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BY KATHY LATOUR | OCTOBER 13, 2011
Is anyone surprised that a new study shows 40 percent of cancer patients have symptoms of post-traumatic stress disorder. The study says one in 10 patients said they avoided thinking about their cancer, and 1 in 20 said they steered clear of situations or activities that reminded them of the disease (read hospital).
The symptoms of PTSD, according to the write up, are being "jumpy" and "having disturbing thoughts about cancer and its treatment or feeling emotionally numb toward friends and family."
Evidently only a few of us get full-blown PTSD, the rest of us get symptoms that can persist into the future – no kidding.
Sorry for the sarcasm, and I am actually glad they are doing this research because I'll take it to the next tech who tries to draw blood from me.I've learned to warn them not to fish around in my arm if they don't get it on first shot – because I tend to get violent. Jumpy doesn't begin to cover it.
The last tech started to chuckle and then looked at my face, "You aren't kidding are you," he said. "Nope." Someone trying to put a needle in my left arm takes me back to chemotherapy. Or rather, it takes my body back to chemotherapy. The last time a tech came at me with a needle, I said very tersely, "Do you know what you are doing?"
She looked at me very calmly and then drew my blood. It was, as they say, "a good stick." I've also learned that if I tell techs I need a pro, they will self identify – or go get one. For a while during and after chemotherapy, I couldn't drive toward my hospital because I got sick to my stomach. I didn't' attribute it to PTSD, but to becoming Pavlov's dog. I see the hospital, I get chemo, I throw up. I just eliminated the chemo and got right to the bad stuff.
The study on PTSD was published in the Journal of Clinical Oncology and is based on a survey of 566 patients with non-Hodgkin's lymphoma. It was conducted at Duke Cancer Center in Durham.
I wonder if the patients they tested were getting any kind of psychosocial support. I think that if we learn to face our demons, it's easier to go on. They didn't specify in the study if there were particular issues patients gave, but I know that for three years after my diagnosis I was a total wreck thinking the cancer was going to come back. Then I joined a support group where I could talk about my fears and know that it was a real possibility and decide what to do about it. The report also said being diagnosed with cancer is stressful and it stays with you. I say being diagnosed with cancer changes us – forever.
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I had two cancers - breast in 2003 and lymphoma in 2009 and I am still reeling. It's like coming out of a fog because when you are going through cancer you are scared; sick and not the person you were and know that you will never be that person again. Even though I am so blessed to have survived these cancers and here to talk about it life as I once knew it will never be the same. I read an interesting quote: cancer can leave your body but it never leaves your mind. Fear that it will come back is constant. While I was having chemo there was a patient that was there with her 4th cancer.......God Bless her. To this day I feel as though I need professional counseling. It's a day at a time and I want my friends to try and understand me and I can honestly say most do.
- Posted by Margie Porreco 10/14/11 1:00 PM
Bone marrow biopsies do this to me....I have nightmares and flashback to the experience. My therapist has finally gotten my docs to agree to knock me out next time. Just getting into the car and going to the cancer center makes me jumpy....
- Posted by Deb Konrad 10/14/11 2:37 PM
PTSD also affects caregivers and loved ones. I still have flashbacks any time I drive near any hospital, recalling the days I spent there by my husband's side. I also have survivor's guilt and often ask why he got the cancer and not me. I have been in therapy for 3 years now and it does help, but some of those memories are deeply imprinted. I don't want to erase them, just soften them a bit so I can deal better day to day.
- Posted by Tara Gibson 10/28/11 9:15 AM
OMG, they finally have an article talking about this issue. I am now a survivor of 6 years but I still have my moments of PTSD when having to visit any doctors office, when needing to have blood taken, etc. So I am so glad this has finally been explored.
- Posted by anonymous 11/9/11 4:57 PM
I can totally relate to the post traumatic stress issues! I was 25 years old when misdiagnosed with adenocarcinoma (unknown primary). It took a week to find that I had papillary thyroid cancer that had spread to the lymph nodes. It's a "good cancer" to have, but nonetheless, it's called cancer. I remember being terrified for months. One day, I went to the Christian bookstore and broke down in tears. The lady prayed for me that God would take away my fear, and He did. Now, 27 years later, I am fine and the only rembrance of my incident is when I go for bloodwork. I don't really fear anymore, but I do have a "whitecoat" fear. Since that time, my husband has had both prostate and colon cancer! Both caught early, but at the time of diagnosis, we did not know the stage and had to wait for surgery to find out. Then it is still a waiting game. I think I was more afraid when he had cancer than when it was me. We are both fine. It's been ten years since the prostate cancer and almost five since the stage 1 colon cancer. My husband's prostate cancer was found BECAUSE of the PSA test! I hate to see them take that away from men! My husband's colon cancer was found because he had his first screening at age 50, and there it was! A miracle that it was found early.
Now, my sister-in-law faces endless appointments due to her multiple myeloma. I go with her and at times, I want to run out of the office. But gradually, I am becoming more comfortable with the oncologist. Maybe it's good therapy for me?
- Posted by Linda 11/9/11 8:14 PM
Am so relieved to see this article. I had breast cancer in my mid-40s, and it came back eight years later. I see a therapist once a month to help with the anxiety. The PTSD is a huge challenge, especially after 8 years of great check-ups.
- Posted by Kathryn 11/9/11 8:18 PM
Thought I'd share -- at age 10 I survived a brutal sexual assault. At age 24 I was treated for Cervical cancer, likely caused by HPV infection during the attack, and had surgical treatment (conization of the cervix). At age 49 I received a very unfortunate diagosis of Vaginal cancer. I received chemoradiation, meaning that I had external beam radiation to the pelvic and inguinal lymph node areas, along with weekly Cisplatin chemotherapy. This phase of treatment was followed by five treatments of "brachytherapy," delivering radiation directly to the tumor via a 6" long, cylindrical device with radioactive "beads" inside (Freud would have secretly swooned over this obvious phallic symbol!) which further burned away the tumor (along with everything else in it's path, of course). Now, if that's not a RE-ENACTMENT SCENARIO of my childhood trauma, then I don't know what would be. And yet, for some reason, I never had a single symptom of PTSD during these treatments, in spite of having to lie still with that device inserted into my vagina for over an hour each session, every few minutes feeling the "buzz" of the radiation being delivered. I read a book during the treatments! Resilience remains a mystery to psychology, but it is fascinating and I feel blessed to count myself among the resilient. Be well, all.
- Posted by anonymous 11/9/11 8:24 PM
After treatment (Chemo and Radiation)for advanced Stage3 Colon Cancer. I could not sleep! Every time I felt some thing different with my body while laying in bed trying to sleep - my heart would just "RACE" pounding so hard.I thought cancer had returned and I couldn't just lay there. I ended up with heart palpitations and anxiety attacks.I actually developed insomnia!Went in for a stress test and it all turned out fine. I am on a 100mg sleeping pill to this day. It has only been 6 years but it never leaves you. I know that with my check ups and staying on top of my health I am going to be fine. But the fight to survive from CANCER was a HUGE fight and although I feel as if I beat it - I'm scared that it can return at any time. I read that Chemo and radiation can actually cause other types of cancer in later years so - when does it actually end?
- Posted by Jamie Hotzler 11/10/11 12:24 PM
I am a survivor of two cancers, thyroid 40 years ago, and stage IV bladder 11 years ago. I came to realize the PTSD symptoms after the second cancer detour-- 6 months of chemo, numerous needle sticks, endless CTs, etc, and of course bladder removal and Indiana pouch construction. It took me about 10 years before I could eat graham crackers [as in the chemo suite]without gulping had and thinking I was back there. It also took a long time before I could drive down the highway in early, passing the hospital, saying to myself, you can keep going, no one is going to cut you open and reassrange your organs today! I still do have to do some anxiety management when I go for blood work, and since my veins are still trashed from chemo, it sometimes takes several sticks to find a good vein, But they do listen to me about good likely sites!
- Posted by Karen 11/10/11 1:30 PM
I just read the article about PTSD, in people having dealt with a cancer diagnosis. A light bulb went on in my head and I knew that is what is truly going on, in my life. I am a 2 time breast cancer survivor, 17 and 7 years ago. In the last 2 years, I have noticed some anxiety and jumpiness, that was never a part of my personality.I am trying to deal with it, not really into medication...the strength I used to fight cancer, is helping me. I am just happy to know, I am not losing my mind, thank you Cure for the great info.
- Posted by Annette Keenan 11/11/11 7:46 AM
Although my cancer is trumatic, it occurred through no fault of anyone. Instead of taking it out on nurses, blood techs etc. I embrace their care and dedication. If this were fifty years ago, I would have been dead by now, and my kids would tell my grand kids that " Grampie died of old age."
During the past year, I have battled prostate cancer with two surgeries, hormone therapy, and chemo. Although the side effects have been difficult, I am alive and well.
When I receive my treatments, I express my gratitude to the medical professional for their dedication to duty, and their decision to help keep guys like me alive as their chosen profession. I DO NOT threaten them if they make a minor error, and do my best to tell a joke they may like.
Cancer is not a license to abuse people who are trying to help you. Give thanks to the wonderful people who attend medical school, train under difficult conditions, and dedicate their professional lives to helping cancer patients.
If you are suffering from PTSD, seek professional help. Believe me. I am a Viet Nam vetran, served 32 years as a city police officer, and lost my wife of 32 years to cancer in 2003. Professional help got me through it all. NOT taking it out on people who were trying to help me.
- Posted by Jim 11/12/11 11:11 PM
I am a seven year survivor of stage 3 breast cancer. My family has never really understood my "problems" with needles and going by the cancer center. I would gag and become anxious, and they thought it should be over by now!! So it is great to hear that this is ok, and a little bit "normal" for those of us who have gone thru cancer, and ALL that it involves...thanks!!!!
- Posted by Gale 11/13/11 2:53 PM
I'm so grateful I stumbled across this story. I thought maybe I was just...crazy. Post-traumatic stress disorder makes much more sense. I've been in remission from Non-Hodgkins Lymphoma for just over a year and have been seeing a psychologist since mid-way through the chemo last summer. THIS summer I really had expected to be "normal" again since I'm in remission. Nobody had prepared me for the truth: that I'll never be "normal" again Few people want to hear that your life has changed so dramatically that you are not even "you" anymore. I did seriously think I had gone insane, and suicide has crossed my mind way more often than I'd like to admit. I'm much better this fall, having finally been put on an anti-depressant that works for me. I just wish I had known more about what to expect AFTER the cancer experience. Maybe I wouldn't have suffered so badly since going into remission. Thank you so much for the blog.
- Posted by Lori Rasmussen 11/15/11 6:30 PM
At 29, I was diagnosed with Hodgkin's lymphoma in Dec 2010 and had a combination of chemotherapy and radiation from Jan 2011 to May 2011. Scans showed no evidence in disease shortly after. I was happy for the first 2 months after cancer. Having put my life on hold for the past half a year, I was anxious, even excited, to resume my "old life" and carry out all the wonderful plans I had made pre-cancer. These included marriage and relocating to another country for grad school. Executing these plans put me on auto-pilot so there wasn't much to think or feel - I just got on with it, because there was lots of work to do, making up for lost time etc. But once the dust settled, I crashed within 3 months post-treatment. It hit me that I was different, and those plans were made for someone else. Like the previous poster, no one prepared me for life after cancer. My onc shook my hand and said I was free of cancer, but he didn't prep me for the mental and psychological beating I might encounter. Right now, I'm depressed and regretting not having taken it much slower after treatment. When you're a young adult, you just want to rush back into life and play catch up. After all, your peers are racing ahead and you've got milestones to reach. Big mistake. I'm completely stressed out, have sleep and mental problems and keep wondering "how did I end up here." I really wish I had managed my life right after treatment better. I'm a real mess now, never been like this before. I pray I'll be able to crawl out of this hole sooner rather than later. But with the late effects and lack of comprehensive support, I'm not sure what'll happen. I'm angry, but can I blame anyone other than myself? Or even myself for the matter? There needs to be greater awareness on how to handle life after treatment. It should be part of the care plan.
- Posted by HSH 11/16/11 6:09 AM
I am a 7 year survivor of Leukemia. I was recently hospitalized with pneumonia and pleural effusion in the right lung. They determined it was caused by the target therapy drug I take every day. I was taken off of it for two months but I'm now back on it at half dosage to see how I do. I feel anxious every day thinking my lungs are filling up with fluid. I am sitting here right now as I write this with pain in my chest which feels very much like when I was put in the hospital in September 2011. I've actually been feeling like this for more than a week and just told my husband tonight because it seems worse. I just wanted him to know in case I suddenly got very sick. If this is another pleural effusion, I will not be able to go back on this drug therapy and have no other drug options unless the two drugs that are in clinical trials get FDA approved. I have been waiting to call the doctor because I was hoping it was indigestion but don't think so. I am happy to see that there is more attention and caring about the psychological journey that seems to go up and down as issues arise. Thank you
- Posted by Paula Logan 11/20/11 3:11 AM
I'm a 12 yr survivor of non-hodgkins lymphoma. diagnosed in '96, and had a bone-marrow transplant in '98. still have times when I find myself grinding my teeth, or holding my breath.the hardest issue for me is having blood drawn--I'm as they say-- "a tough stick". Each of us seems to have a fear--rational, or otherwise, that will be with us now that we are no longer the person that we were the day before the diagnosis. Thank all of you for sharing. We will all do the best that we can in our brave new worlds; we have so far. sending my best to all.
- Posted by carol nicastro 11/28/11 12:37 PM
I have had 2 different cancers: breast and rectal- 3 years apart. I am also an oncology nurse and have administered chemotherapy to my patients (adults and kids) for over 20 years. What I realize in my situation is that: the encouragement I gave my patients, to continue their prescribed therapies and not quit, is easy to give but hard to follow through on. I had to confront myself with the fact that I was in a position to do something that I had asked and encouraged others to do but found it hard for me to continue. I did complete my treatment but I do believe the experience affected me and my reactions to daily life experiences. This is not discussed in a therapy situation nor is it recognized until studies like this one shine a light on it. Glad to see there are so many survivors now a days- that research is taking a look at our issues. Thank you!
- Posted by Laura Mortensen 11/30/11 12:13 AM