Are you afraid of follow-up visits?

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ByFaith
ByFaith Member Posts: 270
edited June 2014 in Stage I Breast Cancer


I'm 3-1/2 years out from my BC dx and go for follow-ups to my MO every 6 months. My general care, physicals and laboratory tests are managed by my PCP and my MO has access to these. I'm on a schedule of one mammogram a year and one BMA (to check bone density on AI therapy), alternating visits, and of course a physical exam each visit. I have a *very* difficult time with breast self-exam since post-treatment, so my MO suggested I leave this exam to them during 6-month follow-ups with them and my yearly PCP physical exam; their recommendation, since -- for me -- literally everything feels like a potential problem and causes false *high* anxiety. I used to have OCD and it returns when I'm anxious, so I don't perform self-exams short of general bathing and observation. My original tumor was not felt as a lump, rather it was found only on digital mammogram.


This week I have another BMA, which is likely to show osteoporosis. However, it's the physical exam that produces SO much anxiety for me in the days leading up to my visit. My MO couldn't be more uplifting or kind, so that's a blessing, but I have a question ...


If you're ever afraid of follow-up visits, what are your coping strategies and how do you calm yourself? I do pray for myself and others, but still get anxious. I feel ashamed even asking due to my early stage DX. Although I do have anti-anxiety medication, it just makes me sleepy AND anxious. Again, this visit will be a BMA (always includes some sort of spine x-rays) and a physical exam. How do YOU cope if you become anxious? I don't want to live a life of fear. Thanks.

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  • doxie
    doxie Member Posts: 1,455
    edited November 2013


    Dawnam,


    I'm not sure how much I can help, but I can commiserate. Every time I go into the Oncology center, my BP shoots up. I can go to RO, PCP, GYN and no problem. I have really bad anxiety when going to the dentist and take a diazepam. PTSD from two very bad incidents as a kid.


    I use deep breathing, spend some of that anxiety energy by exercising extra, tell myself that this exam is going to give me one more year/six more months of breathing room, someone else will examined my breasts so the burden is not on me. (I found my lump, not the mammogram 5 mo before.)


    I was lucky going into BC in that I was well established with a therapist. She had years of experience with a young women who had BC, BMX, LX, and was single. She helped me greatly throughout this. It may be helpful to see if a social worker, psychologist, or psychiatrist experienced with cancer patients could help.


    I hope you can find something to help.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2013

    Oh gosh, I am still SCARED to death of follow-up visits. I visualize myself at a beach and try to think of the waves going in and out, in and out while I'm waiting & usually end up crying in the car when I leave (even though the visits have always had good news). It gets a little better with time, but not much!

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  • New-girl
    New-girl Member Posts: 358
    edited November 2013


    I get very anxious every time I step off the elevator onto the cancer floor for my testing. I breathe deep and try to bring my IPAD so I can mindlessly shop the web to keep my mind from wandering. I feel guilty seeing all the bald people waiting while I look very healthy and normal. I feel like a crybaby getting so emotional as the PTSD starts flooding back. I go again this Thursday and this time I am most dreading the weigh in as I know I have been eating my stress this time.

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  • Annette47
    Annette47 Member Posts: 957
    edited November 2013


    Seeing the docs hasn't bothered me much, but I dreaded the 6 month mammogram in June, and am now terrified of the one year mammo coming up in December. I thought this one would be better, but if anything it's more stress-inducing, mostly because I have an irrational fear that they'll find something on the "good" side. I don't mind the docs or the physical exam though - I wonder if that's because it was the mammogram that found the cancer originally, so that's become the focus of my fear?


    Oh, and I understand the OP not wanting to do self-exams ... every time I check the good side, I find a new lump - I've got fibrocystic, lumpy breasts to begin with and none of the new lumps feels any different than the old ones, but still ... I think I'm better off letting the professionals handle it, LOL.

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  • ByFaith
    ByFaith Member Posts: 270
    edited November 2013


    I hate to hear that so many of you are also fearful and anxious of your Oncology follow-up visits and tests, but also a bit relieved to see how much we have in common.


    I, too, feel so guilty seeing all the people with advanced disease that, by the time I see my oncologist, I feel guilty mentioning my very minor complaints compared to what I know those women are going through. If I have to bring up a physical concern related to my Arimidex, for example, I tell the oncologist ahead of time I know these are very minor complaints compared to others and that I understand how blessed I've been. She always tells me every patient's concerns are important and I shouldn't feel that way, but I do.


    About PTSD ... Just starting to see some remarks from others about it here, and I believe I might have it. For example, waking up has never been the same for me since my diagnosis. I get over it quickly, but it's a feeling of dread instead of joy. Certain present-day circumstances that relate to other key events that happened during the critical time of diagnosis also activate feelings similar to PTSD. I've been on an anti-anxiety med for years, also an antidepressant. I think I need to check with my doctor if this antidepressant is doing its job; all it does it keep me out of deep despair and IMHO doesn't really help that much. It helped more before Arimidex.


    I think what will help me during my follow-up visits will be (1) visualizing leaving happy and relieved and (2) keeping all of you in my thoughts. At the hospital, I silently pray for others I see there as I wait and, if we meet eyes, I smile at them. It seems some people look away from patients who have lost their hair from chemotherapy. I want those women to know I think they're so beautiful.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited November 2013


    Hi, Dawnsm.... I'm so sorry you are going through this. I know you said you're on anti-anxiety and anti-depressant meds... are you also seeing a counselor?


    As a retired counselor, I really think that the meds work the best when you have the opportunity to sit down with a non-judgmental therapist and just be able to clear your mind of all that is bothering you. I totally get the not wanting to get out of bed. That was me a few months ago on Arimidex. I suffered from crushing depression on that med. I am now on Femara.


    I do see a therapist on a regular basis, and it has helped immensely. I don't have to keep feelings bottled up inside, or worry about burdening family and friends over my mixed emotions.


    I am OCD about many things, but not breast cancer.


    I honestly believe that the day I had my BMX was the day the cancer was removed from my body.


    I believe that every day I swallow that little brown pill I am keeping the cancer from coming back.


    I do self-exams, but don't spend much time on them because I never had a lump in the first place. I let my MO do that every three months when I see her.


    I won't be having any mammograms because I have saline implants.


    At some point, I think you just have to take a leap of faith (and for some, this is REALLY about faith) that you are doing the best you can, and that right now, you are a person who does not have cancer.


    If that changes in the future, I'll deal with it then. But for now, my days are precious, and I don't want to ruin them by filling my head with the what-if's that may never happen.


    I am sending you big cyber-hugs, along with prayers that you can find some peace of mind.

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  • kaza
    kaza Member Posts: 284
    edited November 2013


    Well that time again mammo in just over a week. Need to get my glass half full again, feeling anxious, for me it seems worse this time perhaps as time goes on we become more aware of the could happens if you know what i mean. Also i am finding i am looking at my life in a different way, lots of things i feel i need to change.....kazaxx

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  • Crescent5
    Crescent5 Member Posts: 442
    edited November 2013


    I am almost 2 years out, and my truthful response is no. I am no longer scared to see my onc. I've had BMX, so I don't ever have to suffer a mammogram again, so that may be part of my feeling of relief. Like Blessings, I feel that my cancer was removed. If it should come back, I will have plenty of fear to catch up on. Right now, I am cancer free. It's an amazing feeling. Let yourself believe.

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  • kaza
    kaza Member Posts: 284
    edited November 2013


    Crescent5.....i to would like to be feeling like you, we have no control over our emotions, there are so many factors to consider, age, general health, and where our life is at. One cannot generalize we are all different and cope in our own way. .....I am genuinely terrified of these appointments and i am trying my hardest to overcome it, there is no right or wrong way to feel.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited November 2013


    Kaza, I hope you didn't think I was implying anyone who felt differently than me was wrong. I'm just giving my truth as asked. Hopefully, others will see that you can get to the other side. Some people don't lose the fear, and that's OK too. We're all unique human beings.


    I'm an exceptionally emotional woman. I suffer from anxiety disorder. I was actually phobic of drs and hospitals before my mammogram call back. How I've arrived at this place is really nothing short of miraculous. But I got there. It took time. It took respect of my fears. It took a little denial, and it took some faith. If you get there, wonderful. If you don't, that's OK. My point is, it's not impossible to get here. =)

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2013

    Sometimes it helps to trick yourself. Set aside a specific amount of time to worry, and make yourself turn it off once the time is up. Also distraction is great; retail therapy, lunch date with friends etc. Keep yourself really busy before appointments & plan something really fun for once your appointment it over. Also, accepting the fact that you will be nervous, but you will get through it, makes you feel a little more at peace.

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited November 2013


    RuthB this is exactly what I do. I set aside a specific time to worry. I also pray. In the end, I quote my DH "If it is, it is. If it isn't, great. Worrying can't change the outcome of anything and there is no dress rehearsal for any bad nor good news.".


    That said, am about to go for an overdue (due to insurance) MRI on remaining breast that had downsize surgery a year ago. It was a massive mess with a hematoma. I know it will light up like a Christmas tree and look cancerous as they told me this is what happens with the scarring. Anyone else have any experience with this? I can't get my head around a mammo, squishing this messed up boob doesn't sound like anything I want to entertain. I will go with the MRI though. About to end my 5 years of arimidex and only ended up (ha!) with HBP, higher cholesterol which I hope will all go back down. Also ended up with a weaker right leg and a painful hip. Need a dexa too, but can't til the insurance companies get it together and I have insurance!

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  • sandcastle
    sandcastle Member Posts: 587
    edited November 2013


    OMG!! YES.....I get very upset when the time is approaching....I am being watched by my Breast Doctor.......use to see him every four months...now down to six.....will be three years in December.....now down to mamo once a year......have resigned myself to what will be will be......Live in the Moment.......and keep myself around people who are positive....also have a cancer free zone.....people that do NOT know about what happened......Liz

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2013

    I finished off my 5 years of Arimidex a year ago. I just had blood work done for an upcoming physical & my cholesterol is back to normal! Whoo Hoo! For reducing mildly high BP, try eating 2-3 ounces of at least 70% dark chocolate (has to say 70% or more....I eat the 90%) everyday. I am not even making this up!!!!! And, (my other natural advice) a serving of prunes a day can actually BUILD bones.

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  • robinjanks
    robinjanks Member Posts: 2
    edited November 2013


    Hi, I have extreme anxiety when I see my oncologist, My oncologist basically takes my bp which is always elevated because it reminds me of the breast cancer. This week I had a mammo/ultrasound. I asked the tech if she saw anything. She said no but she needs to double check with the doctor. Ten minutes later she called me back to take a film of my good breast. I started to cry and she assured me the doctor just wanted to take a look at some fatty tissue near my nipple. It took me a day to get back to my normal self!!!!!

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  • jwilco
    jwilco Member Posts: 486
    edited November 2013

    ByFaith - as you can read, you are not alone.  I feel a lot of worry prior to my follow ups too.  I've been trying to do meditation breathing while waiting and it's helped.  I also focus on it being positive results and then when that does happen I thank the heavens and let go of the stress!  I also have trouble with the self exam which is scary for me since I'm the one that found my nasty little lump. 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2013

    I am 21 months out. I like my followup visits. They make me feel safe and well cared for. Once I conquered the tamoxifen hurdle, I decided to sit back and relax. I've done what I can. I liken it to flying in an airplane. I am not in control, and there is nothing more I can do, so why worry about it.

    Crescent5 - So good to "see" you. I hope you are doing well!

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  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2013


    I am 3 years out in January 2014 and the poster person for anxiety even before I was DX. I used to get so nervous when I had a mammogram scheduled. I literally made myself sick. I recall one of the radiologists telling me....in her southern drawl...honey you are doing everything you can...which of course I was but still got BC. My sister has it too but so apparently we carry the gene. Anyway I have an Oncologist visit scheduled tomorrow. My 6 month appt. I get more uptight before my mammograms than my ONC visits. She doesn't do the tumor marker test because she said I have an early stage BC and there is no reason to do it. Plus insurance companies buck on this test too. I try to think of other things and keep as busy as I can. Helps a bit. In the long run though I don't think I will ever be totally relaxed. Its like I have been branded and will always look over my shoulder. That's life and its in God's hands. Diane

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  • fadheir
    fadheir Member Posts: 63
    edited November 2013


    Oh yes,


    what can I say, my last visit i was suffering from hand pain and was terrified of Mets, but thanks God it was artheritis.


    I always review new studies that speaks about surviving rate and new treatment to inspire my self. and every time i really feel panic

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