My mom has had a rash the last couple months that she has been unable to get rid of. The doctors treated her with topical steroids and oral steroids. Neither worked. They referred her to another doctor who in turn performed a biopsy on her. They called her back today and told her that she has a rare skin cancer: mycosis fungoides. I've googled it and read all there is to read about it. The thing that irritates me is that they chose to tell her this over the phone. They never referred to it as a type of cancer. When I got home from work, my mom asked me to look it up and I had a real hard time telling her that it was a form of lymphoma (cancer). I am sad about the whole thing, but I just can't stop being angry that the doctor (or one of her nurses) could so nonchalantly give news like this over the phone. Am I overreacting? Is this normal?
Wow! Sorry about your experience, but didn't your mom have a schedule appt. with her doctor for her results and consultation the next day?
No, she had an appointment set for next Tuesday. When they called today they told her that they needed her to come in tomorrow. They should have just left it at that. They should not have released the results over the phone IMO.
As with any cancer, it depends at what stage it's at. It's rarely fatal, but it can be if it's in one of the advanced stages.
I don't blame you for being upset. In my opinion, there's no excuse for not explaining it to her in person during an office visit. It seems callous to me. Yet another symptom of our broken medical care, where too often financial considerations and insurance companies govern medical care. It's cheaper to tell her something over the phone and have her, and loved ones, worry about just what this is, how serious it is, and what the course of treatment might be. I'll add, however, that this could simply be an ass in the doctor's office who should be looking for another job. The doc might not even know what happened. Of course, he/she should. In my opinion, of course. I wish your mom all the best.
is the doctor not the only who can disclose that information? if it's not the doctor who told her, they should be fired. wish you and your family the best, countingcrow.
Possibly a HIPPA violation, most likely a medical asst. reading the chart to her without thinking twice about it.
Sounds like they caught in the early stages. Bedside manner might be poor, but at least they didn't drop the ball on the diagnosis.
I come from a family of doctor's and I can tell you most of the doctor's I personally know (family and other doctor friends) are pretty cold and emotionally distant people. Maybe because they see sick and dying people everyday, stuff like this doesn't affect them. Its just another day of work. On top of that many of the doctor's I know are somewhat socially awkward. Usually brilliance in academics and sociability don't go hand in hand. This is just my experience after having dealt with literally a hundred or more doctors over the years. I bet there are countless great doctors, I just don't know too many.
Well it's not a HIPAA violation, like someone suggested earlier - unless they revealed this information to someone other than your mother. HIPAA refers to unauthorized release of information mostly, in addition to other things. But the poster was clearly referring to the release of the information. If the person works in the office, an assistant, etc. then they have the clearance to view her information. Nobody has the clearance to release it to a third party unless there's a written authorization to do so. That's what HIPAA refers to. However, I bet there's a policy within the office that only certain people are allowed to speak to patients about a diagnosis. BUT - in some offices it's quite normal for the Medical Assistant, PA, or Nurse on hand to call patients with results of tests. That's not odd at all. Although considering the diagnosis, I can imagine it would seem cold, and I would think for a diagnosis like that a little more tact would be exercised. Another thing to remember - like you said, it's rare that someone dies of this form of cancer and it may be that they considered the diagnosis to actually be minor. Don't let the word "cancer" scare you. There are a million forms that range from almost harmless is caught early like this to terminal and all ranges in between. Just my two cents. Either way, some tact could've been better utilized by the office. You should just assume that what is "no big deal" to you will be taken that way by the patient, or their relatives.
I really wish I could edit.... That last sentence should've read "You SHOULDN'T just assume that what is "no big deal" to you will be taken that way by the patient, or their relatives."
Sorry to hear that about your mother. The thing is the person that called your mother was probably not your doctor and probably did not know what the diagnosis entailed. The follow up appt is where the doctor would tell her about the diagnosis.
It is a type of cutaneous T-cell lymphoma. My father had a much more virulent and rare form that was diagnosed in 1988. His particular kind was treated with a simple surgery and local radiation. He has been cancer free since then. I believe the kind your Mother has is almost still treated like a rash, despite being a cancer, and she will have an ongoing treatment plan for her entire life. The goal is to maximize periods of remission. With good Doctors and a good plan, she should be able to have a full, long lasting life. The good news is that the initial treatment of steroids was already started even when they thought it was just a rash. My advice for anyone dealing with cancer: There is almost alwasys a Doctor or group of Doctors that specialize on particular cancers. Do your research and get a referral to those Doctors. A Doctor that specializes in cutaneous T-Cell lymphomas, or has a lot of experience in them, will know the new treatments, what works out of the old ones, and how to better identify and track the disease. Your general practitioner does NOT always know who the best Doctor is for a particular disease, they simply don't have time to know everybody that specialized in everything. Star with them, but branch out using the internet and good old fashioned phone research. Perhaps the best Doctor is at MD Anderson, perhaps they are at BCM or one of the other hospitals. Good luck, and do you your research!
Agreed. Back to the OP: I don't agree with the way the news was broken to your mom and family, but you could also look at the situation this way: You now have the opportunity to do research on this and create a list of questions to discuss with the doctor when your mom goes for her visit. Best wishes for you, your mom, and your family.
For me personally, based on this comment, I would much rather have been told over the phone. As a matter of fact, once they told me I'd have to come in earlier than my scheduled appointment, I would have insisted they tell me over the phone.
The Doc was definitely not doing the job the right way. Ideally, the diagnosis result as well as suggested treatment plan should be explained face to face. You just can't throw an unusual medical term to somebody without a detailed explanation. Wish your mom the best.
I would want to know over the phone too. If they didn't tell me and just told me to come in the next day; I would be driving myself crazy thinking I was about to die the whole night before.
sorry to hear it man. hope you and she are dealing with it ok. But about the topic.. personally, I'd prefer to be told over the phone. In fact, I sign release forms at the doc's office that authorize them to release all information to me on my voicemail. Just my personality.. and I'd do a lot of research before going in to see the doc. Otherwise he'd tell me and I'd think of more questions after already seeing him. Also it kinda makes sense if, in fact, this is "treated more like a rash" despite being a type of skin cancer as someone who seemed to have some knowledge suggested earlier. If it's treated that way, then they probably handle the information dissemination in the same way.. Sorry it wasn't a positive experience for you guys though.
From my limited personal experience I would tell you to get her an appointment at MD Anderson, asap. It's a little shocking there because of all the people with cancer but the doctor's are the best, the staff exhibits a level of caring beyond what should be possible and their level of computerization makes appointments and record keeping cutting edge. I can have blood drawn at 10 and the results are on my docs computer by 11:30. Get your appointment with Dr. Madeline Duvic if poissible. She is the head of oncology and dermatology so this should be in her field. edit: I see you are in Las Vegas...well, it could still be worth a trip.
