• Confused

    Asked by Wolfe170 on Saturday, April 27, 2019

    Confused

    Left the Doctors office more confused than before I got there, the Doctor would say one thing then say something else. I also have driverticulitis in which I had 3 bouts in a month and a half.he wants to get that cleared first when my other doctors wants the lymphoma taken care of first. And when he did the exam he barely touched me.

    3 Answers from the Community

    • GregP_WN's Avatar
      GregP_WN

      Over the years I've had some doctors that acted like they were on their first day, then on the other hand I've had some that were confident, take charge, let's get this done, type of people. The first type you have to take charge of and ask questions, keep asking until you have answers you want.

      7 months ago
    • po18guy's Avatar
      po18guy

      This is your opportunity to learn about follicular lymphoma, so that informed decisions may be made. Follicular is a slow-growing, chronic disease. Many people go for years just watching it - so slow growing can it be. However, there is a risk of follicular transforming into the aggressive Diffuse Large B-Cell Lymphoma (DLBCL), which greatly complicates matters.

      Treatment philosophies differ in the medical community regarding the treatment of follicular lymphoma. There is evidence that treating it too early may make it more difficult to deal with in the future. That must be balanced against the risk of transformation. It may be placed in remission, but it is quite common for it to return. The good news is that it seems to keep responding to the same drugs upon relapse.

      Doctor may not be communicating well, but I believe that the thinking is correct. You have an infection - one that can progress much more rapidly than any cancer. In nearly all cases, treatment suppresses the immune system - thus its ability to fight infection is limited. The risk is that massive infection (sepsis) might occur, and that takes many lives (i.e. Paul Allen), and takes them much faster than any cancer is able to. If you go into treatment while carrying an infection, the risk of sepsis is greatly increased. All the while you are fighting a cancer that you may have to live with for the rest of your life as a chronic illness. A poor choice.

      Thus, it is very fitting to deal with your infection first. Lymphoma is very rarely an emergency. In fact, depending on the stage (spread) and grade (growth rate) of the lymphoma, the strategy of choice may be "watch and wait." This seems to make no sense until you understand that it is a slow growing disease, but can change its habits - either on its own, or in response to treatment.

      As to lymphoma staging, do not stress over that. It is staged completely differently from all other cancers. Iy flows int he lymphatic system and bloodstream, so it is very common to find it at stage III or IV. No matter the stage, it remains just as treatable. I have been stage IV at least twice, and in 2015, I had two lymphomas simultaneously at stage IV, plus a bone marrow cancer (MDS) thrown in for good measure.

      I advise you to read up and become informed. The Lymphoma Research Foundation is an excellent resource - their website has educational pages.
      https://www.lymphoma.org/

      7 months ago
    • andreacha's Avatar
      andreacha

      I, personally, would find another Oncologist. You should feel safe with your doctor and understand what he is saying. If he keeps changing what he is saying, he would actually scare me. You need someone with more compassion for your feelings. I wish you well.

      7 months ago

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