Roughly 1 in 5 Cancer Patients will develop PTSD

MTwoman

A study being published today in the journal Cancer, show that roughly 1 in 5 cancer patients develop PTSD. Read more here:

https://www.statnews.com/2017/11/20/ptsd-cancer-diagnosis/

Meow13

I am suprised it isn't higher. Given the disease and the treatment.

mustlovepoodles

I'm not at all surprised.  PTSD is well-documented in people who have undergone severe illnesses, such as post-cardiac events or stroke.  My DH developed PTSD following an open heart surgery. Why not cancer, too?

I did pretty well all through my cancer diagnosis. Oh, sure, I was anxious and sleepless, but I mostly kept my head up through the lumpectomies, chemo, sepsis, and infections.  I had a bilateral mastectomy after chemo was complete because I have two gene mutation which cause BC.  Easy peasy, right?  Well, it went all kinds of wrong and left me with terrible scarring. It took 16 weeks to get it all healed. And about two weeks post-op I developed PTSD. Thankfully, my DH recognized the symptoms almost immediately and got me to my doctor. She put me on an antidepressant for a bit and it worked a miracle. I was able to come off the med after about 6-7 months as I moved on in my life. 

Meow13

I am surprised more people don't have PTSD. Not sure poodles understood me.

Peacetoallcuzweneedit

When I was diagnosed in May, my breast surgeon had a pretty lengthy discussion regarding this and to expect/ be prepared for some of the symptoms and to be open to addressing...

ShetlandPony

Thanks for the article about an important issue, MTwoman. The article mentions the need for support and long-term follow-up on anxiety and depression. Indeed, this is important and should be improved.

I submit that another piece of the puzzle is how medical caregivers interact with patients during the acute diagnosis and treatment phase, not just afterwards. I think that being treated with kindness and respect, and being given information and some control, can make the difference between feeling traumatized and feeling cared for. This is based on my own experience, extensive reading here on the discussion boards, and conversations with other patients. Here are some examples of what I mean by being cared for:

The doctor or tech explaining exactly what is going to happen and talking you through it. A kind nurse holding a your hand. A doctor calling right away with test results so you don't have to wait in suspense. Making sure pain management is good. Allowing a support person to be with you as much as possible. Allowing you to request the phlebotomist (blood draw tech) that you feel most comfortable with. Taking time to answer your questions and address your concerns. Connecting you with a support group right away. Simple human kindness. Respect.

I suffered PTSD years ago after a traumatic event, so I know what it is like, but cancer treatment has not caused PTSD for me. I believe the kindness and compassion shown to me have made all the difference, and I think all medical staff at every institution should have training to help them with how to support patients in this way.

Of course patients who suffer mental health problems "after" treatment should be offered appropriate therapy and medications to help them. But I think the medical community can be proactive about this. (It will save money, too.) Doctors, nurses, techs, desk people: It is not just about referring a patient for mental health services after the fact. I believe that when you interact well with your patients, when you give them kindness, compassion, information, and some control, you help them avoid PTSD in the first place. Treat each patient like a person and recognize that it is not just another day at work for them.

Meow13

Having the mastectomy and the terror of a slow painful death by cancerous growths rocked me to the foundation. Having DIEP relieved some of my emotional pain. I will never be the same.

Anonymous

Count me as one in seven. PTSD as a patient, exacerbated by being my primary caregiver for my brand new husband, who died after we'd been married 3 months of oral carcinoma of the head and neck. I was 37 when he died, 22 years ago. Still struggle with particular cues, usually at the times of dx for him and myself and other anniversaries....

Taking AIs doesn't help my PTSD, since I also have to manage side effects of mood swings and anxiety at times.

MTwoman

ShetlandPony, I completely agree with you. A critical part of the diagnostic criteria includes "exposure to: death, threatened death, actual or threatened serious injury" (in conjunction with a number specific types of symptoms) and what I've learned over the years is that when the exposure occurs in conjunction with a sense of helplessness or powerlessness people are more likely to get PTSD. So if providers talk to us about our options, seek our opinions on our values (for example on surgical options) believe and act as if we are an important member of our treatment team and treat us with respect and kindness, this may reduce our likelihood of getting PTSD.

For anyone who believes that they have PTSD, I just wanted you to know that you are NOT alone. And that there is treatment. Please consider finding a therapist, psychiatrist or speaking to your nurse navigator or one of your doctors about options.

Manc

I don't know if I have PTSD can anyone clarify symptoms specific to breast cancer as opposed to accidents etc. I know I've been emotionally crippled by this and been a year since my primary grade 3 diagnosis. I have a constant constant fear despite taking a mild antidepressant I'm having some counselling but it's early days with that yet. Thanks.

MTwoman

PTSD - first criterion is that you must have an exposure to: death, threatened death, actual or threatened serious injury (as stated above). After that event, you need to have one of the following, considered "re-experiencing symptoms":

• Intrusive thoughts (meaning that thoughts about treatment, cancer or related thoughts pop into your head when you don't want them to)
• Nightmares
• Flashbacks
• Emotional distress after exposure to traumatic reminders
• Physical reactivity after exposure to traumatic reminders

AND you need to have one of the following, considered "avoidance symptoms":

Trauma-related thoughts or feelings (in this case, the trauma is bc)Trauma-related reminders

AND you need to have two of the following, considered "numbing or negative symptoms":

Inability to recall key features of the traumaOverly negative thoughts and assumptions about oneself or the worldExaggerated blame of self or others for causing the traumaNegative affectDecreased interest in activitiesFeeling isolatedDifficulty experiencing positive affect

AND you need to have two of the following, considered "arousal symptoms" that began or worsened after the event (bc):

Irritability or aggressionRisky or destructive behaviorHypervigilanceHeightened startle reactionDifficulty concentratingDifficulty sleeping

These must last for at least a month, cause distress or functional impairment and not be due to a medication, substance abuse or other illness

Now, all of these should either have occurred after the diagnosis or treatment of bc. If someone already has a trauma history, then this may exacerbate existing symptoms (worsening existing PTSD) which is also clinically significant. These should all relate to bc (unless you are experiencing worsening of previously existing symptoms).

Hopeful82014

Shetland Pony, I think you've hit on an extremely important point regarding health care providers' interactions with patients contributing to the damage.

On the whole, I've been amazed at the general lack of compassion in the medical community towards patients (and not just re: cancer dx.) and I always find myself wondering about that. I think some of it is because they deal with this stuff day in, day out and forget that they're dealing with patients for whom it's not a job but a physically and emotionally daunting experience. A little compassion goes such a long way but is equally hard to come by - in my experience. And I would be that this is never, ever considered as a contributing factor to patient distress.

Manc

Thanks for your informative post MTwoman I do think I fit this criteria not sure what if any difference it makes to any help but ill mention it to my counsellor. .

wallycat

I am surprised it is 1 in 5. I would think it would be 4 out of 5 or 5 out of 5. Count me amongst the PTSD.

Meow13

I had visions of being in a hospital bed waiting to die. The terrible loss of control, crippling fear. I remember one stage 4 lady on BCO writing just days before her death that she went horse back riding it was a beautiful sunny day. It gave me have hope that I wouldn't be confined to the hospital at the end.

Everytime, I have a scan or blood drawn I feel the panic.

Brightness456

Meow, I panic at every new step in the process too. I have to remind myself to breathe. I weep and cuss and forget important things I should remember.

Only now, as I’m getting close to finishing radiation am I starting to manage my fear a little better. This has changed who I am in a negative way. I’m trying to figure out how to make positive changes in my life to offset the bad.

I don’t even want to think about how afraid I’ll be when I eventually have to get my first post treatment mammogram.

DancingElizabeth

I agree - it ought to be 4 in 5 or 5 in 5...at least it's being acknowledged as a real problem

MTwoman

So there is something that is called an Acute Stress Reaction that many women experience when first diagnosed or actively going through treatment. Once the treatments have ended, if the fear (and other symptoms) persist and don't lessen over time, then that would be PTSD. Our bodies and minds do have a tendency to heal (from many things) when given the time and support that we need. For example, creating a spot in the house where one can relax and heal, with music/calming scent/ etc, is not just a way for our bodies to heal, but for our spirits and minds as well. Working with an individual counselor or group is also healing. What many women find over time is that the intense fear does not follow them every minute of every day, but only during specific events (like scanxiety). I have been NED for almost 15 years and I can still get it immediately before my annual imaging and then it remains with me until after I get the "all clear". And then things go back to "normal". There are very helpful treatments (both medication and therapy based), so I encourage anyone who feels that this is a struggle for them to reach out.