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Breast Cancer's New Buzz Words: Chronic Disease

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My initial diagnosis of breast cancer was devastating. The memory of the phone call telling me I needed to come into see my doctor the very next day (following the 10 days of waiting for the results from a biopsy) is still embedded in my mind. It was pretty easy to figure out that the test was positive. They usually reveal to you the results via telephone if the tests are negative... right?

And so I prepared myself for what I thought was to be the fight of my life. I had two teenage daughters and a son with autism at the time. I didn't spend much time thinking of the treatment itself. I just needed to get rid of the cancer. My doctors told me that was the plan and it was treatable. Sure... I was diagnosed with Stage IIIa lobular blah, blah, blah.

I knew I would lose my hair and eventually my boobs. I remember crying not because I thought I was going to die. I just knew I was going to die. What I cried about were the thoughts of everything I was going to miss.

After all of the treatments were completed, which occurred over about a nine month period, I received news that the cancer was gone. I was cancer free.

However, the anxiety of a recurrence or metastatic breast cancer lingered. I saw it as a large black circle in the back of my head. Each time I advanced from my oncologist office with a shortened appointment date, as in going from three months to six months and then to a yearly appointment, the circle grew ever decreasingly smaller. Finally, the visual in my head shrunk to just a black dot, albeit still there. I began to breathe a little easier.

I celebrated my seventh year as a survivor this past October. I had been training for my first Disney Marathon. I've done three half marathons (all Disney) and a 26.2 was (still is) on my bucket list. As a runner, one often experiences pain of some sort, i.e. plantar fasciitis, knee pain, hips and so on. My latest pain started in July. I thought it was sciatica. The symptoms were identical according to the web sites I visited. With my health insurance deductible being $3,500.00, I chose not to seek out medical help after weeks (months) of pain. And so I iced my ass, stretched and I believed it would go away... not too bright for a cancer survivor who incidentally stopped taking Tamoxifen a year earlier per protocol.

I finally got to the point that I called my doctor who gave me a shot of Tramadol in my butt for the pain, he also thinking it may be sciatica. The pain didn't go away and so an x-ray was ordered. Now, since my initial diagnosis, I get to take several medications that increase my quality of life. However, if I don't get my labs done on time or have scans that have been ordered, my doctor will not prescribe my meds. I guess that makes him a good doctor, but it can be annoying. Just give me my drugs please! Hello, I'm a cancer survivor.

Not taking any chances regarding my meds, the x-ray was done. This time my doctor called me himself telling me my cancer had metastasized to my pelvic bone and that it wasn't my sciatica at all. What? No office visit?

My cancer is back. It has metastasized! Crap!

And so it was again time for treatment. I had a CT PET scan which showed my pelvic bone had been eaten away (enough to present a potential critical structural problem) causing me to need a walker along with a spot on my spine and a lymph node in my neck. End result, my ER positive breast cancer is now at a Stage IV.

What does that really mean? Doesn't that usually mean I'm toast? There is no cure. All of my doctors told me they now treat this as a chronic disease.

I've been reading about these new buzz words (chronic disease) a lot on Twitter and other reputable medical sites. Some people like the new term "chronic disease" and some don't.

I like "chronic disease." It's easier for me to visualize my mortality not as something that is going to come quickly but as something I can live with. That is the key word... LIVE. I'm tired of living my life with the dark circle getting smaller, now returning back to its original size. I'd like the dark circle to go away.

I've completed my radiation, I have had the surgery to remove the lymph node in my neck and I will be on meds for the rest of my life. I will need to have a shot in my arm to regrow my bones every four weeks for the next two years. My pelvic bone is healing and I can go back to the gym (slowly). I still have every intention of running my Disney Marathon. Tell me I can't. I have lived seven years since my first diagnosis. It's more than what I thought I was going to get.

I now feel myself getting stronger every day. My emotional state is also getting stronger every day because I don't see death... I hear chronic disease. There is no battle or war on cancer in my body. It's just a disease that I have. It's a disease that must be managed for as long as it can be until a cure (which I believe is nearby) can be found.

If I die from this, I will die from a disease. People get diseases all the time
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I have metastatic breast cancer. So what! I have a chronic disease.

Dr. Susan Love tweeted a great audio you should listen to if you have time.

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