I did it – I called

bctreeWell, it took me more than 6 months to gather this courage.  I called my doctor who referred me for the mammogram 2 years ago but missed the words “incidental mass”.

I started off by explaining that I didn’t know the procedure of who gets what reports and whether or not she was even the right person to talk to, but that the radiologist and surgeon I saw at the time are no longer with those practices.  We talked for quite a long time, and without putting her on the defensive,  I explained to her what I felt happened in my case, and that my radiology report had slipped through the cracks.  At first she kept saying she had done all she could at the time and that once it was sent out on a referral basis, it was out of her hands.  I explained to her that I felt it her duty to know what was happening with her patients.  She said doctors are human.  She rhetorically asked me if she now has to look over the shoulders of the radiologists and I said, “apparently so”.

She said she reads a lot of mammogram reports and always TRIES to read at least the bottom line (final impression from radiologist), but I said obviously that’s not enough.  My report’s words were in the very first line, not the bottom line.  The bottom line was his impressions on what I was being sent there for, a look at a palpable mass…but the finding he mentions were in another location.  As it turns out, even the palpable mass was cancer! I told her that in my experience down Breast Cancer Road, I have learned something common amongst all breast cancer patients.  They are both  a.) A woman, and b.) have had some type of change on their breast tissue.  Couple this with a mammogram finding or a lump and I believe an MRI or biopsy should be ordered.  I asked of her that she begin doing the following with her patients:

“When you send a patient for a mammogram, PLEASE tell her to get her written transcribed report, and that if she reads anything concerning, to please contact you so that it can be followed up.”  I said, “please do this particularly with young women with dense breast tissue….their cancers are not always seen on mammogram or ultrasound.”  I told her if this had been done for me I may not be where I am today.  If there are layers of oversight, maybe other women won’t be victim to the mistakes that can be made by human doctors.  She thanked me and said she would begin doing this in her practice, and that I had educated her during our conversation.

So I guess I have one load off my mind, addressing a professional and calling her on what I felt was a medical “slip up”.  I know that for me it is too late, but I can only hope this might change things for her future patients.  It might, just might save another woman from letting a breast cancer go undetected, and to receive early detection. Part of fighting breast cancer is fighting for truth, for competent medical care and for change…and don’t think that YOU are immune….these things are happening everywhere all over the country…you are your own best advocate.  With no cure for breast cancer, early detection and prevention are our only ammunition.

I have met a woman recently diagnosed stage 1, who, after meeting with 3 oncologists, learned that there is a test to see if you are even a candidate for chemo therapy!  The other 2 doctors were just ready to blindly to put her through it, and never so much as mentioned such a test!  As it turns out, she paid for the test herself ($4,000), and learned that she doesn’t get much benefit from chemo and so will  not have to have it!  Insurance companies need to start providing this to patients so that their health and lives are not needlessly altered by chemo therapy’s toxic effects (which by the way costs a whole lot more than just $4,000!!) !  By the way, in my case, the test was not necessary because they already knew I had the triple positive growth gene of Her2Nu+++, and in those cases chemo is required.

Another friend who is an 18 month survivor, has recently taken a job with The American Cancer Society and is advocating for cancer patients right here in Washington D.C. where health care reform is being battled!  She is using her experience to help change the lives of others for the better and has inspired me to do the same!  Thank you, Donna!  You gave me just the push I needed to confront this issue that has haunted me since my diagnosis….(what could have been done differently.  (?) )

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3 thoughts on “I did it – I called

  1. Koryn,

    Thank you for your comment and synopsis of your call to your previous doctor. It’s obvious that patients are much forgotten about once they are “out of” the doctor’s hands.

    I lost my mother to breast cancer on March 14, 2009. Here is my story about poor medical care? My mother had always gone to the Phoenix Indian Medical Center for her health care. She had a mammogram in 2002 and there was a small spot on the mammogram that was missed by the government paid radiologist. Nothing was ever mentioned about it.

    In Nov 2004, she went in to her doctor complaining of a small lump on the side of her breast near her armpit. The doctors confirmed it was a cancer and took until May 2005 to discuss “what they needed to do.” What does that mean?? I didn’t understand. In May they scheduled to remove the breast cancer in June. The surgeon, during surgery, while removing the tumor, found only then that the cancer had passed through her rib and into her lung. They stopped there. Then ran other test advising her she had breast and lung cancer that was initiated from her breast cancer. My question was why didn’t did surgeon know where the cancer was before the surgery? The cancer eventually spread from her breast and lung to her liver, bone, and then, brain.

    The Mayo Clinic visited with her at the Indian Hospital once a month while she was receiving Chemo-no test was every suggested to see if she would benefit from the Chemo. She really didn’t have a chance and unfortunately she wasn’t equipped with the tools to fight, because she had complete trust in her doctors and oncology team, instead of questioning everything that was told to her. This is a shame. It’s a shame that she didn’t have the courage to ask more questions, to get second opinions.

    I’m glad you obtained the courage to call your doctor back to let her know how you felt and how she failed you. She can pass the buck if that’s what makes her sleep better, but ultimately she failed you. Along with this, knowing that the doctor is human and human mistakes affect us, I know that God is in control and everything happens for a reason…to make us stronger, to bring us closer to him, and sometimes, we never know why things happen the way we do-You have blessed so many people with your story, you have touched so many lives.

    Last November, I shared the Gospel with my mother who has rejected it for 17 years. She accepted Christ and I had just prayed with her minutes before she took her last breath. It was a very precious moment and God granted this to me, the only saved person (beside’s my mother) in my family, to be with her as God received her into his kingdom. It is bittersweet. Thank you for, once again, sharing your story. It helps and heals many. God bless you.

  2. Dear Koryn – Great job and I am thankful that you had the courage to make that call. A similar thing happened with my lymphoma – mostly delays, scheduling difficulties, and because my cancer was highly aggressive the delay was almost lethal. My research nurse told me that had I waited another six weeks to seek treatment (my biopsy took three weeks to schedule) my cancer may have leaped to stage IV and been present in my bone marrow, which would have required a bone marrow transplant to treat. I realize that doctors are only human, but if a patient is presenting with symptoms and like you stated there are significant “changes” noted, then someone’s attention should be drawn to this.

    Thank you for making that call.

  3. Hi Koryn,

    I have read your blog hear and there over the past several months. I just wanted to say how inspiring your writings, and your entire approach to breast cancer, are to all who are following your story. I would strongly encourage you to consider publishing them some day. As a psychologist, I know that journaling is very cathartic and, in this case, I think it could truly benefit other women with breast cancer… as well as any woman managing her own health!

    There are so many similarities between you and Crickett in terms of your spirit and attitude, that it makes me catch my breath sometimes. She is our guardian angel, and you are an angel on earth!

    Stay strong, and God bless!
    Carole

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