• KarenG_WN's Avatar

    What did you do when you felt like you were not getting the answers to your questions?

    Asked by KarenG_WN on Wednesday, August 10, 2011

    What did you do when you felt like you were not getting the answers to your questions?

    One of the strongest motivators in the creation of this network was around creating support for others in their quest for answers during their cancer journey. There are so many questions and even more answers, so how do you get to the right one?

    13 Answers from the Community

    13 answers
    • PhillieG's Avatar

      I was fortunate to have my brother as my "Medical Pit Bull" so to speak. He helped me get hooked up with my oncologist at Sloan Kettering but prior to that, he kept pressure on my first oncologist (who happened to be my PCP at the time) to get my post installed, and to set up chemo appointments at the first hospital I went to. After about two weeks of my brother being on his case, the doctor called me and told me to have my brother stop calling his office. I told that doctor that I wasn't in need of his services anymore. It's VERY helpful if you can have someone who is an advocate for you. When one is first diagnosed, it's very hard to deal with that and then put the stress of dealing with getting ports installed and scheduling chemo. I am very fortunate to have him as my brother. I've learned a lot from him about dealing with insurance companies and the red tape and been able to manage things myself for a while now.

      almost 10 years ago
    • karenglowacki's Avatar

      "Carolyn" (under breast cancer) posted something on her journey that directly relates to this question and I just had to copy and paste it:

      "One healthcare provider told me "I'm in charge and I know what's best for you." I disagree. I am in charge and you are here to help me get well. Needless to say, I did not go back to that doctor."

      I think the message is, if you are not getting answers to your questions - then you find a team that is willing to work with you on your terms and gets you the info you need when you need it.

      almost 10 years ago
    • Jamie's Avatar

      Getting a second opinion can be a hassle, especially if every specialist you see has to have a referral from your primary care doc. But with something as life-altering as a cancer diagnosis, anyone who isn't answering your questions, isn't taking you seriously. Look for someone else. Your medical care requires complete trust.

      almost 10 years ago
    • lovekitties' Avatar

      Knowing what is the "right answer" is the tricky part. For me I did a lot of research before I took any action. That reasearch was mostly from the web, not stats, but what the options were and what I could expect from each. Then I weighed those against my personal life situation before making a decision. My doctor felt I was being hard headed not doing exactly what he wanted, even to the point of asking my family to change my mind, but I let him know I was in charge.

      I also found folks on CSN who had already started their journey who were willing to share their experiences.

      almost 10 years ago
    • Brooklynchele's Avatar

      I did a lot of research. I interviewed the oncologists before I made a decision. I knew that the decision was an important one and wanted to be comfortable. When a doctor has not answered a question, I continue to ask until it is answered. We are not victims and should not allow ourselves to be treated as such.

      almost 10 years ago
    • Chenheart's Avatar

      I was very discouraged that my oncologist either did not tell me, or, when they were brought to his attention, dismissed my side-effect concerns as nothing. Neulasta was worse for me than the chemo; all 206 of my bones ached so badly that I needed assistance even to sit up in bed, or get out of bed in the morning!My former oncologist ( I now have a different one!) just looked at me and said, "hmmm..." and never offered any suggestions or remedies. Back in 2003 I was too intimidated to ask questions~ I honestly thought my Dr would tell me if there was something I could or should do! I am not so naive anymore and I ask and write things down and make phone calls! I have become the proverbial squeaky wheel in my own behalf!

      almost 10 years ago
    • KarenG_WN's Avatar

      Thank you to everyone for your thoughtful and insightful answers to this difficult question. I feel that this will be a question that is top of mind for many so any experiences that you share are of great value.

      almost 10 years ago
    • lynn1950's Avatar

      I was referred to a surgeon when I had a suspicious mammogram. She pooh-poohed my feeling that something was wrong and I readily believed her so treatment was delayed for a year. No one knows your body better than you do - follow your gut instincts and insist upon the care that you deserve.

      almost 10 years ago
    • NancyE's Avatar

      It is such a scary thing to go through, not knowing all the answers after hearing you have cancer. I called the 1-800-ACS-2345 number and got a packet of information and talked to a really calming person there that was so helpful with all my questions. I could always call or look at www.cancer.org and find answers too. Although when you are in it - you need those resources more for those that are supporting you. I was lucky to realize that the first oncologist just scared me and was "aiming for a cure" - then I changed doctors and found a GREAT fit. Know you can change doctors and make the best choice for you in your own cancer journey.

      over 9 years ago
    • mspinkladybug's Avatar

      This question is a double edge sword. r u not getting the answers Y OU WANT to hear??
      some people who do not want to hear what the dr says to say tend to get really upset.
      if you feel as if yoru dr is brusing you off and will not tell it like it is then it is time for a new dr BUT if ur dr is saying chemo eve tho u r stage 1 and u do not want chemo then people tend to run to a dr who is going to tell them what THEY want to hear.... I have a friend who is stage 4 now cus she did not feel as if the dr was listening to her when the issue was she was NOT listening to him...... second option is always good but do not run to a dr just to get them to say what YOU want to hear

      over 9 years ago
    • steve70x7's Avatar

      I'm going through this right now with the transplant hospital. I haven't gotten a straight answer out of them in a month. I'm looking into going to a different transplant center. What do I do? I get frustrated and angry!

      Actually my wife is the one who usually gets the answers, thank God!

      about 9 years ago
    • Effiemae's Avatar

      On my last visit to the oncologist, rather than seeing the doctor himself I was greeted by his nurse because the doctor "was busy." After answering all of her questions, I asked her if it wasn't time for another PET scan because it had been seven months since I had one, and it had been six months since they had done any blood work. She dismissed herself, and when she came back she told me that he had said "make another appointment in two months." Talk about feeling discouraged. I walked out of his office, called my primary physician, and asked him to refer me to another oncologist. Trying to get all of my medical records forwarded has been a literal nightmare, and the new oncologist won't see me until he receives them.

      We're not talking about a visit for the flu here. Cancer is a killer, and if one does not stay right on target the results can be fatal. A misdiagnosis by my opthalmologist cost me a year of very precious time, and I might not have lost my vision nor my eye if he had been competent. I am normally a very pleasant, easy going person, but I have just about come to the conclusion that to have your needs met by the medical profession, a person has to get right down nasty. Fortunately, my primary doctor is wonderful, and his office is hounding these people about three times a week. The main thing I have learned from my cancer experience is to never go with one opinion and to never have blind faith in any doctor.

      almost 9 years ago
    • Constable's Avatar

      My case may be a little different, in that I lost my first wife to ovarian cancer about 11 years before I was diagnosed. I had some idea about the questions to ask. But I was also blessed with a family practitioner that I had known since he was a resident. When we were picking an oncologist I told him to select someone he thought I'd be compatible with, that I had only 2 requirements: he had to know what he was doing, and had the ability to look me in the eye and tell me the truth. At my first visit with him he wanted to do a bone marrow biopsy. We were joking back and forth while he was doing it and got to laughing so hard we had to pause til we both could behave! When he wanted to refer me for evaluation at a cancer center I gave him the same criteria that he met. he smiled and said he had just the man! A few months ago the director of the transplant team was listed in one of the national directories as one of the outstanding cancer doctors in America. The point of this? Set you own criteria for the relationship you want to have and find a team that meets them. If they respect you, and you respect them, it will be a positive relationship. I have a young man here who is going back and forth to a cancer center halfway across the country. He is less than half my age, and is dying. I'm about to retire (again!) so I can grab my favorite blond, jump in the Miata and hit the road on a moment's notice (did that Sunday after church). I will e the lead-off speaker next week for the BMT/SCT Support Group. Create a mutually supportive relationship with you team, and you will not have a problem getting information you can rely on. Good luck, and God bless!

      over 8 years ago

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