• WhatNextEmails' Avatar

    Colorectal cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Colorectal cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    10 Answers from the Community

    10 answers
    • Peroll's Avatar

      I was first diagnosed with colon cancer on July 15th 2004, a day I will always remember. At first I was devestated and thought I would be dead in 6 months. A week later I met with my surgeon and he told me he was going to cure me. After that meeting I felt much better. I have since had a rollercoster ride through the world of cancer treatment. My cancer has been in my lungs a lymph node in my chest and trachea, my right adrenal gland and now uit may be back in my lungs. All of this and I have managed to survive and continue on with my life. Over the years I have learned alot about cancer treatments and had a lot of them my self. I have learned to be my own advocate in the process and have become an integral part ofg my treatment team making miost of the crutial decisions as which treatments to use myself with the inputrs and recommendations from all of the Drs. I foubnd the following things I think are the most important to survival:

      1. Realize that Cancer is not a deathe scentance, it can be beat and people berat it every day. Even if the odds look long there are always people in percentage that make it and I choose to be in that percentage. I have hit the 5% end of the probability 5 times in a row so it can be done.

      2. Remain positive. No one can be positive all of the time all you have to be is positive more than you are negitive. Find something that can change your outlook when you get down like talking to peiople here on WhatNext or what ever works for you. Tell your Drs that your goal is to become cancer free evetually and that you do not plan to give up untuil you get there.

      3. Ask lots of questions. There is no such thing as a dumb question. You have a right to understand what is happening to you and know why a Dr recommends one treatment over another. Often Drs tend not to think of new or different treatment alternatives unl3ess asked so ask and make thiem think your case through. I am well beyound any standare treatment so my Drs are making it up as they go so they have to think creatively. You need to get them to think creatively.

      4. Do your own homework and research about your cancer and what treatments are available. This goes hand in hand with number three so that you can ask the appropriate questions. You have to know what to ask. you can start with resources like WhatNext and asking people here about thier treatments and what they considersed. You can also use the internet; however, be sure that you know how good the information you find is. Does it come from a reputable source? Is there scientific data behind it? Avoid falling for the promise of a quick and easy cure. Look for second opinions when necessary or when you feel you need it. No Dr should be threatened by a patient seeking a secone opinion. A good place to get a second opinion is a cancer research center or research hospital that will have access to the latest treatments and if necessary trial treatments. The more people you have on your team the better.

      All of these recomnedations will work for any cancer not just colon cancer so anyone can use them. Now all you have to do is get into the fight and beat the cancer!!!!!!!!!

      over 3 years ago
    • myb's Avatar

      I was diagnosed with colon cancer after my first colonoscopy at 50 last February. But per my gastroenterologist, I had the cancerous tumor for five to ten years (Yes that long) and the tumor was close to causing an obstruction which would have landed me in the E.R.

      I was given scripts for blood work, CT scan of chest, abdomen and pelvis to see if the cancer had spread and told to make an appointment with a surgeon ASAP. I was given a copy of the colonoscopy report for my surgeon, along with some local recommended names. I left the office in what was clearly a fog thinking, "Did I really hear the "C" word?" I lived in a fog this whole time. Not really wanting to talk about my diagnosis because that brought it into the limelight. I was the first person within my immediate family to have cancer, so the news hit like a shock wave.

      I racked my brain trying to think of anyone else I knew who had been diagnosed with cancer. The best I gleaned from the friends I spoke with before my first appointment with my surgeon was that I needed to feel comfortable (what I call get the warm fuzzy) with the doctor because I was trusting them with my life. I quickly found that surgeon at UPenn and scheduled the procedure for March 1. Now I just wanted the surgery date to come to get the cancer tumor out of me.

      My son left college early for his spring break to join my husband and me for my surgery. My son joked with me in the surgery prep room about my txt'ing everyone and anyone to keep my mind off the impending procedure. I even have a pix from that Kodak Moment of me txt’ing dressed in a hospital gown. Surgery went well and I was out of the hospital in 6 days moving very slowly but thinking that the worse was behind me.

      At my follow up visit with the surgeon, I received my devastating pathology results. There was cancer in 6 of the lymph nodes. My cancer was stage 3 because it was beyond the colon into the lymph nodes and therefore, I needed to do adjuvant Chemo. Basically I had heard the nasty “C” word again in a month’s time, and I was devastated. I couldn’t even get wasted away in Margaritaville! I was just numb. No one should have to hear the "C" word twice!

      I was asking for recommendations for oncologists locally and at UPenn. This was going to be my doctor for the next 5 years for monitoring of treatment. My husband and I both decided it was worth the four hour round trip back to UPenn based on the specialized gastro oncology care, private chemo treatment rooms and if I had a reaction, I was at UPenn Hospital already vs. a 30 minute drive to a local hospital. I scheduled day stay surgery to get a chemo port placed under the skin above my left chest area and lined up my 1st chemo treatment for the following week.

      I can't lie. There is an enormous amount of anxiety going into your 1st chemo treatment. You are given a list of drugs each with a 3 page list of side effects I was to receive during the chemo treatment. On top of that was another list of drugs to manage the side effects of the chemo.

      Did I forget to mention during all of this, that you are constantly checking to make sure it is all the proverbial "IN Network" for medical expenses? Cancer treatment means constant bills constantly having to be paid until you hit that max out of pocket for the year which is a piece of cake as none of them are cheap! Per Fight Colorectal Cancer organization, the treatment costs for an individual with colon cancer can reach $300,000 per year. Been there, done that!

      The 1st chemo was by far the worst with so many side effects, it was incomprehensible! After the drive down the Turnpike there was blood work, doctor visit to receive the OK to start chemo, then the treatment which was premeds for nausea, anti inflammatory and anxiety, along with 2 hours of one chemo drug. Then they sent me home hooked up to a pump with another chemo drug that weighed 30 oz and went "Swoosh" every 2 minutes for 46 hours. Each day I logged what pills I took, how I felt, what side effects I had and what I did in terms of exercise. My doctor reviewed these notes at my following treatment and would tweak some meds and the whole routine started over. This was my life from April to Sept every other week. We perfected my cocktail of drugs by chemo 6 where basically I slept through most of it to avoid the nausea and constipation.

      The “Cumulative Effect of Chemo” was another enigma. With each chemo treatment, it takes you longer to snap back to a new normal. I don't even think I can describe what it’s like. You just get through the day as best you can.

      You know who your true friends really are when word gets out about your diagnosis of cancer. Everyone prays for a healthy outcome for you and that means a lot! People offered to cook meals, visit or drive me to UPenn. Thankfully, my family and friends also understood that I needed to get through this alone for the most part. It is all very frightening, and I won't deny that I had a pity party a couple of times when the going got tough. But through it all, I proved the tough get going!

      I counted down through each chemo treatment and before I knew it, my last one arrived on September 11th. On September 14th, I was back at UPenn for my 1st scans since diagnosis to see if I was cancer free. My doctor gave me my "All Clear" results on Saturday and I immediately felt a major weight lift off my shoulders.

      But chemo is the gift that keeps giving and 1 week after finishing treatment, I developed neuropathy when my hands and feet started to tingle. Then one month after chemo, the neuropathy worsened when my hands and feet felt numb. The tingling is suppose to stop but the numbness is likely permanent. My muscles screamed at me at bedtime after doing any yard work like raking or mowing or decorating for Christmas.

      I have since started the Livestrong program 3 days a week at the YMCA to help recondition my muscles. I've tried a drug in various doses for the neuropathy, but when the higher dose helped to get me to sleep, it also put me to sleep during the day. The lower dose did nothing. Honestly, after 6 months of taking pills for everything, you are tired of pills. I started taking an 81mg aspirin daily to minimize the risk of recurrence, but I had to stop taking it when the nose bleeds started. I’ve adopted other healthy habits like being more active as exercising reduces your risk of recurrence as well as eating healthier.

      You try not to think about the chance of recurrence with each checkup until you hear the "All Clear" from your doctor. You do a lot of praying and get a lot of support from your friends and family! I am happy to say that I motivated some people to go for their colonoscopy after hearing that I had no symptoms last year. A staggering fact about colorectal cancer is that, 1 in 3 adults age 50 to 75 are not up to date with the recommended colorectal cancer screening. If I can get a few more of you to get your colonoscopy, then my telling of my experience here was all worth it.

      People asked me when I was going to celebrate being cancer free. I didn’t have an answer. For me now every day is a celebration and I value the people close to me more. It was such a battle to get through last year and I still struggle with fatigue and neuropathy issues. I am just happy where I am at in my new normal doing what I can to engage life more and not sweating the small stuff. I plan to connect with friends in small groups to celebrate with a lunch, happy hour or a local winery tour.

      over 3 years ago
    • jlacquement's Avatar

      Hello. Forgive me, I know this is supposed to be stories about survival. But, I've a question. What specific treatments did you receive other than chemo?

      over 3 years ago
    • spirithorse's Avatar

      I was taken into the emergency room in January of 2012 and had emergency surgery to remove a blockage. I left surgery with an ostomy and a diagnosis of stage IV colon cancer. I spent two weeks in the hospital on diladid and morphine. This cocktail kept me as comfortable as possible but the side effect is I have absolutely no memory of what went on during those two weeks. After I went home from the hospital I began chemo and radiation. I wore the chemo 24/7 and had the radiation every day. In the middle of March I ended up back in the hospital with another blockage. At this time I was down to 74 pounds and they spent two weeks trying to unblock me. They sent me home and told my family I had 3-4 days left. Hospice came every day and on day two I was given a miracle, my blockage unblocked. From March until July the only medical intervention I had was my visits from hospice to monitor the tumor and treat my pain. During this time I continued to get stronger and was able to ride my horses and plant my garden. I decided in July I should get a second opinion on what was going on inside of me and went to the Mayo Clinic in Rochester. I had a CAT scan and they did blood work and had all my medical records from my previous doctor. My oncologist, Dr. Alberts looked at everything and said my tumor had shrank (from 15 cm to 12cm) and did not appear to be wrapped around any major organs any more. He was astonished with all of this because I had a very fast growing tumor. He ask me what I had been doing and I told him. THIS IS THE IMPORTANT PART. I PRAYED CONSTANTLY AND USED SACRED FRANKINCENSE ESSENTIAL OIL ON MY TUMOR AREA 7 TO 8 TIMES A DAY. Please check out the research on essential oils but Young Living has numerous research studies that show that certain essential oils have been shown to slow down cancer growth and even begin to shrink the tumor. I am not advocating to stop seeing your doctor or anything like that. I can simply tell you what worked for me.

      I was examined by 4 different surgeons for the four different parts of my body they would have to remove to get to the tumor and all four agreed to give it a go. I had surgery the last part of August and was in surgery for 9 hours and came out with no tumor and clean margins. I spent 10 days in the hospital. It has been a very hard battle as you all know. I had 7 chemo treatments. They wanted to do 8-10 but the neuropathy became so bad we had to stop. As of two weeks ago when I had my CAT scan and blood work done, I AM CANCER FREE.

      The doctors at the Mayo call me a miracle. How ofter do you hear a doctor say those words? Every doctor I see now says the same thing.

      As you have heard numerous times on this site, stay positive as much as you can. I set small goals to reach like making it to Easter, etc. I also have a strong connection to my horses and their spirit helped me keep going on days I wasn't so sure I would get through. I don't believe there is one sure method that wil work for everyone but I do know that God kept his arms around me and listened to a lot of crying but never left my side.

      No matter what part of the journey you are currently in, don't give up.
      Fight, fight, fight. If there is anything I can help anyone with please don't hesitate to contact me.

      Cancer Winning Warrior,

      over 3 years ago
    • dhall's Avatar

      12/29/2011 after 5 horrible painful days - vomiting, no bowl movements - gave up and said please take me to the hospital. Admitted to ER promptly, x-rayed - nose tubed, C scanned and asked how many prior surgeries, responded none to shocked faces! Was transferred to main campus facility down town Detroit, C scanned and prepped for emergency surgery - pretty sure ER surgeon said "I would be loosing some things" and we would talk more after but at that point my colon was perforated and the Doc said something about rupturing being a very, very bad thing! 3 1/2 hours of surgery later, no more colon (Or Pare sized tumor), a new ostomy. 10 day hospital stay with dilada on demand drip and stage III type C cancer diagnosis!! 6 months of chemo that included a real fun take home 48 hour drip pump to my new chest port. All scans to date have been good news to date, saw my Oncologist 3/11/13 and was told latest blood work looked good! See um in another 3 months for PET / CT scan and or CAT scan (Leaving out some details about the, some scary lump, node etc that seems to have shrunk, no one is real sure why? And the infection while in hospital!) Not digging the neuropathy but XXX who dose - was told it beats the alternative and that many times by the excellent, professional Medical staff, team that "I have had a good "attitude" Also left allot of medical billing & SSI info out of the story!!!! Living life!!! trying to appreciate family, friends, food and time left more, more emotional.... Good luck to all!

      over 3 years ago
    • Shanti's Avatar

      My cancer is allowing me the freedom of time to find and experience peace in my soul.

      over 3 years ago
    • Rosa's Avatar

      There is no cancer history in my family. When I noticed I was having some occasional rectal bleeding, I thought it was internal hemorrhoids. My older sister and two of her sons have had surgery. After two months I decided it was time to go have a colonoscopy to take care of the hemorrhoids.
      Little did I know when I went alone to get the results of the biopsy. The doctor told I had a rectal mass and that she was referring me to a surgeon. I waited in her office while she went to make the appointment and I was thinking "what kind of mass? There are many kinds of masses. When she came back I asked her and she told me "cancer". I really was numbed, no reaction. Drove all the way back to my sister's home just to have some company.

      It was the week before Holy Week, so I knew it would not be easy to get the appointments. But I went to the surgeon the next day. After checking me he told me he was NOT going to do surgery, that he wanted to try chemo and radiation first. Next day went to an oncologist who did not believe in air conditioned offices. Open doors, unscreened open windows, patients walking around pulling their IV's, lying on chairs, couches, beds (depressing). My daughter was hysterical when we got out. She was screaming: "My mother is not going to receive treatment in such a place, she is not a cancer mass, all she is getting there is 'dengue fever' with all the mosquitoes flying around". Next day I went to the radio-oncologist and he referred me to another oncologist, who was able to see me that afternoon. A very nice place with very nice people.

      After all the preliminary tests I started treatment about three weeks after diagnosis. Four doses of Oxaliplatin, one every two weeks, 28 rounds of radiation, accompanied by 4 Xeloda pills from Monday to Friday. All together they did a number on my stomach. Terrible cramps, diarrhea, killer hemorrhoids, radiation burn. But I survived. Every time I was under that radiation machine I would pray: "Please Lord, direct that ray to the tumor, destroy it completely. Please cover my surrounding organs with your merciful hands so that they wont be harmed."

      Six weeks after finishing treatment, my Pet CT revealed no signs of the tumor. An anascopy revealed the area was totally clean. I was so happy I posted it on my Facebook account, so that all the family and friends who had been praying for me knew immediately that I was cancer free. They were all thrilled and thanking Our Lord for His mercy.

      Right now I am in the first year round of tests. So far so good. Had another anascopy and sigmoidoscopy two days ago and the doctor was very happy with the results. The first week of April I have a CT Scan and then more labs. Somewhat anxious, but hopeful that everything will keep been ok.

      It has been a very difficult journey, but I had all my family, many friends, and even people that I do not know offering me help, advice, prayers.

      Then I found What Next and it has been a blessing. Reading other people experiences has helped me so much. There are so many people here that have been through this several times, had multiple surgeries, many complications, but they have survived, are happy, and willing to offer hope, advice. Thanks to all!


      over 3 years ago
    • IKickedIt's Avatar

      My story is similar to others here...never expecting to hear the "C" word. The numbness, the fog and then the panic and anxiety. So I'll talk about the other aspects of my cancer journey and the main reason why I am here on WhatNext. My support network, the lessons I learned and how I am a better person today than I was when I was diagnosed 2 years ago.

      I am a control freak. I like order. I have always been very much in control of my destiny and if not, I quickly map my new course, adapt and move forward with confidence. If I don't have control and confidence, I unfortunately see that as a weakness in myself. Yes, I am very, very hard on myself. My husband tells me I am my worst critic.

      Of course when I was diagnosed with colon cancer, there was no more control over my destiny, my life or my course or the lives of my loved ones. This wasn't fair to my husband who had lost his sister to cancer. This wasn't fair to my parents who had already buried their son, my only sibling. This wasn't fair to my teenaged sons who would now not be able to enjoy their high school years to their fullest. I am extremely independent and didn't want to disrupt anyone's lives. That was something that I lived by during my entire journey. Cancer was not going to affect my life or the lives of my loved ones any more than it had to. I didn't want it, I didn't invite it and I was going to do everything in my power to not let it encompass or ruin every part of our lives.

      My mantra: Ya gotta do, whatcha gotta do!

      Everything had to be on my terms. I am a very unselfish person and I hate self-centered people, but this was one time in my life when I came first. I don't like attention, but I was in the driver's seat, calling the shots. I chose who I told and when. I chose those friends I wanted to be with. I screened my phone calls (that's why there are answering machines!). I didn't want to hear other people's gloom-and-doom stories. I had one dear friend who only wanted to talk about her divorce from 15 years prior that she still hasn't gotten over and how horrible her cancer treatments were. I did not want to hear that, so I would let the answering machine pick up and then I'd send her an email thanking her for her concern, letting her know I was resting and doing well. I needed to surround myself with positive, optimistic people...my friends who made me happy, comfortable and loved.

      I even kept my parents at a bit of a distance. My mom is a pessimist and a complainer (I do not take after her!!!). We discussed my need to do this on my terms before I went in for surgery and chemo. Our relationship actually improved. We communicated more often and built a system that worked for both of us. I did not want my parents to be at chemo with me. They had taken my brother for medical treatments his entire life. They didn't deserve to see me going through chemo. I didn't want them to drive the hour to be with me just in case my numbers were low and I couldn't get treatment. Then they'd have to turn around and drive home...they are in their 80's. I was in constant contact with them either via text or phone. They respected my needs and I respected theirs. The key here was talking it out and setting the expectations ahead of time.

      I never knew I had so many friends! I had people offering left-and-right, so I started a small notebook and had a page designated for each thing people had offered to do: grocery store, take me to the doctor's, sit with me at chemo, cook a meal, do my laundry. Then I had a page for each person so I could keep track of what they had offered and done for me so I could refer to that when I needed help and when I wanted to write them a thank you.

      Be compassionate and understanding, however. Everyone has their own baggage. As I mentioned, my brother passed away. He had a severe genetic disease and spent most of his childhood in the hospital. Going to a hospital is extremely painful for me, so I cannot go. Not that I don't love my dearest of friends, but if they are in the hospital, I will call and help them once they get home, but I won't go to a hospital. So, my best friend helped me in so many ways, but I made the mistake of asking her to go to chemo with me since no one had offered or was available on that particular day. I had forgotten that she had just gone through a year watching her father-in-law go through chemo and eventually losing the battle to cancer. It was too painful for her to see me on chemo. After that, I always had that little notebook near me and I never asked anyone to do anything they hadn't offered to do.

      Because of my support network, my husband only had to take time off of work for my initial doctor's appointments, my surgery and my first and last days of chemo. Like I said, this wasn't going to interfere with my family's lives anymore than it had to. I wanted them to live as normally as possible even if I couldn't join them (go to the baseball game - I'll watch it on tv and we'll text; go to the shore - although we did go a few times in the evening once the sun went down and had a beautiful evening walking on the beach at dusk and then the boardwalk). I gave my husband his space to relax and go out with his friends so that when he came home to take care of me he was refreshed. He looked forward to coming home and taking care of me and being with me when we knew I'd need him most. We connected with other couples who had gone through cancer and we were there to support each other and we are all still very good friends today.

      I am a better person - a better wife, daughter, mother, friend and colleague - because of my experience. I soaked in and appreciated every single thing my friends and family did for me and now I'm going to spend my life giving back. My children and husband are better people, too. That is why I'm here on WhatNext. I wish I knew how to reach more people so I could help them. I would love to write a book, but I'm not one to sell anything, so it would never be a best-seller, maybe perhaps just cathartic.

      And most importantly, take care of yourself. Don't be afraid to ask for help and certainly don't turn it away when you need it. Hopefully, this is just a temporary situation so you will have a long life ahead to do the things you may have to pass up while focusing on getting better.

      over 3 years ago
    • pmooty's Avatar

      I lived with a little black cloud around age 48-49. My mom died from stomach cancer at 49. When I turned 49 it was on my mind. I always said I would never let symptoms go, but I did. I had slight bleeding after a hysterectomy and subsequently developed constipation. I diagnosed myself using sites on the Internet and treated with Preparation H, etc. I was running in 5Ks and feeling better than ever. Nine months after my first symptom I finally went to a GI who ordered a colonoscopy and he found the cancerous tumor. I underwent a CT scan, which seemed to show no metastasis, so I thought I would be home-free after surgery. Unfortunately I had 5 positive lymph nodes from the 15 they took, which required me to have chemo.

      From the beginning I said I could endure chemo if I had to, that if I lost my hair I would not care (and it thinned but no one can tell but me). I just wanted to be rid of cancer, whatever that took. The chemo has had its moments, and in the beginning I began to understand why people say they'd take their chances without it. I merely talked to the nurses and doctors and surprisingly they had remedies that soon made me feel much better (adding Amend for nausea, adding dexamethasone for lack of appetite, etc.).

      When I chose my surgeon, I picked someone who was known to be positive and patient-oriented. He had a naughty sense of humor and made me laugh (which is important when dealing with bowels and such), and that fit my personality. I reached out immediately to those I knew had endured a cancer diagnosis and treatment. All were more than willing to give advice and support. I cried out to family and friends and my church family. I encourage anyone who doesn't feel part of a faith organization to reach out anyway! Most will welcome you and love you through what can be the hardest time in your life. One friend with cancer wisely advised me to ask for help, and TAKE the help. She said we are robbing people of being a blessing if we tell them no. Of course I also was told by my APN to back off from anything negative in your life, and sometimes that can be a person. It's hard to understand how you can make such changes, but when you look at your physical and mental well being as the utmost importance, you will see that it's necessary. Your mind has to be at peace so your body can follow suit.

      My motto was "Live like you're well, not like you're sick." I worked when I could but I took off when I needed. I attended church when I felt like it, but prayed at home if I couldn't make it. I rested, I watched mindless TV, I read and researched what I was able to handle at the time (you get more brave later).

      The most helpful thing I did was to blog.. from Day 1. I read it back often and how I grew through the process. I recorded scriptures that were meaningful to me, I posted videos that gave me inspiration. I talked of all the people I loved and who loved me. It wasn't a goodbye letter, but I did want to tell everyone how important they were to me. And most of all I wanted to speak of my faith and God, who saw me through this whole process.

      I am in the "11th Hour", the title of my latest blog post, dedicated to treatment #11. So I have one more to go and I've already written the blog post to be published on that day. I've already shared the blog with many people and will continue it but I did take cancer out of the title. Of course I will still blog about my progress, but I am devoting to faith and wellness. Now I blog about Dr Weil, whole food, cancer-fighting remedies, and other things that help me to heal myself and promote my wellness.

      And I suspected a dear friend reached out to me, saying she had received a cancer diagnosis. I have others who have told me that they see now how important screenings are, even when things seem to be going well. Cancer is indeed scary. but the fact is that the survivors will be more in tune with their bodies and under constant surveillance. We can look at it like a curse, like a black cloud that might someday rain down on us, or we can look at it like a blessing that we will be so closely monitored for years. We have caught the early warning sign to make changes in our life, whether due to health, relationships, lifestyle. I have made changes in all the above. I don't love cancer, but I do love what it made me fix in my life

      over 3 years ago
    • cganawah's Avatar

      thank you all for sharing your stories, YOU ALL ARE CHAMPIONS IN A VERY SPECIAL WAY!!!!!!!

      over 2 years ago

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