PTSD and cancer: it’s real and it hurts

PTSDFinally, it is being addressed in the cancer community.  Post Traumatic Stress Disorder is real and it hurts.

I recently read a blog, Nobody Has Ovarian Cancer: PTSD And Breast Cancer, Study Opens Healing Door.  The author, Denise Archuleta, a stage III C recurrent ovarian cancer survivor,  praised the study that acknowledges  a percentage of  women diagnosed with breast cancer were also sufferers of PTSD.

I had PTSD and Denise suffers from PTSD.  I will follow this blog article with my personal story of lonliness and isolation, sudden flashbacks and fearing I was going crazy.  I felt ashamed of my fear because I flew through my treatment with courageous bravery noted by one and all only to come home to crash in self-doubt and severe depression.  And as a Christian, I was ashamed that “Jesus wasn’t enough.”

Here is Denise’s article in full and please read the comments following; they are very insightful into the world of sufferers of PTSD.

PTSD And Breast Cancer, Study Opens Healing Doors

Each day brings a repeat of a series of events that are predictably unpredictable.  A battle waged not by me but from deep within my mind, an unhealthy response to the fear of death.

Recent research has spoken of such things when it comes to breast cancer.

JNCI J Natl Cancer Inst (2013)

http://jnci.oxfordjournals.org/content/early/2013/02/21/jnci.djt024.abstract
doi: 10.1093/jnci/djt024
First published online: February 21, 2013 Conclusions Nearly one-quarter of women newly diagnosed with breast cancer reported symptoms consistent with PTSD shortly after diagnosis, with increased risk among black and Asian women. Early identification of PTSD may present an opportunity to provide interventions to manage symptoms.

I am not surprised at all, cancer of any kind is traumatic.  If you know me you know I am wondering when this type of research will be done with females who are diagnosed with ovarian cancer.

If you know my story, like many other stories, the doctors are always completely blown away, shocked that we have ovarian cancer. Those of us ladies who heard whispers that the subtle symptoms did mean something important are always shocked, but in a different way.

It is more of a stunned feeling of disbelief because usually for a significant period of time we were crying out that something is wrong, please find it and fix it.  I was told three times that I was too young for this deadly disease.

Well this disease is much less deadly if caught early.

So the stress comes from a doctor finally saying they know what it is and gosh golly I think we need to get you into surgery and rule out ovarian cancer.  And awe shucks I sure am sorry.  And the shock comes from after learning that after everything but the kitchen sink may need to be removed you must do chemo.  

Then the traumatized self does even more research to discover that it is the deadliest of all the gynecological cancers, and we get to read the statistics.  Then some of us are repeatedly traumatized because we may be single, may need to move, may not have health insurance, and because the survival rates are not that great, live this yo yo life of wanting to make the most out of every situation and live as long as possible but not make any real long term plans because, well, we have ovarian cancer. Push. Pull. Push. Pull.

Eventually you survive by letting it Be, and know Today. Letting God take the wheel brings about incredible peace.

I do that more and more, and allowing God to be in charge has made this whole ordeal much more of a blessing. But the pain is still here. The cancer is still here.

If I can find a peaceful space to allow myself time to connect the dots and move from “why” to “how” and “what”, I use my pain to help others. Each day is a mini hike up the hill. The information about PTSD and breast cancer is enlightening, and brings me hope. Women with ovarian cancer need much more emotional and spiritual support. Hopefully this research will create better resources to directly target the stress of cancer, including ovarian cancer.

I was recently diagnosed with PTSD or a Panic Disorder. It took a very long time to figure out what was going on.  I was much more angered than some because I had asked the questions and was denied a CA125 in California.  Suffice it to say that I had symptoms, just not any intelligent gynecologist at the time.

Loss of body, threat of loss of life, loss of home, loss of job, loss of money, loss of status, loss of credibility because chemo gave me severe anxiety.   Loss of the future. Serious stuff for any person to handle.

For many women the loss of bearing their first child ads an entirely new dimension of suffering. Loss loss loss loss…..pain pain pain and repeated assaults on our bodily functions and mind.

I got punched in the stomach the day after my debulking surgery.    I have said this many times, I find the irony classic.    Admitted for optimal debulking surgery, not able to get out of bed yet, on oxygen, massive pain killers, just learning I have Stage IIIC ovarian cancer with aggressive tumors and having been living with unbelievable abdominal pain.  

How it happened was a technician came in my room to take my blood pressure.  My right arm was used.    The cuff was a bit too big, but she secured it tightly.    After reading the pressure she allowed all the air to escape from the arm cuff.  My little arms were not in the way of the tech simply sliding the cuff off of my arm.  There was plenty of room and usually that is what the techs or nurses do.   This gal was bent on unwrapping the cuff.  Velcro always wins and in this case nothing different would have happened.   Mind you I am on my back, fresh staples from my sternum to my pubic bone, already crying from the pain, and she Pulls and pulls and pulls and pulls and WHAM! The cuff loosens and suddenly her fist is embedded in my upper abdomen.   I heard a wailing sound come out of me that has never since returned. It Hurt Like hell.

I yelled and screamed and cried and cursed and and and.   They took a report, refused to do an X-ray, and to this day that exact spot is in constant pain.   It never ever ever dies. We have done thorough and exhaustive testing and nothing physical is present to cause this never ending pain. So, this abdominal pain is part of my anxiety attack.

Now with the evolving diagnosis of PTSD, the predictable order of events is that area of pain intensifies greatly, nausea rolls in, I get flushed and red, I start to breathe quickly, and the release begins when I am sweating profusely.  It takes 5 minutes to 10 minutes from start to get back to the stable level of nausea and fatigue I usually have.

I go through this multiple times per day, multiple triggers are known and other times I have no clues as to why I have this event.

For the longest time it was thought that I was just having hot flashes.  Hot flashes are not normally precipitated by severe abdominal pain or nausea.

What I can do is use my talent to pray for others who suffer. I live with cancer and am learning to live with this PTSD disorder.    Maybe my medications will be changed, not sure.

The biggest cost has been that I as a person, me Denise, am not always clear with my communication and when I have these attacks, I feel that other people do not know what to do.

Being proactive when in the right situation can go a long way, just saying that I need some air, not to worry, and I grab a really cold cloth to help manage the surge of heat and sweats.  

I am just in the beginning stages of learning about this. I take Lorazepam and Effexor XR.   I do not want stronger meds right now.  My gynonc has been so very supportive of this and does not pressure me to process or handle more than I can.    I trust in her.  I trust in God

If you have a story about ovarian cancer and getting a new diagnosis of a mental disorder, depression, anxiety, PTSD, I would like to know.

You are free to post them in the comments section or you can follow me and send me a private email.

Ovarian Cancer and Mental Health are enmeshed together, and it is that along with spiritual, social, financial, community, family and medical support where we address those concerns and create a viable safety net.

God Bless You
Servivorgirl

12 comments

Facing Cancer Together said…

I’ve heard about PTSD before, but have never read such an descriptive account. I hope this diagnosis makes the attacks more manageable, and the pain decreases.

April 9, 2013 at 1:13 AM

PEACE said… Dear Survivorgirl,
I too am battling OVCA. What a journey. I was originally diagnosed Ic, but have recurred twice with mets to kidney, lymph nodes and a totally saturated liver. After 3 1/2 years on various chemos am finally in remission. I understand the panic attacks. I get them occasionally with a feeling of light-headedness and the sweats, with horrible thoughts of dying, not getting to see my kids get married or my grandkids. But I’m here! I love each knew day and have a better appreciation for so many simple mundane things. Like watering my flowers, cleaning my house.

By the way, I am the one who started the “Let’s turn Facebook Teal” last year and created the many banners for that project, including the one I see on this page. That really touched my heart today and made my day. Thank you!

We are all in this together, even though it feels like we are so alone so much of the time. Stay tough!

April 9, 2013 at 8:11 AM

Leslie said…

Hi, I just read your story, I too have PTSD, I’ve been battling it on and off for years… Much milder now and more manageable, breast cancer was diagnosed in Aug of 2012, Stage 4 @ the get go… I’ve been working with EMDR techniques more recently, I have found EMDR to be very effective, it is used a lot with soldiers coming back from war… trauma is trauma, pain is pain, my angst hits me in the solar plexus when it hits, sounds like this may be exactly where you got punched! I’m not surprised it hurts! I’m also learning some meditation and breathing techniques that help to calm mine down, episodes are rarer now and less intense…for me its been a journey of learning to TRUST…God and myself…

Just breathing and Trusting

wildwest

April 9, 2013 at 9:24 AM

Janet Schuler said…

Oh my gosh….I am doing a speach for Survivors Teaching Students and I just added in my speach that I believe being diagnosed with stage III-C PPC is similar to having symptoms of PTSD…..and then I read your blog today. I’m NOT crazy! :~)
I’m 46 and back in treatment for recurrence too!!!!Stay Strong.

April 9, 2013 at 1:18 PM

Denise Archuleta said…

Facing Cancer Together, thank you for your comment. It helps to know You listen. The layers unfold slowly but the encouragers are quick to reply.

Peace, There is almost a meditative solice in the mundane, it keeps us connected to earth, to spirit. I pray you get resolve with your attacks and for a long joyful life. Thank you for sharing your feelings.

Leslie, you are one brave angel. I really appreciate that you have enlightened me to recognize more directly the area of pain. I need to research EMDR……???. I pray for you that your faith continues to help you heal the pain. So relieved for you that over time the attacks are diminishing in strength. Thank you for sharing your story.

Janet, you are not crazy. I am with you in spirit for a return to NED. Survivors Teaching Students is such a blessing. Sharing the elements related to PTSD is important. Over time I hope we can improve the level of psychological support for people with cancer. The. gynecological oncologists of the future are getting a unique look at ovarian cancer because of you. Thank you for telling your story.

April 9, 2013 at 3:10 PM

cyndi said…

I was alone isolating myself from the world and I thought I was going crazy! I wanted to know if I was normal, if this was normal but when I spoke to anyone about this paranoia no one seemed to understand. I researched on the computer, googled “survivor” and at few articles and podcasts popped up. I began to learn about this emotional roller coaster and sought therapy. Through therapy I was told I had PTSD. Yes, I wasn’t crazy! Since that time I try to let other survivors know that if they are struggling with severe depression and anxiety it is a part of the healing process and therapy may help.

I had mantle cell lymphoma, a rare cancer, with a 60% chance of return – it is not curable. In November 2013, I will be 5 years cancer free.

I wrote extensively while in my deep depression and through counseling. I am hoping one day I might be able to use my journal to help others.

I currently author a blog as reference and link other Christian cancer blogs. May I add yours? And, may I reblog this posting of yours?

Thank you!
Cyndi Heath
https://advocateofhope.wordpress.com

April 11, 2013 at 7:33 AM

Anonymous said…

I am a fellow ovarian cancer patient also diagnosed at stage IIIC, and although I have no fear of death, I don’t want to go yet. But it doesn’t have to be a fear of dying that creates PTSD–I have developed a PTSD about medical treatments, with flashback memories that still cause panic. Some of the things that have been done in my medical care even before the cancer contributed to this, especially inadequate drugs during colonoscopies that left me with horrifying memories of waking up to severe breakthrough pain when they had everything painfully inflated and were positioning me differently and pushing in on the abdominal wall to move things to be seen by the scope as I lay there helplessly.

My debulking surgery for the cancer was better than optimal, but 2 & 1/2 days later when 7 units of blood and 6 units of plasma couldn’t keep up with bleeding losses, they went back in and stuffed me with 9 yards of surgical packing and an external pressure wrap and kept me in ICU 4 days. All well and good, but when they needed to pull it out, the doctor would not wait until the Versed was in me (2 mg was in the IV line but they had stopped the drip and forgot to turn it back on). I told him I’d gotten nothing and he didn’t believe me, so he got in my face and said, “You’re not aware of any of this, are you? You don’t even know I’m here!” I said, “I DO know you’re here, and I don’t feel the slightest effect of any drug yet at all–no, please don’t start yet!” He turned to my abdomen and said, “You won’t remember this!” and started hauling the packing out, lifting me off the table with the pull. I yelled “NO! NO! NO!” and screamed through 2 pulls, and 2 people nearby walked out of the room, unable to take this, then they put another 2 mg Versed in the line and opened the line, so I got all 4 mg at once. After that I was “out” for a bit, but still remember being re-stapled at the end of it all a few minutes later. 6 weeks later I had a Mediport placed and told them 4 mg Versed had been inadequate for me before and please be generous as I seem to have had it often enough to have developed some tolerance to it and had developed PTSD and phobias–I barely managed to get them to give 3 mg plus a little Demerol, and I lay there in a barely controlled panic for the entire procedure, remembering everything as the nurses tried to keep me talking for distraction, because the doctor believed such a procedure shouldn’t take more than that and would be over too quickly to warrant more!

And they wonder why I panic now at the very thought of the slightest additional procedure!? Even telling about this has me in knots of tension and ready to cry. I’ve had 2 intestinal obstructions since then and have had to beg for something for anxiety before they put in the nasogastric (NG) tube, getting just 1 mg of Valium the first time and 2 mg the second (because I told them 1 mg hadn’t been enough before), and neither time was it adequate, especially the second time with a rough nurse jamming the NG tube in. More traumatic memories and flashbacks…

I am a veterinarian and I think it’s completely unacceptable to put patients through all of this when we have so many wonderful, effective drugs to minimize the physical and emotional trauma. I do better than that for my own patients! It’s even worse when the patient has developed PTSD and procedural phobias, tells the doctors and nurses, and they still don’t adequately address the individual’s needs. It’s bad enough to have to fight cancer–we shouldn’t have to fight for treatment to be more humane.

April 11, 2013 at 1:24 PM

Denise Archuleta said…

Cyndi, I am so sorry to hear that you have suffered so. Your journal would be a blessing for others should you share. I would be honored to be added to your blogs and look forward to reading. Peace and healing to you.

Anonymous, Dear heart and gentle soul, you hang in there. you need much healing and peace and a chance to relieve the pain of your procedures. I also hope you take legal action against that doctor….I would never openly jump to a statement of such extremes, but he is not in the right profession. It’s one thing to have an accident happen when being in the care of a medical professional and it is an entirely different matter to be abused. I pray for you, I pray for him, I pray to God that you are relieved of your pain and that your body and spirit be complete to live a life of joy.

I pray this for all my readers, may your body and soul feel loved, feel light, feel warm and always be hopeful.

Love,
Denise

April 11, 2013 at 3:49 PM

jaywontfly said…

Thank you for this post Servivorgirl. I was diagnosed with breast cancer over a year ago and am now deemed cancer free. But now I can’t keep my mind at ease, every little pain, ache, sore causes me to panic and think that the cancer has spread. Maybe they missed something? Should I have done all the scans they asked to do? Maybe they would have found more cancer? Then I start psyching myself out.
You actually wrote this post the same day I wrote a post on my blog wondering if there was such a thing as PSTD after receiving a breast cancer diagnosis (or any cancer diagnosis for that matter!). I am not surprised that there is a link and I am glad it is being studied.
Thank you again for this post and I’m sending good vibes to you always! – Jessi April 12, 2013 at 6:32 AM

Lucia O’Quinn said…

Hi! My name’s Lucia and I’m doing a high school science project on “how different cancer patients are affected differently”, and I was wondering if you could go look at my last post and take the survey? It’s completely confidential, and it’ll help me a lot! Thanks!(:

April 12, 2013 at 11:57 AM

vicki lea said…

Hi,
I am new to this side of the medical arena and thank you all for posting, I do not feel so alone. Thought I thought my appendix had burst they thought i had a kidney stone but no, I have a large ovarian tumor.I am a 52 yo nurse, my surgery is monday. Think I found a good gyn/onc guy. I am sorry for all of your pain and anxiety, I have seen it all first hand. I have always had a special interest in pain management and am hoping I can now use some of my skills to help myself. I dont have a diagnosis yet but know the odds, I am hopeful but realistic, knowing even with the best of outcomes my life is forever changed. Looking for oppurtunities to help you all as well as myself. EMDR has good reviews, but immediately you can go to one of the large bookstores and get guided imagery cds or an phone app to start doing some mediations, “a helpful adjunct” 2 more days till surgery
. Any suggestion to help me prepare? April 13, 2013 at 5:54 AM

Servivorgirl said…

Jess of jaywontfly: i am very happy that you are in a good state of health after going through treatment for breast cancer. It IS interesting that you were wondering about the PTSD at this same time. We know what we need and collectively this gathers and finds the method to be revealed. My hope is more funding for resources to appear, so that we don’t suffer in isolation or feel nutty. Hang in there and please stay in touch.

Lucia: I would be happy to do the survey. I hope the results help contribute towards good programs. Well done for considering such an important topic. Good lucky with your schooling, but you pry don’t need it. ha

Vicki: Oh low, surgery on Monday. I am sorry my response is so late in the evening. I am very. very relieved that you are working with a gynonc. Let’s be keeping our fingers crossed for excellent results for you. Ovarian Cancer is tricky and invisible. hate that, so hard to pick up early.

Preparation, great question. If you are not living alone, it is so much easier. When you get to go home, no lifting over certain number of pounds, you may not be able to do stairs. be ready to wear nightgowns or sleeper dresses, no undies around belly…big ouch. so simple clothing, get everything up off the lower levels to counter height. Have simple things prepared, movies, reading….pace visitors. avoid sodas due to carbonation and hopefully someone can help you make protein shakes. need lots of protein and fluids. also stool softener a, miralax flax. really important… try to prepare a quiet space. I

I was so so so blessed that family flew out to stay with me for a few weeks to help with meals, etc. I could not drive. and I needed round the clock pain killers.

keep good notes.

If you can, hire someone to clean. you may need help with ADL for a few weeks like showering.

Good nutrition, positive people and people who can be with the emotions of fear, etc. I can tell you already know this, but being comfortable will go a long long way.

inspire.com is a wonderful anonymous resource for linking up with other women who have ovarian cancer too

ask me any other questions you won’t. each person is different too, as you know. Peace and I will be praying for you Monday……..

Thank you fall for your important thoughts and for sharing your thoughts and stories.

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2 comments on “PTSD and cancer: it’s real and it hurts

  1. Cyndi Heath says:

    Thank you, Denise, for your comments.

    My hope is PTSD is discussed more and more via the internet so those survivors looking for answers to their anxiety and depression can learn they are “normal” and there is help for them.

    I am following up this article with my personal accounts. When I was suffering with PTSD I looked everywhere wanting to read about this and for guidance in what to do.

    I am sorry you are continuing to battle cancer . . . my dearest friend is a recurrent ovarian survivor. She is back in remission but fears it’s return.

    Blessings to you – Cyndi

  2. Denise says:

    Cyndi, I am so grateful for your post. I still have nightmares, but am much calmer than a few years ago. I wonder if PTSD symptoms are transitional in cases like this, that turn into other more chronic issues like ongoing anxiety disorders or panic disorder too. My psychiatrist is focusing on panic disorder, along with other issues, increased medications, and provided some educational resources for me to use. This is the beginning of another expedition along this new path in life. Either way, my hope is that the psychosocial and emotional needs are addressed as expected part of the treatment plan in the near future. Your blog is lovely. Peace to you, Denise

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