Updated May 28, 2020
A stem cell transplant (SCT) or bone marrow transplant (BMT) is a procedure oncologists use in the treatment of lymphoma, leukemia, and some other cancers and disorders of the blood. 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 afterward.
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 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 extended periods after their transplant.
Life 1-2 years after stem cell transplant
My own clinical experience with survivors of stem cell or bone marrow transplant has primarily been with people who are 1-2 years after their transplant. After a 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.
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 the illness itself, as opposed to the transplant.
Depression after bone marrow transplant
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.
Help for depression and anxiety for survivors
Fortunately, research has also demonstrated that the kinds of distress described above can be effectively addressed with cognitive-behavioral therapy. The aim of this type of therapy 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 possibilities as well. The survivor who did CBT would discuss these thoughts at length with his/her therapist. He or she would learn about the impact of these thoughts, and would explore the factual bases for the thoughts. This type of exploration is always done in collaboration with the therapist.
Unique emotional challenges
Some survivors say that the experience of transplant itself has been hard to “put behind them.” Many describe reminders of the transplant as causing significant distress. Experiencing such reminders as upsetting is a common phenomenon for survivors of any life-threatening experience, including a cancer or bone marrow transplant.
These survivors report 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 feelings of anxiety. Sometimes this anxiety has a physiological component to it, and may involve increased breathing rate, heart rate, and muscle tension, e.g.
For others, the shock of their initial diagnosis was a traumatic event that still causes real distress.
The anxiety may also result in the survivor avoiding the reminder in question. This may not affect the survivor’s daily life. However, if the reminder is commonplace, this avoidance can have a substantial impact. (For example, imagine the long-term effects of avoiding soap.) This type of problem is common for those suffering from post-traumatic stress.
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.
Fortunately, as mentioned above, only a minority of patients experience the symptoms of psychological distress just described. For these patients, it is also fortunate that cognitive-behavioral therapy provides a proven option to address the depression and anxiety that can follow SCT/BMT.