Any idea when you get the "all clear"

irisheyes14
irisheyes14 Member Posts: 42
edited April 2016 in Breast Cancer #1

Thanks everyone.  

Comments

  • Just_lori6
    Just_lori6 Member Posts: 76
    8)

    Hello Irish eyes,

    I was wondering the same thing. I just had my last chemo on Monday and am going to start radiation soon. I asked the nurses at my last couple chemo sessions and two of them said they usually have your return every 6 months to do blood work and or tests to make sure your all clear. I guess every case is different but I would think as far as making sure it is gone most of us would be similar. I had a double mastectomy November 19th and started chemo in December. When I started chemo my doctor said they would do a pet scan once I am done to see if they got all of the cancer. I have a friend who had cancer a couple years ago and she says she went for a pet scan about a month after her last radiation visit and then she went another two times over the next year to get blood work & since she was clear she goes once a year for blood work until she reaches the 5 year mark. She said once your clear for 5 years your done getting monitored. 

    I worry that even if I get the all clear I will still worry about having cancer. It has been such a scary experience I can't imagine it just being over just like that. I have an appointment with my oncologist next week and I'm going to ask him when I get the all clear and how they determine it. Sorry, I don't think this was much help just wanted you to know your not alone.

    XO~ Lori

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    8)

    Hello Irish eyes,

    I was wondering the same thing. I just had my last chemo on Monday and am going to start radiation soon. I asked the nurses at my last couple chemo sessions and two of them said they usually have your return every 6 months to do blood work and or tests to make sure your all clear. I guess every case is different but I would think as far as making sure it is gone most of us would be similar. I had a double mastectomy November 19th and started chemo in December. When I started chemo my doctor said they would do a pet scan once I am done to see if they got all of the cancer. I have a friend who had cancer a couple years ago and she says she went for a pet scan about a month after her last radiation visit and then she went another two times over the next year to get blood work & since she was clear she goes once a year for blood work until she reaches the 5 year mark. She said once your clear for 5 years your done getting monitored. 

    I worry that even if I get the all clear I will still worry about having cancer. It has been such a scary experience I can't imagine it just being over just like that. I have an appointment with my oncologist next week and I'm going to ask him when I get the all clear and how they determine it. Sorry, I don't think this was much help just wanted you to know your not alone.

    XO~ Lori

    NED

    They never say "all clear", but they do say no evidence of disease, or NED.  And that's why we have our follow-up appointments, mammograms, MRIs, scans, blood work or whatever our particular pathology calls for.  To make sure we are still NED.  

    The worry gets much easier as time goes on.  Really it does.  And the likelihood of having a recurrence diminishes as each year passes.  NED is a good thing.  May we all remain NED!

    Suzanne

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    Hmmm

    I don't think there is an "all clear" that we get. We can know for the present how things are, but we are all knowing that we need to stay on top of getting regular checks. 

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    I never heard all clear....i

    I never heard all clear....i had mammo every 6mths for long tme then finally made it to once a year..(party time)

     

    Denise

  • twnkltoz
    twnkltoz Member Posts: 169 Member
    It's definitely different for

    It's definitely different for everyone. I had chemo before my UMX, and the path report from surgery came back NED. Keeping my fingers crossed for all of us!

  • Gm2873
    Gm2873 Member Posts: 65
    All clear

    i was "all clear" for 20 years after a mastectomy on the right side and chemo. Then it came back on the left side and matastesized to my sacrum. After two years of chemo, surgery and radiation, I'm NED again. I'm proof that even if you're Stage IV, you can get to NED. I take femerra daily and go for herceptin infusion every 3 weeks, but I'm living a good life and plan to stay NED another 20 years. By then, I'll be about 90!

    new drugs and treatments come out all the time. BTW...after the first cancer (which was Stage I), I saw my oncologist twice a year until year five, then I went to once a year with a mammogram from then on until the cancer returned. So that worked out to 15 years at once a year. It was comforting to me that my doctor was keeping tabs on me.

  • bonbondidit
    bonbondidit Member Posts: 116
    NED

    You will most likely at first do a three month evalutation after your done treating. After that, they will bump you up to a six month check up if there is "no evidense of disease " then it will bump up to a yearly check up.  I am at the yearly now and take tamaxofin for the next 5 years. I recently asked for a PET scan just for good measure and they granted it to me since my insurance has no problem with me getting one. I realized I have only had a bone scan so far.

    On another note - it IS weird to just stop treating when your momentum has been so great in your fight to get this crud out of your system and off of you. You live with the thoughts of the fight minute by minute at first and then hour by hour. It becomes your life for a while and one day, you cross the finish line. It's a high of happiness at first, then at times you will feel like you're doubting your happiness. Should I be happy? Am I safe now? Should I plan a just in case I relapse plan? All of these thoughts crossed my mind and at times still do. One thing that I got a little caught up in was doing better, doing more and then having a real down day that caught me by surprise, like low energy. Which of course reminded me of chemo tiredness which reminded me I am a recovering cancer patient. BUT I THOUGHT I WAS BETTER NOW??? Why am I so tired today which made me depressed thinking it was a reoccurance.  What it is is my new norm for me in particular. I can do two or three days going strong and then I have a weak day or tired day.  I finally noticed a pattern after a few weeks of that and found myself more at ease with that knowledge.  I have to assess what I did that week and does it make sense that I am this wiped out.  I learned again to listen to my body when it talks. SO I allow my downtime on the couch and watch all kinds of good tv and or movies. I will usually bounce back full steam by the next day.  That being said, if it's a day in and day out type of tired than I know to make an appointment and get examined.  Life IS great! Regardless if I am a stage 3a invasive cancer patient with no breasts at 44 years old. Food tastes great now, I've found the ten pounds I lost during chemo and I like it!

    Hugs,

    Bonnie

  • irisheyes14
    irisheyes14 Member Posts: 42
    edited May 2016 #9
    Thank you all.  May we all

    Thank you all.  May we all have many healthy NED years ahead of us.