Thursday, June 27, 2013

The Tamoxifen Dilemma

***To avoid any alarm that might be raised by the description at the beginning of this post, I want to assure you that I am still cancer free.***

A Bit of Cancer Education:

I haven't written in much detail about my treatment. I never wanted to focus on it, nor my chances of survival. I often hear people talk about cancer in a way that indicates a lack of understanding, so I'm going to try to clear some things up in simple, laymen's language (meaning I'm not a doctor).

First of all, there are many different types of cancer and each has to be treated with a different regimen. The term "breast cancer" applies to at least ten different diseases. When someone has a breast cancer diagnosis and they find the cancer has spread to the bones or the brain, it does not mean she has "brain cancer" or "bone cancer." It means she has breast cancer that has metastisized to the brain or the bone. If they do a biopsy of the brain tumor, they will see the tumor has all of the characteristics of the primary breast cancer. The pathology is identical. Although it does happen, it is rare for a person to have two types of cancer at the same time. I often hear people say that their friend has bone cancer and liver cancer and lung cancer when what they really mean is that they have breast cancer that has spread to all those areas.

With breast cancer (and many other cancers) the primary treatment is to remove the cancer. Assuming the cancer hasn't already spread to other organs, after surgery the patient is officially cancer-free. At that point, everything else: chemotherapy, radiation, targeted therapy, and hormone therapy are all attempts to prevent a cancer recurrence. Sometimes cancer cells will travel to other parts of the body and lay dormant (unnoticeable by scans) only to make a reappearance years later, often coming back with a vengeance.

[I'll add briefly that this is one common problem with alternative treatments. They might appear to be effective at first, but when the cancer comes back, it is out-of-control and too late to treat something that could have been cured by traditional medicine. I'm not opposed to all alternative treatments, but I'm not a big believer in them for treating my type of breast cancer.]

The purpose of each type of treatment is the same: to reduce the risk of recurrence; to get the percent-chance as low as possible. Chemo attempts to kill any cancer cells that have spread to distant parts of the body. Radiation attempts to prevent a local recurrence (in case any cells were missed during surgery). Targeted therapy attacks a certain protein within the cancer cells. Hormone therapy essentially starves cancer cells.

I never wanted to know my chances, statistically speaking. Statistics are pretty meaningless to me. But to illustrate how this works, I'm going to make up some numbers:

Let's say with surgery alone I have a 65% chance of recurrence. I do chemotherapy and it lowers it to 50%. Then I endure targeted therapy and radiation and now I'm down to a 30% chance of recurrence. Hormone therapy almost cuts that in half to 17%. Those odds aren't great, but they're not terrible. But there are no guarantees. It's a gamble. (Remember these numbers are completely fictitious). Since the statistics are only averages arrived at through studies of many people, it is difficult to know if one's individual cancer is responding to the treatment.

Since I did some chemotherapy before my surgery, I was fortunate enough to see whether or not that type of treatment was effective. It was. I had an almost complete response (meaning it pretty much killed all the cancer). I'm sure this also improves my odds. But with the remaining treatment, I have no idea if it even worked.
A friend of mine received all of her chemotherapy before surgery and her tumor didn't change at all; meaning the chemotherapy was not very effective.

Now to the Point of this Post: Tamoxifen

Tamoxifen is the hormone therapy drug. 80% of breast cancers are fed by estrogen. Tamoxifen blocks the estrogen. Some say this drug is more effective than any of the other treatments (other than surgery). It cuts the risk of recurrence in half. It is a very important part of treatment. The regimen is to take a tiny pill once a day for five years. Recent studies are recommending doctors increase it to ten years.

So we have to ask: if this drug is so effective, then why do half of the women who can benefit from this drug stop taking it long before the five years are up? Are they crazy? They endured chemo, radiation, surgery, hair loss, and all the other horrible side-effects that accompany their treatment and now they wuss out on a little hormone-blocking pill? These are women who have stared death in the face, who are remarkably brave and strong, who have overcome great obstacles. Why do they quit now?

I'll tell you why: difficult side-effects and a lack of social support.

Women don't expect this drug to be unbearable. Their friends and family don't expect it to be unbearable. When breast cancer survivors start taking Tamoxifen, they think cancer is behind them. They think that it is time to move on. They expect life to return to normal. And everyone around them expects them to move on.

The prayers stop. The visits stop. The meals stop. The constant words of encouragement stop.

Everyone happily rejoices that the battle is over.

It's a huge shock when survivors find out it isn't; when their quality of life becomes so poor that they start wondering: "What was the point in surviving at all?"

We are not complainers! We are not cowards! We are not victims!
We are survivors!
But for many, Tamoxifen is a very, very difficult drug.

Getting Personal

When I first started taking Tamoxifen, it seemed easy. I didn't have many of the terrible side-effects I read about. I rejoiced! I assumed the fatigue and the memory loss were residual chemo and radiation. It takes time for your body to heal.

After trying just about everything to increase my energy levels, I finally acknowledged it was the tamoxifen. I didn't want to admit it. I wanted to believe I could fix it and that how I felt was within my control. I couldn't accept that I have five years of this.

Over the last six months, it has gotten worse. The fatigue. The memory problems. The body aches. The insomnia. The added menopause-type symptoms of unstoppable weight gain, hair-thinning, depression, mood swings and many other unmentionable side-effects. In my experience, to an outsider, these symptoms don't seem that bad. People don't understand the severity. They don't understand how it effects the common things of everyday life and how many sacrifices have to be made.

I'm frustrated. Damie is frustrated. I feel like I can't take another day of this. The battle is long and we are weary.

I ran across a website recently where women were discussing their difficulties with the drug. I just sat there and cried, realizing I'm not alone. I'm not a wimp. There are people who understand. I felt so validated!

So now we start contemplating statistics. If after all that treatment, I have a 3% chance of recurrence (it is extremely unlikely that it's that low), then it isn't worth five years of misery to improve my chance of survival by 1%. If I have a 30% chance of recurrence and the Tamoxifen could cut that in half, then it would be unwise for me to stop treatment. But then, how can I even know if the Tamoxifen is working? This could all be for nothing!

Thus, the dilemma. Quality of life versus quantity? Can I work up the courage to call my doctor and ask about my chances? I've made it clear all along that I don't want to know. I don't want that number hanging around in my mind as if it has any say in whether I live or die.

It is our nature to avoid suffering. But I've lived enough years now to realize that suffering is good. Suffering grows us in a way that a life of ease doesn't. It teaches us, disciplines us, and changes us. Often times when you are in the middle of it, it seems unbearable. But later, once you are through it, only then can you see the beauty; the remarkable beauty that couldn't have developed any other way. I'm thankful for the suffering I've endured. I'm willing to embrace more suffering, as the Lord wills.

Please join me in praying for direction and peace. And healing in His perfect timing.


  1. Praying for you, Steph, and can't imagine the hard choice this will be. I grieve that you have to make the choice at all! And am so sorry that you don't have the same support you had at the beginning. Trials are so hard....we have cheerleaders to get us through the suddenness, but then often have to endure the longevity of suffering alone. It can be lonely. Medicines are tricky, too, because they help and hurt. Tamoxifen is a doozy, for sure. If there is anything I can do, please let me know.

    1. Thanks Jen! I know you understand more than anyone!

      I certainly didn't mean to make anyone feel guilty for not being as supportive as they were before. That info is the result of many studies I read. I felt overwhelmed by the unexpected length of support I received...and I have a hard time accepting help because I really just want to do things myself! :)
      And I know that when I need help, all I have to do is ask!
      I think I mostly want people's expectations to be realistic (thinking of future cases, like Tami). I think that would have made it a bit easier for me.

  2. Oh...and you are incredible! And I know you have changed the lives of others in this difficulty. I just don't want to end without saying that! Jesus shines through you still! I love you so much!!

  3. Thanks for filling us in. Very glad to know how things are going even if it's tough.

  4. Stephanie, I've always known you as a strong warrior inside. Since day one of us meeting each other at Kevin & Carries for our Saturday morning run. Oh how you would come in with your children and husband Damie all prepared for our run. (A bag full of extra gagets incase someone needed something) I learned so much from you, how to properly prepare yourself for your long journey ahead. How to pack more than what you need for the runs that were just shy of 10 miles. Steph, do not forget this matter what the path maybe ahead of you, always come prepared like you used to. Grab the Holly Spirit, keep your sword close by. This journey is one that others are watching and learning, every breathe you take we are watching closely...every stride you take is being duplicate by your children & love ones around you...why because you are that strong warrior that has been sent out on this journey. Know that you are loved and we are always close by. My prayers continue to be with you and your family, your dear friend Shauna Guinn

  5. love you stephanie! I wish it could be easier. I will be praying for your decisions too. What a bummer to feel like that.

  6. Oh man, Stephanie this is so rough. You are in all my thoughts and prayers and if you ever want some one-on-one girly time I am there for you!

  7. Love this post Steph. I know before you had your cancer diagnosis, I was afraid to learn about it. But I gradually did through your experience and now, I am getting an even closer education. I think when you post with the details it is very helpful and informative for people who don't realize the extent of this disease. I was just talking to a friend last week regarding this issue. I will continue to pray for you and Damie and for wisdom. Know that you are loved fellow warrior!

  8. Great, great post, Stephanie. All my love and support to you and Damie.