Stage IV Colon Cancer (24 years old) - My Story..

[Lynsay8301]

Hello Everyone! I am new to the Colon Club, I have been reading some of the posts over the past few months. Each and every one of you amaze me!! I will keep and continue to keep all of you in my thoughts and prayers..

Here is my story..

My name is Lynsay, I am 24 years old.

It all started when I was having horrible stomach problems back in 2005. I was into my doctor at least once a week. I was misdiagnosed many times (lactose intolerant, allergic to grains, bad diet, acid reflex.. just to name a few). Finally during a bowl prep I was taken to the ER. I ended up having ER Colon Resection done in February 2006 (at 23 years old). They removed 3/4 of my colon, a softball sized tumor, and 21 nodes. It came back being cancerous (Stage III - Colon Cancer). Many questions were asked by the doctors (because of my age and my otherwise being a very healthy young women). My oncologist recomended chemotherapy. I went through six months of the FOLFOX regiment, with what seems to have been ALL of the possible side effects.

After six months of chemotherapy, I was ready to get on with my life. So, I had my PET/CT scan done. Something was showing up. My oncologist told me to wait a few more months (maybe the chemo was still in my stomach). So I waited and did another PET/CT scan, this still showed something. I was in prep to have another surgery, but they wanted me to get a colonoscopy first. During the colonoscopy they took a biopsy (which came back benign). So they canceled surgery. I was so excited.. I could finally have my life back. I went back to work, I started working out again, I made lots and lots of plans for the future.

Everything was going great. I had a clean PET/CT scan done the day after Thanksgiving (I should have been shopping). Then I started having horrible stomach pains again, except these were different. I thought, oh, I am just making things up.. I just had a clean scan. One night it got so bad that I had to go into the ER. They took my history and they got worried. They did am xray and found a large mass in my pelvic area, so they did a CT scan. After that they new there was something there. So, I got admitted into the hospital. The next morning I met with my surgeon and he suggested that I go to a different hospital. I live in MN, so they sent me up to The University of Minnesota, Fairview. I was admitted for a week, had pretty much every scan and test imaginable done and then checked over by almost everyone in the whole hospital. I was then released but had a scheduled surgery. The next week I went in for surgery. I had surgery the beginning of February 2007 (only two months after my clean scan). They found a cantaloupe sized mass on my ovary. The removed the mass and one of my ovaries. The mass came back cancerous. They are calling it a recurrence of Colon Cancer. So now I am 24 years old with Stage IV Colon Cancer.

One week later I went in for a type of chemotherapy called "shake and bake". This is where they laporscopically insert chemotherapy into your stomach, heat it up, and then shake your for about an hour. They believed I was the perfect candidate for this procedure.

It has been one month since my chemotherapy treatment. I have been to many different world known doctors (including the Mayo Clinic and the U of M) to try to come up with a game plan. All of the doctors say that I have an 85% chance of this coming back. They recommend me not doing chemotherapy at this time. But they would like me to continue getting CT scans every month.

I had a CT Scan that came back normal today!! YIPPIE!!! My oncologist was very excited (as was I)! So, as of now, I am not going to be getting any further chemotherapy, and I will just have to wait for the next scan.

I am having a very hard time dealing with everything this time around. It was so easy last time because they had a plan for me.. they don't now, so I don't know what to do or even think!

Thank you for taking time to read my story. Please feel free to contact me. I would really appreciate anyone's thoughts, advise, and stories.

With lots of thoughts and prayers,
Lynsay

[missjv]

hi,
wow you have been through quite alot, and so young. stage 4 is a scary place to be i was diagnosed june 06 at age 39 with mets to liver. i went through the chemo, liver surgery and now more chemo until june, had 3 month post surgery scan and i was all clear i have new liver growth but no visible cancer so im excited. as far as recurrance goes yes it is a risk but you have to try to move on and live life and try not to worry about it. i was so scared and confused and depressed after surgery i thought how long will i last until the crap comes back. well i decided i had to snap out of it and live my life as i was doing before diagnosis of course things are different like chemo everyother week and recovery from liver surgery takes a while as far as being able to lift heavy things and do some work that i used to do. i was in the process of building a new home i had been waiting to build for years i canceled that on diagnosis cause i wasn't sure of my future but now that is back on and a trip to alaska in summer 2008 is also back on becuase i thought heck none of us knows when our time will be up anyways i could get run over by a big truck tommorrow none of us know how long we are here for so why should i let this cancer control my life, i got chemo, surgery, and more chemo i am doing everything that can possibly be done as far as treatments and im not going to let fear of recurrance rule me because there is nothing i can do about it anyways it is what it is of course im happy about 3 month clean scan and hope the 6 month scan will be the same im sure as time gets closer for that i will be nervous but what can i do? good luck hope everything goes well for you.

missjv

[brittneykay]

Sounds like you have been through a lot in the last year.

It also sounds like we kind of have similar situations. I was diagnosed last january with stage iv colon at 23 years old. I had surgery to remove part of the colon, both ovaries, and a spot on the liver. I then underwent almost a year of chemo. I had a CT scan in December 2006 that was clear. However, in February I started to notice bleeding and was diagnosed with a reoccurence in the colon.

I just spent several weeks at Mayo Clinic seeing and visiting doctors. I was just curious as to when you were there and what doctors you saw at Mayo. I thought it would be interesting if we had any of the same ones because they kept telling me I was so young to be in the situation I was in. i am sure you heard and still hear the same things.

[Monique]

Hello Lynsay,

A very frustrating part of this disease is often the lag in time between symptoms and diagnosis. I too was misdiagnosed a couple of times, as, even at the ripe old age of 39, doctors thought that I was too young to have colon cancer. I was very sorry to read that following your chemo treatments the cancer has returned. I can imagine, after all that you’ve been through, how frustrated you must feel. However, as you can read here, there are many stage IV survivors who lead productive lives and exceed physicians’ expectations.

I was very happy to read that your oncologists felt that you were the perfect candidate for the shake and bake procedure—from what I’ve read, the method sounds very promising.

That’s great news that your CT scan came back clear and that you’re allowed a break from chemotherapy. Yay! You mention that you're having a difficult time—try, if possible, to take one day at a time. Also, I've found that reaching out to people, in person or online, can also be very comforting.

Best wishes,
Monique

[amarsh]

I was 24 when diagnosed. I am 25 now. I have been through a lot of chemo and I am being told I will never be able to get off of it. I went to several places as well. One of them U of M. I am wondering if I should keep searching for a doctor who says that one day I won't have to be on it.

Overall the main thing is just stay positive. There are a lot of us I am finding out that have this nasty disease at a young age. We all have to share our stories and just hope for the best!