On Beyond Cancer

My life with metastatic breast cancer

Update – July doctors visit July 28, 2012

Filed under: Uncategorized — onbeyondcancer @ 8:14 pm

I had a visit with my oncologist on Wednesday.  This month I’ve been having some mild liver pain.  Unfortunately my tumor markers have gone back up, now they are at 256.  (In December they were around 50, in early April they were 140, late April 180, May 229, June 211, now 256.)  We had already planned to do scans in early August.  If the scans show progression (more or bigger tumors), I will probably need to change to a new drug.  I’m not sure yet what it will be.  There are still several hormone drug options.  She did let me know that I would be a candidate for the recently approved combination of Afinitor and Aromasin.


Keeping track of metastatic breast cancer

Filed under: Uncategorized — onbeyondcancer @ 7:55 pm

One of my early questions was, how do we know if the treatment is working?  The answer: metastatic breast cancer is monitored by cancer symptoms, tumor markers, and scans.


Monitoring cancer symptoms is about how you feel.  Each time I go in for a checkup, I fill out a checklist of all the possible problems cancer might cause, marking whether or not I’ve had those problems since the last visit.  Then my doctor reviews the list to figure out what can be done about them and whether any additional tests are needed.


Tumor markers are blood tests that measure the cancer activity in your body.  These blood tests are not completely accurate which is why they are combined with symptom monitoring and scans.  In my case we are watching a tumor marker called CA 27.29.  My blood is drawn monthly and I usually get the results about 48 hours later.  A normal range of the CA 27.29 for a person who doesn’t have cancer is 0-35, but for a person with cancer the level could be in the thousands.  The trend is more important than the actual number itself.  So if the level is the same or lower this is considered good news.


Scans show the actual tumors in your body and can be used to confirm/disconfirm suspicious symptoms or rising tumor markers.  Since scans are annoying and expensive, they are done about every 3 months.  In my case, I get CT scans of my chest, abdomen, and pelvis and also a PET scan of my entire body.  The CT scans show tumors in the organs of the chest and abdomen including the lungs, liver, etc.  Most patients get a bone scan to assess bone mets, but my last bone scan did not show the cancer even though it was there (we saw it on the CT).  Going forward we’ll be using the PET scan to get a better look at the bones.  Both of these tests require fasting and the CT scans require you to drink a large amount of nasty stuff called barium.  They always give me pina colada flavor.  Rum would really improve the taste but unfortunately that is against the rules. 🙂

Here’s what the barium looks like. I have to drink two full bottles. Yuck!


The worst part of the scans is waiting afterward for the results.  Some cancer patients called this scanxiety.


What is metastatic breast cancer?

Filed under: Uncategorized — onbeyondcancer @ 3:55 pm

Metastatic breast cancer, also called stage IV breast cancer or advanced breast cancer, is breast cancer that has spread to parts of the body other than the breast and underarm area.  The spread of cancer is also called metastasis or mets for short.  The most common areas that breast cancer spreads to are the bones, liver, lungs, and brain.  When breast cancer spreads to an area, it is still breast cancer, not bone cancer, liver cancer, etc.  This is important because the cancer responds to treatments designed for breast cancer, not for bone or liver cancer.


The goals for treating metastatic breast cancer are to stop/slow the growth of the cancer and reduce/eliminate symptoms.  Metastatic breast cancer is not curable and treatment is continuous, sometimes with short breaks.  Because patients receive continuous treatment, quality of life is an important part of treatment decisions (i.e. your treatment should not make you sicker than your disease).  Most patients receive hormone therapy as a first option, then chemo using one chemo drug at at time when hormone therapy stops working. (Earlier stage cancer is often treated with combinations of multiple chemotherapy drugs.)  Radiation and surgery are also sometimes used.


The experience of metastatic breast cancer can vary greatly depending on what parts of the body are affected.  For example, metastatic breast cancer to the bone can cause bone pain and mobility limitations, while metastasis to the liver can cause jaundice and digestive problems.


While the prognosis for metastatic breast cancer is poor, it is very difficult for doctors to predict how long a particular patient will live with the disease.  In general, patients who have metastasis to the bones ONLY live longer than those whose cancer has spread to other locations.  Survival statistics for metastatic breast cancer are difficult to interpret and depend on many factors including other diseases the patient has, age, which sites are affected by cancer, etc.  Also my doctor tells me that the 5 year survival rate is already five years old.  In the four months since my diagnosis, two new drugs have been FDA approved to treat metastatic breast cancer.


If this post is confusing to you, leave me a comment to let me know so I can improve it.  Thanks.


The backstory

Filed under: Uncategorized — onbeyondcancer @ 1:30 pm
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Recurrence – Stage IV Diagnosis

I was diagnosed with Stage IV breast cancer in April 2012.  I had been having hip pain for a few weeks that was unrelieved by muscle relaxants and ibuprofen.  My tumor markers were elevated and subsequent CT scans and an MRI showed that the cancer had spread to my L hip.  There were also small tumors in my liver and lungs.  I was expecting to find cancer in my hip, but the liver and lung tumors were an unpleasant surprise to say the least.


After a liver biopsy to confirm the characteristics of the tumor, I began radiation to my hip and hormone treatment in May 2012.


Original Diagnosis- Stage IIIC

I was originally diagnosed with Stage IIIC breast cancer in October 2009.  Because I was pregnant at the time, we were unable to do many of the usual tests until after Ryan was born.  Ryan was born 7 weeks early.  Immediately after his birth, I also had a mastectomy and the placement of a port to make chemo easier.  Tests showed that the cancer had spread to the area under my arm, but not to any other locations in my body.  I had chemo from November to March, every six weeks.  This was a difficult time and I slept 12-15 hours most days.  In April/May 2010, I had 25 radiation sessions.  Then in October 2010, I had a 2nd mastectomy to try to reduce my risk of recurrence.

Me with Ryan in January 2010, about halfway through chemo.