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PTSD and cancer

https://www.breastcancer.org/community/podcasts/ptsd-20181220

I have read this transcript and it was simply amazing. I have developed PTSD type symptoms during cancer treatment and on top of other mental health issues. I have a psychiatrist to handle my physical symptoms but I'm finding it hard to find a therapist that I can afford that deals specifically with cancer in general. I wish I had an oncology psychiatrist earlier on. I stopped going to my regular therapy sessions after my diagnosis because they specialized in anxiety, but I'm not sure if they handle PTSD. Otherwise, they are wonderful.

Please help me find a way to bridge quality, affordable, and accessible mental healthcare for cancer patients.

So many of us are suffering, especially now. We deserve good mental healthcare.

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Comments

  • hopeful82014
    hopeful82014 Member Posts: 887

    Phoenixrose8,

    Have you asked any of the social workers affiliated with your hospital/treatment centers? Many institutions have such social workers who specialize in oncology. They can be very skilled, understanding and helpful- not just with the emotional impact of cancer but also practicalities. Many times there is no charge for the service, or maybe a minimal fee.

    I was super fortunate to find one of the art therapists (no, no artistic interest required) at my hospital that I really clicked with. She’s also a long-term survivor of breast cancer, so really ‘gets it’ and has the training, experience and insight to help others through it. She was a lifeline for me and we still connect regularly.

    If your 1st attempt doesn’t work out, try another - your surgeon or other providers may have suggestions. The first one I encountered at a different institution was a disaster. I am so glad I didn’t give up on the whole idea at that point.

    Your psychiatrist may be able to make a referral, also, if you’re comfortable asking for one.

    Good luck - a cancer dx really packs a wallop and living with the backwash can be quite difficult and family and friends don’t always get it.Finding good help can make a world of difference.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Hi Hopeful82014,

    Thank you so much for your advice and post. I tried to go that route but it didn't work out. I'm in the midst of all this as we speak. I had my first therapist session for PTSD and it was very difficult. In the video call I could see the pain on their face. I felt like the therapist really wanted to help me but didn't know how so referred me to someone else. I do have a therapist I trust but I can't afford them and I'm not sure any colleague will be able to treat PTSD(I've been diagnosed with other mental health issues and have been seeing therapists since I was 17). I will ask my psychiatrist’s opinion as well, including more affordable therapists that they may know.

    This is why I am so confused about why I never heard, from anyone, about oncologist psychiatrists? It saddens me to know that it's possible that there are others out there going through what I am.

  • buttonsmachine
    buttonsmachine Member Posts: 339

    Phoenixrose, I hope you find someone.

    I've had a bit of a winding road in that way myself. The first person I saw at my original cancer center was alright, but she also seemed to forget key things about me on more than one occasion, and I felt like she wasn't totally paying attention. On autopilot perhaps?

    Then another of my doctors suggested a supposedly amazing oncology psychologist or psychiatrist, but alas my insurance will not pay for me to see that person and I cannot pay that much money out of pocket either. Oh well. When my doctor realized that, she nicely did some running around and set me up with a mental health nurse practitioner, but honestly we just didn't click.

    I talk with a social worker from my current cancer center now. She is a sympathetic listener and has good suggestions when I need an outside perspective. Sometimes I do think it'd be beneficial to unpack some things a bit more with a psychologist. But unfortunately it's hard to find the right person I think. So I've kind of just left it alone, and I just keep on keeping on. Not that the way I have handled it is the best way or anything. I'd bet that it probably isn't! But that's my story, in case it helps others.

  • smc123
    smc123 Member Posts: 30

    Phoenixrose, Do you have a “Cancer Support Community” in your city? It’s a nonprofit that offers free support through many different programs. Pre-COVID I had reached out to a location near me and was planning on attending the Breast Cancer support group. Unfortunately, COVID-19 moved everything to online and zoom which I didn’t feel comfortable participating because of lack of privacy in my full house. I know it’s not easy but don’t give up on looking/getting yourself help. Good luc

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Thank you all for your posts!

    I think a good starting point to bridge quality, affordable mental health care with more cancer patients is to hold each other up and provide the best advice we can to each other while we each find the right therapist. Right now I am in need of some distance for a couple of weeks before I call back for the referral.

    I also was provided wonderful resources but I was, and still am, too shy to meet face to face with others right now. Hopefully I will be able to overcome this with a new therapist. In the meantime, let's keeps talking

  • buttonsmachine
    buttonsmachine Member Posts: 339

    I am also concerned about privacy, and that makes me afraid of meeting online via Zoom or something. I mean, maybe I'm paranoid or cynical, but what if someone is recording without our knowledge? I think I'd feel too afraid to say anything too personal, and then the anxiety around all that just defeats the purpose for me.

    My anxiety has increased lately. It's a combination of things - partly disease progression, partly some difficulties with family, partly other stuff. I want to do things to help myself feel better - to lighten the mood, things I enjoy - but it's hard. Partly because I don't feel good so much of the time from either chemo or the cancer, partly because I might be depressed, partly because of real physical limitations now that I'm metastatic.

    How do you guys motivate yourselves to do good and helpful things? And stay out of the slump? I'd appreciate any tips.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    I'm so sorry buttonsmachine. I wish I could do more to help you. I promise you that therapy and very light medication is like night and day. I can also suggest some reading material as well. PM me if you would like any resources, including therapists.

    The best thing I find lately is whenever you are anxious, be as present as possible. Think about what you are watching, feeling, smelling, seeing, hearing. Daydream (responsibly of course, I've tripped while daydreaming while walking one day!). Mindful apps on both android and iPhone are also very useful!

    And if all else fails, make sure that you are not holding your breath. Holding one's breath when anxious is common. I now breathe so much better since I became aware.

    Hugs

  • edj3
    edj3 Member Posts: 1,579

    I'm a childhood sexual abuse survivor and did a ton of work around healing from that in my mid-30s. Getting dx'd with breast cancer, along with the fairly unpleasant tests and procedures on my breast triggered that PTSD in a big way.

    I was lucky, because where I was treated does offer counseling for breast cancer patients. I chose to see the psychologist (I had met and didn't care for the social worker, nothing to do with credentials--he made a couple of so-called jokes that reinforced awful stereotypes about women and I noped on out of anything to do with him).

    She was really good. She worked with me using cognitive process therapy, which is super hard but was ultimately so helpful and healing. Not quite a year into working with her, COVID hit and my appointments moved to virtual video conferences.

    In a way, that was easier as there was a little distance between us if I lost it in a session. I realize others might not feel the same way, just sharing how it was for me.

    Altogether I saw her a couple of times every month from July 2019 through January 2021. My insurance is good so my co-pay was reasonable, but even if it hadn't been, I would have gone into debt to be out of that hellhole with better coping tools.

    Much love to you all, this is hard stuff to be sure.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Thank you for your post edj3. I'm so happy that you found a therapist that works for you, and I'm so sorry for all that you experienced.

    It makes my blood boil to read about how others were mistreated. Especially if they are already dealing with cancer. Something needs to change. I wish we could somehow get the ball rolling with getting more people living with cancer quality and affordable mental healthcare.

    We have all been through enough. We shouldn't have to look and pay a great deal of money to get it! I could barely crawl from my bed to the bathroom in the worst days of chemo, I didn't have the energy then, I shouldn't have to exhaust myself finding a new therapist now.

    Hugs to you all. We’ll get there together.

  • hopeful82014
    hopeful82014 Member Posts: 887

    Phoenixrose - I’m sorry your contacts with the MSW weren’t helpful. I under how hard and frustrating it is.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Thank you Hopeful82014. Today was a better day.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    I learned today that 80% of BC patients have some form of PTSD. I hate that most of us our suffering without help.

    What can we each do, right now, to help treat ourselves? I'm still reeling from being told by a therapist that they can't help me. It has shaken me to the point of needing space from dealing with it. I'm fine but I'm starting to slip. How can I face this? What are the tools that I need?

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    The only way to change things is to lift each other up.

    How many of you suffer from some form of PTSD, anxiety, OCD, body dysmorphia, etc. caused by, or was exacerbated by cancer?


  • dani444
    dani444 Member Posts: 215

    I experienced my first anxiety attack shortly after radiation ended. I was standing in my kitchen and it just hit me out of nowhere, complete panic. I went to my MO after a few months of tamoxifen misery and he started me on Effexor for my hot flashes (that visit is a whole story of a very unsympathetic doctor). It did in turn help turn down my anxiety a bit. I hate how I feel now. I have significant fatigue from tamoxifen and I feel like someone turned off my ability to experience joy.

    I am just recovering from a revision surgery and felt like a failure that I couldn’t return to work as soon as I expected. I sometimes feel a pressure to “be strong”, and I know people just see that I am done with having cancer so it should all be over.

    I am sorry for a random venting on here but I have not been dealing well lately with the emotional fall out from having a cancer diagnosis. I want my old self back. I cannot tolerate even a small amount of stress without feeling overwhelmed and anxiety just shows up whenever. I was not like this before cancer.

    I really don’t have anyone in my life I share these feelings with, and I am single. I am glad to be able to come to this forum and at least put my feelings out there. Thank you for listening.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Hi Dani444,

    Thank you so much for sharing your story, and I am so sorry for what you experienced. Anxiety is no joke, and panic disorders can literally feel like the world is crashing down on you. I first want to tell you what I was told; YOU ARE NOT A FAILURE! These intrusive negative thoughts are not you. The below quotes may help with these thoughts:

    “Allow negative thoughts in and out of your home. Just don't serve them any tea."

    “Water bears no scars."

    The number one exercise that works is to pay attention to your breath. Usually when we are anxious, we hold our breath. When you are not feeling well, no matter what it is, just take a moment and see if you are holding your breath. Then just breathe normally. I promise you, your body will learn to breathe correctly on it's own. It's really extraordinary how something so simple can work.

    You are not alone. You have us, and I will do my best to help you if you need any other tips, resources, or just to talk, please PM me.

    Hugs,

    Phoenixrose8


  • harley07
    harley07 Member Posts: 270

    @Dani444 - I'm so sorry for what you are going through. Panic attacks can be debilitating, but are invisible to those around us so no one sees how much you are suffering. In many cases it is the same situation with cancer. If we don't look 'sick' people assume we are OK when we are not. Is counseling available to you?Perhaps a telehealth or face to face visits would bring some relief? Take care.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Courage is one of the pillars of life in my opinion.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    I miss Care Bears. I should really maybe consider buying one.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Does anyone have any ideas on how to get the word outside this community on how to help bridge the gap between mental health care and cancer patients? Many patients may not have the opportunity to get an oncology psychiatrist and are suffering with mental illness before cancer. Cancer exacerbates these illnesses and May lead to severe PTSD in some people.This is not right. 80% of breast cancer patients suffer some form of anxiety, depression, and PTSD. We need to stop suffering alone. Quality Mental Health care is a right and should be provided ASAP to anyone who needs it. If I could, I would bring this issue straight to the top. I want quality MENTAL health insurance in network and I want all CANCER PATIENTS ASSIGNED A PSYCHIATRIST from getting the Dx to complete response and beyond. I also want this for mental healthcare in general, no matter what. Annual appointment psychiatrist check-up if your doctor thinks you may needs it? Yes please. Period the end. Enough is enough.

    Please continue to share your stories and help me help as many people as possible.

    May is also Mental Health Awareness Month.

    https://www.mhanational.org/mental-health-month

  • alicebastable
    alicebastable Member Posts: 1,938

    80%? Do you have a link to the study with that statistic? If it's that prevalent, it should be shared with patients' medical teams.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Metta.

  • dutchiegirl
    dutchiegirl Member Posts: 76

    My cancer centre does offer counseling at no cost. The therapists are trained on cancer care so that's been a very helpful resource for me. Thing is, I found out about it through a nurse that works with my radiation oncologist. Nobody mentioned it ahead of time. And yet, post-treatment can be so challenging on an emotional level. I also think that cancer centres should have a sexual health unit, since that also seems to challenge many who have been through this horrid disease.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Thank you for sharing Dutchiegirl. It is absolutely awful that cancer patients don’t have quality mental healthcare resources as a standard part of any cancer treatment and it just literally hurts me that others are suffering.

    I haven’t been on this site for a bit because I started treatment with a wonderful new psychologist through my psychiatrist, and I have been going through a lot since our initial assessment.

    In a nutshell, the sessions are eye opening, and bringing up a lot of emotions that I have been dealing with including more vomiting and crying, but in a more meaningful way, if that makes sense. Anyways, I listened to this song this morning and the lyrics themselves were healing to me. I hope it’s ok to post lyrics here. I hope it helps anyone who needs it right now

    "True Colors" by Cyndi Lauper

    You with the sad eyes
    Don't be discouraged
    Oh I realize
    It's hard to take courage
    In a world full of people
    You can lose sight of it all
    And the darkness inside you
    Can make you feel so small

    But I see your true colors
    Shining through
    I see your true colors
    And that's why I love you
    So don't be afraid to let them show
    Your true colors
    True colors are beautiful
    Like a rainbow

    Show me a smile then
    Don't be unhappy, can't remember
    When I last saw you laughing
    If this world makes you crazy
    And you've taken all you can bear
    You call me up
    Because you know I'll be there

    And I'll see your true colors
    Shining through
    I see your true colors
    And that's why I love you
    So don't be afraid to let them show
    Your true colors
    True colors are beautiful
    Like a rainbow

    [Whisper:] Can't remember, when I last saw you laughing

    If this world makes you crazy
    And you've taken all you can bear
    You call me up
    Because you know I'll be there

    And I'll see your true colors
    Shining through
    I see your true colors
    And that's why I love you
    So don't be afraid to let them show
    Your true colors
    True colors
    True colors are shining through

    I see your true colors
    And that's why I love you
    So don't be afraid to let them show
    Your true colors
    True colors are beautiful
    Like a rainbow

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Adjustment disorder—A condition in which a person has a lot of trouble making changes in his or her life to manage a stressful event such as a cancer diagnosis. Symptoms such as depression, anxiety, or other emotional, social, or behavioral problems occur and worsen the person's quality of life.Jul 9, 2019imagehttps://www.cancer.gov

    Adjustment to Cancer: Anxiety and Distress (PDQ®)–Patient Version ...

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    bump.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68

    Is anyone else suffering from PTSD from treatment, especially chemo? Please reach out.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107

    Thank you for starting this thread. I will be following it. I was very anxious and even angry and cynical sometimes during neoadjuvant chemo. I thought I was finished with chemo when my breast surgeon said I had complete resolution in the breast. Come to find the results from the sentinal node that was positive showed significant shrinkage but not enough. I need more chemo. Every time anyone mentions treatment my body reacts. I immediately want to stop everything I am doing and just cry even if I try to will myself not to cry I still cry. My oncologist witnessed me do this last week and referred me to a psychologist that works with cancer patients. She called me briefly yesterday and recommended that I start taking brisk walks. I don't officially have a session with her until next Friday. I am so relieved that someone noticed I need help. I keep thinking to myself that all cancer patients must feel this same despair from time to time, and had been brushing it off like I should be able to deal with this situation since I'm not the only one. I think it's breaking me down slowly - this trying to be strong and not complain to anyone.