What did you wish someone had told you?

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theredheadamy
theredheadamy Member Posts: 43
edited June 2014 in Triple-Negative Breast Cancer

Hi ladies,

Through all of the stuff you have gone through, what is the one thing no one told you that you wished you had known?  I think the doctors and nurses leave a lot of things out that would be nice to know....

Happy Tuesday, and I hope you all are well!

Amy 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    What a great question!

    After being given a very poor prognoses early on...The truth that they don't know what will happen to any of us until you done the treatment and done the time too see what happens.  The percentages don't mean a lot.  We are each individual's in our bodies makeup and how we will respond to treatment.

    2nd that cancer can travel in the blood not just lymph nodes.

    I so many more that I had to learn along the way that is why I make sure I share every chance I get so someone else will have to learn it the hard way.

    Flalady

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  • theredheadamy
    theredheadamy Member Posts: 43
    edited February 2009

    Thanks Flaladay---

    I know you post a lot, and several have been helpful to me, as I'm sure they have been to others.

    I'm going to my first oncologist appointment today---any pointers?

    Thanks

    Amy 

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  • mumito
    mumito Member Posts: 4,562
    edited February 2009

    I was told that chemo would be rough and radiation a breeze.  I found that it was exactly opposite. Went through chemo with only a few SF,s but found rads more stressful and still feel like crap a week after treatment.If I had known this I would of opted out of rads since my chemo worked so well.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    I'm with you mumayn on the rads thing.

    I copied this from our buddy ibcspouse post and edited some.

    1.  Before I begin treatment, will staging test include, PET/CT, MUGA, Breast MRI, Brain MRI, Bone Scan, FNA of nodes, Chest x-rays, and CT's.  Will it include a complete baseline blood work up including CA 27.29 and CTC's

    2.  Will you (the ONC) be willing to consult with triple negative research teams from around the country. 

    3.  Will you be comfortable with me bringing in research and the experience of other people that have Triple Neg to discuss options with them.

    4.  How ofter will you do Scans (PET/CT) during treatment.

    5.  Will you be willing to switch treatment before going to surgery if scans are not what you hoped for.

    6.  Is newer treatments such as Avastin something you would look at.

    7.  Will you give me your personal E-mail address or pager number so if something happens after hours, I can get in touch with you.

    8.  Will you be willing to listen to me and address my concerns on such things as pain management and other SE issues. 

    Go online and research your doctor.  I like knowing something about them. Of course what will be your treatment and in what order. Why did they chose this option? This first meeting will be difficult but go into it with a positive attitude and your doctor will pick up on it and will address you in the same manner hopefully.  Also let him know that you want copies of all test and blood work with each appt. Start a binder. Also explain that you want to be kept update with any changes in your condition. Get a copy of you pathology report if you don't have one. Again you may not get this all cover in one visit but this will let your doctor know you are going to be activity in your treatment.  I just pray that you click with your doctor...It makes it so much easier if you do.

    I sure other's will belong with more info.

    Flalady

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  • 2Hands4me
    2Hands4me Member Posts: 484
    edited April 2009

    A great question, and one I was considering starting!

    I feel my surgeon should have told me that breast tissue continues up to the collar bone and over to the underarm.  When I questioned the soreness so far from the incision on my first post-op visit, he blamed the drain and the SNB! Now, 12 days from surgery, I'm still very sore to touch but not much "pain" otherwise.

    • I feel he should have told me that I may be extremely tired for 1 - ? weeks after surgery.

    I feel he should have provided a referral to Reach for Recovery and the American Cancer Society as soon as we had a decision about a mastectomy.

    I feel he should have told me about possible complications after surgery.

    I feel he should have told me that I may not be able to lie down in bed for a few nights. 

    I feel he should have questioned, in a sincere, compassionate way,  my emotional respnse to this diagnosis.

    He should not have told me that a Mastectomy is a very simple procedure - meaning for HIM and the surgery crew.

    He should not have told me that the SNB is an injection in the "nipple"!!!! (I'm glad I checked with the person doing the injection before I started to panic).

    He should not have told me that a seroma is easily drained with a needle without more of an explanation!

    He did tell me that I may have a fat area of extra skin under my arm that is not breast tissue but it is not noticed until after the breast is removed. 

    Anyone add to the list? Maybe we should all mail copies of the list to our surgeons!

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