Never thought I'd have colon cancer

As Trubrit said, it is a good place to be, though the reasons stink.

I got lucky in terms of being diagnosed, I was basically asymptomatic and a scan for something unrelated just happened to catch something to be inverstigated.  And it was at that point when I started to feel something (abdominal pain) whereas prior to that there was nothing of real concern for the most part.  

All the feelings are part of this new game and try not to let it get you too much.  You know the stages of grieving - denial, anger, bargaining, depression, acceptance.  And the cancer ride is that.  For a bunch of reasons I skipped some of those and got to acceptance (though denial comes up with "Huh, seriously I cannot believe this" from time-to-time still even though I just finsihed cheo )   Times have changed and more and more cancer is considered a chronic disease as compared to what it once was.  

I had a pretty large tumor, went through to the abdominal wall and was in 11 lymph nodes.  So not a great scene, but my oncologist said even if it is somewhere else (some blips), he thinks I still am in good shape due to my overall health and said my attitude/positive helps.  Tried to stay as "normal" as possible which includes bad jokes for the doctors, nurses and staff.  Not to say there are not some "bummer" moments, but moving off them helps.  Do the things you like, take time for little things you like (small walk, grabbing a coffee or something) etc.

Hang out here for questions, concerns, fears and laughs also.  There is something about going through these things with someone who is part of the "C" Club (whether people you know and speak to in real life, or on this board) that is very helpful.   There is an ease/freedom of talking because they "get it" on a different level.  As an aside, I have been a volunteer EMT pushing 15 years now.  Being part of the C Club adds to the ability to talk to patients going through cancer, both in ease of discussing and reception from one of the club. 

Hang in there. The first part of getting the ducks in a row to proceed is one of the toughest things, at least for me.  Wanted to get the show on the road and be done with it.  

We have insisted/persisted on better care, steps beyond mere "standard" guidelines, especially during the early period, diagnosis to surgery, to deal with what was really a hopeless situation by normal medical lights (e.g. peritoneal implant, distant node cluster).    

Two crucial steps were: better testing with common technologies, including better baseline bloodwork; and, neoadjuvant treatment without toxicity on a molecular and immunological basis with supplements and generic, off label drugs.  We moved with alacrity to start immediately after dx, and had big payoffs, killing much cancer and fast, uncomplicated recovery.

This bloodwork is what we do for ourselves, oncs and insurance be damned:  tests listed,  basics,  surveillence blood tests  My wife has done much, much better than they all expected for any treatment.  Extra blood data has enabled us to get earlier information with improved treatments and feedback control.

We heavily adopted outside protocols and several technologies for mildest, cheapest treatments, and focused on the antimetastatic and antiangiogenic aspects.  A presurgical suite of immune boosting and supernutrition adjuncts improved the situation, see these LEF articles on cancer surgery, supplements and tx, and colon cancer.     Cimetidine and celecoxib are notable off label treatments that we have carefully integrated into treatment, cimetidine from the very start for presurgery, and then, as a targeted therapy as indicated by biomarkers.

We looked hard to find doctors and consultants that improved our cumulative knowledge and better executed on specific tasks, rather than be dominated by one doctor or opinion. 

Nurse with colon cancer said:

Colon cancer

Thank you tansaafi. I plan on obtaining as much education as possible and I will not allow my treatment and prognosis to be dictated by one individual. I have 2 kids and I plan on staying around so that I can some day see my grand babies

I would like to offer my support in your struggle as well. Until you have a complete diagnosis and getting these biopsies done make sure you take 400mg Cimetidine twice a day. Also two weeks before and at least two weeks after the surgery. Many say that it may prevent the spread of cancer. 

Let us know the plan of treatment.

Laz

Wecome to the blog, sorry you need to be here, but this is a useful place to be and to share. I was 49 when diagnosed with a similar mass in my sigmoid section. A little bit of bleeding and some strange tissue shedding out into the bowl were the only signs I had. Three weeks after the initial, They did the colectomy and took out the tumor. No complications, but the pathology showed 2 of 15 nodes involved. 3 1/2 months out I did the chemo Folfox. I had minor neuropathy in the hands and feet, couldn't drink cold drinks and was sensitive to cold and hot weather, but I worked through it[ I'm a contractor]. Each step was scary and I was grateful to have my wife there for me. I got a prescription for Xanax and it definitely helped during appointments and procedures, and times when it just felt overwhelming. Twice at about two 1/2 year intervals after the colectomy they found and removed mets in my liver, first three then one, which was a year ago Sep. The point of all this is to tell you that I came from a very similar start and over eight years later I'm NED and functioning much the same as ever. You have every reason to believe in a good result and a bright future. Some of the folks here have amazing stories of perserverance with much tougher diagnoses, so have a little faith and take things one day at a time, and you'll get through it.......Dave 

tanstaafl said:

starting (much) better

We have insisted/persisted on better care, steps beyond mere "standard" guidelines, especially during the early period, diagnosis to surgery, to deal with what was really a hopeless situation by normal medical lights (e.g. peritoneal implant, distant node cluster).    

Two crucial steps were: better testing with common technologies, including better baseline bloodwork; and, neoadjuvant treatment without toxicity on a molecular and immunological basis with supplements and generic, off label drugs.  We moved with alacrity to start immediately after dx, and had big payoffs, killing much cancer and fast, uncomplicated recovery.

This bloodwork is what we do for ourselves, oncs and insurance be damned:  tests listed,  basics,  surveillence blood tests  My wife has done much, much better than they all expected for any treatment.  Extra blood data has enabled us to get earlier information with improved treatments and feedback control.

We heavily adopted outside protocols and several technologies for mildest, cheapest treatments, and focused on the antimetastatic and antiangiogenic aspects.  A presurgical suite of immune boosting and supernutrition adjuncts improved the situation, see these LEF articles on cancer surgery, supplements and tx, and colon cancer.     Cimetidine and celecoxib are notable off label treatments that we have carefully integrated into treatment, cimetidine from the very start for presurgery, and then, as a targeted therapy as indicated by biomarkers.

We looked hard to find doctors and consultants that improved our cumulative knowledge and better executed on specific tasks, rather than be dominated by one doctor or opinion. 

 

 

Ahhh! you are making me feel like I'm not doing enough. I have stage IIIc, had bowel resection emergently due to small bowel obstruction, and am now doing standard modified Folfox 6.  I have a local onc and have seen someone at MD Anderson.  They agree with my standard approach.  My baseline bloodwork included a CEA which was negative so I don't have a marker.

Is there a post here I can read where you have discussed what you have learned and what you are doing?

Everyone's situation is extremely different, but I'd love to learn!

Summer 

NEDbound said:

tanstaafl

Ahhh! you are making me feel like I'm not doing enough. I have stage IIIc, had bowel resection emergently due to small bowel obstruction, and am now doing standard modified Folfox 6.  I have a local onc and have seen someone at MD Anderson.  They agree with my standard approach.  My baseline bloodwork included a CEA which was negative so I don't have a marker.

Is there a post here I can read where you have discussed what you have learned and what you are doing?

Everyone's situation is extremely different, but I'd love to learn!

Summer 

What am I doing? collecting data, observing, reading and shopping. 

I find education is very interactive with various data.  Getting extra blood data, as a frequent series and organizing the blood data on a spreadsheet should be a priority.   A lot of blood work is topsy turvy during heavy chemo, "standard" chemo, but collecting the data series is important for maximally effective vigilance during the first months and years after chemo.   Due to various communications breakdowns, it took well over a year to get closer to the "true initial diagnosis" and we would have been catastrophically blindsided several times without the "extra" data.  

Positive CA19-9 can still be identified by stained slides from the fixed pathology specimens if you want to justify adding CA19-9 into your bloodwork, for the doctor and insurance as medically necessary without CEA likely being effective. The extra biomarkers like CA19-9, AFP, LDH, GGT, quant D-dimer, can help minimize surprises but the medical profession doesn't want the bother and expense of complex analyses of uncertain situations. Although insurance will probably cite expense and technical uncertainties, the primary thing that would be certain (and expensive) would be failure.  Really blood panels and markers should include ESR and hsCRP for quality control and rough adjustments due to changing inflammation levels.  

As for my wife, timeline, personalized integrated. treatments including IV vitamin C. 

I am also a nurse who was diagnosed at age 46 with stage 3 rectal cancer.  It rocked my world. My kids were 14, 17 and 21.  It was 2003.  Two of my kids are now married and I have 4 beautiful grandkids. My goal in 2003 was to get my youngest through high school,  He is now 27.  My husband was also wonderful through it all. There were some bumps in the road and many rough days in the beginning.  I have had 3 surgeries, chemo/radiation, 13 hospitalizations. I was able to work full time through my chemo and radiation.  Hang in there, pick doctors you are comfortable with.  You will get through this.  Any questions for me just ask.    Maureem