Hear My Voice: From Doctor to Patient, a Journey into Mets World

kelly headshot fall 2014Our December Hear My Voice blogger is Kelly Shanahan, MD, who writes about her shift from being a healthcare provider to being the person receiving health care for bone metastasis.  

I used to think the hardest thing I’d ever done was survive medical school and a 4-year ob-gyn residency at Temple University Hospital when the program was in chaos and we were short five (out of 20) residents. Then I was diagnosed with stage IIB breast cancer in 2008. Then the hardest thing I’d ever done was telling my not quite nine-year-old daughter I had cancer. “Mommy, are you going to die?” was her first question and my answer was “Yes, I’m going to die someday, and so is the cat and so is the dog, but I’m NOT going to die from breast cancer – I’m going to kick cancer’s ass!” Following treatment, I thought, in my arrogant doctor mode, that I was done. I beat the disease, I was a survivor! HA!

While walking upstairs one day in July 2013, I sneezed and immediately developed searing back pain. I ignored the pain, and when it didn’t improve, sought help from a massage therapist and my chiropractor. It didn’t get better and I figured I must have herniated a disc. I’d get an MRI eventually, and maybe one of those inversion tables would fix it. I was a busy gynecologist and I didn’t have time for any herniated disc or chronic back pain.

In a supreme twist of irony, I began subleasing my office to an oncologist one day a week. While dropping off supplies on the day he was there, he noticed me limping. “What’s wrong”, he asked. ”Oh, I think I herniated a disc”, I answered. He looked at me, and said, “You’ve had breast cancer. You need an MRI and a PET scan.” Yeah, yeah, I thought, I’ll get around to it when I have time.

I finally scheduled the MRI and PET for November 14, 2013. Not done with irony, this is my birthday. I figured after the PET scan, I’d go home and go out for a nice dinner with my husband and our daughter, 2 weeks shy of her own 15th birthday.

I had turned my phone off for the tests. First was the MRI, then the PET. Being a doctor who sends lots of patients to the imaging facility where I had the tests done, I knew I could review the results with the radiologist, confirm the herniated disc I just knew I had, stop at Costco on the way home and buy an inversion table and I’d be good as new in no time. HA again. When I went to my car after the PET, there was a message from the oncologist I sublease my office to; I had listed him as my doctor. “Kelly, call me, here’s my cell number” was the message. In that instant I knew I had metastatic disease. I went back into the imaging facility and went to see how bad it was: it was in every bone in my body. Glancing at my scans, my skeleton looked like Swiss cheese.

Two hours later I was in the oncologist’s main office, with my husband, who immediately drove down from our home in Lake Tahoe. Dr. Jorge Perez walked into the room, sat down and looked me straight in the eyes. His first words were “I know you know the statistics. You are not a statistic. We can fight this.” He talked about treatment options, letting me know that most oncologists would recommend an aromatase inhibitor, as my initial diagnosis was ER/PR-positive and HER2-negative, with the goal of slowing progression. Or, we could do aggressive IV chemo, with the hope of getting me into a stage of no evidence of disease, or “NED”. Dr. Perez said, “together we can fight this, and I am confident we can allow you to live with this cancer for many years.”

One of the metastases was within a hair’s breadth of eroding through my femur, so I called an orthopedic surgeon colleague. He was able to look at the images and scheduled me for surgery to place a titanium rod in my femur the following week. I called the general surgeon and arranged for him to place a port. I was in doctor mode, taking charge and getting things done.

Two days later I did two more of hardest things I’d ever done: telling my 87-year-old mother (who had already lost one child to a genetic disease when he was 3) and my daughter that my cancer was back, that it had spread to my bones and that it was incurable. My daughter told me she already knew, and had known since I’d come home on my birthday. You can’t keep anything from kids: they are perceptive and wise beyond their years.

Six days after my diagnosis of metastatic breast cancer, I had the femoral rodding and port placement. Ten days after that I started chemo. At present, I am able to work a few hours a day a couple of days a week, between chemo and acupuncture and yoga and being the passenger while my daughter with her learner’s permit drives to school and back, just enjoying every moment of life.

Being a doctor means I know more right off the bat than the average patient, a double-edged sword. One the one hand, it’s easy for me to understand all the jargon, and the stats, and the studies. On the other hand, I know the stats, and the side effects, and the complications.

But, being a doctor also means everyone else expects me to be strong every minute of every day. They expect me to beat the odds, because, heck, I’m the doctor. But I am a human, I have insecurities and fears, just like you. My training as a doctor may make me better at hiding my fears, but they are there. And those nasty cancer cells lurking in my body could care less that I’m a board certified ob-gyn with years of training and experience; they just want to divide and spread.

I used to think that being a doctor was who I was. It was integral to my sense of self and self worth. Now, I can no longer do surgery, and I likely never will return to the OR, and that’s ok. My cancer is not who I am either. I am a wife, a mother, a daughter, a doctor, a friend, an advocate, a woman LIVING with metastatic breast cancer.
Dr. Kelly Shanahan is a board certified gynecologist practicing in South Lake Tahoe, CA. She is also a wife, a daughter (of a mom who is dealing with breast cancer for the 3rd time), a mom of a 16 year old daughter, an advocate for breast cancer research and prevention, a writer and a woman living life to the fullest with metastatic breast cancer.

Want to read more Hear My Voice blog posts? Visit lbbc.org/hearmyvoice to read more posts from people living with metastatic breast cancer.

5 thoughts on “Hear My Voice: From Doctor to Patient, a Journey into Mets World

  1. You are a strong, beautiful inspiration – thank you for sharing your story! There is ALWAYS hope, as long as there’s breath in your body! I am a survivor of Stage IIIC breast cancer – I am a nurse, and I also know the statistics; on Saturday, it will be 10 years since my surgery! I know I am always at high risk for recurrence, but that doesn’t keep me from living my life, enjoying it, and being a voice & an advocate! I know that what is being done today in the field of research will impact future generations, and I am proud to be a part of that. God bless you! Thank you again for sharing your story!

  2. I have thoroughly enjoyed your story…but I find it confusing. In the early years after my diagnosis of inflammatory breast cancer, I was adamant with my doctors that if the beast ever came back, we’d fight it tooth and nail to get me to NED again.

    My doctors and most of the IBC and BC advocates on my breast cancer support group lists were adamant that this was not possible. That Stage IV disease is incurable and we *never* shoot for NED, as it is not meaningful at that stage. That we would use less toxic approaches, like changing my aromatase inhibitor, first, not something toxic like chemo. The only exception was if the mets appeared in places that made them immediately life-threatening. Then and only then would we do chemo first. But, again, NOT with a view toward achieving NED. And bone, I was told, is not considered immediately life-threatening.

    Now, you may think that perhaps this approach was being promoted by a bunch of podunk oncologists not up on the latest…but that is not true. My oncologists are part of a comprehensive cancer center.

    Eventually, “they” beat it out of me. I gave up the hope that even if I had a recurrence, I might be one of the lucky 2% who became NED again. As I have said before, they (or I, under their immovable stance) killed “the 2% hope.”

    Yet here your doctor is, telling you that you could take the milder treatment — an aromatase inhibitor. Or you could take chemo and shoot for NED, which is the exact opposite of what my doctors told me is done for Stage IV disease that is in the bone only and thus not immediately life-threatening.

    And you are not the only one. Yours is not the only case, in the last couple of years since I killed the 2% hope, where a patient’s doctors took an immediately aggressive, chemo-oriented stance toward a recurrence, even in the absence of mets that were immediately life-threatening.

    I just don’t know what to believe, any more. I find your story very encouraging and positive, but very confusing because it contradicts what “the authorities” in my life have beat into me for the last 5 years.

    • bigscarybloggera,

      As a physician I am ashamed for my profession that your doctors “beat” hope out of you. As a patient and an advocate I am furious: doctors should be realistic, and give you all the available info, but should never ever take away hope. Hope is what gets us up in the morning, cancer or not. Hope is why we have children, that they will have a better world and a better life than us. Hope should be nourished, not crushed.

      The oncologists I saw the first time I had cancer, in 2008, would have never advocated aggressive IV chemo with stage IV bone mets because they were all about the studies and the statistics. My current oncologist is all about the individual. He gave me the info and the stats and the standard of care, and then supported me in my decision to be aggressive. He recommended a low dose, frequent administration regimen that has worked unbelievably well and with minimal side effects — yeah I lost my hair and fingernails and I have neuropathy that means I can’t do surgery (you do not want someone holding a scapel to have numb fingers!) but big deal; I can go to the mall with my teenage daughter, and to San Francisco with my husband, and I can grocery shop and cook dinner and see a few patients in my office every week. I can plan a trip to Europe to create wonderful memories with my family because I have hope.

      As a physician, I support second opinions. Even when I recommend something to a patient I encourge her to seek another opinion, to gather as much information as possible to make the decision that is best for her. I also am a big believer in integrative care, combining the best of our Western medical approach with the best of other healing traditions like acupuncture, yoga, and meditation. I myself sought a second opinion from an integrative oncologist in Chicago. I do chemo and supplements, see my oncologist and an acupuncturist. I follow science — and my gut.

      Bigscarybolggera, I hope you find hope again, and I hope you never ever have to be faced with what to do with a stage IV diagnosis.

      • Thanks, Kelly. I know about Keith Block, and since my diagnosis I have followed his dietary plan and a supplement regimen (in consultation with a nutritionist who works with Block from time to time). It is part of the reason, I believe, that I have the blessing of being NED right now. I have a Stage IV friend whose liver mets are turning around for the first time in four years, now that she has begun care under Keith Block.

        And thanks for the apology. I hope that if I should ever need another oncologist, I can find someone like your doctor, who focuses on the individual and not first and foremost on the studies and the statistics.

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