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PTSD and fear

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  • purplecat
    purplecat Member Posts: 226
    edited February 2020
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    I'm reading through this thread and relating to it. I'm in the midst of a prolonged workup for an ovarian cyst that seems likely to be benign, but I just can't shake the fear that it won't be. I'm supposed to get one more blood draw (3 numbers) before seeing the surgeon and I just can't get myself in there to do it, even though there's a good chance the numbers would be normal and therefore reassuring. It's this sense that suddenly I don't have final say about what happens to my body; I keep being ordered to subject it to needles and radiation and ultrasound probes and groping, and then there's a waiting period where other people know more about my body than I do, and then they tell me what they find out and send me for another needle or radiation or probing or groping. Why can't they just leave me alone? I'm using every strategy I've ever learned in therapy for anxiety (I've gone at least 3 separate times) and it sort of helps, but there are these waves when it overcomes me and I just can't stop thinking it's going to be cancer and I'll have to again tell my family that I have cancer and then go get chemotherapy, which I didn't have to have for the breast cancer.

  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    So relate, only sub in renal cancer instead. I had a thing removed from my arm during one of my 6 month post-melanoma check ups. My dermatologist was confident it was some benign thing only it was a very rare kind of tumor that's associated w/ renal cancer.

    So I had to get an ultrasound and oh hey, yup you have a few tiny tumors (not cysts) on your right kidney. So let's get a CT with and without contrast. I'm allergic to contrast dye and even with the drug protocol I still got hives. And yes, I have little tumors but the radiologist is "fairly confident" they are benign.

    That was a simple paragraph to type and it doesn't begin to convey how I felt for those 10 days. Fun times.

    Next up is my first post-breast cancer scans in April. More fun times, I'm sure.

  • purplecat
    purplecat Member Posts: 226
    edited February 2020
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    Thank you for sharing that, edj - that's so close to the experience I've had with this ovarian cyst. I understand that they want to catch things as early as possible, not to mention the very real need to cover their own behinds, but I wish somehow the impact on mental and emotional health could also be factored in when they decide to put us through all of this just to be certain all is well. And I've realized that it's not the first time in my life I've gone through a prolonged series of testing and anxiety over something that in the end was no biggie, including a couple of benign breast lumps. On the one hand, it's always great to hear that it's no big deal; on the other hand, it's led to a reluctance and anxiety to get even routine screenings because the subsequent testing is so stressful and time consuming, not to mention EXPENSIVE. I'm supposed to get my first colonoscopy. Have been getting reminders for about six months. Ignoring them because it feels like a ticket to yet another crazy train whose caboose is likely "good news, all is well!" but whose cars are test after test, and I don't know how long that train will be and I just don't have time.

  • candilea
    candilea Member Posts: 15
    edited February 2020
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    Hello,

    I just wanted to chime in here, because this topic hits home for me right now. I was diagnosed in April last year, and really didn't have the fear set in until my pathology report came back, in September. I thought it was all going to be fine. Then it wasn't, and the fear hasn't left since, and at times it's all there is. It hangs over everything.

    During treatment, my mother passed away from bone marrow cancer (myelodysplastic syndrome). I started radiation on the day I viewed her body for the last time. It's all so tied up together for me, her illness and my illness, and it's been a bit of a mess.

    I am seeing a psychologist who is doing some EMDR / bilateral brain stimulation work with me, helping to process some of my thoughts, fears, and feelings. It's helping, which is amazing. The fear is there, but it has less of a hold on me.

    I feel for all of you, all of us, and I wish us the best. There is help, there can be hope. I'm thankful for this board!

  • [Deleted User]
    [Deleted User] Posts: 0
    edited February 2020
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    ctmbsikia: I'm thinking of you and I know the other ladies are too.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited February 2020
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    The most recent episode of A Million Little Things included a segment about a character who has been treated for bc and a recurrence. She was in for her 6 mo check and was given the all clear. Her friend couldn't understand why she wasn't elated and said, “you got your life back." She responded, “yes, I get my life back 6 mo at a time." This struck me like a lightening bolt.....it exactly describes how most of us feel, always fearful of that 6 mo check.

  • claireinaz
    claireinaz Member Posts: 693
    edited February 2020
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    I don't always mention this because it's still too terrible to share sometimes, but I trust you guys. When my husband died from oral carcinoma in 1996 we had been married 3 months. He was given the all clear after his intense treatment in summer 95 and we got married late summer that year; then he had signs of metastasis on our honeymoon. Oct 13 we got the terrifying news that he had less than a year to live. He lived 3 months after that.

    I share this only because it was shocking and the trauma was caused in a matter of minutes-I had no control over anything, even though we had planned a happy long life together. If you research PTSD, those kinds of experiences create patterns in the brain that give rise to PTSD. Back then I had no idea that I could even experience PTSD; the condition was reserved only for combat vets. We were still learning about it at that point.

    My own 2011 dx brought everything that I had experienced in 1995/1996 with hurricane force.

    Claire in AZ

  • peregrinelady
    peregrinelady Member Posts: 416
    edited February 2020
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    Claire, thanks for sharing. I, too, experienced PTSD upon diagnosis, 7 years after my twin sister passed away from BC. Unfortunately, she died unexpectedly from a reaction to chemo, after almost 4 years of MBC. She was in ICU for a week (of hell) and I was the primary person there. Her husband was home with her son and my mother could not handle seeing her in the hospital until it was time to say goodbye. I was the one who took care of arrangements mostly and felt I had to be strong for my mom and family. Within 6 months my father was diagnosed with pancreatic cancer and passed within 6 weeks. I cried every day for a year but I never sought counseling. When I was diagnosed, I fell into a deep depression (fueled by Tamoxifen, I now realize, and being misdiagnosed) and ended up seeking counseling. During counseling, my main issue was how my sister died. I had never really given myself time to grieve her and my father. The counselor did EMDR with me and it really did help. I also take magnesium and vitamin D every day. I also ended up taking a year off from work and that was therapeutic for me as I walked every day and focused on my health.
  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    claireinaz I've got tears here in Kansas for you. What a terrible loss and what an equally terrible way to lose the life plans you made. Same for you, Peregrinelady . So much loss, so much heartbreak and trauma.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited February 2020
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    Hugs all around ladies especially to claireinaz and Peregrinelady. You just don't know what strong is until you have to deal with something like that. The one thing I learned from BC is if there is trauma in your life you're going to deal with it one way or another, sooner or later. It took me 45 years after my mom's BC death and my own dx to deal with the grief. Thank goodness emotional trauma is now not completely overlooked like it often was in the past. I have many cats, dogs, critters, farm animals, and I see over and over how being allowed space to grieve, even in animals is a good thing. I learn so much about life and death from my menagerie.


  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited February 2020
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    Lucy, it’s so true that our animals will teach us about life if we just pay attention.

  • peregrinelady
    peregrinelady Member Posts: 416
    edited February 2020
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    Thank you, ladies. I believe you are correct, Farmerlucy. A cancer diagnosis has a way of bringing up everything in your life that you may not have dealt with in the past. And yes, my Murphy, a rescue dog, was beside me the whole time. Our daily walks saved me.
  • wallan
    wallan Member Posts: 192
    edited February 2020
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    I am so sorry to hear of the losses I have read here. You are so strong. Peregrinela Hugs to you.

    My trauma group has now finished week 5. Its one afternoon a week. I cried so much at the last meeting I still have a headache three days later. The trauma group is bringing up other traumas in my life that I never dealt with. I stuffed it. I thought it was over. But nope. Its all coming up now.

    The pyschotherapist running the group is wonderful. She says that traumas all tend to get tangled up with other traumas and our life. We overextend the trauma to lots of things.

    The group hasn't relieved PTSD symptoms yet, but its the therapy they give traumatized vets so its expected by the end of 12 weeks, symptoms will be lessened alot. And, it helps the other trauma by working on one bad trauma.

    I am glad I enjoyed as painful as it is becoming. But I have learned things about myself I didn't know. My underlying thoughts.

    As for my Arimidex break, my digestion issues did die down after 3 weeks off. I have been back on it now for about 3 weeks, and my heartburn is just starting up again. Its manageable right now. But new symptoms, pain in my shoulders and arms and sometimes wrists and ankles. Its comes and goes. Is this tolerable? We shall see. I did just join a gym and am going to try to lose weight and get fit. I hope this helps all my mood issues and aches and pais.

    wallan

  • peregrinelady
    peregrinelady Member Posts: 416
    edited February 2020
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    Thanks, Wallan. I am glad that you like the therapist leading your group. Trust is helpful when you are dealing with innermost feelings. Therapy is hard work, but so worth it in the long run. Glad it is a 12 week program. I am dealing with similar side effects from Arimidex, but need to stay on it for 5 more years. I hope that working out helps your symptoms.
  • wallan
    wallan Member Posts: 192
    edited February 2020
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    Hey there:

    So suddenly, I started getting weepy and panicky after about 3 weeks of restarting Arimidex. It is out of proportion to my trauma therapy and I am not generally weepy. So I called the nurse practitioner and she told me it is likely Arimidex exacerbating the trauma feelings. They told me stop it and they are switching me to Letrozole. I did stop taking the Arimidex yesterday, but the panicky, nauseated feelings in the morning have not diminished yet. I hate these feelings.

    Anyone else feel nauseated in the morning?


    wallan


  • purplecat
    purplecat Member Posts: 226
    edited February 2020
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    Wallan, I am on tamoxifen instead of Arimidex, But I do think it’s affecting my emotions. I’ve spent the past month getting various scans and tumor markers Due to an ovarian cyst. It’s been a stressful experience, but I feel like I would’ve coped better if I wasn’t taking this medication. I’ve been irritable and weepy and short tempered and generally having a much more difficult time thinking positive than I did during the initial breast cancer diagnosis. Part of it is that a month is a really long time to be in scary medical limbo, and at this point I find ovarian cancer scarier than breast cancer, but I think these hormonal medications really make it harder to cope emotionally too.

    Perhaps due to this, I’m also having a hard time calming down even though I just got what appears to be good news at last: the doctor’s office left me a voicemail saying they had “normal test results” for me And to call back. I was at work when I thought I had a voicemail from the doctors office, but wasn’t able to check it for an hour and a half, it in that time it was all I could do to function normally around my coworkers without having an anxiety attack. I’ve been sitting in a quiet place just trying to breathe, but I still feel really on edge. I think it’s just going to take a while to recover from the past month, and then the past hour and a half. I feel like I can’t even handle calling the doctors office back to discuss the “normal results” just yet, Or even check my patient portal to verify I heard what I thought I heard. If this is part of PTSD, then I probably have some of that.

  • wallan
    wallan Member Posts: 192
    edited February 2020
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    So sorry of what you are going thru PurpleCat. It is stressful to wait for tests. And I think with our breast cancer history, having any other kind of test or possible disease does cause us to be highly anxious. I am learning this is how the brain works. So its completely understandable and normal for you to be highly anxious waiting for those tests or having to talk with the doctor. It is great it is good news.

    I have completely stopped the Arimidex, but I am still feeling nauseous in the morning and panicky feelings. But at least the weeping has stopped. The nausea must be due to something else.

    I am not sure if my mood shift is due to the trauma therapy or the Arimidex or a combo. The psychotherapist said my emotional reactions are common during this kind of therapy and show I am finally starting to process stuff. The nurse practitioner told me the emotions are a side effect of Arimidex. So its likely a combo. As they say,, this too will pass.

    I hope the therapist is right and my PTSD will be on the backburner after this....

    wallan

  • wallan
    wallan Member Posts: 192
    edited March 2020
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    So... update. I stopped the Arimidex since Feb 26 and I must say within the last 5 days or so I feel great! Then i started Letrozole last night.

    I have panicky feelings in the morning again and my fingers and knees are aching tonight. Plus I have lost my appetite. I feel like I am on chemo again. From one pill. Does this get worse?

    I must say that after having myself feel great for a few days once Arimidex was all clear from my system and my own body was adjusted, I really don't want to take these hormone therapy drugs. QOL does mean something to me. But, of course, I will because of my BC history.


    My PTSD therapy is going well and it definitely is helping. Big time.


    Can anyone tell me if the SE of Letrozole get worse or do they get better over time?


    wallan.

  • pure0323
    pure0323 Member Posts: 18
    edited March 2020
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    This thread is so helpful. I want to be so strong but I have struggled since I was diagnosed. I think it’s some kind of PTSD. I’m going back and reading all the post here! Purple Cat I can relate so much to what your feeling. I’ve been having test and been in limbo for 3 weeks. Anxiety is a monster

  • purplecat
    purplecat Member Posts: 226
    edited March 2020
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    pure0323, I’m so sorry you are going through all this. Waiting is the worst, even worse than treatment in some ways, I think. I’ll be praying for good news for you soon

  • wallan
    wallan Member Posts: 192
    edited March 2020
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    pure0323: PTSD is a real thing with cancer survivors. Look into CPT for therapy. It helps with veterans who have PTSD and it really is helping me.HUGS to you. There is an app called CPT that you can download for free. But real face to face therapy is the best.

    Hugs

    wallan

  • pure0323
    pure0323 Member Posts: 18
    edited March 2020
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    Thank you Wallan! I will definitely check that out. Trying to deal with anxiety this morning going to doc afternoon I get CT results.

  • edj3
    edj3 Member Posts: 1,579
    edited March 2020
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    Agree w/ Wallan. I have PTSD from childhood sex abuse and now this BC triggered it all again. I'm going through CBP and it's very helpful.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2020
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    I did not think I had PTSD (from growing up with narcissistic parents); then this president came along...

    PS Cancer did not trigger me per se but the way I had to advocate for myself (rather than "being taken care of") was the most upsetting component and now I am connecting the two).

    I got Neurofeedback a few years ago. FANTASTIC for calming internally. Neuroptimal was the system I did. RAPID (20 sessions total -- and I could feel changes in 6 sessions).