Patient’s Uncensored. September 2017 Communicating with Your Doctor

Patient’s Uncensored. September 2017 Communicating with Your Doctor

Do you feel that your doctor did a good job communicating with you about your prognosis, treatment plan, and possible complications you may encounter during your illness?  What would be your suggestions for improvement if you could make them anonymously?

Comments contributed by Melanoma Warriors online.

9 Responses to Patient’s Uncensored. September 2017 Communicating with Your Doctor

  1. I was completely ignorant about cancer before my husband was diagnosed in 2014. I had no idea what to expect let alone what questions to ask. If I knew then what I know now, I would have gone to every appointment with him and asked tons of questions! We were never told what stage he was, what the prognosis was, or anything about what other treatments may have been available. My husband passed away in 2016. Again, knowing what I know now, I would have been more proactive and we would have sought out a second opinion. Feeling very stupid and guilty! Ask questions over and over until you get the answers you are seeking.

    • Sometimes, patients place too much trust in their health care professionals. As a patient, I find it appalling that some physicians believe that patients don’t have a right to know their own medical information. It’s the patient’s information, and only the patient can decide whether or not they want to have a discussion about their prognosis and/or medically sound alternative choices in treatment. No one has the right to decide those issues for someone else.

  2. I was diagnosed with melanoma in 1982. I thought I was cured until it came back as a tumor in my right humerus 29 years later in 2011. I had surgery and six weeks of radiation. I recovered from all of that and then had PET scans every six months and then every year. In 2015, the PET scan showed the tumor had returned. I had another surgery, and I was not satified with my local surgeon so I went down to MD Anderson in Houston, Texas for a second opinion. I had another scan and tumor was found in my lymph nodes. In April 2015, I had a shoulder replacement and 45 lymph nodes removed. Then I was on an oral chemo combo for three months. I have been cancer free for two years! I have learned to always seek out a second opinion, and ask questions until they are answered to your satisfaction. I was so scared when my cancer came back after so many years, but my oncologist in Texas was great, and I trust her. There are so many new treatments now and so much more information about melanoma. There IS hope!

    • I was like you. My original melanoma was diagnosed in 1993. I had the surgery, and I thought I was cured. Then in 2015, it came back as two large tumors in my abdomen. I thought it was a death sentence. My oncologist seemed to be on top of things though. I had lots of questions and I believe she answered them honestly. I’m NED for about 18 months now after immunotherapy treatment.

  3. We don’t talk about life expectancy. The doctor only talks about whether or not we are in “crises mode.”

  4. My father had a modular MM removed from his shoulder in 1996. After the dianosis, I asked the doctor what his prognosis might be and all he said was, “It’s very deep.” He had surgery at NYU Langone and I again asked asked his doctor about prognosis and treatment and he said he said ,”We aren’t going to talk about that right now” and that he was very pleased with the surgery and that my dad did very well. He died from metastatic melanoma in 1998. We were never told that his cancer was incurable until after his death.

  5. It’s our job to ask. That means knowing what to ask. Some people don’t want to know statistics and probabilities, but I use the information to make informed decisions with my docs. I wanted to know so I could participate in the discussion about my best options.

    • How did you know that you needed to ask in order to get this information? Did you discuss it with your doctor beforehand?