• And stage IV colon cancer long term survivors out there! I need hope!

    Asked by kkcomm on Friday, August 7, 2015

    And stage IV colon cancer long term survivors out there! I need hope!

    I was diagnosed in the spring of 2013. After healing from colon surgery I first saw my chemo onc and he told me I had 8 months if I did nothing and 20 months if I did chemo and there was no hope of a cure. Since then I have had 17 rounds of chemo, sphere radiation, portal vein embolization, and 3/4 of my liver removed along with a bunch of lymph nodes and my right adrenal gland. 18 months ago I was full of cancer. Now I have a small mass on my left adrenal gland and some slightly enlarged nodes. His assistant told me yesterday that there is still no hope of a cure. Am I wrong to think that there Is always hope? Isn't it possible to be honest and tell me that the odds are bad but there have been some long term survivors? And while we are doing everything we can to keep it at bay, researchers are working on new treatments right now so you never know for sure? I come out of that offic so depressed that I am glad I only see them once a month.

    13 Answers from the Community

    13 answers
    • geekling's Avatar
      geekling

      Doubtless, folks will show up on this list after a bit.

      No matter, however, because you ought to put yourself on the top of the list with full conviction, determination, and information giving you a skill set on survival.

      Be as kind to yourself ad possible.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Absolutely, there is ALWAYS hope. Until you draw your last breath.

      Please seek another opinion. Your doctor sounds like a fatalist or something. I agree that he could be more encouraging. I am a realist, but ...

      I can't think of who they are on here, but I am nearly positive there are some long term survivors. I hope they will see your post soon and be able to offer encouragement.

      Have you thought about a clinical trial? That gave me cutting edge treatment that has kept me alive since 7/2013. I know it could quit working any time, but maybe something else will be available when it does. I have loved being in a trial.

      Big, big hugs.

      over 4 years ago
    • geekling's Avatar
      geekling

      I reread your note.

      I dont like your doctor. He has no right to parcel out time and predict your future. Any stats he might be using (ask where he gets his information) are yesterday's statistics. One doesn't ever know what might happen, be developed, or be learned in the future.

      Also, is it possible for you to:

      1. Be on a liver transplant list. How can you function well with only 1/4th of you liver?

      2. Adrenal glands are very important. I bet your digestion is suffering along with everything. Do you own a juicer? Do you have food restrictions?

      3. Would you be willing to get a second opinion? If so, please find out (or ask here) the best teaching hospital. The Mayo isn't too far, is it? If $$ is a problem check out "Angel Flights". There is another outfit too which offers free air rides to cancer patients. It is Mercy something but my brains are a bit scattered.

      4. Breathe. The oxygen is calming and our bodies are little oxygen machines.

      By the way, you are only 2 months short of your doctor's dire prediction. If it were me, I'd keep going just for spite. He is a control freak. A total dastard. You are strong enough to type and to make sense. You aren't ready to die or you would be tired and your grumble mumble doctor isn't suggesting hospice, is he?

      I wish you much better circumstances. Stay strong. There is always Hope. Do you know the myth of Pandora? She was gal from ancient times who was given gifts for mankind from the ancient gods. She was told to not open the box but to deliver it unopened and intact but she was curious. She opened the box and all of the gifts escaped before she could close the box again save for one which no one can take from us. What remains in Pandora's Box is Hope.

      over 4 years ago
    • Hellbent's Avatar
      Hellbent

      Hope, pray, breathe and believe! Get a 2nd opinion or more if you need it. In our own personal battle with my husband's Stage IV colon cancer with liver mets, we refuse to have any oncologist, put an expiration date on my husband's life. You do the same...I believe in miracles and hope.

      over 4 years ago
    • NanaL's Avatar
      NanaL

      Me, Me, Me!!! I'm stage IV and I just celebrated my 5 year anniversary mark!! Your doctor sounds like a real XXX! Please don't listen to your doctor. He doesn't have a crystal ball to see into the future. I'm currently in a clinical trial and doing well. There are always new treatments coming down the pipe! Stay strong and positive! You've already been through so much and fought too hard to listen to any negativity. Hope is very important in this battle. Best Wishes, Sharon

      over 4 years ago
    • dsjmrpt's Avatar
      dsjmrpt

      Me too! I was diagnosed with stage 4 two separate times. I've had four different oncologists who worked together(not to mention the surgeon). Even hospital staff was surprised I made it, but I have been cancer free for a year now. Keep positive!

      over 4 years ago
    • weewon's Avatar
      weewon

      I was diagnosed with stage 4 colon cancer with liver mets in Sept.2014. My oncologist at Roswell Park in Buffalo NY has always been positive and encouraging. The support of his team and the nurses helped ME to remain positive. I've been told that I have a terrific attitude through this journey, and I figure that there's really no other way to be! Some days living with a colostomy gets me down, but that will be reversed one day soon. 12 treatments of chemo including a study drug shrank my 2 liver tumors 28%, and a smaller one disappeared after 2 more rounds of chemo to keep me 'stable' until liver resection. That surgery was 2 months ago, when they remove about 50% of my liver. Recovery is taking time, but I am feeling stronger and better each day. About 4 weeks ago I had blood work done, and my oncologist was so pleased with my numbers that he was confident enough to wait until October to see the results of a CT scan ordered by by surgeon! So, I heal and wait to see if the cancer has spread or is gone. I live and enjoy life each day and don't worry. If I need more chemo, I know what to expect now, and there are new treatments being developed each day.

      Please remain positive and don't give up. There is always hope, and I believe that having a relationship with God removes any fear I might have had about death. I have prayed and had many friends and people I don't even know praying for my healing. I believe that has helped my survival greatly. He's keeping me around for some reason!! I hope that my story helps you in some small way to remain hopeful and positive. Take one day at a time, and remember, it could be worse! Prayers, peace, and hope to you.....

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      I am a five-year survivor of Stage IV esophageal cancer, I was told I had 4-9 months to live with treatment. Thank God my nephew is a Dr. knew a surgeon who was doing new.
      If your Dr.s are saying no hope for a cure, it is time for a SECOND OPINION. Just in passing I have seen many articles on research for colon cancer. Ask your medical team about clinical trials?
      Contact some Medical Schools in your area. Find out if you can use their medical library resources. Also log on to the Mayo Clinic Website.

      over 4 years ago
    • MizzVisual's Avatar
      MizzVisual

      March/2012 I was diagnoised with StageIV colon cancer - mets to my liver. No Evidence of disease @ this Time (NED) I've had a portion of my colon removed, 1/2 of my liver removed. Completed aggressive chemo April 2013. MRI/PETSCANS lit up like a Christmas tree in Sept/Oct 2013. had the removal of my lights (lol) in my abdominal wall in December/2013. Currently, I am still having internal issues but I am enjoying each and every moment of each day. My motto is Let go, Let God..... You must think positive and continue to have Faith after your visits with your doctors whom has no beside manners. Please do more than sit with worry, Live- Love and enjoy all of the small stuff - every day that you are waking up! Wishing you much strength!!

      over 4 years ago
    • cam32505's Avatar
      cam32505

      You have to have hope to fight this disease, and it sounds like you do. I agree that you need a second opinion. Doctors seem to just do the same treatment that they're familiar with and won't try anything new unless you bring them an article about something new. So, you could benefit from the second opinion and a little research on your own.

      over 4 years ago
    • Jane's Avatar
      Jane

      I have had stage four cancer 4 times--twice in the liver and twice in the lung and am 5 years out from the last one. My oncologist considers me cured. I can't agree more with the other who suggest a new doctor. Their attitude makes all the difference. I had one who told me it was palliative treatment and I'm sure if I had stayed with him it would have been. I had shaped beam radiotherapy and no surgery. Surround yourself with people with give you hope!

      over 4 years ago
    • Joyex's Avatar
      Joyex

      My husband was diagnosed with Stage 4 colon cancer in June 2007 with a recurrence in 2012. He has had surgery, chemo (lots), radiation, more surgeries - including a liver resection. Today he is playing golf - as he was also doing on Saturday. And he walks - he does not take a cart. So there is always lots of hope. We have also met doctors who gave him "2 years" on a couple of occasions - but the current oncologists just take it day to day, doing the best for my husband as he needs it. Wishing you lots of good luck and hope.

      over 4 years ago
    • MizzVisual's Avatar
      MizzVisual

      Kkcomm, checking on you. I'm praying that you are having a peaceful day.

      over 4 years ago

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