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Never thought I'd have colon cancer

Nurse with colo...
Posts: 4
Joined: Oct 2015

Hi everyone

I am a 50 year old nurse and have just found out that I have colon cancer. Some of these posts feel all to familiar. I had my first colonoscopy cancer screening and a 50 mm mass was found in my sigmoid colon. It was biopsied and diagnosed as cancer. My doctor says 'Im hoping we caught it early' but I find it hard to believe that a mass that large has not spread. I'm going back and forth between feeling like I am going to die and just accepting it and moving on to do what I need to do. I return to the gastroenterologist in one week for tatooing and additional biopsies. He said that once we get those results we wiil develop a plan of treatment. I too ignored signs... blood in stool, severe lower abdominal pain that would sometimes occur before and during bowel movements. Prior to this diagnosis I had a GYN exam and she told me that my left ovary was enlaeged. I also had/have intermittent lef hip pain. So I have myself scared crazy. If anyone could share with me that would be great. Thanks for reading.

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

NOT!

Feelings of fear, regret, being overwhelmed, angry, and a whole bunch more, are natural feelings. Embrace them all, for a while, and you will know when it is time to move on. 

I didn't have my colonoscopy at 50 because I was scared of the IV. HA! Now look how many I have had over the years. I went through a period of 'Oh, what if...?' and then moved on. We can't change the past, and what is done is done. 

Being scared is definitely the first emotion most people experience at diagnosis. You're a nurse; and I'm sure you know the stats. They aren't pretty. Sometimes I think a bit of fear is good. It can motivate us to eat better and exercise, both of which will play a major roll in the Cancer journey. But alas, too much fear causes stress, and we've heard that Cancer feeds on stress, so as soon as you can, find a way that works for you in diminishing the fear and the stress. I found guided imargry and then meditation and yoga. Worked like a dream for me. We're all different though, and you need to find what works for you. 

So I welcome you to the forum. The forum nobody wants to be a part of. But now that you are here, you will find information and support from folks who are going through it themselves or with their loved ones. 

Good luck in the days and tests ahead. I presume they are going to start with Radiation, as you mentioned tattoos. I had radiation. My Rad Onc used stickers and not tattoos, which I liked. 

Sue - Trubrit

 

Nurse with colo...
Posts: 4
Joined: Oct 2015

Thank you so much for your encouraging and supportive words. One of my 'normal' stress reducers is running. Yesterday I had to abort my run because I started crying and began to hyperventilate. But I do understand what you are saying about cancer feeding off of  stress and I plan to start other means of strss reduction. Thank you so much for responding.

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

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.  

Nurse with colo...
Posts: 4
Joined: Oct 2015

I am glad that I found this site. I need the support from people who are sharing this crappy experience. My husband is extremely supportive and encourages me to vent to him whenever I need to.  Funny though...my husband said 'you're not sick and you don'y look sick and you take care of yourself so Im not sure why this is happening'. I think hr's in a bit of denial like me. Thanx 'NewHere'

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

Not quite in the ha ha way, but "you don'y look sick " line is something I have gotten often.  I have not told many people about what I am going through.  Some family, who had not seen me since it started and I got together for a family thing, and they are all relieved on how well I looked and was like 6 or 7 sessions into chemo.  Someone else who I was working with on something (did not know me before) figured it out.  (Think they may have heard me mention it to someone else?) But they said I did not look sick or act like it.  (They should have caught me in some of the bad moments ;) )   

Basically I did my best to get past things.   There were days where it hit me physically, a day or so after certain disconnects I just slept.  But I would often grab naps and was good to go for a few hours.  Sometimes my wife says that people are almost ignoring me being sick to the extent the are asking me to do things to the point of almost imposition.  Tells me I need to play the C Card once in awhile :)

Hang in there.  A lot of the anticipation/fear is worse than the actual.  Not saying that it is easy, but once things get going...  

Come back for more tips and so on.  There is absolutely no doubt in my mind that the tips, suggestions, encouragement and the rest from this board made it easier, including helping me get out of the hospital pretty quickly after the surgery.  In fact within a day my EMT instincts kicked in, in the hopsital, and I was helping other patients and passing on tips from here.  

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

Immedietly before I was diagnosed and later, when I was diagnosed with spread to the liver, I was glowing with health. I'd post a picture just to prove it, but I'm too shy (  HA!). My rosy (English) cheeks and bright eyes, belied what was going on inside of me. 

Now that I am 18 months NED, people think it is all over, and I am Cancer free. Tomorrow a scan could prove them wrong. You just can't tell from the way you look or feel, which is why they call it 'The Silent Killer'. 

But I am happy to hear that you look well, and even feel well, because I think that just has to be a bonus, especially as you move into surgery and treatment. The healthier you feel now, you have a fighting chance of tolerating the treatment. 

Sue - Trubrit

 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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 surgerysupplements 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 colo...
Posts: 4
Joined: Oct 2015

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

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

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

NEDbound
Posts: 54
Joined: Sep 2015

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 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

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 

NEDbound
Posts: 54
Joined: Sep 2015

I am newly diagnosed (end of august).  I had a small bowel obstruction when I was diagnosed.  I had mass in the cecum.  I had surgery end of August, a recovery period, and am now doing chemo. I just did my second round. 

I am 39 and have two 3 yo daughers. I am still up to my eyeballs in denial. I am sort of hoping that I can stay there to some degree.  If I can finish my chemo and stay stage IIIc and NED, then I am not sure I'll ever deal with the emotions fully.  That's the honest truth. I am working and living and trying to be "normal."

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

People who have larger masses than that pull thru and live a normal life, my Dear Friend .   SOmehow we think of Doctors and Nurses being impervious to such life threatening diseases.  My own Cancer DOctor has severe high blood pressure for instance and hes only in his late 40's .  We seem to think that such Professionals are larger than life to us and they are somehow exempt from it all.  They arent.   The good news is  there are now very sucessful chemo drugs out there and have a proven track record . Im on FolFox 5 and my Doctor is surprised at the progress im making now on my 10th out of 12 treatments. I wish the same for you too.  Above all, i would draw as close as you can to God and lean heavily on his power, will, and strength because you need much more beyond what you can muster up.   I truly wish you well in your fight, and fight it you must without giving up hope.  Dave

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

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

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