Friday, December 12, 2014

I wear two hats: living as a breast cancer survivor and a researcher

As both a breast cancer survivor and a public health researcher, I have a two-pronged interest in new research findings pertaining to breast cancer. Wearing my public health hat, I’m interested in new findings that relate to improved (less toxic, more effective) treatments for breast cancer, and wearing my survivor/patient hat, I’m interested in seeing if my personal experiences (both good and bad) with breast cancer treatment are reflected in the research.

The San Antonio Breast Cancer Symposium (SABCS) is a huge conference held each December. It is attended by breast cancer physicians, researchers, advocates, and of course, pharmaceutical companies and other folks working and selling products in the breast cancer arena. One of the things that makes SABCS so interesting is that there are usually some important new research findings presented there. I've been following the conference via Twitter (this year #SABCS14) for the past few years, and it’s interesting to virtually “hear” what is going on at the conference through the lens of those live-Tweeting it. On the other hand, it is often extremely frustrating because much of the research is re-hashing of the same old treatments in different combinations. And there is very little focus on real prevention of breast cancer.

This year, one of the big studies that is being presented is the SOFT trial, a trial that compared a typical breast cancer treatment, Tamoxifen, with ovarian suppression plus Tamoxifen. The results of this trial show that there is not much benefit to ovarian suppression in addition to Tamoxifen, except for a small subgroup of younger women who have already had chemo (which means that their cancers were more severe). This is interesting to me because I was involved in a similar trial called the TEXT trial, and I have some personal experience with ovarian suppression.

This was my experience: when I was diagnosed with breast cancer in January of 2009, I had a 3.2 cm tumor that pathology showed was Invasive Ductal Carcinoma (IDC) and it was estrogen and progesterone receptor positive. After surgery, it was discovered that the tumor had not spread into my lymph nodes, which was very good news. At that time, a relatively new (at the time) test called Oncotype DX was available to me. That test, which is called a genomic test, compared a group of genes in my tumor with that of other women with a similar tumor. The results showed that I had a relatively low chance of recurrence, and that chemo wasn’t needed. However, because of the size of the tumor, my oncologist wanted me to consider chemotherapy anyway.

So the issue for me was: how much treatment was the right amount for me, and how much was too much?

The “standard” treatment at the time was surgery (lumpectomy), radiation, and Tamoxifen for 5 years. If needed, chemo could be added. As a person who easily becomes nauseous, I really didn’t want chemo, and I didn’t think it was needed. I went through a few difficult weeks of “discussing” this with my oncologist. I felt that she was pushing me toward chemo even though the results of the Oncotype test showed that I didn’t need it. It was very frustrating.

At that time, there were some trials going on, and as a researcher, I was interested in the trials. The one I decided to enter was called TEXT, and it involved ovarian suppression. The idea was that since my tumor was “fed” by estrogen, and that my body was still producing estrogen (as I wasn’t yet in menopause), that putting me into artificial menopause through ovarian suppression shots might add an additional protective effect.

So I gamely started the TEXT trial. I started taking Tamoxifen pills daily, and I received my first ovarian suppression shot (a rather large shot in the buttocks) in June or July 2009 from a very nice nurse named Ann. I had to return monthly to the hospital chemotherapy suite and to Ann for the shots, a very surreal experience. It took about 3 months for the ovarian suppression to take effect, and then I stopped having periods, and started having hot flashes. The kind of hot flashes that wake you up at night, first sweating and hot, and then sweating and cold. These hot flashes affecting my sleeping in a big way: I wasn't sleeping well at all. At the same time, my oncologist insisted that I get off the antidepressant I'd been on for years because of a theory (that was later disproven) that it would reduce the effectiveness of the Tamoxifen. So I was on a new antidepressant that wasn't working, I had terrible hot flashes, and I wasn't sleeping. Then my psychiatrist prescribed sleeping pills.

By Christmas break, I was a hot mess. I was sleeping a little better with the sleeping pills, but I was nauseous and losing weight. Eventually I developed heart palpitations and other uncomfortable symptoms. I didn't know if these were due to the ovarian suppression, the Tamoxifen, the new antidepressant, or the sleeping pills. It's kind of a long story, and I had many, many visits to many different doctors who couldn’t figure out how to help me, but eventually I got off everything – the ovarian suppression shots, the sleeping pills, the new antidepressant – except the Tamoxifen and my old reliable antidepressant. By the spring, I was feeling much better, but this whole experience left me feeling very angry and vulnerable.

After that, I stuck out Tamoxifen for 5 years. Having lived through that terrible 6 months of bad side effects, "just" Tamoxifen was like a dream vacation. I could live with "just" hot flashes as long as I wasn't depressed, didn't have heart palpitations and nausea, etc.

So now, with the new results of the SOFT trial, it seems that “just” Tamoxifen was just fine. The ovarian suppression wouldn’t have really made a difference for me. I’m glad that I went with my gut and got off the treatment that was ruining my quality of life.

What’s frustrating for me is the headlines coming out of SABCS about the SOFT trial. Many are touting ovarian suppression as a “promising new treatment.” Many are saying that these results are “practice-changing.” Few headlines are talking about the side effects, the impact on quality of life that goes along with ovarian suppression. I can only speak from my experience. Others may be able to deal with ovarian suppression just fine. But I found it was unacceptable. I couldn’t live with it.

Bottom line, it’s one thing for researchers to play with combinations of different medications and treatments, always trying to find the combination that shows a tiny bit more effectiveness. But real women are living with these medications and treatments, and there are real life side effects that impact us every day. This is not a joke. It’s not just research. It’s real people and real lives. And none of this research is doing anything to prevent breast cancer from occurring in the first place.

So I’ll continue to follow my Twitter feed for SABCS. And I’ll continue to look at the research from both a public health and a patient perspective. And I’ll still be waiting for the day that breast cancer diagnoses are a thing of the past, and that we can prevent breast cancer altogether.


Timothy Olsen said...

Saw you retweet re SOFT Trial/OFS side effects and read your blog entry. Suggest you inquire re P1-09-01 (Weds at SABCS): Beyond fatigue - The impact of breast cancer treatment on body composition and energy expenditure
Miller KD, Sollars JL, Althouse SK, Han LK, Ventura SJ, Sledge JS. Indiana University Melvin and Bren SImon Cancer Center, Indianapolis, IN; University of Wisconsin, Madison, WI.

Lgotlieb said...

Hello Adena, I am one of the lurkers that they were talking about last night at bcsm chat. Found you through that and am so glad. Just read your post- I was originally diagnosed in 2003. 2 invasive ductal tumors that were both less than 1cm. Had a double mastectomy and nothing else. I did the oncotype a couple years after when it became available. My score was 17. This past June wasn't feeling great, one thing led to another and here I am with mets to the bones. Now I am on tamoxifen and ovarian suppression shots. Tumor marker slowly going down, feeling good. Side effects are manageable, I know I am a different case than the soft trial but it is all very interesting to read about. Thank you. Leslie