2013: Survivor stories

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GreenLakeGirl
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Location: Pacific NW

2013: Survivor stories

Postby GreenLakeGirl » Fri Mar 01, 2013 3:01 pm

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Happy Dress in Blue Day! What a lovely Friday to kick off Colorectal Cancer Awareness Month!

We've talked about having a thread to share with new members that would include our stories of life after a colorectal cancer diagnosis. Whatever your stage of cancer, your current status (newly diagnosed, currently in treatment, done with treatment, in remission, NED, maintenance chemo, living with stage IV cancer), and your current posting level within the Colon Club, I hope you'll add your story!

If you have friends who have moved on from the Colon Club, please encourage them to return and post their stories! I hope we can continue to create a thread like this on future Dress in Blue days to start Colorectal Cancer Awareness month, so if you "graduate" from the club, please come back in future Marches to add your story for any new visitors.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

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GreenLakeGirl
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Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: 2013: Survivor stories

Postby GreenLakeGirl » Fri Mar 01, 2013 3:10 pm

My story: I'm a three-year survivor of stage III colon cancer. I have a scan next month to see if I'm still all clear, and if I am, my oncologist will set me loose. No more CTs!

I was diagnosed after twelve years of Ulcerative Colitis because of a routine scan that GIs recommend for patients who have had IBD for at least ten years. The hardest parts for me were going through chemo with a 2-1/2 year old at home, followed by multiple surgeries because of an abscess that lingered for four months. I had a VATS lung surgery because of a lung scare, but the necrotic tissue they removed wasn't cancerous (although they still don't know why I had seven spots in my lungs.) I spent the entire first two years planning for a surgery, going through chemo, or recovering from some hospital stay.

I joke that I was the healthiest sick person you would have ever seen when I was diagnosed at 37. Three years later, I'm still dealing with a lot of fatigue, but I walk 3-4 miles each day, and I'm so excited to have seen my daughter start her first day of kindergarten last fall.

I'd love to see more stories here, so please add yours!
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

debzak
Posts: 424
Joined: Tue Oct 02, 2012 2:58 pm

Re: 2013: Survivor stories

Postby debzak » Fri Mar 01, 2013 3:33 pm

I was diagnosed last year on february 27th, 2012. I was staged with stage III rectal cancer. My symptoms had become part of life...more bowel movements, urgency, a little blood...I decided to see a GI and I had a colonoscopy. I have completed 8 rounds of chemo, 28 days of chemo/radiation, an 11 hour surgery, 9 days in the hospital and now a little extra chemo (in pill form) for good measure :) I have a tempory ileostomy and hope to have a reversal surgery in July.

I guess I can call myself "cancer free" following my surgery. Physically, for me the hardest part was the surgery. But in reality the hardest part is dealing with all of the emotios. The fear, the guilt for putting my family through this, the events I missed because I was too tired (or literaly couldn't sit long enough to go to something).

But, here I am, a year later. I actually feel good for the most part, even when I am on the Xeloda. Every once in a while I hear a song that makes me think about my own mortality and I start to cry...or I write a post like this....and it brings back all of the fears.

I try to tell others go get colonscopies, but I don't know if anyone is listening...but I will be making sure that my kids get tested early, so that they don't have to go through this experience.

much luv
Debbi
2/27/12 dx rectal cancer (stage III)
3/6/12 44th B-day
3/19/12 Oxi & 5-FU (8 rounds)
7/9/12 chemo-rad
11/5/12 LAR surgery temp ileo
1/20/13 4 rounds Xeloda
5/13 multiple liver mets
6/4/13 HAI pump at Sloan
KRAS wild & BRAF mutation found :(

alphagam
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Joined: Tue Jun 14, 2011 10:48 am
Facebook Username: Kathy Maine Ruess

Re: 2013: Survivor stories

Postby alphagam » Fri Mar 01, 2013 3:49 pm

In February of 2011 I finally gave in and had a colonoscopy at age 56. I'd had symptoms for years, but was so afraid of the procedure after my husband had a bad experience. Well, I woke up to be told that there was a mass very low in my rectum. The next month was a blur of scans and tests. A rectal ultrasound showed a T3 tumor. It was recommended to have Chemo/rad, rest, APR surgery and more chemo. My husband and I decided to go for a second opinion. The colorectal surgeon we chose told us that we needed pathology first. He did a transanal excision of the tumor and I was Staged as a Stage 0, no further treatment necessary. Today, I went in for a 2 year follow up (last year's colonoscopy, biopsy and PET were clear). Today, he said my rents were perfect, no biopsy or PET needed. I really like the word perfect!
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

d-it-up
Posts: 56
Joined: Thu Dec 22, 2011 5:10 pm
Location: Seattle, WA

Re: 2013: Survivor stories

Postby d-it-up » Fri Mar 01, 2013 4:09 pm

Today is National Dress in Blue Day, and I kicked it off by having my one-year post surgery colonoscopy this morning. Clean as a whistle! No new polyps, nothing to worry about!

I was diagnosed on October 5, 2011 and went through about a year of treatment before I finally started calling myself a survivor. When I first embarked on my journey, I was scared, and thinking about the year ahead seemed so daunting. As I reflect back on it now, I realize how quickly time flies. Although surgery knocked me flat and I despised my illeostomy, overall, the experience wasn't nearly as bad as I had anticipated. I was able to work through all of my chemo and radiation, and just had to take 5 weeks off from work following my two surgeries.

To look at me while going through treatment, you never would have known I was sick (which was a blessing to me), and now if you saw me, you'd think I look healthier than ever.

I have some residual side effects that will likely last the rest of my life (early-onset menopause, neurothaphy), but today I hardly think about cancer anymore. And I have a new way of looking at life - now I eat healthy, exercise regularly, and make sure that I take time to enjoy life. My husband asked me what I wanted to do to celebrate that I survived cancer - did I want a new car? An exotic vacation? Nope - thanks to cancer, I now realize that it is the simple things in life that bring me the most joy - spending time with family and friends - so I threw a big party and brought everyone together to thank them for their love and support.

My advice to those who are newly diagnosed is to take a deep breath and try to relax! A positive attitude goes a long ways, so try to keep your chin up, and don't be afraid to reach out to people on this board if you need support.
Rectal Cancer Diagnosed 10/5/11 @ 38, 3T-0N-0M
Chemoradiation 10/31-12/8 (Xeloda)
Surgery 1/30/12 - 0/26 nodes
9 rounds of Oxi/5FU
Illeostomy reversal surgery 8/13/12
Declared NED!

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CRguy
Posts: 9592
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Re: 2013: Survivor stories

Postby CRguy » Fri Mar 01, 2013 4:25 pm

At age 55 nearly 7 years ago ...started having back door issues.

6 years ago : had first doctor's appointment which suggested a colonoscopy would be in order.
--->>> c-scope, blood tests, exams, CT scans, MRI, chemoradiation, surgery, ileostomy, more chemotherapy for Stage IIIc CRC.

5 years ago : ileostomy takedown, living the "new normal", clean follow up scans, blood tests, exams, .... => NED.
4 years ago : fall Xray showed lung met, missed in the spring, likely present from the start..... => Stage IVa CRC.
3 years ago : blood tests, exams, CT, PET, VATS surgery, Bard PowerPort, 12 cycles FOLFOX.... => NED again.
2 years ago : scans, bloods, exams ...... still NED.
1 year ago : scans, bloods, exams ...... still NED.
0 years ago : scans, bloods, exams, de-ported ...... still NED.

1 year moving forward : TBA ... but damned determined to be here to let you all know how it turns out....
"..but it is looking good so far" -Maverick, in Top Gun
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: 2013: Survivor stories

Postby Bev G » Fri Mar 01, 2013 4:27 pm

After delaying my colonoscopy for far too long, and being told that I had "just" IBS for a number of years, I finally had the colonoscopy in 12/09 and was diagnosed stage IVa. I had a colon resection the week after diagnosis, 3 rounds of FOLFIRI with "the worst side effects" my onc had ever seen (4 hospitalizations in 3 rounds) and a liver resection for a single tangerine size tumor in my posterior caudate lobe in 4/10. Due to healing difficulties I didn't get mop-up chemo (7 rounds of 5FU) until 7 months later.

I have not had any new cancer since diagnosis. I had my 15th negative PET/CT on Valentines Day, now I am on the six month plan. Virtually everything I know about how to cope with cancer, I learned here, much of it from the beloveds we have lost. I have read until I can't read anymore. My heart has been broken so often I can't believe it still beats in my chest. I often think my survival is in large measure due to my friends here, who have in many ways been the best support I've got. Day-to-day? One breath at a time. On my very first day of chemo I was in full bore panic mode. I was positive I wouldn't be able to get through the chemo room door. I asked my brother, my second biggest supporter, "how will I do it?" His response: "One foot in front of the other. That's what you do". Hmmm...he was right, and that's what I keep doing. I don't look back, I don't look forward...any more than I have to anyway.

Now my husband appears to be dying of stage IV lymphoma, and so it continues...

Never give up, never give up. If someday you decide you've had enough and you quit on your terms, that does not count as giving up! I hope and pray no one reading this will ever get to that point.

Love to all on the journey,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Guinevere
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Location: NE TX

Re: 2013: Survivor stories

Postby Guinevere » Fri Mar 01, 2013 4:29 pm

Wearing blue today even if no one sees me but the other folks who live here. :mrgreen: I'm wearing blue today to remind myself and others of those we've lost to this hateful disease like my maternal grandmother and to also remind people to get their chassis checked. No one needs to die from embarrassement!

Right after my 50th birthday, I thought I had really bad hemorrhoids and then started bleeding vaginally and was diagnosed with vaginitis and put on hormone cream. I rocked along in tremendous pain for about 4 months and then had a heart attack on Feb 2nd. I remember laying on the cot while they were prepping me for angioplasty thinking how my rear hurt much worse than my chest did.
After I came home from the hospital, I remembered that moment and decided to go to a new gynecologist. Well, he practically turned me upside down and discovered that I had a recto-vaginal fistula and there was a lot of infection. Back in the hospital I go for a week.
I had to wait 6 weeks after my heart attack to have a colonoscopy but, finally, got to have it done where they found the recto-vaginal fistula was actually colon cancer and they also found a rectal tumor.
I started on neoadjuvant Xeloda and radiation for 6 weeks. (I thought the Xeloda was going to kill me from poisoning and the radiaton was going to kill me from the tremendous rectal pain when the tissue on the tumor started sloughing off when I had a bm!) I had to wait 6 weeks for the radiation to finish doing its job (I called it "carry over cooking") and had an APR, proctocolectomy (which I called a rectumectomy before I knew what the official name for the procedure was), liver resection and ostomy placement. Thank God for epidurals!!
Six weeks later, I started my adjuvant chemo journey with Folfox/Avastin for 6 weeks and there was growth to the remaining tumor (which is in a place that can't be resectioned) and went on Xeliri until last June when the CT showed growth again and now I'm on Iritux but on a break from all chemo until at least March 26th.
Odd to say, I've had so many blessings during all of this with people praying for me, me making friends here as well as on the ostomy.org forum, seeing my son marry the love of his life, and seeing how God has provided for us even though I'm uninsured and my husband makes less than $35,000 a year - believe me, there's no government involved!

God bless ~
Guinevere
(Mighty Queen fighting the Beast!)
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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chp
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Location: Georgia

Re: 2013: Survivor stories

Postby chp » Fri Mar 01, 2013 7:09 pm

Wearing my blue check your : t shirt right now! Posted on face book last night and many of my friends wore blue today! My mom was diagnosed with colon cancer in May of 2012. Has had resection and chemo. Stage IIIb. Is currently NED. Her surgeon urged me to get a colonoscopy--I'd had one 8 years previously, so thought it wasn't time yet. Fortunately, i went ahead and had one. In sept of 2012, I was dx with colon cancer, had resection and dx stage IIa with signet ring cell. I am currently on xeloda. I will be forever grateful to that surgeon for urging me to have an early colonoscopy, and to this community for all the help and information I've received over the past few months!
Cathy
57 yr old female
Dx CC Sept 2012
Resection surgery Sept. 19, 2012
T3 N0 MX. Signet ring cell
Started Xeolda Nov 14
Tiny spots on lungs on 1yr scan. Watching

Surroundedbylove
Posts: 3118
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: 2013: Survivor stories

Postby Surroundedbylove » Fri Mar 01, 2013 7:13 pm

I was diagnosed in November 2008 so I'm just 10 months from the 5 year mark now. My oncologist will have me do one last (hopefully) scan in November. I've shared lots on information on the board about my takedown experience (search "takedown info" and you should find the detailed mini-blog/journal of my experiences including food and other information for adjusting.

See my signature for details of my treatment, etc. I was one of the rare ones that received both Xeloda and oxaliplatin during neoadjuvant treatment - a rare and aggressive treatment protocol but one that I'm happy to have had based on my prognostic factors. I don't come around much anymore - not because I don't care but because it has been part of my own healing as a survivor to try to move further away from cancer. That has been good mentally!

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

weisssoccermom
Posts: 5868
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: 2013: Survivor stories

Postby weisssoccermom » Fri Mar 01, 2013 9:27 pm

I had what I thought was constipation/digestive issues for a few years but my then GP didn't seem to think too much about it. My 'problems' were attributed to all sorts of things - most notably 'female issues'. My then GP left, I switched to my current GP and bam, all the difference in the world. I was sent, in June '06, to see a surgeon about having some possible hemorrhoids banded. Surgeon had a look, said they weren't hemorrhoids and scheduled me for a colonoscopy. The next few days were filled with anxiety after Dr. Googling too much :oops: I awoke from the colonoscopy in the procedure room and really pressed the GI doc for his opinion. Was told then and there that nope, the mass couldn't be removed during the scope and yep, he thought it was cancer. It seemed as though I was bombarded with tests...blood work, CT tests, rectal ultrasound, and some other tests that I chose to cancel and I was so mortified to be diagnosed with rectal cancer. I thought I was the ONLY person in the world with this problem. Port was put in, chemorad treatments started, port removed and meeting after meeting with 5 -6 different surgeons. I'd love to say this was an easy process for me but truly it wasn't - entirely due to the fact that I wanted to do things MY WAY. After some 'false' starts, an absolutely horrible reaction to oxi, a dozen or so blood clots in my right arm, 5 more months of Xeloda, more ultrasounds and more rejection, I FINALLY hit 'pay dirt' and found my fantastic surgeon and after too long of a wait, I had my transanal excision on 4/20/2007 - one day after my youngest turned 16. Pathology was perfect - no cancer cells. I've been released from my onc, still see my surgeon once a year, and have just recently stopped CEA testing. Next month will be 6 years since my surgery and in June, it will be 7 years from my dx.

My biggest thrills have been seeing my youngest graduate from high school three years after my dx (he will graduate from college in 10 weeks!!!), teaching him to drive and watching my oldest son get married four years ago. Along the way, I've seen my middle son move to Chicago and have been able to visit him there. I've been able to be an ardent Seattle Sounders fan and, at times, follow the team on the road and attend all home games. I've met some wonderful people on this board and am privileged to call some close friends and will always consider them and their families as special people in my life.

I have grown a lot in these past 7 years and from so many of you, I have learned about courage, tenacity and persistance that I did really believe existed except in made for TV movies. Thank you to all SURVIVORS on this board....each of us, from the day we are diagnosed becomes a survivor.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

tallyho
Posts: 138
Joined: Sun Aug 01, 2010 8:39 pm
Location: Florida

Re: 2013: Survivor stories

Postby tallyho » Fri Mar 01, 2013 11:31 pm

When I was 20 years old, I underwent a very thorough physical before being started on a new medication, and the doctor found traces of blood in my stool. He sent me to a GI specialist, who looked at me and said, "You're 20 years old. There is nothing wrong with you. I don't know why you got referred here in the first place." I went on my merry way.

Several years later, in 2007, I started grad school and also began having occasional dizzy spells, which I attributed to stress and too much caffeine, which is typical grad school life. I didn't think anything of it until I went to the doctor (the same one who sent me to a GI specialist back when I was 20) for a routine physical in 2010. He ordered bloodwork which revealed severe anemia, the cause of the dizziness. He demanded that I check myself into the hospital for a blood transfusion, which I did, and which was when I knew there was something really wrong.

From there, everything happened very quickly. Back to a different GI doctor, who ordered a colonoscopy. I had a tumor that he described as "huge" (13 cm) in my sigmoid colon, which had probably been there in one form or another since back when I was 20 and first having problems. Within a couple of weeks of my diagnosis, I found the Colon Club and heard from so many wonderful people (too many of whom have since passed away) who answered my questions and calmed my fears.

I had surgery and found out that I was stage I and would not require further treatment, but I've learned that cancer can be a mental battle as much as anything. I have an oncologist who I saw four times a year for the first two years, and now see twice yearly. I had a CT scan a year after diagnosis that revealed a suspicious spot, but a PET scan showed that it wasn't a malignancy, and then a clean CT scan a year later, so I no longer need scans. I have also had yearly colonoscopies since diagnosis, and the GI doctor continues to find polyps, but I do get three years before I have to have another one.

I thought I was really dealing with all of this well until I neared the two year anniversary of my diagnosis. Then, I realized that I had been overwhelming myself with busy work and really hadn't dealt with the fear and anxiety that the diagnosis caused me. I began to see a therapist last summer who has helped me immensely and I really feel like I'm in a good place now, both mentally and physically. I don't post here much but I read frequently and do chime in from time to time, especially when I see other stage I folks posting.
7/27/10 DX Stage I at age 30
9/3/10 sigmoid resection, 0/56 nodes +, no chemo
10/12 - CT - NED!

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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: 2013: Survivor stories

Postby dianetavegia » Sat Mar 02, 2013 8:12 am

Early winter, 2008, I began having some strange 'full' sensations in my abdomen. Lots of gas and horrible noises. We ate some greasy BBQ that tore my stomach up so I took Immodium to stop the diarrhea. From there on until my husband got me an emergency appointment on New Year's Eve, I spent most of the day on my tummy, trying to burp or pass gas. That appt. led to a colonoscopy on Jan. 2nd (right after my 58th birthday and no prior colonoscopy) where the gastro found a 2 cm tumor right in the area where all the gas pains had been. On Jan. 7th, I had 18 inches of my colon removed. Stage IIIB Colon Cancer with 5 out of 15 lymph nodes showing a 'few microscopic cancer cells'. I did 12 tx's of FOLFOX with permanent neuropathy.

I was all clear for 3 years but then in Feb. 2012, my CT scan showed a small 'something' on my liver. A PET scan showed the very center of the 1.5 cm tumor lighting up. April 15, 2012 I had a liver resection with 80% of my liver removed. No chemo was needed. Stage IVa, based on size of tumor, length of time until it developed, single solitary met, etc.

PET scans every four months since then have been clear. My next one is April 12th.

I won't consider myself a survivor until I've been cancer free for 5 years since the liver resection. Mentally, I don't know if I'll ever breathe easy again.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 6 months since my original dx and Six years post liver resection.
NED April 2018!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

annalexandria
Posts: 682
Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: 2013: Survivor stories

Postby annalexandria » Sat Mar 02, 2013 2:00 pm

Thanks to Greenlakegirl for giving me a little push to post here! I am very superstitious about calling myself a "survivor" just yet. I know there is a lot of debate about the meaning of this word in the world of crc, but for me personally I need to get a little farther down the road before I really feel like a survivor. But the reality is that I AM a survivor, at least for the moment. I've been close to being declared terminal on two occasions, but have managed to battle back and get to NED for the last 15 months. My story is in my signature, but basically I've had four recurrences, lots of surgery, and no chemo that worked. The path my cancer took has been very unusual. I have an extremely rare tumor type (a carcinosarcoma) that is much faster growing than the typical crc tumor type. My disease is metastatic, but it never spread to the liver or lungs, as crc normally does. Instead, I had a ton of spread throughout the intestines, a little in the rectum and some on the peritoneal wall. It was also in 5 nodes, but my first surgeon was a worst-case scenario kind of guy and in the interest of being thorough, he took out 38 nodes, which I think helped to stop the spread via the lymphs. I've had awesome surgeons, threw in some cimetidine the last surgery, and have had a healthy modicum of luck along the way. Having cancer has been a terrifying and devastating experience, especially for my family (my teenage daughters are just now starting to recover a little from all the trauma), but...here I am. Lots of side effects still from tx, but alive. I just read that the number of years required to qualify for a "cure" in crc has been downgraded from five years to three...not sure if this is true, but if it is, then maybe it puts me a little closer to feeling like I really am a "survivor". I think I need some kind of official proclamation to take on that mantle! Ann Alexandria
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: 2013: Survivor stories

Postby Lee » Sat Mar 02, 2013 3:12 pm

I am coming up on 9 yrs since diagnoses. I am currently NED today.

Back in 2003, I was experiencing hemerroids problems. Itching, burning and occasional bleeding. I happened to mention this to my PCP. He did a rectal exam and was able to see my hemerroids and confirmed they were the cause of my bleeding. Because I was getting blood work for other medical issues, he also included a few other tests that should have a red flag for colon cancer. They all came back either negative or normal including the testing of stool for blood. When all was said and done, he wrote a script for me to get a colonoscopy. Because of my rectal bleeding, this was a good excuse to get my baseline colonoscopy early in life. I was 46 yrs old. Said to schedule the appt today as it could take 3-6 mths before I see the Dr.

Yep, 3+ months later, I see the gastro Dr. We are not worried, my mother had a colonoscopy at age 55 and they did not find 1 polyp in her. But because of those nasty hemerroids, lets do a colonoscopy. They just got a cancellation and we could it in 2 weeks. I took it.

They found a mass, less than 2 cm, probably a stage 1. They would test it, but it was cancer. Surgery was certain, chemo was a maybe. Further testing would show, the mass was 8 X 11 cm outside my colon, 4 lymph nodes were positive for cancer (surgery would confirm 6). I'm now a stage III. Per my surgeon, she would be cutting me open as she was actively going to be looking for cancer spread that the CAT scan was unable to pick up. PET scans were not available.

I had chemo/radiation, then surgery, followed up with 6 mths of chemo. Due to the damage of radiation, 2/3 of my rectal muscles were destroyed and I was tied to the toilet anytime I ate. Because of this problem, I opted for a permanent colostomy. For me, it truly gave me my life back.

Back in 2004-2005, FOLFOX was a new chemo treatment and only available to stage IV people. My Onc was able to get me on board and I was her first patient. 3 months into my chemo regiment, FDA approved FOLFOX for those stage III folks, I was ahead of the schedule. I remember reading about a lot of people who were switching over mid way through their chemo treatments.

I've been NED ever since my surgery, August 2004. I look forward to my 10 yr anniversary next yr. But as my Onc told me last August (I see her once a yr now) I'm not out of the woods yet, I could still have a recurrence this far out. For that reason, I still need to be on top of this. If I have problems or unexplainable issues, I need to address it ASAP!!

I'm thankful to my PCP for referring me for that colonoscopy, I truly feel it saved my life. I'm thankful for my family and friends for being there and I'm thankful to my surgeon and Onc for going the extra mile for me.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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