the cancer found in your cecum is actually a local metastasis of an appendicial primary.  It's a shame no biopsies were performed of the surrounding tissue near the ruptured appendix.  My GI doc told me his Anesthesia doc went in for what they thought was appendicitis and found out he was actuall Stage 3 appendicial cancer.  With how unique your situation is, I wouldn't mess around and get as many expert eyes on your case as possible.

EndoRN1985
Posts: 17
Joined: Jun 2019

Interestingly, I went to a major cancer center for my first opinion, and the MD there felt we could just observe. I did not feel at all comfortable with that, so he suggested Xeloda. I went for a second opinion at my local cancer center, who agreed with my opinion to treat more aggressively with Capox. I will look more into treatments for appendiceal cancer, thanks for suggesting that, as well as the FB group. What helped you with hand/foot? I heard biotin mouth wash helped with mouth sores, so will get some of that.

 

Andrew

zx10guy
Posts: 199
Joined: Dec 2013

Which cancer center?

I didn't have to deal with hand foot syndrome.  I did FOLFOX6.  So had the 46 hours of 5FU via pump and a bolus shot initially before the infusion of Oxali. There is some creme I've seen talked about which helped some.  I just can't remember now.  But if no one chimes in here you'll certainly get an answer on Colontown.  And I did hear Biotin helpe with the mouth sores.

EndoRN1985
Posts: 17
Joined: Jun 2019

I went to Virginia Mason in Seattle. I'm glad I dont have to do the 46 hr infusion. That would be really tough to deal with, especially with little kids and my job. Thanks for your help!

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

Andrew

Had a similar situation. Right hemi, tumor, spread to one lymph node. T3 N1 M0.

Surgery went well. We too, researched chemo drugs, Folfox infusion versus Capeox. The IDEA study confirmed, 3 months versus 6 months was about a 2.5% difference. We consulted our oncologist about trying the Capeox instead of Folfox infusion. They were slighlty resistant, in that most people in our country do not do well with Capeox due to dietary. EU seems to do well with Capeox because of low levels of Folate. 

We started with 2000 mg morning and 2000 evening. I didnt have any feet or hand issues, did have cold sensitvity, and skin irritaiton, but no mouth sores, no sickness. I did have issues with my lungs feeling on fire if I exerted myself. This sysmtom is very unique and may be due to my acid reflux. My dose was reduced to 1500 morning and 2000 evening, 12.5% reduction. This helped dramatically with the lung issues. i will begin my fourth session in a week, concluding my 3 month therapy. My Dr. would like to see 6 months due to my cancer cell is an aggressive cell. Again this would only be about a 2.5% edge. The Capeox has been very easy for me, so I will probably continue my sessions after the 3 months, as long as the side effects are tolerable.   No diarhea, nausea or anything.   I was advised not to take B9 supplements (folate)with Capeox.   Siteman (Barnes Jewish Hospital) in St. Louis Mo is my hospital. 

Hope this helps and hope your experience with Capeox is as easy as mine.  

Alan

573-434-9653 if you want to visit

EndoRN1985
Posts: 17
Joined: Jun 2019

This is great to hear,  sounds like we have almost identical presentations. I appreciate your information, sounds like it won't be as bad as what I've heard, mostly horror stories. Let's keep in touch and see how it goes both during and after treatment!

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

My next appointment is 6/18. Are they proposing you also recieve Oxaliplatin?

EndoRN1985
Posts: 17
Joined: Jun 2019

Yeah, that is the plan. I am waiting to hear back from one oncologist if they will add anything with the assumption it started as appendiceal. 

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

One more quick note to hopefully help you through your treatment. We went into treatment anticipating horror stories, but all in all, it hasn't been that bad. We walk every day, go to dinner occasionally, (don't get around sickness, could delay your treamtment), work in the yard everyday, take rides in the jeep, pretty normal life.  

If your treatment plan is similar to mine, it will be two weeks on and one week off. The advantage of this plan is you will only have 4 sessions (treatments) if you are only doing 3 months, as well as the one week off during each session, is great. I wanted to add, CapeOx is elimanted 97%+- through your urine, so drink a lot of fluid. Also, take the pill with your dinner and breakfast, and not on an empty stomach.

I should mention the Oxaliplatin is a little different. Because you are on a 3 week treamtment, the dosage of OX is higher than the 2 week treatment plan. Approximately 50% higher. For me 130mg vs 85 mg (times Body Mass). Placing the infusion apparatus in your port at time of treatment is nothing. A shot in your shoulder, stings more than you will feel from placement. Kick back for a couple hours, read a book or sleep. Nothing to it at all. Oxaliplatin seems to wear off after approx. 7 days from infusion. i have a few issues from the drug, and will probably discontinue. (ox only adds approx 8-12% edge)Typically day 3-5 makes me extremely tired and i have to lay down during the day and rest. Good movie or book time. Also have some foot and hand numbness. Sleep when you feel like it, so your body can recover. The drug also causes my jaw to cramp when I first bite down on food, and skin irritation. Non of the symptoms are terrible, just annoying. If you can walk every day, and get your heart rate up, seems to help keep the devil at bay. Again, the drug pretty much wears off after day 7, however, each session seems to be a little more acute in regard to the symptoms. 

Okay, hope you do well. Don't stress about treatment. The Dr's seem to have it down. Don't be shy about telling your Dr. to adjust your dose amount down. Makes a huge difference. 

Alan

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

Mucinous Adenocarcinoma of the appendix, dx'd 2007.  My appendix had ruptured and completely re-healed, but cancer cells escaped.  You might want to have your pathology re-checked or consider seeing an appendix cancer specialist - few and far between.  Colorectal surgeons seem to take this for their own, but it is not treated the same as colon cancer.

I had surgery, intraperitoneal chemo, and Folfox plus avastin.  Yes, I've had recurrences, but am able to live a normal life.

Alice

EndoRN1985
Posts: 17
Joined: Jun 2019

Hey Alice, thanks for responding. I actually spoke with the pathologist today, as we were in a procedure together at work. She feels pretty confident it began as appendiceal CA, and spread to the colon from there. I appreciated your response, because that encouraged me to talk to her. I since have a call out to Swedish hospital in seattle (only one locally that does HIPEC), as well as my local oncologist to see what the options are. Pretty fluid situation. They called mine stage 2 (no nodes) but with the rupture, high risk. What stage was yours at diagnosis? I'm slightly concerned about the CA 125 elevation; was that monitored in you? Thanks again!

 

Andrew

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I've been dealing with more issues of my own.  I'm stage 4, but I've been living a healthy, normal life for the most part since diagnosis in 2007 (and with the exception of a couple of recurrences.) My appendix had ruptured, and spewed cancer around, but then it re-healed.  I have no lymph node involvement.My cancer markers (CEA and CA125) have all been within normal limits.

If this originated in the appendix, you absolutely want to get with an appendix specialist.  I've heard mixed reviews about Dr. Mann in Seattle.  The Seattle people I know have traveled to Dr. Sardi and Sugarbaker on the east coast.  I go to Dr. Paty at Memorial Sloan Kettering in NYC, tho their newer appendix specialist (he's been there 10 years now) is Dr. Garrett Nash.  (I know Swedish Hospital - my grandson was born there!  My kids live in Seattle.  I'm on the east coast.)

Feel free to private message me.  I will share my email with you, if you'd like.

I haven't been on this forum much lately, but am notified if there is a PM.  (I have a breast biopsy tomorrow - something is off in my mammo.)

Alice

EndoRN1985
Posts: 17
Joined: Jun 2019

Thank you Alice. I am stage 2, but I have concerns another shoe is going to drop. Every step of the way has had encouraging news, followed by just the opposite. The problem I have encountered is there is no way to know for sure where the genesis was. At this point, I'm just looking forward to chemo starting to hopefully stop anything in its tracks, if there. I unfortunately had a wound dehiscence and have had trouble with it closing, so I just hope we don't have to delay it any further. 

 

Did they find mets right away, or was it detected later? My appendiceal rupture was about 9 months prior to cancer being diagnosed after surgery (the colon biopsies just showed inflammation) I did have an elevated ALT and CA 125, but won't have those rechecked for several weeks. Thanks again!

 

Andrew

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

the mets were found first.  The tumor encompassing my ovary was found to have originated in the appendix, so they took my (healthy looking) appendix out. It was filled with tumor.  There ware also spots of cancer on my omentum and the outside of both my sigmoid colon and right colon, so I was reseceted in several places.  I do eat and function normally.  We don't know when my appendix ruptured, as it was fully healed at the time of my discovery surgery.

 

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

The systemic chemo given is the same as for colon cancer - Folfox or Capox.  I had mine after my debulking surgery and intraperitoneal chemo (with FUDR, a metabolite of 5FU).  I didn't have HIPEC, I had EPIC

Butt's picture
Butt
Posts: 299
Joined: May 2018

i know a great Doc in FL who does HIPEC.

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