Concerned or just completely totally afraid?

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Lmflynn
Lmflynn Member Posts: 373
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

hi ladies, thought I should write and ask for some calming words....I'm just so afraid all the time... Every ache, every pain... I just past my three year mark post chemo... And my back and hip hurt... Scared of mets ....Last year I had a PET for another lump I was afraid, and the year before that I had one for hip pain...I'm headed to my PCP today to try to get a handle of what should I be afraid of... I read Mr Google way way too much and find myself in the good result stories and the not good stories... I want to be happy and stop living with so much fear....but then I'm afraid if I let my guard down....

Does anyone feel like this?...what can we do?....it can't be healthy to be anxious all the time.

Thanks for listening

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2014

    Lmflynn, I agree with you, it cannot be healthy to be anxious all the time. I am still in rads, so still in treatment, and then have AI to look forward too. Wish I could be helpful, you will get lots of posts, don't worry until you have something to worry about. In my mind if you are worried about it obsessively than you might ward it off...Crazy huh ? Yes it is....I have to get this behind me, it is going to take a long time.

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  • Lmflynn
    Lmflynn Member Posts: 373
    edited January 2014

    thank you for the post...yes ...as if we have any real control....I hope others chime in...I'm a real mess

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited January 2014

    I feel the same way!  I have had an off and on ache/ swelling in my hip for about 3 months. It has gotten much better over time but I still worry! I had a clear ct scan in September but I still worry!! I also have tinnitus and am in constant fear of brain mets!  I wish I could relax as the worry just makes things worse!  

    I hate to live like this but how many scans can a person have? I just have to believe everything is ok!  

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  • lekker
    lekker Member Posts: 594
    edited January 2014

    Back pain is extremely common in the general population.  So are lung nodules.  And liver lesions "too small to characterize".  But we are not the general population.  Our personal history of invasive cancer - no matter how low the risk of recurrence - puts us in a different category when diagnosing symptoms.  Our oncologists should be educating us on when we should be concerned - general rules are things like if the pain doesn't subside with rest or tylenol and lasts more than two weeks.  We have to find a balance between vigilance and obsession.  I don't know if I've successfully found that balance yet.  I fully understand that I am very low risk for recurrence and the only things I can control are taking my tamoxifen and trying to exercise and maintain a healthy weight.  But that doesn't mean I'm going to ignore my body when it's telling me something is wrong.  Since you used words like "living with so much fear" and "anxious all the time" I'm going to suggest that you ask your PCP for a referral to a counselor who specializes in cancer survivorship.  Yes, you have to be aware of the signs of recurrence but you also want to be able to enjoy the life you have today.  Accepting a new normal (whatever that may be) is a process, and it's OK to receive some help and support as you go through it.  I wish you all the best.

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  • Lmflynn
    Lmflynn Member Posts: 373
    edited January 2014

    thanks lekker, thanks for your post... Completely agree...it all gets away from me sometimes... 

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited January 2014

    Hi, just want to chime in because I feel like this sometimes. Irony is that Femara causes so much bone and muscle pain, moving around all the time. Hard not to let one's mind wander. But....my gp had very good advice that I try to live by. He said that for the most part cancer pain doesn't go away, it tends to get worse. So I've learned to wait and all of my back, shoulder, hip, etc pain, has resolved. Comes and goes. This really helps make me calmer. 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2014

    I think the fear comes along with the diagnose, and since we never lose the diagnose, no matter how well we might fare through the years, one never loses the fear.  I know I haven't and I'm triple neg and approaching 5 years since diagnose.  While the fear no longer incapacitates me every day, and I have definitely resumed living almost a totally normal life, I do have to say, any new pain, muscle pull or ache anywhere in my body and the butterflies are automatically flying around my innards. I never ever thought when diagnosed that I would reach the 5 year mark, and now that I am approaching it, I feel a fear deep in my gut that I keep trying to brush aside.  Most times, successfully, others - not so much.  Recently read of a triple  neg sister 8 years out and now it's back.  Very unsettling for me to hear and very horrid for her. to go through.  My heart aches for her as I realize that could happen to any one of us, as this disease is just such a crap shoot.  I then think of all the positives I have going at the present time, and think of the strength and perseverance our Stage IV sisters have every day of their fight, and I feel humbled and small.  What will be, will be, whether I like it or not, so I plow on enjoying each day that I have.  I wish there was a magic pill that one could take and not have this constant anxiety and fear of what might be right behind me.  So, long story short, you are most certainly NOT alone in your fear.  I wish for you, and each of us with this disease, all the best, always.

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2014

    The first two years out of treatment i was convinced I had bone mets, brain mets, I had MRI's I was in constant pain.  As soon as the MRIS came back fine, the headaches were gone (brain mets) and the back pain would get better.. They did find degenerative disc disease in my back, and I have just come to the acceptance that chemo did a number on my body, (nerve pain) and that i will always have some kind of discomfort.  Unless its so bad I cant function I dont intend to do any follow up, and I dont worry anymore really.  It does get easier

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  • Gubbyann
    Gubbyann Member Posts: 34
    edited January 2014

    Thank you so much LRM216...By reading your post, you have given me extra hope...I am 62 and was DX last May with the same exact BS as you had...Finished chemo and I'm 7 days into my rad and looking forward to the end, as I am sure many are...In spite of all the side effects, and I have many, I am feeling better and stronger each day...I know how you feel about those strong feelings you get deep down in your gut...Every little ache or pain turns you inside out...I guess we have good reason to feel this way, but at the same time I too feel humbled and guilty when I see all our other sisters going through worse...And the children...It breaks my heart....I really have nothing to complain about...We never know what the future holds for anyone of us, but I'm going to finish this, and with Gods help get well, and hope I never have to do this again...That's the best any of us can hope for...God Bless you LRM, and may you continue to do well for many more years...

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited January 2014

    fightinhard. 

    I was do happy to read your post as I am exactly the same as you!  I have had all sorts or aches and pains and am always convinced it is mets until the test comes back clear and then I am fine again!! Crazy!!

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  • Lmflynn
    Lmflynn Member Posts: 373
    edited January 2014

    it is so nice to know,,, I'm not crazy, I'm not paranoid, I'm not overly sensitive... It is just part of the journey...some can push the fear aside, some can deal intellectually and others need proof (scans etc) ....I'm all these things at different times and with different aches...mostly I am the I need proof....I have and am praying for the grace to live without so much fear..to live in the moment....in the meantime I'm thankful for my PCP...who treats me like a normal person who has had cancer...and helps me.  Thank you ladies... I'm also thankful for the sharing....

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  • Kathie100
    Kathie100 Member Posts: 108
    edited January 2014

    Just got back from having a bone scan due to hip, leg and back pain. They did the whole body scan then ask me where did you say your pain was. I told them hip and back. They said they wanted to get an additional picture of skull and neck and an additional one of spine   I watched the screen as they did it. It was a dark picture of my neck with about 5 or 6 bright spots down my neck. Then when she did the spine with my arms over head she came over and turned the monitor so I couldn't see it. She then made me wait about 45 min so she could send results to radiologist for him to review and see if he needed more. I don't go back to oncologist till Tuesday and now I'm worried as heck. Was this experience normal as far as additional pictures and making me wait   how do you handle the waiting?  I've told my husband not to discuss it all weekend. Lets act like it never happened. This has been a tough time for me. I just finished radiation Christmas Eve and it was gonna be a new year for me.


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  • Lmflynn
    Lmflynn Member Posts: 373
    edited January 2014

    Kathie, all I can say is I understand...I had X-ray's Monday and they had to come move me and take more... I asked the tech are you doing this because you see something? He of course said I couldn't say anything even if I did....and then they told me to go back to MD office.... I was sure it was bad news..but all were clear... Try...and I know we convince ourselves....but if you can try not to worry....try to enjoy your weekend... I will be thinking of you

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited January 2014

    So sorry that you have this worry. When I had my bone scan I was called back for extra images and my scan was clean. I am assuming they injected you with the dye?  In my case what had happened was that the dye had clumped together on me and it showed something weird. I also have a friend that is a tech for where they do bone scans and she warned me in advance that it is common to take extra images and not to panic about it. I know it is not easy to do but try not to read into anything the tech does. I always feel like they are looking at my scans in horror and they have always come back fine so far. 

    Hugs 

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2014

    Kathie100, I agree with Lmflynn, you are so soon out of treatment, our brains are still in overdrive with worry, stress, what ifs...I am still in rads, not sure how I'm going to get on with life and not be a basket case. I still have all sorts of leg, hip pain. I just assume it is from chemo, & not being as active as I normally am, was in my old life...

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  • Kathie100
    Kathie100 Member Posts: 108
    edited January 2014

    Thanks for the responses. My oncotype number was 19 which isn't bad but has me concerned about recurrence. My granddaughter just got here. She's 7 and precious so I know she can keep me busy this weekend. She cheerleads tomorrow and I always enjoy that. I just need to stay positive until Tuesday and quit worrying. I ask what the Tech thought and she said she couldn't comment.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited January 2014

    Lmflynn - No, you are definitely not the only one who worries....I think it comes with the territory. 

    However,  I really like how lekker put it: We have to find a balance between vigilance and obsession.

    Regardless of the diagnosis or treatment, I think we've all learned how to be especially sensitive as to what's going on in our bodies.

    Right now, my chances of a recurrence are less than 1%. But as my MO says, they're not zero. So I had my surgeries, and I take my Femara faithfully, and I try to exercise and eat right. 

    But just like there was no way I could have prevented BC in the first place, I don't think there is any way I can change my behavior or lifestyle to prevent a recurrence. I had to consciously start letting go of the fantasy that I had control in all of this.

    Even from the very beginning, I had no idea what I was in for. My faith kept me sane (most of the time!) Today, two years later, I've realized that every day I spend worrying about some new ache or pain, is another day I have lost to this disease.

    But why would I want to throw away my days like that? I have to go on the premise that following my treatment, I was cancer-free, and until someone tells me differently, cancer-free I'll be.

    I did have an issue with spinal pain a few weeks ago... the PCP did an Xray and found a disk that is pressing into my spinal cord. Well, I'm 63. I have a sucky spine! My first thought was not mets, but after a while, it did enter my mind. All I could say was if it is, it is, and I'll deal with it then. 

    Someone here on BCO had a great saying: "Don't go there until you get there."

    In other words, all the agony and worry and anxiety you find yourself in over something that may never happen in the future will only rob you of all your todays. 

    Wishing you continuing good health, and most of all, peace of mind!!! 

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