by Carol A Westbrook
As Thanksgiving approaches, we think about those things in our life for which we are thankful. I’m thankful for our healthcare system, and I’m doubly thankful for the opportunity to contribute to it.
I practiced hematology and oncology for over 30 years, diagnosing and treating blood disorders and cancer. During this time I wrote a little book, “Ask an Oncologist: Honest Answers to Your Cancer Questions,” and I put up a Facebook page with the same name to help promote it. Though I hadn’t planned to take questions, I shouldn’t have been surprised that questions began to come, given the title of the page.
At first, I avoided answering questions because I didn’t want to give out free medical advice as I was wary of liability and lawsuits. Then I got this:
You are truly a coat of many colors. Just wanted to thank you again for giving me my life back. It’s been 2 1/2 years cancer free. Truly a miracle when I read the transcripts from all the reports and tests from the past 3 years. Glad you’re doing well. Hope you have continued happiness. No questions. Just letting you know you are thought of often. —From one of your patients, a colorectal and liver cancer survivor
I was touched! This post made me see how much more a doctor provides than just treatment recommendations. And how much I missed seeing patients since retirement in 2017.
Rarely a day passes that I don’t think about my practice. I miss the patient contact, that special feeling doctors get when they give a patient that something special. I decided to start answering the questions I was getting. Perhaps I could recapture some of that, and help some person somewhere in the world who is worried about cancer– and I do mean somewhere in the world! I got questions from all around the globe, not always in English, either.
Most of my “likes” and questions from foreigners were from third world countries. I could see that these folks had problems, and their doctors did not provide help or explanations. Much of the time the question was about it was a test report or biopsy that was given to the patient with very little explanation; I was happy to explain it, when I could translate it. I got posts from India, Algeria, Saudi Arabia. Some were not in English and I had to use Google Translate, though it was rough and sometimes comical with terminology. I did the best I could.
Some examples of questions I got:
-From Lahore, Pakistan, about a biopsy.
-From Botswana from a young lady with cervical cancer who did not understand side effects
-From a man in Touggourt, Algeria a city in the Sahara Desert, who asked me to interpret a mammogram report, and what the next steps would be. This question was in French; my high school French was no match for Google Translate.
-From a woman in Virginia Free State, in South Africa, with cervical cancer who had questions about the side effects of her treatment, written in Southern Sotho!
As you can imagine, several questions were not in English, and I struggled with medical terminology translated by Google translate. I did okay with most of these, but the question from Virginia Free State baffled me. Google translate came to the rescue, and told me that it was written in Southern Sotho language. This Bantu language one of 11 official languages in South Africa. I wonder how their doctors manage to care for them?
Other readers asked their questions in English, but the medical reports I was asked to translate were in foreign languages. Again, Google translate had some trouble with the medical terminology. In a few cases the report showed a high likelihood of cancer and I wanted to make sure the patient got appropriate care as soon as possible. Some questions were easy, but others were very challenging. At times I would spend hours trying to make sense of the translated reports, and put them in context with the patients’ symptoms or their friends’ questions.
Twice I was able to diagnose a rare blood condition, specifically low-immunoglobulin syndromes. These were from family members that had been struggling to get an answer.
At other times, I’d have to give bad news: yes, it is cancer; yes it has metastasized. One of the saddest of these occasions was a question from a man from India, resident in the US, whose 16-year old sister, living in France, had some form of cancer but he couldn’t understand how she was doing. When I reviewed the reports he sent, it was clear that she had an advanced brain tumor that had metastasized to the lungs and was not responding to treatment. I wrote to him,
“I am sure you are concerned for your sister, and if she really didn’t respond to treatment then I am sorry to say that her prognosis is poor. Maybe you want to visit her if you can as soon as the quarantine is lifted? I’m sure your heart is breaking for her, your little sister.”
He thanked me, and sent me a blessing in Arabic, as a short video, which I cherish to this day. It is rare for me to get such a sincere thank-you. In fact, I rarely get any feedback from these posts to see if I got it right or not. But I always feel that ai I am doing some good, and it is rewarding for me regardless.
In contrast, the questions from my American readers were very different. They didn’t ask me to interpret their test results, or explain their doctors’ suggestions. This suggested they had good healthcare and transparent communication with their doctors—if they could access it. My readers were generally not cancer patients. Some were caretakers of cancer patients. But most were healthy adults worried that they might have cancer. They wanted answers based on symptoms or pictures sent to me. Others wanted to know what their cancer risk might be, especially when exposed to carcinogens such as sprayed insecticides.. A number needed help finding their way around the health care system, and didn’t know which specialist to call, or how to get an appointment.
For example, I got quite a few questions from people with blood in their bowel movements. “Is it cancer?” they asked. I had to be pretty insistent that a colonoscopy is urgently needed. You can’t tell if it’s cancer without one, and bleeding can be serious. Most of them knew they had to have a colonoscopy, but really wanted to avoid it, and be told it’s nothing to worry about. Some did not have the insurance to afford it.
One young lady sent a picture of a toe with a large black spot under the nail, and she wanted to know if this was melanoma. It could have been melanoma but I couldn’t say. I advised her to see a dermatologist. She did, and came back to me to tell me that it was benign. I was so happy for her!
Another young lady had arm pain, described in great deal, and she was certain that it was cancer, a Pancoast tumor. She probably got the idea from WebMD, but she was panicking. She wanted answers.
My answer: “A Pancoast tumor is a tumor in upper part of the left lung that invades the brachial plexus–the nerves of the left arm. The initial symptoms are pain in the arm; as the tumor grows the symptoms progress and involve other nerves. But there are so many other causes of brachial plexus symptoms in a young person, and Pancoast tumor is one of the least common.
“From your FP picture, you seem to be a young person, probably not a smoker, and are athletic. I doubt you have lung cancer. You may have injury to your shoulder, such as a rotator cuff problem, or to your brachial plexus, a collection of nerves which come from the spinal cord and go into the arm. Brachial plexus injury can result from heavy lifting or from athletics, and it doesn’t happen immediately after the event. You might have an extra first rib at the top of the lung causing compression of the nerve, which runs over it (“thoracic outlet syndrome”). I strongly suggest that you call your doctor and have her make an appointment for a simple chest X-ray; if it doesn’t show a tumor in the top of your lung, then it’s not a Pancoast tumor. Then, your doctor can examine you and figure out what area is likely to be involved. And you don’t need a trip to the emergency room unless the pain is so severe that you can’t function.”
A few of my writers were caregivers or close friends of cancer patients, who watched their friends go through treatment, worried about side effects, or were concerned that their friend was getting worse. I felt that they mostly needed someone to talk to, someone sympathetic. Or they had questions about their friends’ medical problems. I admired them for sticking it out, and told them so. I sympathized with them. I had seen this picture so many times in my practice, and I know how much they needed support and encouragement. I tried to do my best to help with their questions, and give some support.
I got a surprising number of questions about exposure to carcinogens, and what to do about it. One woman’s husband was taking valsartan, a blood pressure medicine which had recently been recalled for containing a carcinogenic substance. Another woman was concerned about exposure to pesticides that were sprayed in a nearby peach orchard. Another was concerned about keeping pills in plastic containers, which might be made of carcinogenic materials. There was a question about insect repellants and sunblock. Each of these questions required a fair amount of research. Space constraints prevent me from giving the specifics of each question here, but I gave detailed answers to all of them. And I was careful to point out that exposure does not give you cancer, it raises your risk of cancer, and no, you shouldn’t see an oncologist, they really can’t find a cancer that you don’t have!
Most annoying question? From a woman who wanted my approval that her taking CBD (a marijuana derivative) would cure both her cancer and her blood pressure. She had a breast cancer and was put on an anti-estrogen to prevent recurrence. She didn’t like the side effects, so she replaced her medications with CBD oil. She wrote a long post and concluded,
“Ok thanks but I don’t have high blood pressure off the medicine and CBD oil is amazing. I don’t agree with you but thanks.”
I wrote back, “It’s your choice. If you want to cut down the risk of recurrence of your breast cancer, should be on the hormone medication. There are other hormones to try, and all have different effect,s so if you try another it probably won’t raise your blood pressure. If you think you can treat your cancer yourself, you are mistaken. I won’t argue with you any longer.”
I have little patience for people who insist that they can treat their cancer with untested holistic remedies better than their doctor can with tested and approved treatments. I know it’s useless to argue with someone who has such strong beliefs.
One of my most interesting and unexpected posts was from a young man who recently had a port implanted for cancer treatment. A port is an internally implanted IV line that can be reached through a small “port,” about the size of a quarter, implanted under the skin (see diagram). He writes,
“I have lymphoma and I have a central port. I’ve been wondering for some time if using a rifle would be an issue considering the location of the port. I enjoy shooting and keep forgetting to ask my doctor. Do you have any suggestions? I’m sure this is an unusual question but I can’t seem to find any info.”
A port is placed on the right chest wall, just about where you’d put the butt of a rifle. Shooting a rifle can give a strong recoil to the chest. I had no idea if it would dislodge or clot the port. I practiced for ten years in rural communities where hunting was commonplace, but I never had this question. I have to admit I was baffled. There was nothing in the medical literature. So I cheated and read blogs from cancer support groups. I learned that is perfectly safe to place a rifle on the chest wall if a port is in place. I relayed this to the patient that he didn’t have to give up a favored activity.
I’ve been answering “Ask an Oncologist” questions for four years now, and they keep coming. It has given me a new perspective on cancer care and the patients’ perception of it around the world. Since this is an anonymous forum, my writers ask anything they want. I hope I helped some of them. It certainly has been rewarding for me.
To reach the Facebook page for “Ask An Oncologist,” use this link.
Find my book, “Ask An Oncologist: Honest Answers to Your Cancer Questions,” on Amazon: