Catouheart's Journey:

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Female, Age: 53, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • Catouheart
    • Experience with Invasive Lobular Ca...
    over 4 years ago
    Catouheart's Avatar

    You have cancer.

    Oh No

    Late in January, I had my routine annual mammogram. Since my mother died from metastatic breast cancer when she was 58, I was already quite familiar with the process and felt no anxiety about the test. A couple weeks later, before the letter reached my home to warn me, I was called my an automated machine from the hospital telling me I needed to speak to someone regarding scheduling a test. Scheduling a test?? I almost hung up on the machine but decided to hang on just to check. When they looked up my name, they informed me that I needed a follow-up diagnostic mammogram and ultrasound. They see something suspicious in my left breast. I was still pretty blasé about the whole thing. Everyone says so many people get false negatives - you'll be fine. The day of the ultrasound, they had me remain in my gown while all around me other women were getting dressed to leave. They brought me to a small room complete with comfortable lounge-type chairs, many boxes of tissues, and pamphlets. No exam table. No other machinery. This was not good. The radiologist came in and told me ultrasound confirmed the existence of a suspicious looking tumor and I would need to follow-up with a biopsy. A nurse came in, explained everything to me, and then "fast-tracked" me through the system. If I could have seen a surgeon that day, she would have done that but it was not possible at 5pm on a Monday. (It also happened to be the day of my 49th birthday.) Again, oh no need to worry, only 3 out of 1,000 biopsies result in the diagnosis of cancer. I had an appointment the Thursday after biopsy with the surgeon so he could give me the results but my family physician beat him to the punch. She calls me at work on Wednesday, February 27th, and comes straight out and says, "You have cancer." Y o u h a v e c a n c e r. You have cancer. Youhavecancer.

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  2. 2
    • Catouheart
    • Experience with Invasive Lobular Ca...
    over 4 years ago
    Catouheart's Avatar

    Lumpectomy (aka small surgery) vs bilateral mastectomy (aka big surgery)

    Decision Point

    When I heard the words "you have cancer" I was reasonably calm. You see, as soon as I knew I needed a biopsy I knew it would come back positive. I had already had my panic attacks. The next few weeks became a blur of activity - doctor's appointments, counselors, nurse navigators. I learned many new phrases such as invasive lobular, HER2 negative, sentinel node biopsy....just to name a few. I would read up to learn more about my cancer and possible treatments, but could only handle it in small doses. I went to a genetic counselor as I was advised to go thru the testing for the BRCA1 and BRCA2 genes since my mother had died from pre-menopausal onset of breast cancer. The test takes 2-3 weeks to run, I was told. But on the day before I was due to get the results, I received a call saying my insurance had not yet released the approval to run the test. I was looking at ANOTHER 2-3 weeks of not sleeping, not eating, crying at odd times of the day and night...how could I handle that?! At my next meeting with the resident surgeon, I questioned as to how the wait might affect the growth of the cancer. He replied, "We are medically comfortable with the time frame." No XXX - the cancer ISN"T IN YOUR BODY!!!!! I fought with my insurance company, acquired a case manager for all the headaches yet to come, and decided to process the information I did have and what decision I might ultimately arrive at. One choice was easy - if genetic testing came back positive I would have a double mastectomy to reduce what would be high chances of recurrence. After that it got more difficult. I could opt for breast-saving surgery (small surgery) after which I would receive daily radiation for 4-6 weeks. I could also go in the other direction, and proceed with the mastectomy/reconstruction (big surgery) even if tests came back negative. I spoke to the surgeon at length and asked him numerous questions. I knew which way I was leaning after that appointment but asked for a referral to a plastic surgeon so I could learn more about possible reconstruction. I thought that might make my decision for me. Met with plastic surgeon but that did nothing to settle my indecision. I stewed, I researched, I cried some more, I quizzed my fellow office-mates (all women), and still I could not come to a definite decision. Then a couple of my friends started telling me that they knew my decision was made, now I only had to realize that for myself. Ohhh?? They know something I don't? Turns out they did. Regardless of the results of the "taking-forever" genetic tests, I knew deep down that if I opted for the small surgery, and then experienced a recurrence, I would never forgive myself. If I went for the big surgery, and cancer came back, at least I would know I had done everything in my power to prevent that. Breasts are not more important than life. Not saying I'm not petrified - with surgery (big surgery) looming over my head next week - but simply stating that I hated the big surgery option a tiny bit less than I hated the small surgery choice. (PS - big surgery most likely meant avoiding radiation treatment.) I made my final decision on a Thursday evening, and the following Friday afternoon received a call from the genetic counselor that all the tests had come back negative! My decision never wavered.

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