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Alissa’s Story (Ankylosing Spondylitis, Breast Cancer)

Blue RibbonBreast Cancer StoriesI am 35 years old, and in 2007, I was diagnosed with Ankylosing Spondylitis. I was working two jobs and was constantly on my feet. I began to have problems walking all day. I could not get my feet to move like they were supposed to. I went to my doctor, and they tested me for gout. The test came back negative, so he sent me to a rheumatologist because he said he had no idea what was wrong.

I went and saw the specialist, and they ran some test and said I had rheumatoid arthritis. I told them it had to be something more than that because the pain in my Achilles tendons was unbearable. So they ran another test, and and it came back positive for AS. She started me on Enbrel, which worked for about a year, and then I had to be switched to Humira. This is a fantastic drug and worked very well for me up until I got pregnant and had to be off all meds. In my case, I didn’t need any while I was pregnant. I had never felt better. I had zero flare ups and felt amazing!

After I had my son in 2013, I was still able to be off all meds for about 5 more months. I started getting flare ups again, so the doctor put me back on Humira, but this time sadly, it didn’t work. She had consulted with Iowa City Hospital to see which medication she should change to, and I was pretty impressed that she didn’t just keep trying different ones. Iowa City said that most likely, from having my son, my body was now rejecting Humira. So they put me on a newer drug called Cimzia along with Indomethacin. It did the trick. It took a few weeks to start working, but I was feeling better again! But little did I know I would have to stop all medicine once again.

In November of 2014, I felt a lump in my left breast. I went to my OB\GYN, and he set me up for a mammogram and ultrasound if needed. As I was getting the mammogram done, the tech (who is a great friend of mine) said he was going to do an ultrasound as well. The radiologist came in to do the ultrasound, and in a matter of one look, he said he was going to do a core biopsy. I knew right away it was cancer. With this being the Tuesday before Thanksgiving, they put a rush on the biopsy so I didn’t have to wait so long for the results. I got called to come in and talk to them the day before Thanksgiving, and sure enough, I was positive for breast cancer. All I could think of was my little boys. I have a 1-year-old boy and a 2-year-old boy, but they are what is getting me through this. I had a double mastectomy with reconstruction done on December 15 and was released from the hospital the next day. All drains were removed just a week after surgery. I’m doing well and recovering very well. I will be seeing the oncologist this upcoming Friday to see what the next step will be with my journey. I have an excellent support team with me, as my mom is a 4-year survivor and my aunt is also a 3-time breast cancer survivor and lung cancer survivor. I worry my AS is going to take a toll on me soon, but as wonderful as all my doctors are, I know they will be able to help me with everything I am going through. I will continue to fight against both these diseases!!

Alissa
Illinois
Submitted 01/08/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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6 comments

  1. Alissa is a very sweet, yet strong woman. She knows she has many people who are here to love her and support her in this fight. You go girl…kick cancer’s a**.

  2. Melissa Brandmeyer

    You go girl!! Kick all of in the butt!!! Those boy’s have a very strong mama!! 🙂 🙂

  3. Wow, I’m glad you’re doing well! I’m 17, have AS, & I’m on Humira along with some pain management drugs & arthritis medicine. The Humira helped with a bunch of stuff, but also made some worse. I’m very tired, & for a few days after my shot I just feel drained. I was wondering if you experienced this or if Enbrel or the drugs you’re currently on had any different effect?

  4. Hi Alissa,

    I am 38 and also had a bilateral mastectomy and reconstruction. Mine was done July 23, 2015. I also have AS. I have taken Enbrel for almost 8 years. I too have young kids. I have twins that are 6.
    I am 2 weeks post reconstruction. What a hurdle this is! I would love to chat with you about your reconstruction experiences. I have some questions related to recon that I am not sure if you can relate to or not. It is hard to find women with AS that have also had breast cancer and then reconstruction.

  5. Hi all! After decades of unexplained severe lower back and big joint pain (age 13-present), I was diagnosed with AS. My pain was so overwhelming that I had to retire very early (after 18yrs) from public school teaching. 6 months after I was officially retired, I was diagnosed with HER2+ Breast Cancer. Long term prednizone and up to 7 additional Rx daily did NOT give me relief and function (cognitive and physical). Enbrel, CBD and high CBD Medical Marijuana are my pain control pals. Also, I have done extensive elimination diets to discover which foods increase my pain/ decreasing my cognitive and physical functioning (the pain gets so bad that my concentration and even digestion actually suffer greatly). Auster as my diet is (and incredibly expensive!!) I am finally able to walk more than 2 miles and am finally able to jog slowly on grass. It has been incredibly challenging emotionally as a long time athlete (body building, trail running and cycling) because for about 10 years, I was unable to exercise routinely at all due to exercise induced AS flare ups. PUSH Muscle Therapy helped my body restructure its musculature/posture after 4 decades of guarded posture due to increasing pain post pubescense. I deal with much spinal pain, cervical thru lumbar (SI joints, knees ,shoulders, feet as well as apparent muscle wasting in my legs—)…my quest now is to: befriend other women that deal with AS and Breast Cancer. My decades of being a fiercely independent athlete have given way to a new me that longs to have a disease specific support group. It is socially very isolating to live with severe chronic pain, so, meeting and sharing stories and success recipes is my goal. It seems the medical community is still learning how to help AS patients, BC patients and, we are clearly experimenting (me and my new medical team -thanks to ACA (Obama Care- I qualified for Medicaide so was able to leave Kaiser Permanente- whose doctors I seemed to have maxed out their solutions- reintroduction of Enbrel post chemo was not permitted under KP)…so, the experiment goes on with my physicians, but, I yearn for a community of women that are living with AS and BC (my BC is “high recurrence risk HER2+)

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