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The Newly Diagnosed

Public Group active 5 years, 6 months ago ago

We are the newly diagnosed. We don’t know how we got here. We don’t know why we got here. We really don’t know anything. We just know we’re here.

We have so much fear, anxiety, concerns and questions. Please help us begin the journey. We appreciate any advice you veterans can give us.

Please check out the forums section for advice given by others.

The first visit (7 posts)

  • Profile picture of rick rick said 6 years, 2 months ago:

    Get your facts first, then you can distort them as you please.
    Mark Twain

    The first office visit to an oncologist can be a very difficult one. Studies show that only about 40% of the information given at this visit is actually retained. Not surprising. The new patient is dealing with not only the stress of a new cancer diagnosis but also a crash course in the new cancer vocabulary. Is there anything that you, the wiser older generation could share with the newly diagnosed, or for that matter the oncology team itself, that may make this visit less stressful and more meaningful?

  • Profile picture of Debbie Josuweit Debbie Josuweit said 6 years, 2 months ago:

    I don’t think this is an easy question to answer. Every person is different and reactions run on emotions, you can’t possible know what your patient reaction is going to be. One thing I can say is that your practice is so loving and comforting. Keep doing what you do best by showing love, comfort and support.

  • Profile picture of ADELE FAGAN ADELE FAGAN said 6 years, 2 months ago:

    I brought my husband with me to the first visit and that helped out tremendously. I thought I was listening and absorbing the information, but I retained about 10% of what was said if it was that much. I took notes which helped as well since I referenced them after the visit. So, I would recommend bringing someone that will absorbed the information because I can guarantee that it is too much for the patient to handle since you are still in shock. Secondly, taking notes is helpful since you can reference them and then be able to formulate the questions you may have at your next visit or by calling the office. I found the office to be very helpful. Mary, Dr. Boulay’s nurse, was invaluable in answering my questions I had, as I went through my treatments.

  • Profile picture of Kayla Dolan Kayla Dolan said 6 years, 2 months ago:

    I had not one but two people with me and we still managed to not comprehend all of the information. Placing a phone call to doctor Boulay the next day really helped. Just to make sure we had the correct names and spellings.
    Also, having a medical team you’re comfortable with is so helpful. Dr Boulay explains things to me so I can understand and is so caring which I appreciate.
    Have a list of questions already written out so you won’t forget when you get there.

  • Profile picture of lisa m lisa m said 6 years, 2 months ago:

    Kayla, You are to young to have had to go to a first appt. w/ a cancer doctor. I would seriously give my right arm if it would cure you . You are in great hands w/ our doc Boulay and staff(as you probably already know). You are in my thoughts and prayers.

  • Profile picture of cara cara said 6 years, 2 months ago:

    This can feel like such a surreal situation. To help stay empowered I have the following suggestion:
    1. Bring a capable companion – someone who can take notes and be a second set of eyes and ears. This may not always be a loved one, who may also be stressed with the diagnosis.
    2. Tape record the meeting – your phone may already have this capability. Ask the Doctor first, however, it should be no problem and is standard procedure many places. This way you can over the information again at home.
    3. Bring a pre-set list of questions, adding as you go.
    4. Call ahead and make sure they have copies of all of your reports and labs that you will be discussing.
    5. Listen to your gut. Even if you instantly connect with your doctor, seek a second opinion to confirm what you are hearing. Most insurance companies want you to do this as well.
    6. Take a deep breath. You are not alone – just look at this amazing site!

  • Profile picture of rick rick said 6 years, 2 months ago:

    All great replies. I’ve also had a few responses from our twitter followers. (Who said you can’t teach an analog dog digital tricks?).

    Firstly ( I got this one 3 times), a cancer diagnosis is a terribly sad and isolating experience. It seemed as though many folks, even after years and decades of survivorship, remember only the pain of the first visit. There was no advise on how to improve that but the horror of the experience was still quite fresh. Perhaps the lesson here is that the emotional burdens for many, if not all, can make it difficult to comprehend and make the decisions necessary to move toward treatment.

    Secondly, (from a single respondent) take time to let the whole situation wash over you. Give yourself a little breathing room to allow for appropriate decision making. Although it may feel that time is of the essence, spending a few days to contemplating what is the right thing to do for you is a good thing.

    As always I appreciate the comments of the group and thank you for sharing the lessons of a very difficult time..