Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects
Transitioning Your Care to a Primary Care Doctor
Good medical care and accurate information are crucial in the years and decades following a transplant. Long-term survivors are at risk for certain health complications resulting from the transplant long after they have recovered and regained their strength.
Ideally, in the years following your transplant, you will continue to have a connection to both your oncology team and primary care medical providers. Even if you have a very good primary care physician dealing with your routine medical care, it is helpful to have occasional visits with an oncologist who knows about your treatment and its aftereffects. At first, the transition to primary care can be stressful, particularly if your primary care doctor is not familiar with post-transplant issues or does not communicate with your oncologist on a regular basis. As the years go by, more of your care will probably transfer to a primary care physician.
My internist takes care of routine care, but even after 20 years, I always have questions for my hematologist/oncologist at my annual visits.
I was disappointed that my primary care physician was neither very interested nor knowledgeable about the transplant and possible problems related to it. For example, when I went to her after transplant because my tongue was all white-coated, she immediately diagnosed thrush and gave me a mouthwash and medicine. I called my transplant doctor who had me come in right away and saw that my GVHD was back.
The transition to a primary care physician was more difficult psychologically than physically at first, partly because of the volume of details to transfer and translate to my everyday doctor. With every new situation, there were pharmacological or physiological issues that related back to the BMT. It took quite a few years to get on the same page.
It has been extremely frustrating trying to get care for GVHD. I have had to seek help from various sources outside of my medical plan.
As you begin to shift your care from oncology to primary care, there are a number of things you can do to ease the transition. You will have to figure out what is possible, given your situation, your health insurance, and the health care system in which you receive your care.
Choose a Doctor Who is Right for You
If your health care plan has a selection of doctors to choose from, do some “detective” work to find one that you feel comfortable with. There is no foolproof way of finding a doctor that you like, but there are a variety of things you can do to improve your chances of success. Don’t overwhelm yourself. Choose a few things that seem “do-able” and easy for you.
- Ask your oncologist, nurse practitioner, or other trusted person in the health care setting who is familiar with many doctors for a recommendation. Let the person know what qualities you are looking for – someone good at dealing with complex medical issues, who is responsive, a good communicator, etc.
- Ask friends and co-workers for a recommendation. Ask them what they like and don’t like about their doctor and the doctor’s office.
- Get information about the doctor’s training and experience. You can do so by calling the doctor’s office to request a brochure or biography. Sometimes you can find this information online by going to the webpage of their medical office. Or you can do old-fashioned sleuthing and visit your local library to look up potential doctors in the Directory of Medical Specialists, which lists doctors, their training, and licensing status.
- You can check to see if there are any registered complaints or disciplinary actions against a particular doctor. This information is available on the DocFinder website (www.docboard.org) or can be found on the website of your state’s medical licensing board.
- Once you have narrowed down your search to a few doctors, contact their offices to find out how easy it is to get in touch with them. Ask about their open hours and how to communicate with them or get care after hours. How easy is it to be seen on days when appointments are not available? Find out if you would visit with the doctor or someone else, such as a nurse practitioner.
- Make an appointment to get acquainted with the doctor you’ve selected. Ask if there is a direct way for you to communicate, such as email, if you have questions. Ask if the doctor would be open to consulting with your oncologist about medical issues that might come up.
I found a general medicine physician who opened a practice primarily for cancer survivors. After the transplant, I had a cardiologist, a neurologist, a rheumatologist, and a gynecologist, but each of them only cared about their specific part of me. I need someone to put all the pieces back together and treat me as a whole person with special needs. Finding her has allowed me to put all my health care cards back in one hand.
When I switched health care plans, I asked the receptionist in the oncology center which doctor seemed the most caring and kind, and who would be willing to take direction from another doctor. Although I don’t think she was supposed to tell me, she directed me to a lovely woman who is still my physician.
It has taken me four years to locate a gynecologist who acknowledges the effects of the transplant. She gave me a lubricant, exercise band, plus instructions to do Kegel exercises to strengthen and also learn to relax my vaginal muscles.
Communicate with Your Doctor and Health Care Team
Communicating well is not always easy. This situation can be made worse by the health care setting, where physicians are often under a great deal of pressure to see many patients. Regardless of how busy your doctor is, you have the right to have all your questions thoroughly reviewed and your concerns addressed. You can facilitate good communication by making sure that you are doing your part to communicate well. Write down your questions before the office visit and give a copy to your doctor so that your questions will get addressed no matter how hurried the doctor is. You may want to ask your physician what symptoms warrant contact with him or her. Also consider taking a tape recorder or another person with you to appointments to take notes to make sure you get all the information you need from the physician.
If your financial situation has changed, and you are finding it difficult to pay for your office visits or medications, notify your doctor and any other relevant staff in the doctor’s office. There may be ways for you to get medications at a lower cost or to reduce the cost of your office visit.
Talk with your doctors about the best way to reach them if you have a time-sensitive question or concern. Advocate for yourself. If there is a mode of communication that you would prefer, such as email, let your doctor know. If your doctor is reluctant to provide an email address, it is sometimes helpful to tell him or her that you will not abuse the privilege and will use it sparingly.
Think about facilitating conversation amongst your doctors so that everyone is on the same page. You can do this by putting together a list of all your physicians with their contact information. Give each of your physicians a copy of the list. You can also note on the sheet the best times and ways to reach you.
When I have a question about a new symptom or problem, I copy all my doctors on the email (even my acupuncturist!) so that they can all weigh in on the issue and be in communication if necessary. I’ve also found this to be an effective way of getting a response from an unresponsive doctor.
Communication from my BMT providers to my primary care physician has been nonexistent. I have had to be the go-between.
I always make sure that there is close coordination between my oncology team and my primary care team. Whenever I have a concern or question, I email it to both of them, so that they can each see the response of the other. I also make sure that my test results go to both of them.
I write down issues as they occur. Then, I take a second copy and give it to my doctor. This works better than relying on my memory to explain what is going on.
If my dentist or other doctors wish to get an x-ray or a scan, I always remind them of my radiation history. Given that radiation is cumulative, I make sure to be a strong advocate for myself and to avoid exposure to radiation unless absolutely necessary.
Track Your Health History and Health Status
One of the most important things you can do as you shift your care from an oncologist to a primary care physician is to ensure that the primary doctor is informed of your past health history and current health concerns. You can facilitate this by writing up a short summary that includes:
- Your diagnosis prior to transplant
- Date and type of transplant (autologous, sibling donor, unrelated, cord blood, etc.)
- Type of conditioning regimen you received – chemotherapy, radiation, or other
- Name of transplant center
- Contact information for transplant center (name of doctor, telephone, or pager number, etc.)
- Health problems and treatments post transplant
- Current health concerns
- Questions for your doctor
- Best way to reach you
Update this list regularly as you progress through the years, noting changes in your treatment or health. Having such a summary is useful, as it allows your doctors to see at a glance what your past treatments and health problems have been. It is also a great way for you to keep track of treatments and the bigger health concerns and issues that have come up over the years.
List Your Medications
It is also helpful to keep a list of the current medications you are taking and their dosage. Include vitamins and other supplements. This should be updated regularly and brought to your medical and dental appointments. Please use the example list below as a guide for creating your own list:
|Acyclovir 800 mg
||2 a day
|Calcium Mg + Vit D
(500 mg Ca)
|2 a day
|| Local pharmacy
|Estradiol 1 mg
||1 a day
|Fosomax 70 mg
||1 a week
|Nordic Naturals (fish oil)
* The above names, doses, and refill information are provided as examples. Your medication list will depend on your condition and should be developed in consultation with your doctor.
Having this information on hand allows you to make the most of short office visits and will ensure that your doctors are aware of your past concerns, as well as your current health and medications. Sending this information before your office visit may allow you to use the short time that you see your doctor more effectively.
I have created several documents (meds list, allergies list, hospitalization list) that I have given to all my doctors and any new doctor that I need to see. This includes my dentist. I think that this information helps doctors feel that they are part of a team. If I find a doctor who is not a “team player,” I do not keep that person.
New doctors always appreciate getting my concise medical summary. At the end of my summary, I always add my questions for the visit. This gives them a heads up about what my concerns are. The added benefit is that when doctors see that I am organized and am willing to invest time in making it easier for them, they treat me with added respect.
Track Your Symptoms
Inform your doctor of your symptoms or changes in your health by using a symptom log like the one below. Or you can record your symptoms on a calendar or in a memo on your phone or other hand-held electronic device.
||Fever 102, threw up in morning + diarrhea – Resolved by evening
||Skin GVHD worsened. Red, itchy, raised blisters that scab.
|| Apply Protopic twice a day
||Ofloxacin 0.3% - twice a day for 5 days
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