Majority of breast cancer patients develop symptoms of PTSD

Hopeful · 03-03-2016, 07:29 AM

This story was picked up from the news forum: http://www.news-medical.net/news/201...-disorder.aspx

It certainly gave me pause. There must be a better way for the medical community to discuss dx, tx and prognosis that would alleviate this.

Hopeful

Donna H · 03-03-2016, 01:14 PM

A few months ago I actually thought about this exact thing - do I feel like I have PTSD. I immediately dismissed it and thought I was being dramatic. But I really think it makes sense. Especially with HER2 statistics. It's certainly not the same as a soldier would have but none the less, probably very real for many breast cancer survivors (warriors). Personally I think more care should go into the emotional/mental side of this DX and TX. Very interesting article/study.

suzan w · 03-03-2016, 04:29 PM

I was diagnosed with PTSD (and other psychological issues) in 1992. It was never easy for me. Then, in 2005, diagnosed with breast cancer. The PTSD has gotten worse. This is a very interesting article!! Thanks for posting.

Hopeful · 03-04-2016, 07:45 AM

I would be really curious to see if, for example, colon cancer patients develop PTSD. I think the entire breast cancer treatment industry (my personal definition of it) is fear based - scaring women into self-exams, screenings, and overtreatment. It is important not to lose sight of the fact that medicine is a business, and bc is a huge profit center for screening centers, drug makers, docs and hospitals. Is it no wonder this is the result?

Hopeful

v-ness · 03-04-2016, 02:06 PM

what do you mean by 'scaring women into self exams'? i am confused. cancer is scary, no matter how you try to reason with women to perform self exams at any age, it will come off as 'scaring' because of that. we *should* be doing self exams! we should be taking that responsibility and being pro-active instead of complaining about the medical community. i did a speech last year and 'scared' some young women present by telling them they should start self exams now, no time is too young. breast cancer diagnoses are happening younger and younger all the time. i have a friend whose daughter was diagnosed in her 20's. the majority of my friends in my online support groups were under 40. my niece died of it at age 39. if people need to be scared straight, in my opinion, they should be scared into taking care of themselves too. it may not stop them from getting cancer, but it can sure make a difference in when it's discovered, especially when you have tools of early diagnosis. my boyfriend skipped his 10 yr colonoscopy. at 12 yrs, he was diagnosed stage 4 colon cancer. i wish i'd scared him into getting his colonoscopy 2 yrs earlier. it could have made all the difference in the world.

i'm not sure i have PTSD from having breast cancer myself, but i certainly have it from watching my husband and mom die of cancer and fretting over my boyfriend's cancer and my newly diagnosed friend. i found it a lot easier to have it myself than to watch those around me suffer from it and worry who's next. i hear people say that women are 'made' to get mammograms they don't really need and i just want to scream at the ignorance. mammograms and self exams are exactly how most of my friends (including myself) discovered our breast cancers.

Hopeful · 03-04-2016, 02:28 PM

I understand that your experience and mine are different, as are the way we view this issue. I can respect your opinion, and ask you to do the same for mine.

Hopeful

StephN · 03-04-2016, 04:39 PM

My stage IV diagnosis and prediction of less than a year to live is what haunts me. I am still here and NED, but sometimes still have a hard time believing that I can plan a trip in the near future or look forward to an event. Those are the easy things.

Valerie, glad you get the chance to speak to a group and tell things from your viewpoint. All the best for your boyfriend to overcome his fight!

sarah · 03-05-2016, 05:15 AM

Stephanie like you I had a hard time planning things too far out but now I'm over that! It takes time. However I strongly dislike comparing our stress to a soldier's. Ours generally softens with time and ours is less complicated. I certainly could never imagine going through what a soldier goes through. Obviously we are both facing death and fighting our disease takes strength and courage but many of us can live a good life and in many cases even appreciate life with more joy and gratefulness. Perhaps ours should be called PSSD, post shock stress disease. Please lets not compare ourselves to soldiers even though we may consider ourselves in a battle. I think it is important to recognize the great stress that happens with a cancer diagnosis and finding ways to help that.

Lauriesh · 03-05-2016, 07:01 AM

PTSD is not just for soldiers. I have seen drs use the term with with women who were raped or molested. Also, people in traumatic car accidents, terror attacks, etc.m

jacqueline1102 · 03-05-2016, 10:38 AM

Greetings all,

We opened up parameters of the diagnosis of PTSD. Whereas, the term was initially used to describe the psychological impact of war for those returning home, the behavioral symptoms are the same as if you experienced or witness any trauma; castrophic natural disasters, rape and sexual assault, childhood abuse, MVA (motor vehicle accidents), emergency responders from 911, just to name a few. The health care industry might be catching up with the world of psychology thanks to the push of the mental health world.

Being a patient and a licensed clinical psychologist working in a medical setting has been interesting. Newer physicians are more open to hearing from me about assessing for PTSD in all of our patients. What we have is not simply GAD (Generalized Anxiety Disorder). We worry because of the trauma of the disease.

Hope this helps, all

Cheers,

Jackie (a patient and a provider)

donocco · 03-05-2016, 01:48 PM

Excellent point.

Sadly I laugh when I see the Komen adds about the " Race for the Cure."
Lets assume the unlikely possibility they found "THE CURE." It would be FDA approved for advanced Triple negative breast cancer after drugs A,B,C,D and E have been used.

If "THE CURE" were wideley used.

1. Oncologists go out of business

2. Drug companies are reduced to finding new Viagras and hopefully new antibiotics

3. Labratories lose money (a lot)

4. No more mammographies

5. No more Mammography machines.

6. No more mammography technicians

7. The stocks representing whatever metals make up Mammography Machines drop

Paul

StephN · 03-05-2016, 02:34 PM

Good ideas voiced.

I think the PTSD diagnosis can come more easily with cancer patients who have experienced any of the other multiple events that can leave a person marked. For instance, many of us have been in car accidents, had other life threatening things happen, such as nearly drowning or other narrow escapes, been hurt badly by loved ones or someone very close, or seen a house on fire with people inside. All shocks.

These events can add up and then when a life-threatening diagnosis is added to 2 or 3 of the above, the PTSD is not far away.

Count me as thankful that the parameters of PTSD have widened so that more people can get help that is far beyond the normal "support group" to provide.

AlaskaAngel · 03-09-2016, 02:02 PM

Even though the depth of PTSD varies among us, the obvious conclusion that dx and tx would cause it to exist should have resulted in more in-depth focus on treating it as an integral part of the basic plan for care. ESPECIALLY given that standard treatment is based on known and sanctioned difficult overtreatment for the vast majority of patients.

For some, there is both the shock of dx and tx AND mets from the getgo, that would create PTSD.

For me, it is impossible to separate out the PTSD that I have from dx and tx alone, from the shock of being subjected to extremely inferior care by the fully licensed/approved hospital and "breast care specialist" surgeon from whom I received my initial "care". Yet that too falls within the entire reality of dx and tx and PTSD.

My impression is that health care personnel seem to make this worse by thinking of bc patients in general as being a single group of people who have been diagnosed with an eventually terminal disease, without ever adding any significant effort toward treating any PTSD. Even if they offer encouragement for early stage nonrecurrent patients, there still is a feeling that they see bc patients as terminal, and yet they don't put an emphasis on the impact of dealing with such an indefinite result.

I know that some efforts have begun toward focusing on long-term survival, probably mostly in larger cancer centers. But I don't know that those efforts include the recognition of the obvious result of PTSD for bc patients.

A.A.

Mtngrl · 03-10-2016, 06:45 PM

Some wonderful insights here. Thank you, everyone, for sharing.

It is, or should be, well known that new traumas tend to dredge up "unfinished business" from old traumas. As Steph N says, lots of people have past traumas--near-drowning, accidents, watching someone else get hurt, or even collective traumas like the events of 9/11/01. On top of that, an astonishingly large number of people experienced less-than-optimal childhoods, with abuse, neglect, emotional abuse, family dysfunction, etc. People with a score of 6 on the 10-point "adverse childhood events" index are four times as likely to develop cancer.

But, for the most part, the very high likelihood that cancer treatment will trigger someone's PTSD or pre-existing "complex developmental trauma," or, all by itself, cause PTSD, is not factored in to treatment modalities or accounted for in any way. No one treating me for cancer has ever even asked me about past trauma. They've also never assessed my psychological condition. I've never been evaluated for PTSD. I'm asked to self-report whether I have more depressive symptoms than usual, but that's it.

But if we know about these things we can take care of ourselves. People's brains can be rewired. We can learn "there is no tiger." We can engage in physical and spiritual practices that help us achieve healing and wholeness.

Jedrik · 03-10-2016, 10:09 PM

Very interesting topic, thanks all for contributing.
It's a bit different in germany: Most of us spend three days in hospital during staging and while sentinel nodes are removed. Those days include a visit from a social worker, sorting out help and claim forms, and a psychooncologist, assessing psychological needs and getting the women on track for treatment if needed. Both are available again when in hospital after surgery after chemo and between that you may call them when in need. I know of a woman who even got accompagnied to chemo because she was too afraid to face it alone the first time.
It's not their job to really work with you on the things that get you down, though. For this you get a list of local specialists, the services of most of them covered by health insurance. But how many frogs do you need to kiss until you got the one you get along with? Right now I find myself in a place where I even dread to try because it's all a bit much anyway.