Emotional Health

Post-traumatic stress syndrome (PTSD) may occur when an individual has been exposed to a traumatic event and responds with fear, helplessness, or horror. It is now recognized that a small percentage of patients being treated for cancer experience PTSD. The trauma-related symptoms in patients with cancer have been under increasing study. Individuals with a history of PTSD are at a substantial risk for continued emotional difficulties so it is encouraged that these patients receive timely and effective treatment for this syndrome.

It is difficult to recommend a “best therapy” approach for PTSD. Most clinicians recommend a multimodality approach, using components of therapy that meet the specific needs of each patient, taking into account any concurrent psychiatric disorders such as depression or substance abuse.

A crisis intervention approach is often recommended in order to facilitate the adjustment of patients experiencing cancer. In this approach, the therapist takes an active stance focusing on problem resolution, teaching specific coping skills, and providing a safe and supportive environment. Cognitive-behavioral approaches have proven very effective. This approach includes the former in addition to the use of relaxation techniques, restructuring cognitions or negative thoughts, and providing exposure to opportunities that provide systematic desensitization of the symptoms being experienced. Support groups have also been shown to benefit people who experience PTSD. In the group setting, patients can receive emotional support from others who have experienced similar symptoms, thereby validating their own feelings and learning coping strategies from others.

For patients with severe symptoms, psychopharmacology may prove effective. Antidepressants may be used when the symptoms of depression occur with PTSD. Antidepressants are also useful in decreasing the hyperarousal and intrusive symptoms that often accompany PTSD. Antipsychotic medications may reduce flashbacks and antianxiety medications may help reduce arousal and anxiety. Therefore, the best therapeutic approach to PTSD may be a combination of therapies tailored to the individual’s experiences and symptoms. Most importantly, therapeutic intervention is highly recommended for any person experiencing any of the symptoms associated with PTSD.

First, I hope that you have undergone adequate lymphedema treatment. There are treatments available and most are now covered by insurance. Treatments include compression sleeves, manual lymph drainage (MLD) by specialty trained lymphedema therapists, special bandaging, sequential gradient pump, or some medications (although diuretics have proven to have little effect). Of course if your lymphedema is ever caused or made worse by an infection, then antibiotics should be prescribed.

You mention feeling isolated and embarrassed by the lymphedema. This may be due to the fact that you feel the lymphedema is a sign that you had cancer and the diagnosis in itself is one that you struggle with. It may be difficult for you to tell people why you have lymphedema if asked, or you may be afraid that you will be asked and the cancer is an experience you don’t want to talk about. Did you have body-image concerns prior to the cancer that have been exacerbated by the lymphedema? If you answered yes to these questions, you may have underlying emotional issues that are unresolved and that are triggering your embarrassment and isolation. I would strongly recommend seeking out a therapist who can help you overcome these painful issues. You can also reach out to lymphedema societies that provide ongoing support for patients who suffer from lymphedema: the National Lymphedema Network at 1-800-541-3259 or http://www.lymphnet.org; the Lymphedema International Network at http://www.lymphedema.com.

I see now that you have answered the question I just posted about symptoms. When a patient also suffers from lymphedema, the psychosocial issues become compounded. Lymphedema is a daily reminder of the cancer, and causes embarrassment and social isolation. No one wants to look like a freak, and especially someone who's been through the trauma of cancer.

I love this question and I hope you do not mind a long answer.
After my mastectomy, I was very confused about the surgery itself. As a veterinarian, I wanted the gory details but really was not getting any. I did not understand where the expander was in relation to my muscle and chest wall and I also developed a large hard mass in my arm pit that my doctor did not seem to be able to explain. It was extremely uncomfortable and I had to keep my arm raised to minimize the discomfort. Communication was very poor with my surgeon and staff at this point. My drain was also pulled, to my surprise and I was given the pathology report on my way out the door. At a previous visit, my surgeon told me that he had gotten everything and the 3 sentinel nodes taken were clean. I read the report in tears on my way home. The report stated that the original mass (IDC) was nonviable scar tissue but it also reported another small mass, invasive lobular carcinoma, not previously detected, with 0 margin of clean tissue on the chest wall side of the tumor. Not good. It also reported that 11 nodes were taken, not just the 3 sentinel nodes. Fortunately, they were all clean. The real concern was the lack of clear margins. My understanding at that point was that radiation would be necessary but also not possible without removing the expander. I had no one to talk to and the weekend to survive until I could get more information. I was a mess. I saw my surgeon the following Monday and he allayed my concerns about the free margins (which were confirmed by my oncologist). The next day, however, I was in the ER with a 104 fever and an infection.

During my post surgical complications, I knew I could not continue healing at my best in my current state of mind. I was unhappy with the poor communication I was having with my surgeon and his staff and I just did not trust the conflicting information I had been getting. I was seriously considering changing surgeons/hospitals. I knew, at this point, that I could not change my surgeon and how he interacted with me nor could I change the culture of the hospital and staff. The only change I could create was in myself and how I chose to engage. With the help of author Caroline Myss, (Defy Gravity), I meditated and focused on reinventing my relationship with my surgeon (and my life). I surrendered to the situation and flipped my state of mind from one of fear and anger to love and trust. It required daily/hourly effort (or remembering) initially, but the benifits were so powerful and freeing, it literally had a momentum and staying power of its own. Simply put, a choice.

I'm not sure that fear ever goes away. No matter how far out we get, no matter how many clean scans, it lurks in a closet waiting...

I agree with everything written: make the healthiest choices possible and embrace the moments we have. The only thing I might add is to give yourself permission for the rough days. For me it was often a scan or test that yanked the fears out of the closet and demanded I confront them. It's so very normal to be afraid, and the only way to deal with it sometimes is to walk through it. Remember there was a day when an initial diagnosis was your greatest fear, and you had the strength to manage it, overcome it, and move on. Trust in yourself that while it's okay to be afraid, should you ever need to, you have the inner stregnth to do it again.

For me that was an important issue. My kids were 18months and 3 1/2 yrs old when I was diagnosed. My youngest didn't understand much of what was going on, but was really close to his mommy. We tried to prepare him each time we knew I would stay for extended period in the hospital, just so it wouldn't surprise him as much. But as for the cancer itself we didn't discuss it with him.

For my oldest, that was another story. First, she was extremely sensible to the tension that installed itself in our house and the following stress. SHe also asked a lot of question. I soon realized she dealt with things better and more easily when she knew what was coming. So we borrowed a book from the cancer psychiatry unit: a story where a mom was getting sick and then got better. It helped her focus her questions and me direct the information better. I wanted her not to be too afraid of the fact I was lossing my hair (a big thing for her), that it wasn't the dr that were making me sick (because each time I came back from chemo, she always wondered why drs made me sicker instead of better, and used the scars from my the installation of a permanent portacath for chemo to gibve her a "visible wound" to focus on, since cancer was inside of me.

I know that while discussing with other moms, with older kids, being reassured about the possibility of death cvould also be a consideration. It wasn't the case with my own kids. But overall, I say don't hide it or play it down. No matter their age, kids sense things and it is less scary to be told beforehand what is coming than to have the shock to see it and not knowing what is happening exactly.

Therapy, relaxing hobbies, guided imagery, exercise. All these are really vital to your spirit, mind, and body.

Blogging was a huge assets as I coped with cancer treatment, and now with that all over, it’s still one of my top outlets for creativity and conversation. Here’s a short list of how blogging can help (i.e. ways it helped me)

Connections: A blog is borderless – family and friends from around the world can check on your progress.

Outlet: This is the place you can be far more honest than an in person exchange. People used to see me and say, ‘how are you coping.’ And I’d say fine. But then on my blog I never had any problem talking about the exhaustion, frustration and fear. I think socially we’re programmed to say everything is okay – but blogs don’t work like that. If everything ways always, ‘just fine’ there’d be little to write about in a breast cancer blog.

Courage: Admitting online about an illness is huge. Basically anyone, anywhere can know my story, but because of this I’ve come to embrace my experience and use it as a strength. If someone wants to talk about the cancer, that’s no problem. I don’t shrink from an honest conversation.

Creativity: What a fantastic way to get creative. From the design (it’s like home decorating but free) to the content to the art work – my blog screams: “Catherine was here! And she’s gone nuts with the crayons again.” Drawing and writing combined gave me different perspectives on how I felt, and it was only due to my blog that I was doing either so often.

Community: When first diagnosed I asked about support groups and was told that for a young woman with breast cancer, there really wasn’t a good support group. So instead I looked online (Narrative Nipple, Bumpyboobs, Facing Cancer, Twitter, Talk About Health, Facebook). Often I meet the same survivors again and again, and I love it. There are amazing people online, and blogging is a great way to introduce yourself to the community.

Thanks for the question! Hope I haven’t overwhelmed you with this seriously long answer :)

One of the most common psychological responses to the experience of cancer is anxiety!

A clear distinction does not always exist between the normal fears that cancer initiates and other anxiety reactions that are intense. What is known is that cancer is a stressful journey and normal anxiety reactions present at different points along the cancer continuum: at diagnosis, during treatment, at recurrence, and other times when the patient does not know what to expect and feels powerless to what is happening to them.

The most effective anxiety and stress relief technique I have found is in the form of education! I believe that if the patient has insight and knowledge about what exactly is happening to them and what they are facing, it gives them a sense of control and empowerment. Thus, decreasing the amount of stress and anxiety! For example, if I were to do a bone marrow biopsy on a patient I would first explain the purpose of the test. I would then take the person through the procedure one step at a time so that they would know what to expect at each moment in time.

Apprehension and fear drive stress and anxiety. Feelings of helplessness also contribute to stress and anxiety. To me, knowledge translates into control. It is important for us as healthcare practitioners to make the patient an informed "partner" in the his or her health care plan.

After education I believe in relaxation techniques such as progressive relaxation, deep breathing, guided imagery, yoga, biofeedback, and meditation. Progressive relaxation and deep breathing techniques can be learned easily by the patient and can give them a sense of control over what may be a frightening treatment or procedure. Listening to relaxation or guided imagery tapes during chemotherapy treatments is very effective in reducing anxiety.

There is also a role for the short term use of anxiolytics (drugs that reduce anxiety) such as the benzodiazepenes (ativan, xanax, etc) but these should be reserved for special circumstances, e.g., the fear and physical discomfort associated with a bone marrow biopsy.

Educating the patient is weaved through all the interventions mentioned and is my number one choice!

A woman confronting mastectomy can do several things to prepare for the emotional loss of her breast. Losing one's breast will have an impact on body-image, self-esteem, and sexuality.

To help with body-image the woman can educate herself regarding options post-mastectomy such as reconstructive surgery or the prostheses and bras that are available. If the woman is prepared for one of these options prior to mastectomy she will feel more empowered and less vulnerable than the woman who waits until she has already lost her breast. Investigating reconstructive options can take place prior to surgery and reconstruction can even take place at the time of surgery, dependent upon the type of surgery and the reconstruction chosen. For a woman who does not choose reconstruction it would also be helpful to learn about available prostheses and bras prior to surgery. Although it isn't advised to wear a prosthesis until the chest wound has healed, educating oneself about the options available can help prepare the woman for body image changes.

Reaching out to other women who have had mastectomy can be very valuable emotionally. Many hospitals or private practice settings have arranged for cancer survivors to be available to talk to others who are in a similar position; much like the American Cancer Society's Reach to Recovery program. Talking to someone else who has survived mastectomy can provide hope for emotional healing.

Losing one's breast can be an assault on a woman's sense of femininity and wholeness both of which play an important part in self-esteem. Expressing one's feelings about the impending loss of one's breast is very important. This should begin at the time the decision of mastectomy is made. Sharing with a partner, a friend or confidant can begin the process of grief. Grieving the loss of the breast is normal and should be encouraged so that healthy psychological recovery can take place. Losing a body part is devastating and the emotions associated with the loss require a healthy outlet. If a woman cannot confide in a partner or friend then therapeutic intervention in the form of counseling is advised.

Mastectomy affects the total being, including the sexual aspect's of one's self. The breast plays an important role in our sexuality. Sexuality not only refers to intercourse but also to intimate body language, hugging, kissing, and touching. Mastectomy can alter a person's sexuality but it cannot take away a woman's sense of her sexual self. If a woman can express the role that her breasts play in her sexual being, this is a first step in identifying how the loss will be translated emotionally.

Empowerment occurs when the necessary insight takes place for the individual to successfully meet the challenges faced with mastectomy. Preparing emotionally for losing a breast depends upon grieving the loss and gaining insight into the meaning of that loss for the woman.

Cancer is a disease of both the individual and their families. Spouses, parents, children, and significant others are profoundly affected by the diagnosis. The first step in helping our spouses/significant others to grasp the emotional changes we've been through is to understand that although it may be difficult for them to express their own feelings, in the majority of cases, they care very deeply about what has and is happening to us.

Unfortunately, just as our diagnosis was a shock to us, most often spouses and family members are tossed into the caregiving role without warning and without the necessary communication skills that are so important for providing compassionate care. Our loved ones may also be so affected about what is happening to themselves in relation to what is happening to us that their focus is inward or expressed inappropriately. For example, a spouse or loved one may be very angry about the cancer diagnosis and treatment and inadvertently project the anger towards you. Fear also underlies blocked communication and your loved ones may be afraid that they cannot meet emotional needs or provide adequate comfort. These factors often put the responsibility of effective communication on the shoulders of the individual who is experiencing the cancer. We must be able to identify our own emotional needs and then take responsibility for communicating these needs to our loved ones.

In a practical sense identifying our needs begins with "I" statements to our loved ones, such as "I want" or "I feel" or "I think." Being clear and clarifying our needs is important with statements such as "I sometimes feel frustrated when my hands ache from neuropathy and I'm unable to do the chores around the house, therefore I need you to help me." Asking your loved ones if they understand your needs is also important. An example might be, "I keep asking myself if I should share my diagnosis with my parents. What do you think?"

Finally of course, we must be receptive to the feedback that our loved ones communicate and also be receptive to their help and support without being defensive. It is a challenge for our loved ones to grasp the emotional changes we've been through when they are going through their own changes at the same time. Once a cancer is diagnosed the repercussions reverberate throughout every relationship--spouse to spouse or individual to individual. Therefore, the first step is clear understanding of these changes through effective communication. Besides taking the responsibility on ourselves alone there are support networks and support groups that can also help your loved ones understand the journey you are taking by listening and being informed by others.

Thanks for another great post.

It's sad that the following is not always so "simple:"...

"Simply having someone be with you and accept you for what you are feeling and thinking without judgment can be extremely healing in and of itself."

...but when you do have someone like that, it's true, it's so healing... and it probably helps you to heal "faster" than if you have a person who wishes you'd "get over it."

Often, things that are deceptively simple are also those that we treasure the most.

This is a wonderful, detailed and thoughtful post. Thank you!

PTSD stands for Post Traumatic Stress DISORDER.... is it possible to experience post-traumatic stress without it being "full-blown" PTSD? Thanks.

Anxiety is the result of putting ourselves into the future and anticipating bad things. Mindfulness is a philosophe re-discovered by Jon Kabat-Zinn that suggests that if we can live in this moment, this one... where we are living and breathing, we can moderate our anxiety and depression considerably. Mindfulness is a simple concept but a challenge to perfect. Here is a program by Dr. Kabat-Zinn where he describes the approach. http://www.youtube.com/watch?v=qvXFxi2ZXT0 Look for his book "Full Catastrophe Living" or "Mindfulness for Beginners."

Using yoga breathing at the time of sleep as well as stretching can reduce muscle tension and the levels of excitatory hormones in your body that could be involved.

Since I'm not a doctor or herbologist, I can't comment on medications or herbal remedies. Check with your doctor before beginning any herbal or natural remedies as they can interact with medications you take and cause serious consequences.

I have a blog that is geared toward metastatic cancer called www.MiracleSurvivors.com. I am a stage IV breast cancer survivor, author and blogger who is doing very well after almost four years after my recurrence. There is hope, and I share stories of other people who beat the odds, as well as things to do to improve your outcome. It's a nice community, and I'd love you to join us!

Well first I had to take a break from being on treatment autopilot for a year. I had to focus on actually processing what happened to me. Dealing with the emotions of every step of my journey has let me actually leave some of these things in the past. I think yoga, mediation and therapy are VERY important. I was never very active with these things before because a. I'm a cardio junky and b. I just didn't have time. But now I put other things aside to make time to stop and think each day. It really helps me recenter and let go of stress that is unhealthy for me to carry around. I'm sure all of us can say that cancer has given us a new perspective on life. It's made me a much calmer person with my day to day life. Yes we all fear the disease will come back but eliminating unwanted/unneeded stress can actually make us healthy!

I agree with the above suggestions.

I will also add that you need to stand up for yourself. Do not be afraid to ask questions. Make sure your medical team knows how you are feeling. They can't help if they don't know. You deserve certain things as a patient and if you are getting them, you will be more in control. You may need someone to assist you, but, that's okay too.

It will get easier.

In my perfect world scenario, no woman who is newly diagnosed should be making her health care decisions without backup. Backup may be a friend, a family member, a nurse advocate, a social worker, etc. With that in mind, here are a few suggestions:
1. If nothing else, make sure that you have someone with you at critical doctors' appointments. This person should be able to ask questions, take notes, etc. Ideally, they'll be someone who is good at explaining things, so that if you have questions later, you can check in with them.
2. In addition to having a back-up person, consider using some technology. Take a digital recorder, or use the recording tool on your cell phone.
3. Set aside some time to process your emotional reactions. If you need an evening (or several), to cry, to say that it's not fair, to freak out, please give yourself that time.
4. Use resources to generate questions if you're feeling overwhelmed. Sites like this one can be a great place to get some direction on the things you may need to ask. The social worker or nurse advocate at your cancer facility should also be able to help with that.
5. This may make me sound like a broken record, but I also think it can be valuable to get additional support, particularly during the most intense period of decision-making.
I know that this is a huge topic, so I'd welcome any follow-up questions.