Finishing Treatment & Fear

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Crayonlover
Crayonlover Member Posts: 11
edited March 2014 in Breast Cancer #1
Next Wednesday, I will be having my 17th and last Herceptin treatment. While everyone around me is jumping for joy, my level of fear is increasing daily.

I had a bilateral mastectomy in April 2006, had to deal with reconstructive surgery that failed, I had 4 cycles of Taxotere and Cytoxin, started Herceptin treatments spread out over 12 months and in April of this year, I had more surgery to deal with the failed reconstruction.

I have a growing fear of recurrence especially since I know that after next week, I won't see my doctor for at least three months. Who's going to be watching me to make sure this insideous disease doesn't return?!

On top of that, my 11 year old daughter is having anxiety attacks that my cancer will come back. I am finding it hard to comfort her when I'm feeling so anxious about it all myself. My daughter is very bright and so we decided, from the time of my diagnosis, that we would be honest with her about my condition so her imagination wouldn't make reality worse. She has been with me through chemo, surgery complications, doctor visits and Herceptin treatments and has weathered the storm fairly well. But it has been a brutal 16 months for all of us and we are having trouble coping now.

Does anyone have any advise/suggestions? After reading some postings about recurrence fear, I know I'm not alone. It's hard to find someone to talk to that isn't trying to be a "cheering squad". They don't seem to understand that I just can't "get things back to normal" now that my drug treatments will be finished. They just don't understand that I can't be the person I was before. They don't understand the fear and the uncertainty. Frankly, my 11 year old seems to understand the reality of it all better than most adults I know although I have been trying to shelter her from my anxiety as much as possible. So tell me, does any of this make sense?

Crayonlover

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  • chenheart
    chenheart Member Posts: 5,159
    #2
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    Crayonlover~you are absolutely NOT alone in your feelings! I did not have your exact circumstance, but my last day of chemotherapy was just as frightening as my first. I remember breaking down and crying; not with relief that I was finally done, but with terror. If I wasn't able to prevent cancer in the first place, what was going to keep it from coming back??? My barrier, my safety net, the dreaded chemo with all of its side-effects was being taken away from me!!!! I then started taking Arimidex as a recurrence fighter. I have a year to go, and then will have to deal with the "Now What" which is sure to follow.
    Others have wisely posted that our friends and families, though certainly touched by our cancer, never really understand what it is like to be in our shoes. And as much as I love shoes, I wish I had nevr put this pair on!!!
    Do you have a support group in your area? Even an informal one of fellow survivors who know the emotional rollercoaster? It seems that might be invaluable to you. Check with your local ACS ~ they are a great resource.
    Just to put things into perspective, your feelings are NORMAL!
    Hugs to you and your daughter...she has seen a part of life no one should have to. Maybe there is a young peoples group in your area. And if not, it is likely that there are other kids who's parents have gone through treatment. Maybe you all can get together for ice cream and videos or something. Again, start your own group for children of cancer survivors!
    I wish you good health and a calm heart. You are not alone in this. You are surrounded by a large family of Kindred Spirits who fight alongside you.
    Hugs,
    Claudia
  • toninasky
    toninasky Member Posts: 102
    #3
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    I know that it is very normal to have these feelings of Fear, but FEAR IS OUR WORST ENEMY. No matter what you have to try and think positive. Think about and read the posts of gals who have survived this beast for quite a few years, and did not have the benefit of the advanced treatments we have had. I had lots of fall backs because of my treatments, pancreatitis, gall bladder, liver problems, but they are gone or in control. I agree it is normal, but using every fiber of your soul to think I DID BEAT THIS BEAST, AND I WILL CONTINUE TO BEAT IT, is your best medicine, for both Mind, Body, and Soul. It will also give your family the strength they need to support you. Look for a Gilda's Club in your area, they were and are a great help to me.

    Go for it Girl, you can do it.
  • Skybuf
    Skybuf Member Posts: 143
    #4
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    Dear Crayonlover.....I am a BC survivor like yourself, I couldn't have gotten thru this with no support from my husband unless I had my church family there for me. I put my trust and faith in God that's what helped me, I am a Christian and this journey drew me even closer to the Lord.
    I believe the most important thing other than listening to your Oncologist and doing all that's possible for recovery is to have a 'positive attitude' I'm sure you've heard that once or twice :)
    It's true though, see a social worker or pastor to help you come to terms with what's happening in your life. We all have our 'down' and bad days no doubt, I was told I only had 3 weeks to live!
    Life's too short to waste on worry and stress, try to de-stress yourself and see the positive things life has, your healthy daughter, God bless her, have fun, don't worry about what 'could be' just concentrate on living.
    My sister told me when I was on treatment, Buffy I could go out and get killed by a vehicle today, so knowone is safe.......I thought about that, she's right, so live life to the fullest, dance when you can, eat dessert, play and love life.
    I do understand where your coming from, hope I'm not just another one telling you to 'cheer up' that's not my intention. I look forward to the day the doc's are finished with me...yahoo....hope I never see another hospital or dr again......:)

    God bless
    Skybuf
  • Susan956
    Susan956 Member Posts: 510
    #5
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    Hey Crayonlover...

    You will have to work at finding your way to being able to Color outside of the lines again.... I found that the time immediately after my treatments finished were my more fearful... I had seen a Doctor for every week for almost a year.... My herceptin treatments were done weekly... So when the Doc said I wouldn't see her for 3 months... it was like... Oh no.... My family didn't understand how much of a comfort it had become to see my Doctor or a Nurse each week... and the routine blood test that told me everything was alright... But with time I started to look forward to the Doc saying it would now be 6 months between visits... I am now about a year ahead of you and the fear has become very manageable... While I am not back to being the old me... I am back to being the new me.. and you know that isn't a bad thing.. I have more patience...I have more empathy... so ... try to take it one day at time... and know that the fear will get better...

    Take Care... God Bless.....

    Susan
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
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    Susan956 said:

    Hey Crayonlover...

    You will have to work at finding your way to being able to Color outside of the lines again.... I found that the time immediately after my treatments finished were my more fearful... I had seen a Doctor for every week for almost a year.... My herceptin treatments were done weekly... So when the Doc said I wouldn't see her for 3 months... it was like... Oh no.... My family didn't understand how much of a comfort it had become to see my Doctor or a Nurse each week... and the routine blood test that told me everything was alright... But with time I started to look forward to the Doc saying it would now be 6 months between visits... I am now about a year ahead of you and the fear has become very manageable... While I am not back to being the old me... I am back to being the new me.. and you know that isn't a bad thing.. I have more patience...I have more empathy... so ... try to take it one day at time... and know that the fear will get better...

    Take Care... God Bless.....

    Susan

    I agree with all....

    1 year past all treatment, and I KNOW you can get cancer more than once....my BC was preceeded by stage III rectal cancer...

    I just feel like I gave 2 years of my life, full time, to cancer....it's enough!

    I am living 'without a net' so to speak...still, 6 months I go to the onc for a check-in...her philosopy is that if nothing's wrong, why worry?

    That said, at the first sign of anything, I call and ask questions, and if the nurse feels it's something, well, then, tests can be done. In the meantime...I'm traveling, and saying "Thank you" every morning...
    If the beast comes back...I'll fight again, but right now, I'm having too much fun!!!

    Hugs, Kathi
  • seof
    seof Member Posts: 819 Member
    #7
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    I am still in treatments, so I am not at the same point you are yet. I am already afraid of recurrence, though. My sister was a survivor for 5 years before she won the battle, now she is in heaven dancing barefoot on the beach with long, blonde hair. I was diagnosed in May of 2007. I know each person is unique, and my treatments have been very successful so far, yet fear persists. I have to decide each day that I am not going to let it prevent me from enjoying my loving family, supportive friends, and great job. My Sister's favorite response to folks was, "I have cancer, but I am not sick". She was not an idiot, or blind to the debilitating effects of the disease, she just didn't let it interfere with living. I am determined to do the same. I have a husband, an 11-year-old, and a 13-year-old. I think fear of recurrence is a fact of life for survivors and their families. Bravery is not the absence of fear, it is doing what has to be done anyway. And it is true that anyone can die of anything (car accidents, crazy people shooting up a restaurant....)any day...we have to live our lives anyway.

    Give your daughter a hug and go do something fun and crazy to celebrate that you are not dead yet! seof
  • Unknown
    Unknown
    #8
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    Crayon...
    As you can see so many of us know exactly where you are coming from.
    I had breast cancer in 1986......breast cancer in 1988.....mets in 1996.....
    and TA DAH.... here I still am. Doing good. Just a little older and wiser.
    So you see, if you have to overcome again, you can and you will. In the meantime, concentrate on what's good in your life NOW and leave tomorrow for tomorrow.
    By the way, my daughter was 12 when I was first diagnosed (son was 1 1/2)......they are both good, strong adults now. Hard as it all seems at the time, you will look back and see how all this has made all of you better people. God bless.
  • Kitty3571
    Kitty3571 Member Posts: 48
    #9
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    Crayonlover,
    I hear ya girl - I'm in a similar place as you, right now! 1-1/2 years ago, 2.2 cm tumor that I found, Stage 1, clear nodes (thank God) and lumpectomy - Followed by treatments of Adrymician, Cytoxin, Taxol, Herceptin for a year and 36 radiation treatments to say the least, it's been a ride - All I can say is we who are diagnosed as Her2 are very lucky to be able to receive Herceptin, I've been told that since Her2 type cancer is very aggressive and before Herceptin, chances of reoccurrence or survival wasn't as good - My fear was same as yours - What now? What do I do now that I'm not on any medication to keep this beast at bay - What now that I'm not seeing doctors several times a week - It's really scary - Of course, like everyone else they all tell me including my ONC that "these feelings are normal" but that doesn't help sometimes - Sometimes the fear is just overwelming - I don't let it control my life but some days are harder than others - Support does help, to personally speak to others who have "been there, done that" - I asked my ONC, why only one year treatments with Herceptin, I have this visualization that since I stopped taking Herceptin that my cells with start "making cancer" again - The only thing they can tell me is "well that is what the current studies are based on" - They might change it in the future and I think they put you on it for a longer period if you get mets - The only thing that gets me through the day is this: I keep pay close attention to my body and how it's feeling - If I get concerned about something, I call the doctor, they can test me - Don't want to cry wolf all the time so you have to be smart about it - If something comes up and bothers you for a week or two and doesn't subside, then maybe - Plus if it happens to come back, I just deal with it again like I did before, what choice do we have? It has certainly made me a stronger person to say the least - Just stay in tune with yourself and keep an eye on your health - Best wishes to you and your family! Kitty
  • 3cbrca
    3cbrca Member Posts: 206
    #10
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    I don't know if I have any advice, but I have a ton of empathy! I'm actually very upbeat, but I can't stand the cheerleaders. I've recently finished 5 months of chemo a bilateral mastectomy and whole lot of radiation. I have a great friend whose daughter has leukemia and I find that she's one of the people who understands the fear and lets me talk about it without thinking that I'm being negative. She just understands and lets me talk -whether I'm sad or making jokes about dying. I often have days where I just let it sink in that it may recur and let myself get comfortable with it. I do what I can to stay healthy and work hard on accepting that the rest is out of my control. I'm 3C and not sure I'm out of the woods. I'm scheduled for a PET in two months, but if it were up to me, I would have PET scans as often as pedicures. I haven't been to any support groups for cancer (this is my second time in 4 years - colon ca 3+ years ago), but I'm guessing it's a good place to start to find some people to talk with who really get it!

    I also have a daily meditation book that deals with acceptance. I don't read it everyday anymore, but it has really helped on those rough days...

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