I've spent the last few months yo-yoing between joy and despair.
Joy for the new property/home building project my family has embarked on. Joy for all of the little things in life- including my health, happiness, my family and friends, and a new work/life balance. Despair for the moments I was caught off guard by the sinking feeling that maybe "I am not okay." Despair for the feeling that the other shoe might drop- that cancer may come knocking again if I am not careful or "don't do the right things". Whatever that means?!?
And then, last week, I hit a depressive episode like one I had never experienced. I could barely convince myself to get out of bed. This was unusual and next level depression mixed with a healthy dose of unexplained anxiety. There was nothing to point to as to "why?"- no negative situational issues that I could blame these debilitating thoughts/feelings on. Then I started to contemplate just how long I had been feeling down and out. I realized I had been masking my deep depressive moods, and I had been pretending to be okay for weeks, if not months. Maybe longer!
I share this with you because you may also be a breast cancer survivor, or, less specifically, you may go through a traumatic health event in your life. You may also have suffered from depression/anxiety with an unknown cause. If there is one piece of advice I would give to someone who has just been diagnosed by a devasting illness, it is that once you take the time to grieve and accept, the next step should be to RESEARCH. Be your own advocate. Read every book and listen to every podcast or YouTube video you can stomach, while also maintaining your mental health with meditation, exercise, and community.
Although, I've been lucky enough to have wonderful doctors, oncologists, massage therapists, and an acupuncture genius by my side, so much of my treatment and wellness plan has come from my own research.
Like many breast cancer patients, I was prescribed Tamoxifen (20 mg per day) to prevent cancer recurrence after my chemo and radiation was completed. When I started Tamoxifen, over a year and a half ago, I didn't allow myself to research the drug. I was too afraid of the psychosomatic side effects that would be caused by me diving deep into all of the horrific side effects. I felt I already knew too much, and I didn't want to create further mental/emotional resistance to the medication by spending too much time focusing on the potential negative side effects.
Tamoxifen is a hormone therapy drug to treat breast cancer in women and men. It is also sometimes called endocrine therapy. It's treatment for: early breast cancer.
Last week, I knew something was off with my mental health. I started reading and researching, and I started wondering if all of the negative hype about Tamoxifen was true. I found that somewhere around 30% of women stop taking Tamoxifen because of the negative side effects. This, is in spite of the compelling research:
reduce the risk of breast cancer coming back by 40% to 50% in post-menopausal women and by 30% to 50% in pre-menopausal women
reduce the risk of a new cancer developing in the other breast by about 50%
I started researching depressive symptoms in relation to Tamoxifen use. What I found was compelling:
Recent studies suggest that we may be on the brink of a new era of more widespread use of lower-dose tamoxifen, particularly for prevention in peri and postmenopausal women. Doses of about 5 mg per day are associated with fewer side effects than reported for the standard 20 mg dose.
Before I started my Tamoxifen research, I was advised by a nurse practitioner in my oncologist's office to take a two-week break from Tamoxifen. Thankful for an opportunity to "reset" and feel better, I gladly took her advice. She suggested I continue daily with Effexor 75 mg (medication commonly prescribed for hot flashes/anxiety/depression), while also considering upping my dosage if things don't improve in two weeks. She never brought up the opportunity for a "Baby-TAM" 5 mg dose. I didn't know to ask. Over the last year and half of taking the drug, I've let my oncologist know several times that the tamoxifen side effects are a major struggle. She has never suggested another option, or the opportunity to take a break from the medication. She just encouraged me to keep taking it. On top of this, every time I visit my oncologist, the nurse hands me a document to fill out that includes a self-reported mental health scale. I've always found this exercise to be extremely futile, and superfluous, as I'm super honest/vulnerable on paper that I am NOT OK. Not once, has this silly exercise resulted in any sort of real support or follow-up from my doctor's office.
Unfortunately, the research confirmed that I am not the only woman who feels ignored when it comes to tamoxifen side effects.
In an article entitled Why So Many of Us Stop Taking Tamoxifen:
"I can relate to the comments that doctors did not take their patients’ side effects seriously. I felt that my doctors presented side effects as something you simply have to live with. However, waking up in a pool of sweat, having frequent hot flashes and not being able to concentrate at your job is not sustainable."
The bottom line: We must be our own advocates. We must do the research, because our well-meaning doctors don't have all of the answers. On top of this, I believe there is a fear of litigious action if they don't follow the "standard of care."
With all of this said, I will be meeting with my oncologist in two weeks. I'll be giving her a copy of my amateur lit review (PDF attached below), and I'll be letting her know that I'm going to start on low dose/5 mg tamoxifen per day.
Taking my power back has already helped improve my depressive/anxious symptoms.
Wishing you an opportunity to exercise your power, as well!
*Please leave a comment below if you have something to add!
I would love to know your thoughts, and I'm sure that there may be things that I have not considered or missed!
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