Know Stage IV: I’m No Longer My Oncologist’s Success Story

September 18, 2017

For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV

For Know Stage IV, Janice Cowden writes about how her breast cancer experience changed from her early-stage diagnosis to her metastatic diagnosis, and how her oncologist started treating her differently.

It’s mind-boggling, confusing and frightening hearing, “you have cancer.” Suddenly, you are thrust into this panic-driven mode of action, to hopefully rid you of this horrific disease.

This was my world in 2011. Doctor appointments, treatments and surgeries suddenly consume your calendar. After opinions from several doctors, I chose my team, and a plan was put into place. At my first visit, my oncologist smiles, greets us, and delivers enthusiastic, hopeful words during our visit: “It’s stage I.” “The tumor is small.” “It hasn’t spread.” “It’s curable.” “You’re going to beat this!”

These are all “pretty words” we cling to, to give us hope that we will indeed be cured and go on to live long, normal lives. The doctor was all smiles and full of enthusiastic encouragement as my husband and I sat there scared, uncertain of what questions we should be asking, assuming that this doctor had all of the answers. He had a solid plan of attack. We were confident and hopeful. On 2/22/12 I proudly rang the infusion center bell in celebration of my last chemotherapy. Hugs, cheers and congratulations were given to the newest “survivor!”

After the first year with no recurrence, we settled into a new normal version of life. At first, the oncologist saw me every few months, doing a very thorough breast exam, head-to-toe examination and asking if I had any questions. His tone was hopeful as he answered questions, and he always ended our time together by saying, “Now, get out of here and go live your life!” He was always full of smiles, hugs, pats on the back, and a handshake for my husband! After my stage I triple-negative breast cancer, TNBC, diagnosis, I researched and read everything I could about stage I and TNBC. I didn’t reach out to support groups: I didn’t need them. I was thirsty for knowledge about this disease that I had beaten. In case it reared its ugly head again, I would be prepared. However, I never prepared myself for a stage IV diagnosis.

Fast forward 4 years and 9 months to June 2016. I was seeing my oncologist every 6 months. During his thorough exam, I mentioned that I’d had significant bone pain and fatigue since our last visit. We assumed these were side effects from a bone-strengthening drug. However, a PET/CT scan was ordered to rule out a recurrence. And then came the horrific news: “Your cancer has spread. “It’s stage IV, incurable but treatable.”

He wasn’t smiling as he delivered this news, nor was there a hopeful tone in his voice. This visit did not end with, “Now get out of here and go live your life.” Instead, he hugged me and said, “I’m so sorry.” I was devastated, but marched forward with a treatment plan that included more chemotherapy and radiation. My oncologist had a plan, but it seemed less certain. Would he follow this AC regimen with carboplatin? “Maybe.” Would I enter into a clinical trial? “We’ll see.” There seemed to be much less certainty in his delivery, as well as in his future treatment plans. Our visits now end with, “we’ll wait and see.”

My stage IV metastatic breast cancer diagnosis was delivered to me on 7/8/16. Since that day, the nature of my visits with the oncologist has changed drastically. I’m no longer given a gown and told to undress for an examination. What’s the point of doing a breast exam? The cancer decided to find a new home outside of my breast. He no longer examines me and our question-and-answer sessions are met with a look and tone of defensiveness. Since my metastatic TNBC diagnosis, I come prepared to discuss what’s next, but he is very reluctant to go there, and appears uncomfortable if I challenge his decisions. On a routine visit last April, my husband had a litany of questions for him. Although he has been a great caregiver from the beginning, my husband allowed me to do most of the question asking prior to my metastatic diagnosis. After attending an LBBC MBC conference in Philadelphia with me this past April, he has used the knowledge he acquired to ask more questions, such as what my oncologist’s subspecialty is – gastrointestinal cancer, not breast cancer; what percentage of his patients has TNBC, or metastatic TNBC – perhaps 20 percent or fewer; and how many of his patients were participating in clinical trials – zero. All of this was very concerning to us.

The reaction we received from my oncologist was very telling: He didn’t like being challenged, or losing power in our relationship. Our visits are less social since my metastatic TNBC diagnosis, more brief in nature, with minimal physical exam, and lacking in hopeful tone and body language. My oncologist knows he can’t win this battle, nor will I. I am no longer his success story. I’m a patient with a poor prognosis and no hope for a cure: no longer an “if,” but a “when.”


Learn the facts. Support the cause. Know Stage IV.

Comments

I was diagnosed Stage IV Jan 2012. We all deserve hope in the way that we are treated. I fired a doctor because she only focused on my prognosis. I am here to live, not be treated like I'm dying.

I was diagnosed with Stage 4 almost five years ago. First 4 years I did well with Femara. In February it went to hell and after a very aggressive chemo left me in a hospital bed for 6 months, I am back to recovery. I have never had a chance at remission or a cure. My oncologist continues to treat me with respect, consideration and hope. We are both aware that eventually I will most likely die from this, but at no time have I been treated the way you describe. My heart breaks for you. CHANGE DOCTORS IMMEDIATELY! I have my own Facebook version of my story. The page is called The Redhead and Mr C (A Twisted Love Affair) please feel free to join. I will keep you in prayer!

Wait a minute! Janice, yes you are a success story you are still living. You are doing what you have to do. You are out there. Walking your path requires more strength and dedication and the easy out. You are a huge success story to me and I want the best for you. Be seen, be heard, you're still with us. Big hug.

Just wait until you shift out of treatment and into a palliative stream of care. After 5 years with her oncologist, my mother was abruptly shifted and didn't even realize as she left what had been a regular appt for years, that this would be the last time she would see her oncologist. No closure. No saying goodbye to any of the staff we saw for 5 years. We had no idea the streams were completely discreet, and we had.m no preparation or understanding of what the Palliative world entailed. Worst of all, We made the mistake of confusing the professional with the personal. That was the beginning of July 2017 and she has just entered hospice. We do understand the rationale and good purpose of these aspects of cancer care. We just we knew it was coming. And I wish my mom's oncologist would come and say goodbye.

@Emily. I'm so sorry to hear that. I understand as I felt a little bit that way from caregivers at a nursing/assisted living place after my Mom died (who were pretty good during her stay there during only her last few weeks of life). I do want to say, however, that I hope you have as good an experience as we had with Hospice during her last (9!) months of life. I cannot say enough about the excellent care from the Hospice caregivers. They were wonderful. I truly hope you and your Mom find the same from Hospice. They are a Blessing and everyone should have such good care. Prayers to you and your Mom, Emily!

I was diagnosed with stage 2b breast cancer, estrogen positive in 2005. I underwent a double mastectomy and 8 full rounds of chemotherapy. I was hopeful that I has beat the disease, but in 2016, I was given the awful news-the cancer had spread to my bones. I had cancer (and lots of pain) in my spine, my pelvis, and in my hips. One hip was so badly damaged that I was taken in immediately for a total hip replacement. Things looked grim. Every single diagnostic test that I took showed the cancer progressing, and I took several. I even filled out a "Five wishes" form and met with an end of life counselor.'' I am so sorry if any of you have been given bad news about your life expectancy or your prognosis. It is so frightening I know. Horrible, and I offer nothing but my sincere and humble prayers for you. But I found that doctor's might not be the ultimate authorities on life and death. Or maybe some are better than others? Because I was only expected to live for about another year my husband gave me the ultimate gift. We packed up all of our things and headed to sunny Florida? We figured that even if I couldn't be terribly active than I could enjoy the beautiful weather for as long as I was well enough. We bought a small house in a gated community, and in February of 2018 we got the news that thought I would never hear. I was told that the XGEVA and Zelota that I was on must have beaten my cancer into total remission. The doctor couldn't believe the news that he had to give me. I recently read that the chance of complete remission in a terminal cancer patient was about 1 in 600,000. No wonder the doctor was so mystified and delighted. For several months now I have been healthy and had even become pain free. My labs have been good, and I have had no reason to doubt the good news that I am truly in complete remission. But the pain is returning and I spend a lot of time languishing in my bed. I say languishing because I saw a pain doctor who has made the pain bearable. Has my terminal breast cancer returned? I don't know, but I'm calling my oncologist in the morning. I guess the message in my story is to never, never, never give up hope and to never take progress and good health for granted. Our lives can change on a dime and all we can really do is to love each other and live the best lives that we can each and every day. I wish you the best and encourage you to contact me if you would like to. Peace be with you my cancer sisters. (I hope that you don't mind the term of endearment.) With love, Theresa Donges

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