Meet Carol . . .

November 11, 2011

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“Listen to your instincts”
(The journey of a breast cancer survivor who pursued her instincts even though several test results came back negative)

In September 2009 my best friend was diagnosed with breast cancer. Even though her breast cancer was caught early, she opted to have a double mastectomy. Her mother died of breast cancer and she didn’t want to have the fear of it returning and the surgery gave her better odds that it would stay in remission. We invited my friend to stay at our home and were her caregivers following her surgery. In accompanying her to her follow-up visits with her doctor, I came to know a wonderful surgeon. I would come to learn that her surgeon is one of the most respected and competent surgeons in the Valley.

Fast forward to July 2010, two months after turning 60. I received the shocking news that I had breast cancer. I know that everyone who hears this diagnosis is in initial shock, but I think it is even more of a shock for women like me who never had breast cancer in their family. I am the youngest of three girls and no one on either side of our family had breast cancer. My story as to how my cancer was discovered is somewhat unique and that’s why I felt compelled to write this article.

When I was thirty, I learned that I had fibrocystic disease. Both of my breasts were comprised of dense tissue. Over the years I would feel several cysts during self examinations. And over the years several doctors would aspirate the cysts. A needle would be inserted into the cyst and a large syringe would be filled with a brown fluid. The fluid would be sent to a lab for testing and it would always come back negative. I have to admit that I became rather blasé about doing self exams, because I would feel so many lumps and assumed that they would be benign cysts. Interestingly enough, though, I recall a doctor many years ago telling me that don’t think that just because I have a history of these benign cysts, that I couldn’t develop cancer. It’s kind of frightening that he was right!

My story is being told, because as I mentioned, it is very unique and I want to make sure that women don’t become blasé about this issue. In June 2009 I had my well-woman exam. My mammogram and ultrasound were scheduled for the same visit (these two procedures have been routine for me for several years). Both tests came back negative. I sensed something was wrong, however, because I was experiencing shooting pain in my right breast that would come and go. I was also experiencing a discharge from the nipple of my right breast and this was random as well. My husband and I referred to them as “mystery spots”. They were circular and brownish in color. They would appear on my side of the sheet every day, every few days or maybe a week would go by. There was no consistent pattern with them. I called my gynecologist and went to have this checked out in January 2010. The physician’s assistant squeezed my nipple and performed a test with the little bit of fluid she was able to get and came back into the exam room shortly thereafter, with the news that it wasn’t cancer. Needless to say, I was relieved, but still wondered why I was experiencing pain and the occasional discharge from my nipple. My gynecologist ordered another mammogram and ultrasound. The results of both tests came back negative. So since I had two mammograms and two ultrasounds come back negative, I decided to wait and see what the results of my next well woman exam in June of 2010 would be.

June 2010 rolled around and I discussed the same two symptoms with my gynecologist – the random pain and discharge from my nipple on my right breast. My routine mammogram and ultrasound were scheduled and just like the previous two procedures performed in June 2009 and six months later in January 2010, the results came back negative for these two tests as well. I knew it was time to look into this a little further. I decided to see a surgeon, but not just any surgeon. I went to see my friend’s surgeon.

Little did I know that when I was getting to know my friend’s surgeon the year before, that I would actually become a patient of hers. My first feelings were that of gratefulness because of the confidence that I felt with this surgeon after witnessing my friend’s experience with her.

Upon my initial visit with my surgeon, everything appeared to be normal. I shared with the doctor my concern over the random pain and nipple discharge from my breast. During my exam, she said that she didn’t think there was anything to worry about, but as a precaution she asked if it would be okay for her to aspirate a nodule that she felt in my breast. I said “of course”. After all, I had been used to being poked with needles over the years, because as I mentioned, several doctors chose to aspirate my cysts. My surgeon displays an enormous amount of compassion, and this was evident as she poked me three times before being able to aspirate a small amount of fluid. She stated that the specimen would be sent off to the lab, but was optimistic that it would most likely be benign.

The results came back while my husband and I were back in St. Louis visiting family. My surgeon, not knowing that we were on vacation, called me and shared that the tissue looked normal, but there were some atypical cells which, in her opinion, needed further evaluation. After sharing her thoughts and options with us, we agreed that she would remove the nodule upon our return to Phoenix. I have to admit, that I was not at all surprised by the results of this test. I’m not a doctor, but when I saw the tiny bit of fluid which she had aspirated during my initial visit I thought that something wasn’t right. For years I had been used to seeing the large syringes fill with a watery-like brown fluid. The fluid that my surgeon aspirated appeared thick, and not to mention it was a very minuscule amount (unlike what I was used to seeing).

My first surgery was performed on July 27, 2010. My surgeon removed the nodule in question during a rather brief, out-patient procedure. My suspicions were confirmed when my husband and I met with my surgeon to review the pathology report. The nodule proved to have cancer cells in it. To be exact, I was diagnosed with DCIS (Ductal Carcinoma in Situ). After the initial shock, I began to feel blessed because if there is such a thing as a “good” cancer, this type would be one. My surgeon explained to us that this type of cancer is non-invasive, non-aggressive and does not usually go into the lymph nodes.

After the diagnosis of DCIS, I was scheduled for a breast MRI. This procedure defines the margins of the cancer so that the surgeon knows the exact location and amount of cancer cells that needs to be removed.

My second surgery was performed on August 27, 2010. The pathology results left me feeling frustrated. The tissue my surgeon removed was negative, however, the margins were too close and she needed to go back in for a third time before the radiation could be conducted. Now, before I go any further, I have to explain why a third surgery was necessary, because a few well-meaning friends questioned the necessity of the third surgery. As we understood it, DCIS is more difficult to remove as it appears as small calcifications, as opposed to a tumor which is more readily identifiable. And another important side note to this is that my surgeon is known for breast conservation during surgery and will try to preserve the shape of the breast as much as possible while still removing the cancer.

All of this being said, my husband and I were still uneasy about my undergoing a third surgery. During our meeting with my surgeon, we weren’t convinced that I needed to undergo a third surgery and were concerned also about any possible negative effects of the radiation treatments. After all, I had basically discovered the cancer on my own. The three mammograms and ultrasounds over the past year all came back negative. Why couldn’t I just monitor my condition on my own? The tissue from the second surgery came back negative, so we were happy with that news. Why couldn’t I just have another mammogram and ultrasound in six months? My surgeon, not being comfortable with what we were thinking, suggested that we meet with an oncologist for a consultation so that we could get answers to our many questions and concerns. We agreed and the next day we met with an oncologist.

We spent two hours visiting with the oncologist. We walked away with the knowledge that our thought of personally monitoring myself in another six months was clearly not an option. The oncologist was very direct, thorough and also very compassionate. He answered all of our questions and eased our concerns. He thoroughly explained the procedure that I would undergo regarding the radiation treatments. As a cancer patient, you will hear of the importance of surrounding yourself with a great team of doctors. We have been blessed with such a team. We have a tremendous amount of confidence in my surgeon and oncologist.

My third surgery was performed on September 27, 2010. Do you see a pattern here? All three surgeries were performed on the 27th of the three consecutive months (#27 is going to heretofore be my new lucky number!).

During our visit with my surgeon to receive the results of the pathology report from my third surgery, we learned that the tissue she removed was negative, and even though one of the four margins was still close, I would be able to begin my radiation treatments – thank God, no more surgeries!

Once I had healed adequately from my third surgery, I began my radiation treatments. I received my schedule which indicated that I would be receiving a total of 35 treatments. My husband, who has always been so protective and loving, insisted on accompanying me to every treatment – Monday through Friday at 9:30 am. We both found our visits to the treatment center to be extremely inspirational. My husband, who would be waiting in the lobby, was in awe of the strength of the women he saw coming and going every morning. He would say that he could see the look of determination of every woman that entered/left the center – it was a look that said they were going to beat this disease!

I have learned so many things through my journey of becoming a cancer survivor. The saying that cancer doesn’t discriminate is very true, but the good news is that it doesn’t have to be the end of your life. It can be the beginning of many, new and exciting adventures in life. The most important message that I would like to convey is that we need to be vigilant about our bodies. When something doesn’t seem right, follow your instincts and pursue it to the nth degree. Because of my unique situation of not having my cancer show up on the three mammograms and three ultrasounds I had over the course of a year, I don’t want anyone to think that mammograms are unnecessary if they don’t always detect cancer. My case is highly unusual and early detection is still very crucial to successfully beating cancer. What I can’t stress enough is that I sensed something was wrong, due to the random pain and discharge from my nipple, so be sure to have anything out of the ordinary checked out.

I am fortunate to be married to a very optimistic individual whose glass is always half-full. He has taught me that challenges in life can be turned into wonderful and unexpected opportunities. Don’t let a diagnosis of having cancer define you as a “victim” – accept the challenge and live life to its fullest. I have always believed that “everything happens for a reason” so I choose to believe that my mission was to give hope to anyone diagnosed with cancer, that you can and you will be a survivor! Today, many more cancer patients than ever are victorious over this disease. That’s the message I wish to send and why I choose to wear my pink breast cancer awareness ribbon upside down. It forms a “V” for victory, and my prayers and hope are that all who are diagnosed with breast cancer will be “victorious” in their journey to fight this disease.
 Meet Carol . . .

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