FEAR OF RECURRANCE

FRANTIC
FRANTIC Member Posts: 106
edited March 2014 in Colorectal Cancer #1
I HAVE BEEN DX.W/COLON CANCER AUG.2003.STAGE 4,8 LYMPH NODES LOCALLY ADVANCED.CANCER CAME OUT OF CECUM COLON AND SPREAD TO SIGMOID. WAS LEFT WITH
AN ILLEOSTOMY ON THE RIGHT SIDE. A DRAINING MUCOUS FISTULA ON LEFT. HAD COMPLICATIONS FROM SURGERY-BLOOD CLOTS TO LEG,LUNGS.HAD TO BE REOPENED FOR ADHESIONS. I HAD 3MONTHS OF CHEMO.
5FU,CAMPOSTAR,LECOVAORIN.(2 WEEKS ON 1 WEEK OFF),
THEN 5 WEEKS OF RADIATION, THEN 3 MORE MONTHS OF
CHEMO. CURRENTLY DEVELOPED RED BLOOD CELL APLASIA
AND AM HAVING TRANSFUSIONS. I HAD A PETSCAN IN OCT.2004 WHICH WAS CLEAR.I AM CONSTANTLY THINKING
ABOUT THIS CANCER 24HRS/DAY. AND AM SCARED. IS THERE ANYONE OUT THERE W/SIMILILAR FEELINGS.

Comments

  • alihamilton
    alihamilton Member Posts: 347 Member
    #2
    Guess what! You are competely normal! After all you have been through, it is quite normal to be afraid it will come back. My husband dx July 2003, Stage 111, 11 out of 18 lymph nodes involved. Surgery, complications from that, chemo, 5Fu/Leukovorin, blood clots in legs and lungs(sound familiar??), radiotherapy, urinary catheter in for nearly a year, blockage at one point, now NED but in need of constant checks. Yes, I too am so afraid it will return but we have to try and balance our lives so that it is not consumed with fear of the unknown.

    Try and force yourself to put it out of your mind as much a possible, at least between testing. Enjoy each day as it comes. None of us know what our future will bring...I could be run over by a bus tomorrow, if you see what I mean. But I cannot let that spoil the sunshine of today.

    Are you working? Do you have hobbies, etc. to keep your mind positively occupied? Maybe it is time to take up something new.

    Take care
  • nanuk
    nanuk Member Posts: 1,358 Member
    #3
    You probably described the feelings of over half of the folks on this site; for me the thought is constantly with me, but then I wonder if what I think about I may bring about, so I try to direct my thoughts to healing. The mind can be a powerful factor in your recovery. Bud
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
    Ahoy FRANTIC -

    Welsome to the semi-colons... You know, I think that fear of recurrance is something we all live with. We dont look at a cold or a stomach ache or even a hang nail the same way anymore... We fret "Is it a malignant hang nail?".

    That's not necessarily a bad thing - it keeps us on our toes and ever vigilant. Complacency about this disease can mean curtains. At the same time, we have to balance our constant fear and not let it consume us.

    My cancer is hereditary. As long as every cell in my body has the cancer DNA in it, I'll be at risk - I'll never be "cancer-free". That's a reality I have come to accept. I like to say "We cannot control the length of our lives, only the depth".

    Try - if you can (I understand it's only been about a year) - to focus on the beauty and quality of life. It's too precious a gift to let slip by whilst we fret about a recurrence.

    Cheers, my friend. Carpe diem.

    - SpongeBob
  • kerry
    kerry Member Posts: 1,313 Member
    #5
    spongebob said:

    Ahoy FRANTIC -

    Welsome to the semi-colons... You know, I think that fear of recurrance is something we all live with. We dont look at a cold or a stomach ache or even a hang nail the same way anymore... We fret "Is it a malignant hang nail?".

    That's not necessarily a bad thing - it keeps us on our toes and ever vigilant. Complacency about this disease can mean curtains. At the same time, we have to balance our constant fear and not let it consume us.

    My cancer is hereditary. As long as every cell in my body has the cancer DNA in it, I'll be at risk - I'll never be "cancer-free". That's a reality I have come to accept. I like to say "We cannot control the length of our lives, only the depth".

    Try - if you can (I understand it's only been about a year) - to focus on the beauty and quality of life. It's too precious a gift to let slip by whilst we fret about a recurrence.

    Cheers, my friend. Carpe diem.

    - SpongeBob

    Hi FRANTIC,

    The fear of recurrance really never goes away, but I consider that fear to be a way to help monitor your own health. Without the fear factor, I would not have found my own recurrance 2 weeks ago. My onc. swore I was healthy, didn't want to do a PET scan, didn't feel that my rising CEA was a problem, didn't feel the lymph node lump that I felt myself - so my fear protected me and made me insist on tests - which found the cancer had in fact returned. It's al about finding it sooner rather than later.

    As Bud said and as SpongeBob lives - keep the positive attitude - don't become obsessed - but be vigilent and know your body and ask questions.

    I intend to beat this buger disease the second time around too.

    Kerry
  • taunya
    taunya Member Posts: 390 Member
    #6
    I posted something similar last week! I jsut got the date of my next check-up and I am beside myself with fear. Every little ache or pain is scary and potentially malignant in my mind! I thnk that this is not going to go away and that we need to learn to cope with it more constructively (like Kerry). I hope you feel better and I am thinking of you and sending good healing vibes your way!
    Hugs,
    Taunya
  • LindaJean
    LindaJean Member Posts: 19
    #7
    Hello Frantic,
    I have not had the experience you have had although being diagnosed with cancer (I am stage 3 with 1 lymph pos - resection March 2004 and 6 mos. of chemo-folfox) isn't an easy thing for anyone to go through. After the initial emotional roller coaster I knew I had to get on with things and what really helped me was trying to put things in perspective.

    Do any of us really know what will happen tomorrow? We hear everyday about auto accidents with fatalities or sudden unexplained illnesses that result in the loss of a loved one. So all any of us can do is live each day to the fullest, doing the best we can, loving every minute of the day because none of us know when our number will come up! Once someone is diagnosed with cancer or any other serious illness it should make us a little more aware about how/what we are feeling and realize the importance to better communicate with our doctors and do what is necessary to get better.

    There is still a lot I want to do but I still take one day at a time and just do the best I can and try to have a great attitude doing it. Don't mean to go on so long as I definitely have my moments but I only have control over so much so I chose to not stress over it (stressing isn't good, is it?).

    Take care,
    Linda
  • steved
    steved Member Posts: 834 Member
    #8
    As everyone says above- yes this is normal and many of us can relate. I am stage 3 still having my six months post op chemo. I find I now have started to have periods where I don't think about it constantly but that has taken almost a year. Slowly some sense of normality is creeping back in to our lives. It will take longer for you as you have more advanced cancer and your life has been more dominated by prolonged treatment. Give it time- as your life becomes less dominated by going for treatments/ investigations etc some normality can return. While everything you do is cancer related it is normal for your thoughts to be.
    try to think of things you used to do and enjoy before this cancer took over your life and try to do something unrelated to the cancer each day. Distraction and time is the best way to address this. But accept also that this is a large part of our life now and for some time to come so worries and fears are normal. Try to balance them though with positive and realistic thoughts- you are currently clear from cancer that has responded well to aggressive treatment and that is a great thing to have achieved. Yes it might come back but then again it might not- there are two sides to the argument and it is very easy to lose sight of all the positives in among so many problems you have had.
    Sorry rambling again but I hope this makes some sense.
    Anyway welcome to the site and I hope you can share some of your own knowledge and experience as I 'm sure we have a lot we can learn from you.

    Let us know how things go,
    steve
  • livealoha
    livealoha Member Posts: 4
    #9
    taunya said:

    I posted something similar last week! I jsut got the date of my next check-up and I am beside myself with fear. Every little ache or pain is scary and potentially malignant in my mind! I thnk that this is not going to go away and that we need to learn to cope with it more constructively (like Kerry). I hope you feel better and I am thinking of you and sending good healing vibes your way!
    Hugs,
    Taunya

    I am brand new to these boards. I was diagnosed in Dec 02 with stage 2 colon cancer....had a resection done in January 03...good margins.....sent on my way...then had a total hysterectomy in August 03 due to what they thought was ovarian cancer - turned out to be stage 1 uterine cancer. I had a one year follow up colonoscopy that landed me in the hospital for a month in December of 03 with a small bowel obstruction due to adhesions. A day and a half ago I had another colonoscopy which I am still awaiting the results of a couple of biospys my dr took. I too am afraid. I know I will survive another surgery if needed but I definately don't want to. None of my Dr's have recommended a Pet scan. I found my birthfamily and have found colon cancer and breast cancer to be a definate genetic thing. I am getting ready to move from all my doctors, surgeons etc to live on the Big Island of Hawaii. I would like any recommendations on whether I should have anything else done or looked at before I go or just go and enjoy life in paradise. (I now live in Las Vegas, Nevada). I already feel better just talking to others who know what I am feeling. Thank you all for listening. May God bless each and every one of you. Debbie

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