A stem cell transplant (SCT) or bone marrow transplant (BMT) is a procedure used in the treatment of lymphoma and leukemia as well as other cancers, blood disorders, and other conditions. These procedures are also referred to as hematopoietic stem cell transplants (HSCT). While this procedure has existed for decades, it came into more common use in the early 1990’s. The effectiveness of transplant varies according to the diagnosis, age, and health of the recipient. The present article aims to give general information about the experience of transplant and the emotional challenges during recovery after bone marrow transplant.
If you are considering bone marrow or stem cell transplant as a treatment option, please consult with your doctor for the most accurate, personally applicable, and up-to-date information. You can find other information and resources at the National Marrow Donor Program and the Leukemia and Lymphoma Society.
Preparation for the Transplant
Patients who are preparing for a bone marrow or stem cell transplant first receive what is called “conditioning” regimen. This prepares the body for the transplant. This will typically involve chemotherapy, radiation, or both. This phase of treatment aims to reduce the number of diseased marrow cells, sometimes down to zero. The bone marrow is the center for the body’s immune system. Thus, during and after the “conditioning” phase of treatment, immune functioning is weakened, and precautions are taken to avoid infections. Most cancer centers and some major hospitals will have a unit devoted exclusively to stem cell and bone marrow transplant; these units are specifically equipped to minimize risk of infection to patients with weakened immune systems.
After Bone Marrow or Stem Cell Transplant – A Long Recovery
Recipients of bone marrow transplant and stem cell transplant can typically expect a recovery period that takes several months. The patient spends the first few weeks of the recovery in the hospital, at a transplant unit. Several weeks after transplant, if the patient is healthy enough, he or she is discharged from the hospital. The recovery process continues at home or, in some cases, in local residential facilities affiliated with the hospital.
During this time, patients follow a specific diet and take other steps to minimize exposure to infection. Patients need to avoid crowded public places, like movie theaters. Some patients find that they are soon able to fully return to their previous lifestyle, while others find that they do not return to prior health or energy levels for quite some time after their transplant.
Life 1-2 years after a stem cell or bone marrow transplant
My clinical experience (as a health psychologist) with survivors of stem cell or bone marrow transplant has primarily been with people who are one to two years after their transplant. After one year of recovery, many people find that they have no, or relatively few, symptoms resulting from their transplant. Others find that some physical symptoms continue to bother them. The most common physical symptoms are fatigue, trouble sleeping, and sexual difficulties.
Both the transplant and its aftermath sometimes involve emotional difficulties that can take patients and families by surprise. Research has shown that after a year of recovery, about three quarters of survivors of transplant will experience some symptoms of anxiety or depression. Of these, one third find that the depression or anxiety has a substantial impact on their lives. Some patients describe these difficulties as stemming from their illness itself, as opposed to the transplant.
Emotional Difficulties after Bone Marrow Transplant
Some of these challenges post-transplant are psychological — it can be emotionally challenging to pick up life where it left off.
Other challenges are interpersonal — other people who know you went through cancer or serious medical treatment may not be sure how to relate with you now. Some will assume you want to talk about it in great depth. Others will assume you don’t want to talk about it at all. Still others will be uncomfortable with the topic themselves.
Depression after bone marrow transplant
For cancer patients generally, and for transplant survivors, depression is more likely to occur shortly after diagnosis or during treatment than it is to occur afterward. Depression during treatment can happen for several reasons, including the disruptive effect of treatment itself — jobs, routines and family lives are all interrupted. These changes can worsen the depressive effects of the illness and treatment themselves.
Depression can certainly be a problem after the conclusion of treatment too, regardless of one’s prognosis. Going through diagnosis and treatment upends your life, your assumptions, and sometimes even your view of the world. Taken together, these changes can leave you feeling depressed.
Additionally, some of the physical changes that are part of the transplant process can contribute to depression. For some people, the physiological impact of chemotherapy can produce changes that mimic, or lead to, depression. After treatment is over, many survivors are left with bodies that are different than they were. Adjusting to this “new normal” is challenging and can lead to depression.
A 2017 study found that in the five years following transplant, depression was more of a problem than anxiety. That study found that depression affected 30% of people in the first five years of survivorship. Fortunately, there are effective treatments (both medication and psychotherapy) that can help survivors manage depressive symptoms and successfully adjust to their post-cancer reality.
Help for depression and anxiety for transplant survivors
Fortunately, research has also demonstrated that the emotional difficulties described above can be effectively addressed with cognitive-behavioral therapy (CBT). The aim of CBT is to focus on the thoughts and the behaviors that maintain symptoms of depression and anxiety. CBT then addresses these symptoms with proven methods.
For example, a depressed transplant survivor may experience thoughts like, “My leukemia will definitely come back,” or “everything bad always happens to me.” There are many other such anxiety-provoking thoughts one can have in the months and years after treatment. If you’re a transplant survivor and receive cognitive-behavioral therapy, you would discuss these thoughts at length with your therapist. You would learn about the impact of these thoughts, and would explore the factual bases for them. This type of exploration is always done in collaboration with the therapist.
Unique Emotional Challenges Transplant Survivors Face
Post-traumatic stress
After treatment is over, some survivors experience nightmares, flashbacks, changes in behavior, or emotional disturbances related to their transplant or their illness. Some say that the experience of transplant itself has been hard to “put behind them.” Many describe any reminders of the transplant as causing significant distress. These are symptoms of post-traumatic stress and can be quite impactful. Posttraumatic stress disorder (PTSD) can be particularly challenging for transplant survivors because people around them expect them to be “all better,” and grateful. However, the reality is often more complicated.
Troubling reminders: Some survivors with posttraumatic difficulties say that something as seemingly innocent as a bar of soap might remind them of a soap that was used in the hospital, and thus evoke strong feelings of anxiety. This type of problem is common for those suffering from post-traumatic stress.
Behavioral changes: The symptoms of PTSD can involve changes in behavior. For example, some survivors describe taking steps like unnecessarily driving all the way across town to avoid driving by the hospital where they received treatment. Others say that they cannot bring themselves to even look at some of the belongings they had with them in the hospital while they were in the hospital. These changes may not affect the survivor’s daily life. However, sometimes avoiding commonplace reminders of your hospital experience can have a substantial impact. (Imagine the long-term effects of avoiding soap, as in the example above.)
Emotional changes: Other PTSD symptoms can be more emotional — for example, feeling overwhelmed whenever the topic of cancer comes up. Some survivors describe a sense of dread or a strong feeling that they won’t be around long, even though doctors have told them otherwise.
When problems like this start to really impact your life, it’s good to seek professional help.
Fear of recurrence
Another type of anxiety that is common for survivors of stem cell transplant is fear of recurrence. Fearing that one’s illness will return is normal for any cancer survivor. For transplant survivors, that fear often takes center stage. It’s understandable to have these fears! It’s also important to examine whether these fears are substantially taking away from your quality of life months or years after transplant. In many cases, the fear of recurrence is disproportionate to one’s actual risk. Unfortunately, this worsens anxiety.
Summing Up
Fortunately, many patients do not experience the mental health difficulties just described. For those who do, it is fortunate that cognitive-behavioral therapy provides a proven option to address the depression and anxiety that can follow SCT/BMT. If you or a loved one might benefit from cognitive-behavioral therapy, please contact us.
