Physicians can affect both great benefit, and when they blatantly ignore their patients’ descriptions of symptoms, great harm. This morning, after months of complaining to my oncologist that my right shoulder has been in constant pain since my modified radical bilateral mastectomy with removal of 20 lymph nodes in February, yesterday’s MRI report reveals that I have a partially torn rotator cuff. I actually had to go to a brand-new oncologist in another hospital to get the referral for this particular MRI because my own oncologist could not be persuaded that my shoulder pain is related to anything other than the Letrozole I take to keep breast cancer tumors from coming back.

I know this pain is different. I know exactly when it started, how it got worse instead of better during physical therapy and even worse since I stopped physical therapy. I know my body, but he thought he knew it better. It is not the first time I have listened to my body instead of my physician and I feel very frustrated this morning that I have been ignored, once again. I was not only dismissed when I complained of inflammation and chronic pain at my last appointment, but fat-shamed for several minutes, as well. He actually told me to “walk, eat a carrot and drink some water.” It was bitter-sweet to read my labs after that appointment showing an elevated erythrocyte sedimentation rate and BUN, and low lymphocytes, all which are secondary to, HELLO! significant inflammation caused by… well we don’t know yet.

My oncologist is disdainful anytime I disagree with his conclusions. His medical solutions are always “walk more, lose weight,” and he already has his mind made up about the cause for basically any symptom I am suffering with – yes, I sometimes really do suffer. In December, when I thought I was literally dying during the end of chemotherapy and couldn’t even walk  just across the room to the bathroom without having to sit down between the short distance from the bed to the toilet, and when I tried to breathe, even deeply, I  was feeling like I couldn’t get enough oxygen, he told me that these types of side effects are very rare during chemotherapy, and basically insinuated that since they are so rare I shouldn’t be exhibiting them. My malaise was justified during the follow up medical testing, all which showed acute drug-induced interstitial lung disorders and DOE (dyspnea on exertion) and sinus tachycardia. Side effects of the chemotherapy. He argued with my friend when she begged him to test my vitamin D levels. My subsequent labs showed severe vitamin D depletion. And now I am still dealing with this torn rotator cuff today, when my surgery was nearly 5 months ago…

This doctor, to whom I probably owe my life, has ignored me every single time, instead choosing to see a hysterical woman who has simply gained weight. Never mind that everything I am going through, everything I have gone through since a de novo diagnoses of stage 4 breast cancer in August 2018 ALL CAUSE WEIGHT GAIN, and my symptom complaints have revealed a real medical problem EVERY SINGLE TIME. It’s a very complicated relationship I have with this man; I am simultaneously grateful to him and seriously angry with him. And I am scared to leave him.

Doctors should be trained that bedside manner is an important component of healthcare, and makes all the difference in patient experiences, especially when you have a terminal illness. Having compassion while actually listening to your patients is the only way to build trust. When a patient tells you that her breast symmetry is very important to her, you don’t tell abruptly her that you have decided that she only needs to have a single radical mastectomy on the cancer side and that she can keep her other DD breast. I cried bitterly, all alone in my room that day in that oncology department. Who the hell does this man think he is, deciding that it is perfectly fine for me to go through life with one huge uni-boob? When my surgeon walked in, I bravely told that surgeon that I was making this decision for myself. Because – my breasts, my body, my decision.

It’s been 8 days since I stopped taking Letrozole. According to my oncologist, all the pain in my joints and bones should have disappeared by now. But the chronic pain is the same as it was on the day I was last in his office, and new chronic pain and inflammation have developed in my wrists. I have also developed a trigger thumb, which on some days must be physically manipulated. My knees hurt every time I crab walk up and down my three-story townhouse stairs and this right shoulder is excruciating with any movement – not to mention the lymphedema and limited range of motion because there are 20 lymph nodes missing. Yet I refuse to go on disability because I love my job and I started back this week. So, here’s my dilemma – do I change oncologists and go to the new, younger female oncologist who actually listens to me, but who is in a hospital that is not an actual national cancer institute, nor even a breast cancer center, or do I stay with the man who probably (hopefully, please God) significantly extended my life? It’s only my life that may depend on this decision.