Security Blankets…not Just for Children

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It’s not just children who may need a security blanket to make them feel safe. Many of us carry our own security blanket well into adulthood, although, hopefully, it’s an invisible one. It’s understandable. Who wouldn’t want to feel safe? Who wouldn’t want to lock the door to their house at night? It only makes sense. If you were told that you had to leave your door unlocked, would you feel stressed? Would your stress level increase the more nights you had to keep your door unlocked? You might feel like the more nights the door was unlocked, the more likely it would be that someone was going to come into your house and steal your valuables…if not worse.

This past week I was put in a similar situation. I was asked to stop taking my Tamoxifen (sort of anti-cancer medication) for one month. For me that was the same as being told to keep my door unlocked.  I felt sure that the more days I wasn’t taking my medication, the more likely it would be that my cancer would return. I was given all kinds of assurances that I would be okay, but it wasn’t their life (valuables) that could be taken away. Yes, I know, I’m so dramatic.
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Tamoxifen
I have been taking the drug, Tamoxifen, for about six years. Since my breast cancer was hormone-receptor positive (ER+/PR+) it means that if my body continues to produce large amounts of estrogen with those receptors still in place, then my cancer could easily return. On the plus side, and you have to look for it, being hormone-receptor positive means that I had additional treatment options that are not available to those patients where are hormone-receptor negative. 

Here's the graphic I created to explain how Tamoxifen works. It's from the presentation I gave at the 2017 STC Summit in Washington, D.C.

Initially I was told that I would be taking Tamoxifen for five years but more recent studies indicate that 10 years is even better.  In an effort to reach that 10 year milestone, I have learned to deal with some of the side effects of the medication.

While many women complain about hot flashes, fatigue, bone aches, and hair thinning, I have been dealing with a few of the more serious side effects. I have been seeing a gynecologist so that I can be monitored because a side effect of Tamoxifen is a thickening of the uterine lining and, in rare cases, the development of uterine cancer. I also developed a polyp, so I had day surgery to remove the polyp and remove some of the uterine lining. Since the polyp was not cancerous, I continued to take the medication. 

Blood Clots
I started to experience what I believe were blood clots. First the pain was in my calves. I went to see my doctor and had an ultrasound done. The test couldn’t find anything conclusive. No one seemed too concerned because the clot was in my leg and less likely to move to my heart or lungs. The pain then started to occur in my arms. Once again, the pain was extreme and I had trouble even lifting my arms. Once again, the pain went away after some treatments (my brother does complementary medicine), and I continued to take my medication. More recently, I’ve started to experience pain in my head. On one occasion, I even struggled to walk a straight line. I struggled with words.  Eventually, the pain went away, and I continued to take my cancer medication, but with an aspirin chaser. 

While I did not have a stroke, the possibility seemed to be getting a little more likely. This got my attention. Both my parents have clotting issues. In fact, my father had a stroke when he was one year older than I am right now. People who have had breast cancer are more prone to blood clots. The Tamoxifen on top of this is the perfect storm. 

Other Medication Options
While there are medications other than Tamoxifen available to breast cancer patients, whether or not you are in menopause determines what drugs are available to you. Taking the next type of medication (aromatase inhibitors) before I’m in menopause will actually increase my odds of getting breast cancer. 

To ensure this doesn’t happen, I have regular blood work done to determine my Follicle Stimulating Hormone (FSH) levels, which impact how the ovaries function. While my levels seem to fluctuate between 16 and 17, I need to reach 30 mIU/mL before I’m considered to be in menopause. It’s been years, but I still haven’t reached this goal. Since Tamoxifen can also cause false FSH readings my doctor has asked me to stop taking my medication for one month and then have my FSH levels checked. 

This is where the security blanket comes into play. While I was actively undergoing cancer treatments (surgery, chemo, and radiation), I felt confident my cancer was leaving my body. Once these treatments ended, I started to think about whether my cancer would return. Taking my medication helped to remove some of that fear. Now, at least for a month, my sense of security, my security blanket, was gone.
 
Now I have to trust my doctor. I have to believe that not taking my medication for a month won’t cause my cancer to return. In fact, it might ultimately give me the blood work results I need to determine if I’m actually in menopause and can safely take a different medication…one that doesn’t cause blood clots. 

Some Suggestions
This experience has taught me the following:

• You have to know when enough is enough.
• Do your research and ask questions to determine what the next step is for you.
• If you don’t feel like you are being listened to, keep asking questions and, if you don’t think your concerns are being addressed, get another medical opinion. You have to be your own advocate.
• You can never be too careful. My doctor is going to send me to a thrombosis clinic to see what can be done to reduce my risk of blood clots and potentially a stroke.
• Know your body. If something doesn’t seem right, have it checked.
• Find the balance between a healthy fear and an unhealthy one (a state of constant fear that every ache and pain can signal the return of your cancer). Sometimes an ache or a pain is just that. 

Keep in mind that sometimes, to achieve growth, you have to toss your security blanket aside, even if just for a while. I’m okay with doing things outside my comfort zone, but I think twice when it comes to life or death decisions. I have to trust my doctor and believe that everything will be okay; the risk (however slight) will be worth the gain of knowing whether or not I’m in menopause. 

For more about Tamoxifen, please go to breastcancer.org. For example, I found a list of medications that I’m not supposed to use with Tamoxifen. It’s a good that I did a little research for my article or I wouldn’t have known that I may have been doing something wrong for the last 6 years.

Cancer is such a learning experience on so many levels.