ITCHING TO BE HEARD..WHY DOCTORS NEED TO LISTEN TO THEIR PATIENTS

Attached is the link to an article just posted from the mother of a woman I helped get diagnosed with Lymphoma finally thanks to my original story that was posted on Nutmeg Aspirin.

You never know how your words might make a difference in the world. So put it out there! I am in touch weekly with Anna and her mother now, helping them navigate everything from the side effects of treatment to the emotional impact and next steps.

A former Duke classmate and friend of mine told me at a lunch three years ago, when he took me out while I was in the middle of treatment, that cancer would become my new community: those with it, those who might have suffered from it or might be wondering if they have it? It was so astute. And accurate. I can say that once you go through something like this all you really want to do is move on and never think about the experience again which was traumatizing and a form of torture and hell. But that seemed impossible to do. I had a monkey on my back. I knew I had to get my story told of how long I suffered and how long it took to get to a diagnosis so that I could at least try to help others get properly diagnosed more quickly and raise a bigger issue that warrants discussion which is: “Why is no one listening?”. Doctors need to listen to their patients more and give them credit for knowing their bodies. I connected the dots of my cancer likelihood by researching every side effect and lab test result. None of the doctors I saw (more than fifty) bothered to look up anything.

 Doctors need to spend more than ten minutes with a patient to better diagnose them. I hear this from patients and doctors alike. Marilyn called me at 10 pm on Saturday of Memorial Weekend after seeing my contact info on the blog section of Nutmeg Aspirin. I then had to figure out how to tell a mother over the phone whom I had just met that based on her daughters symptoms there was a 90 percent or better chance her daughter had Hodgkins Lymphoma and how to get her to the right hospital and testing facilities quickly for a biopsy and cat scan. I was once again horrified by the complete failure of her doctors to understand signs of cancer and signs of Lymphoma. There is a real problem with the division between Oncology and non oncology medical worlds. My experience has shown me that the non oncology trained community of physicians are not qualified to recognize and diagnose cancer, often failing to see early or even late warning signs and failing to understand the testing process to rule out specific cancers. However, without a cancer diagnosis you can not get an apt with an oncologist for a consult to confirm you do or do not have cancer. A Catch 22 of the worst kind. DFCI refused to make an apt for me with an oncologist when I called.

Had I gone to see a hematology oncologist when I had tried to ( almost a year prior to my actual diagnosis) I would have also benefited from “drive through Chemo” as they call it. Avoiding all the toxicities of the full 12 rounds of chemo and then the required radiation that was proposed since it had spread to my sternum bone by then. By round 8 I was begging for mercy and attempting to negotiate a reduction in the chemo agents with my doctor at every remaining infusion visit. 

For those unfamiliar with radiation toxicities and Hodgkins Lymphoma: According to research papers published "You are more likely to die from a secondary cancer recurrence caused by the radiation than you are likely to die of a Hodgkins Lymphoma recurrence”. Indeed a horrifying reality I live with daily. 

Anna was lucky. She has escaped the need for a full 12 infusions like I had to endure given that it was caught earlier than mine. And thus escaped more long term toxic impact to her body also known as “late effects” from chemotherapy. To read her mother’s story click on the link below. 

https://nutmegaspirin.com/perspectives/show/Diagnosing-Hodgkins-lymphoma