About me

To read about me and learn more of the full context of this website, please see the home page. To learn more about my background, read the interview I gave to No Country for Young Women.

About my cancer:

In December of 2006 I visited my Ob/Gyn for my 6 month post-partum visit after the birth of my 3rd child, Tristan. Eighteen months after a clear mammogram (done at age 36 when my mother had been diagnosed with breast cancer), my doctor did a breast check and said one side felt “different” than the other. No palpable lump, just different density. Neither of us was worried, but she got me in for the repeat mammogram and ultrasound the week before Christmas.

At that visit, I was told I had extensive DCIS (ductal carcinoma in situ) in my left breast. It was unclear if I had any invasive cancer as well; none showed up on the mammogram and ultrasound. I would need a biopsy to try to answer this question. This was not possible before Christmas. I would have to wait more than two weeks for that biopsy.

After that biopsy I was told I “only” had DCIS; no invasive cancer was present in the sample. I needed a mastectomy because the DCIS was widespread. After consulting with my surgical oncologist and reconstructive surgeon, I decided to have a bilateral mastectomy both for aesthetic and prophylactic reasons.

After my double mastectomy and sentinel node biopsy I was told that there was no cancer in my lymph nodes. However, this original pathology report was wrong (not uncommon with a micro-metastasis). Two to three weeks later I received a call that the slides were reviewed again and in fact, I did have a micro-metastasis to a lymph node. I would need chemotherapy.

A few weeks after that phone call, when I received a second opinion about chemotherapy regimens, a different set of pathologists found two small tumors of invasive ductal carcinoma in the samples taken when my left breast was removed. These tumors were not large enough to be visible on mammogram or ultrasound.

Therefore despite believing I had extensive DCIS, I actually had stage II (grade 3, the most aggressive grade) invasive ductal carcinoma that had spread to one lymph node. My decision to have a bilateral mastectomy had been a good choice for me, and saved me from needing further surgery.

At the time of the bilateral mastectomy I received tissue expanders to begin the reconstruction process. I was able to wake up to expanders filled with about half of their final volume. I finished all of my expander fills prior to chemo.

I started chemotherapy 6 weeks after my surgery on a dose-dense schedule. I received 4 rounds of Adriamycin and Cytoxan 2 weeks apart followed by 4 rounds of Taxol 2 weeks apart.

One month after finishing chemo I had surgery to swap my expanders for silicone implants. Later procedures gave me surgically constructed nipples and areola pigment.

After my menstrual period returned following chemotherapy, I began taking Zoladex injections to suppress my ovarian function (at these injections, a pellet of medication is inserted in abdominal fat that dissolves slowly over one month). With Er+, Pr+ cancer, I did not want the hormone fluctuations of menstruation.

In December of 2008 I had a salpingo-oophorectomy (removal of my Fallopian tubes and ovaries).

Unfortunately, in October of 2012 I learned my breast cancer had metastasized to my bones. I now have stage IV cancer. At the time of this writing I am developing a treatment plan to try to extend my life as long as possible. I do not know how long that will be.

The first regimen I tried was Xeloda oral chemo. I was on a one week on/one week off routine. I took 4000 mg each day of my “on” week (8 pills). I also received monthly infusions of Zometa. In January of 2013 I had to stop Zometa because of negative side effects and switched successfully to Xgeva injections which I tolerate much better.

In April of 2013 though the Xeloda did shrink my cancer (confirmed via PET scan) it stopped working. My tumor markers were slowly rising. I needed to try something else. I started a new cocktail of Aromasin and Afinitor and continued with the monthly Xgeva injections.

In September of 2013 the Aromasin/Afinitor combo again stopped working.

On October 28, 2013 I enrolled in a clinical trial of a Pi3k inhibitor plus Faslodex. The investigational drug is called GDC-0032 and is made by Genentech. I continued with monthly Xgeva injections as well.

In December, 2013 we learned that the clinical trial regimen was not working.

In January, 2014 I was hospitalized for 3 weeks and during this time I had a lung drain put in (removed after two weeks) and ten sessions of radiation to my hips and spine. I also had genomic testing which uncovered many mutations including ESR1. Of course we do not know in all of those mutations which are significant and which are just incidental findings. We now have the ability to detect mutations that far exceeds our ability to override or correct them. We don’t know exactly how the mutations interact and which ones dominate others. Breast cancer is a complicated disease. This is why we don’t have the cure we’ve been promised for decades.

I began Taxol infusions in January 2014 but in March we learned the Taxol was not working. The cancer was significantly worse.

In March, 2014 I began Carboplatin and Gemzar and immediately my tumor markers indicated this combo was working. As of July 1, 2014 I am still on this combination along with continued Xgeva injections.

 

I am thankful for the doctors and scientists who provide me with medications, personal guidance, and research to rationally fight that which ails me.

I am grateful for my loving husband Clarke, my three children (now ages 15, 12, and 8), beloved parents, friends, doctors, and my readers who have supported me and my chronicle here.

I’m glad you are joining me…

Everything is better with a friend.

 

Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.

July 1, 2014

 

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