› Forums › General Melanoma Community › Is this normal? Seeking Opinions, please, regarding our oncologist
- This topic has 4 replies, 3 voices, and was last updated 6 years, 11 months ago by
AliCat61.
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- April 29, 2017 at 9:19 pm
My husband and I moved to Alabama Gulf Coast to be closer to family, following 6 months NED. Before the move, we were blessed with the most wonderful doctors, including our surgeon, oncologist, and dermatologist. IF complications developed, or there were any indications that anything other than cancer was causing discomfort, they scheduled an appointment with and communicated with either our primary or the specialist that they sent us to. After moving, we got referrals to doctors close to new home. We're quite happy with the new dermatologist, but we are not happy with the oncologist. He has an excellent reputation, and although he may be clinically proficient, he is nothing like our previous doctor. I will try to be factual, since this is a very subjective matter. Although my husband has a visible tumor on the right side of his jaw, and has had problems with extreme shortness of breath, and fever, this oncologist has never once touched my husband other than to shake his hand. He does not touch the tumor, nor feel his lymph nodes, nor listen to his breathing. Any complaints about fever or fatigue or achiness or shortness of breath are dismissed as "side effects" with no investigation. My husband was scheduled to be put to sleep to have a port inserted when I demanded a chest xray, and found that he had pneumonia. Port was postponed. Additional xrays taken 2 weeks later. The oncologist said xrays looked worse but that this was "common" with pneumonia. Port postponed indefinitely, but treatment # 2 (Yervoy and Opdivo) was given. Today, I took my husband to an American Family Care near us, along with copies of all medical records, etc. Bottom line, he has pneumonia, probably never got rid of it. Monday he will be referred to pulmonary doctor. Today he was given an antibiotic shot, a steroid shot, and Levaquin(oral antibiotic). If there is not significant improvement, quickly, he will probably be hospitalized until the respiratory issues are under control. He has an appointment for Infusion # 3 Monday. That may need to be postponed. I plan to speak with the oncologist (or more likely his assistant who we see more of) and ask to be transferred to the care of another doctor in the same group. I will explain why and hope that there is a more caring, concerned, and diligent physician in that group. If there is not, we will transfer to another facility altogether. I acknowledge that we were blessed beyond belief with our original doctors, and that my expectations may not be realistic. I would like to hear about your experiences and expectations so I can better assess whether I am right to be concerned about the lack of quality care from this particular oncologist. As always, thanks bunches for listening to my ranting. I try not to burden my husband with it and focus on being positive and uplifting around him, so the chance to vent is truly appreciated and probably vital to my own mental health. So what do y'all think? Is this normal for an oncologist?
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- April 29, 2017 at 9:29 pm
Your concerns are valid and in my experience that is not normal. I see my onc every other week, she ALWAYS listens to my lungs and heart, checks lymph nodes, and checks my abdomen for any pains. When I had a lingering cough she ordered a chest CT to check for pneumonitis since that's a side effect of treatment. The whole reason I see my onc before every infusion is so she can evaluate me physically, go over my blood labs, and listen to any concerns I may have regarding any side effects that pop up between infusions, and she has to make the call whether I am good to go for the infusion that day. This is what a normal onc should be doing, and I think you are right in getting your husband to a different oncologist.
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- April 29, 2017 at 11:21 pm
Hi, Allison. I'm so sorry you and your husband are having to deal with a distant and disinterested oncologist. I have had the opposite experience; I went through my initial surgeries with the surgeon my dermatologist referred me to and he was amazing. However, when they shifted me over to the oncologist, I found him, well, distant and disinterested. In fact, when my mouth and throat were covered in sores, it took 4 phone calls to get a response and when he did he prescribed anti-anxiety medicine only because I was "clearly upset." He never did anything about the mouth sores.
Aside from the fact that too many male doctors treat women this way, this was just not an acceptable level of interest in my care an well-being. I immediately found a new oncologist at a neighboring hospital and I love everyone involved in my care there. Every single person – from the receptionist who checks me in to my nurse practitioner and chemo nurses to my own doctor – genuinely cares about me and listens to me.
The point of my long story is this: Do not wait to find a better, more interested and caring oncologist. Your husband deserves to have a doctor who will devote time, care, and energy into not just treating the cancer, but treating him like he matters. Those doctors are out there and you are entitled to a much higher level of care.
I hope you find the perfect oncologist for you and your husband soon. My thoughts are with you.
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- April 30, 2017 at 2:58 pm
Thanks so much Christine. I was ready to find a new oncologist after our first visit, but my husband was reluctant to switch and I try very hard to remember that he is the patient, not me, and that his wishes take priority. However, after hearing encouragement from both you and Jenn, he is ready to try a new oncologist.
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