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Old 06-11-2015, 07:47 PM   #1
Mtngrl
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Cancer and Trauma

People who scored 6 or higher on the 10-point scale developed in connection with the large, scientifically rigorous ACE (Adverse Childhood Experiences) study were twice as likely to develop cancer as people who scored 0. (I read this in a book by Bessel van der Kolk called The Body Keeps the Score. A quick Google search turned up several studies, including this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3679131/)

As we all know, being told you have a deadly illness and then undergoing cancer treatment are, in and of themselves, traumatic. For people with a trauma history, a new adverse event can trigger anxiety, depression, PTSD, dissociation, depersonalization, etc. related to past trauma, making the whole thing doubly or triply difficult and trying. Think, for a moment, about what someone who's been sexually assaulted goes through in a CT machine.

And yet identifying and addressing trauma history is not a part of standard cancer treatment.

But you can seek it out. As a starting point, I highly recommend the book I mentioned in the first paragraph. Another very helpful book is Dan Siegel's Mindsight.

Here's the short version: Mind/body dualism is not a helpful way to think about people. The human mind/consciousness is located in the entire nervous system, not just the brain. We are finely tuned sensing/feeling/judging/acting organisms. Our primary biological imperative is physical survival, so those systems operate automatically.

The fight/flight/freeze mechanisms that alert us to danger and keep us safe can get "stuck" in patterns that, over time, change our brains and our bodies on a cellular level in ways that damage our health. The good news is, contrary to what was once thought, the brain and nervous system can get reprogrammed/rewired.

Dr. van der Kolk talks about "top down" and "bottom up" approaches to reintegrating mind/body/spirit/thoughts/feelings. He is not opposed to psychiatric medications, and, as a psychiatrist, prescribes them, but in his book he points out the downside to relying on medication to control behavioral health. Medication can be very helpful, but it is not capable of making long-term neurological changes, but there are ways to do that.

He's convinced, after years of working with people who've experienced trauma, that the body has to be enlisted in the quest for mental health. I would add that we also need other people.

This can take many forms: yoga, martial arts, choral singing, dancing. Acting in a play (especially, he says, Greek tragedies), reciting poetry, praying, chanting are other ideas. Anything that increases mindfulness and strengthens the connection between the brain, the muscles, and the emotions can help. You can learn how to calm yourself down, focus, stay in the Now. You can interrupt a flood of adrenaline and other stress hormones with breathing techniques, visualization, affirmations, and other skills. As a bonus, this also helps with road rage, unreasonable bosses, and bratty children.

I personally think arts and crafts are therapeutic. Color. Knit or crochet. Embroider. Paint. Sculpt.

I also think beauty is healing. Get out in the sun, near water, with trees, grass, flowers, birds.

This post is already very long. But my point is the medical treatment you are getting is necessary, but probably not sufficient. You already know that in terms of diet and the need for physical activity. Your emotions, your thoughts, your mental state, are also things you can change for the better (with the help of a skilled therapist or a wise spiritual adviser). It may very well affect your cancer outcome. It will unquestionably help you live the best life you possibly can.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 06-11-2015, 09:03 PM   #2
thinkpositive
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Re: Cancer and Trauma

Amy,
I love this post! I have found the emotional aspect of cancer to be the most challenging. I've learned to embrace things like visualization and meditation. Things that I never would have even considered prior to cancer. I'm even doing hot yoga!

I start each day by naming five things that I am grateful for. I get out in the sunshine and hike almost daily. Each of these things make me feel alive and happy. Will they prevent my cancer from coming back? Who knows.It does make each day I'm alive more enjoyable.
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 06-12-2015, 04:31 AM   #3
sarah
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Re: Cancer and Trauma

great post. Being grateful, accepting each day, yoga, t'ai chi all great also physical exercise and having an animal particularly a dog, having friends, gardening, all these things I believe can help in the journey and in healing. shedding, letting go bad things from the past and saying today I begin my life and what do I chose? to regret the past and be sad or embrace the future and enjoy each small pleasure? We have choices. We must chose the good, the beautiful, the happy and let go of those things that can only make us regret our lives. The past can be a handicap. Even those of us who have had extraordinary pasts must leave them behind to free ourselves to enjoy the future. We have to appreciate each day in an almost Buddhist way. Live in the Now.
Thank you for this thoughtful post. We all have a lot to learn and unlearn.
love sarah
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Old 06-12-2015, 04:31 PM   #4
Mtngrl
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Re: Cancer and Trauma

Thank you, friends.

Note that what I'm talking about is different from the "positive thinking" that most of us get force-fed by the culture and often by well-meaning friends and family. I'm advocating that now is a really good time to heal from trauma. A lot of healing can come from gratitude, physical activity, love and friendship, and all those wonderful things that make life rich and full. But, for some of us, there is more and harder work to do.

In other posts I've mentioned guided imagery recordings. I have one I got for trauma not long after I was diagnosed. I listened to it a few times, but it brought up such intense (and mostly nameless) feelings that I haven't done it in almost 4 years. Maybe I wondered if I'd have time to excavate and remodel all that rubble and muck from my past.

Well, I'm still here, and doing fairly well except I feel "stuck." I'm supposed to be working on a PhD, but I didn't make a whole lot of progress this academic year. I started seeing a therapist, and she is helping me figure out what I feel and what I want and need. For most of my life, the answers to those questions have either been unclear or inauthentic (based on the demands, desires, and expectations of others, some of whom were quite toxic). Last week I read The Body Keeps the Score by Bessel van der Kolk and a book by Alice Miller called The Body Never Lies.

Miller was a Swiss psychoanalyst who rejected Freud (and psychoanalysis) because he knew very well that mental illness was caused by abuse and trauma. His first book said that clearly, and was based on actually talking to mental patients and believing their stories. Because child sexual abuse and physical abuse were rampant in those days (perhaps even in his own family), he backed off from that and started saying his patients were fantasizing about sex with their parents. I had read at least three of her earlier books decades ago, and this one confirms the observation that child maltreatment leads to ill health and early death.

The trauma visualization involves "taking a trip" into one's own broken heart. You're supposed to take a comforter/companion with you (in your imagination.) I did the guided imagery for trauma again two days ago. I don't remember "who" or "what" I used for a companion four years ago. (It might have been one of my dear, faithful, loyal dogs from the past. Sarah, you're so right about dogs!) But this time I had a more powerful imagined ally. It was still really intense, but it was healing. I plan to keep doing it (and keep seeing my therapist).

Here's to thriving!

Amy
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Old 06-12-2015, 08:19 PM   #5
suzan w
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Re: Cancer and Trauma

Very insightful...very
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 06-16-2015, 02:02 PM   #6
Mtngrl
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Re: Cancer and Trauma

An update:

I tried to talk about cancer and trauma in my in-person support group yesterday. To my very great surprise, the facilitator interrupted me twice to deflect what I was saying. I didn't get the hint the first time, so she was more direct the second time, saying that while what I was saying was "interesting" it was "beside the point." Clearly, I was being silenced. She's the boss, and I'm sure she had her reasons, and I obeyed her.

In four years I've never seen her do that to anyone. I could have been talking about horse racing or a soup recipe or a fight with my sister or how one of my friends never calls anymore, and she would have let me drone on awhile, and then might have gently redirected the conversation or asked someone else for suggestions on whatever my issue was. I've never seen her just silence someone.

Maybe she thought I was saying childhood trauma "causes" cancer. I wasn't saying that. But it is an established scientific fact that trauma and stress suppress the immune system. It's also known that survivors of "complex developmental trauma" are more likely to engage in risky or unhealthy behaviors and also to suffer major illnesses. Epidemiologically, there is an empirically-validated link between harmful childhoods and early death. It's like the link between cancer and smoking. That was noticed and people finally said, "Hey, people shouldn't smoke; it's killing them!" Then they said, "Hey, second hand smoke is bad for nonsmokers; it's killing them." Smoking rates declined dramatically and so did smoking-related illnesses. But we know that trauma kills (and costs billions of dollars to mop up after), but it's almost completely absent from medical practice and public health policy.

I think it should be addressed upfront in standard cancer care. But since it isn't, and I have Stage IV cancer, I'm working on it on my own.

The things she prevented me from saying are, 1) A human mind, body, and emotions are an integrated system. Make any one aspect of the system function better and everything will improve and, 2) It is possible right now with tested interventions to heal from trauma. Van der Kolk's and Siegel's books both have wonderful stories of people finding peace, love, and happiness with appropriate therapy, even people who were very, very damaged. Since cancer treatment is traumatic in and of itself, we are all unquestionably experiencing trauma.

David Servan-Schreiber dealt with this to some extent in his book, Anti-Cancer; A New Way of Life. He talked about diet and exercise, but he also talked about getting a healthier mind and nervous system. He speculated that there might be a "cancer personality." There isn't, but there are behaviors that can increase inflammation and suppress immune response. Likewise, there are behavioral modifications that can repair the damage caused by stress and trauma.

I'm not selling anything. And I'm not oversimplifying or sprinkling fairy dust. But I think this is important.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 06-16-2015, 03:52 PM   #7
PeaceMomma
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Join Date: Apr 2015
Posts: 20
Re: Cancer and Trauma

Your original post and, indeed, this entire thread, is exactly what I needed to read today. I've been so busy reading up on studies and analyzing every small detail in my medical plan, that even though I've given lip service to needing to meditate and provide for some tranquility, I have yet to act on it. Visualization is a powerful tool. I've used it in my past to help with athletic goals and other things. I need to employ it here as well. I will be looking into the books you reference. Thank you, Amy.

I would add more, but I must skip home to my waiting kiddos, who provide me with the reason I fight this so hard and make everything have meaning for me. thanks again.
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Old 06-16-2015, 04:03 PM   #8
jacqueline1102
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Posts: 183
Re: Cancer and Trauma

Hi Amy,

I just had to respond to your post. First of all, I applaud you for putting the information out there for people on these boards. I also applaud you for bringing this information to your group. I suspect your group facilitator may have felt very threatened. Whenever a group member brings more to the table than the facilitator, especially on matters of research, the ego can take a hit. That being said, she needs to seek supervision from a supervisor for what was clearly her own counter transference issues arising. To shut you down like was in appropriate. As a group member you have much to offer the members and therefore your voice has validity. You are well read and highly educated. As you have read about metastatic disease I suspect you may know more about the latest information than many of your providers. Once providers get into a routine they can become rather lackadasical about keeping up to date. Your point about trauma was dead on. I will search for my correspondence later with these researchers. Two female researchers from the University of Chicago looked at the high incidence of breast cancer in Chicago. Closer examination of DNA showed shortened telomers which are very important. The hypothesis was that women who had experienced trauma (physical, sexual, emotional) and lived in high crime areas had shortened telomers. The weakness in the study was that they only looked at women post diagnosis. Did the women have shortened telomers before their diagnosis OR after the stress of this devastating news? So, it is being studied by PhD's. Also, in the land of mental health, masters and doctoral professionals can have quite the peeing (if you know what I mean) standoff. If your facilitator has her masters and you are bringing in research information as provided by doctoral people that can indeed be hit to the ego (hers). Hope this helps. You are a fabulous steward for wanting to bring forth information to help others. Feel free to PM me anytime. I know a little about these sorts of things.

Cheers,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant

Last edited by jacqueline1102; 06-16-2015 at 04:11 PM.. Reason: telomers initially spelled wrong
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Old 06-16-2015, 04:10 PM   #9
jacqueline1102
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Posts: 183
Re: Cancer and Trauma

A little blurb on trauma and Telomers.


May 13, 2013
Childhood Trauma Shortens Telomeres
Peter Roy-Byrne, MD reviewing Shalev I et al. Mol Psychiatry 2013 May.
The mechanism of how childhood trauma gets “under the skin” might explain psychopathology in some individuals later in life.

Trauma in early life is a precursor to psychiatric disturbance in adulthood, and this association may be mediated by long-term biological changes in stress response and immune systems. Researchers in this prospective, longitudinal study carefully assessed childhood violence exposure and telomere length in buccal DNA in 236 British children at ages 5 and 10 years.

Violence exposure was defined as being exposed to domestic violence, being the victim of frequent bullying, or being physically maltreated by adults. Analyses were adjusted for sex, socioeconomic status, and weight. Compared with other participants, children with at least two of the three types of violence exposure had significantly more shortening (“erosion”) of telomeres from age 5 to age 10.

COMMENT

Shortening of telomeres has been associated with various risk factors (JW Psychiatry Jun 13 2011) and signs of poor adult health, including aging, smoking, obesity, adult psychiatric illness, and psychosocial stress. This study suggests a chromosomal/genetic mechanism that might link childhood adversity with adult psychiatric disturbances. Telomere erosion has been related to both oxidative stress and inflammation, and inflammation has been linked to childhood maltreatment. The current study result adds to a growing body of evidence that the adult psychological effects of adverse experience result in part from the biological scars produced by adverse experiences and argues for the crucial importance of preventive efforts in childhood.

CITATION(S):

Shalev I et al. Exposure to violence during childhood is associated with telomere erosion from 5 to 10 years of age: A longitudinal study. Mol Psychiatry 2013 May; 18:576. (http://dx.doi.org/10.1038/mp.2012.32)
- See more at: http://www.jwatch.org/jp201305130000....gwBjCBp8.dpuf
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 06-16-2015, 04:16 PM   #10
jacqueline1102
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Posts: 183
Re: Cancer and Trauma

More info about Telomeres. Maybe do the math on childhood trauma and telomeres and this study. Happy reading all.

TELOMERE CHANGES PREDICT CANCER
Changes in chromosomes years before cancer diagnosis could yield biomarker to predict cancer

text size AAAApril 30, 2015 | by Marla Paul
HIGHLIGHTS

First study to show pattern of telomere changes at multiple time points as cancer develops
Telomeres can look 15 years older in people developing cancer
Pattern suggests when cancer hijacks the cell’s aging process
CHICAGO --- A distinct pattern in the changing length of blood telomeres, the protective end caps on our DNA strands, can predict cancer many years before actual diagnosis, according to a new study from Northwestern Medicine in collaboration with Harvard University.

The pattern -- a rapid shortening followed by a stabilization three or four years before cancer is diagnosed -- could ultimately yield a new biomarker to predict cancer development with a blood test. This is the first reported trajectory of telomere changes over the years in people developing cancer.

Scientists have been trying to understand how blood cell telomeres, considered a marker of biological age, are affected in people who are developing cancer. But the results have been inconsistent: some studies find they are shorter, some longer and some show no correlation at all.

The paper was published April 30 in EBioMedicine, a new a new journal from Elsevier in collaboration with The Lancet and Cell Press.

The Northwestern and Harvard study shows why previous results were confusing.

In the new study, scientists took multiple measurements of telomeres over a 13-year period in 792 persons, 135 of whom were eventually diagnosed with different types of cancer, including prostate, skin, lung, leukemia and others.

Initially, scientists discovered telomeres aged much faster (indicated by a more rapid loss of length) in individuals who were developing but not yet diagnosed with cancer. Telomeres in persons developing cancer looked as much as 15 years chronologically older than those of people who were not developing the disease.

But then scientists found the accelerated aging process stopped three to four years before the cancer diagnosis.

“Understanding this pattern of telomere growth may mean it can be a predictive biomarker for cancer,” said Dr. Lifang Hou, the lead study author and a professor of preventive medicine at Northwestern University Feinberg School of Medicine. “Because we saw a strong relationship in the pattern across a wide variety of cancers, with the right testing these procedures could be used to eventually diagnose a wide variety of cancers.”

The Northwestern and Harvard study is believed to be the first to look at telomere length at more than one time point before diagnosis. That’s significant because cancer treatment can shorten telomeres. Post treatment, it’s uncertain whether their length has been affected by the cancer or the treatment.

“This likely explains why the previous studies have been so inconsistent,” Hou said. “We saw the inflection point at which rapid telomere shortening stabilizes. We found cancer has hijacked the telomere shortening in order to flourish in the body.”

Telomeres shorten every time a cell divides. The older you are, the more times each cell in your body has divided and the shorter your telomeres. Because cancer cells divide and grow rapidly, scientists would expect the cell would get so short it would self-destruct. But that’s not what happens, scientists discovered. Somehow, cancer finds a way to halt that process.

If scientists can identify how cancer hijacks the cell, Hou said, perhaps treatments could be developed to cause cancer cells to self-destruct without harming healthy cells.

Other Northwestern authors include Brian Thomas Joyce, Tao Gao, Lei Liu, Yinan Zheng, Frank J. Penedo, Siran Liu, Wei Zhang. Andrea Baccarelli, from Harvard School of Public Health, is the senior author.

The research was supported by grants R01ES021733 and R01ES015172 from the National Institute of Environmental Health Sciences of the National Institutes of Health.

Topics: Research, Health
- See more at: http://www.northwestern.edu/newscent....ZOf2veQx.dpuf
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10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 06-17-2015, 01:45 PM   #11
Mtngrl
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Re: Cancer and Trauma

Dear Jackie,

I do think my facilitator, who I love and respect, was somehow triggered by what I said. I forgot how defensive people get about Alice Miller's "poisonous pedagogy" ideas, and I made the mistake of leading with that. Miller says that a lot of normal, accepted, customary child-rearing practices are toxic to children's psychological and physical development. Bringing that up is a little like throwing a hand grenade (metaphorically) into a conversation. Everyone agrees that child abuse is bad, but it's hard to get a consensus on what constitutes child abuse. We all have a vested interest in believing whatever happened in our own family was normal. For example, I knew a woman who told me she had broken several wooden spoons beating her toddler who also volunteered in a child abuse prevention program.

I think everyone in helping professions of all kinds--including me--is presumptively working out some things from childhood that were less than ideal. I was a lawyer for 28 years, then I decided to go to seminary and become a pastor. I have a genuine desire to be useful to other people and help them, but I also have always needed to be my own healer/parent/advocate/spirit guide. I won't diagnose or judge our facilitator, but she's a therapist, so. . . .

The other theory I had about what made her so uncharacteristically brusque is she might have been trying to protect one of the other women in the meeting. She does individual work with some group members, and maybe she thought one of her clients is too fragile right now to start thinking about having been abused as a child. I know it took me many, many years to peel away all my own defenses, rationalizations, and brainwashing. One of Alice Miller's books is called For Your Own Good. You get the idea.

I know this area is fraught and tender. When the student is ready the teacher appears. I think our facilitator wasn't ready, but the fact that she heard me--or heard the beginning of what I was trying to say--may prime her to be more ready to hear more at some point.

I will keep speaking the truth in love. I'm living on borrowed time here, and I want to make a difference.

Amy
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Old 06-17-2015, 02:53 PM   #12
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Wink Re: Cancer and Trauma

Interesting reading, but my growing up family life did include any of the most heavily weighted traumas.

In my case traumas were accidental, such as being struck by a car when I was 2. Or slipping into a ditch and being rescued by a neighbor before I learned to swim (which was right after that incident!). I became considered "accident prone" in my early years.

If these accidental traumas count as much as some of the family life traumas, then I can see where there could be some correlation. But how did I escape the death sentence I was handed? Why did my body respond to treatments so well?

These questions are not something I dwell upon, but they arise from time to time during discussions such as ongoing here.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-17-2015, 02:56 PM   #13
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Re: Cancer and Trauma

P.S. Mtngrl, I do not think you are living on "borrowed" time. The life you are living is something you have earned by fighting hard for it.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-17-2015, 06:08 PM   #14
Mtngrl
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Re: Cancer and Trauma

StephN,

We'll never know for sure about anything in life, much less cancer causes and outcomes. You are in an elite club (the 1 to 2% who don't die from the diagnosis you had), but there are a few other members. It's possible that with some of the newer treatments the membership roster will grow. A friend from my in-person group knows of a woman in her town with HER2 Stage IV who recently went off treatment after being NED for a long time. It's new territory.

I'm only 4 years into this, and not NED, but nevertheless I'm doing well in terms of quality of life and ability to function, and I'm grateful.

I appreciate you Steph!

Amy
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Old 06-17-2015, 10:16 PM   #15
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Re: Cancer and Trauma

God bless you Amy for your soul, your intellect, your kindness. I could do with a dose of Amy, re all things ...even unrelated to cancer! People misunderstanding me/cutting me off before I can finish an advanced thought/predetermining the point I'm making, etc. have just soured me, in general on discussion with any but my best friend.

I started out life all hopped up and enthused on education and discussion, and have found less and less spiritual growth the more I engage with others. I'm much happier with my dog pack everyday, and walks with my best friend. I am completely sure the horrible stress I went through in my adult life lessened my immune system to open the gates for my cancer. Doesn't matter though. I believe genetic fate is determinant. Still, I hold out hope for other women coming up that they will be less stressed/more assertive in getting out of stress earlier than I did.

I love being lured back into hopeful spiritual engagement with others when I read your excellent writing. I could do with you putting all your posts together in a single blog. Twould feed my soul!
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 06-18-2015, 09:38 AM   #16
Mtngrl
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Re: Cancer and Trauma

Aw, thanks Nora!

I appreciate you too!

I know what you're saying. It's hard to find people who've done enough work on their own "stuff" to be able to sit with the discomfort that arises when deeply soul-wrenching subjects come up.

I've spent six of the last seven years taking graduate courses in theology. I started on an M.Div. in 2008 and graduated in 2012, and I started right in on a PhD. I didn't really know what to expect from seminary--it just seemed to be something I was called--or pushed--to do. But it's been a fantastic community for learning about brokenness and healing, and the members are much more open to exploring new ideas and understanding themselves and others than any community I've been in since I was an undergraduate in the 70s.

One of the best, most focused classes I took was called Trauma and Theology. I first heard about Bessel van der Kolk in that class.

I do blog, though it's kind of random. I'm not trying to attract a following or make money or be a particular "kind" of blogger. I just write about whatever is rolling around in my head and needs to get out. It's at www dot durfeewest dot com. I have mentioned my dear facilitator by name on the blog, so I don't want to hot link to it.
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Old 08-22-2015, 11:58 AM   #17
Mtngrl
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Re: Cancer and Trauma

I have blogged about trauma and the necessity to uncover secrets and lies from the past in order to heal. One of the posts (on www dot durfeewest dot com) is called "Family Secrets." You can do a word search for "trauma" to find others. One of the ones I'm proudest of writing is called "Pretending to be normal."

Amy
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