char123's Story

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"My name is Charlotte and I live in Pennsburg, Pennsylvania. I happened to find myself diagnosed with TNBC in January 2010. I was still faithfully going to my doctor at Penn Medicine in Philadelphia since April 2001 when I was diagnosed with my first breast cancer, it was not TNBC but ER/PR+.

"I was finished with tamoxifen and Aromasin at this point. I was devastated. It was the same breast and I had had a skin-sparing mastectomy with reconstruction in 2001, and 2002.

"My doctors ran the tests twice to confirm we were dealing with TNBC. It was a small skin tag in the mastectomy scar. In the scar! How could this be? The doctor felt that the parts of my tumor that was not ER/PR+ perhaps lived there dormant for 9 years and then started to grow. I was told I should have chemo and then radiation for sure. I was told this is rare but happens. The reason it probably happened was because in 2001 the standard of care in the US did not involve radiation when you had a skin-sparing mastectomy with only 2 positive lymph nodes. So I was not offered radiation. It was common to do the radiation in Canada and they then discovered that 10% of us who did not have the rads in the US with positive lymph nodes had recurrences. So here I am one of the unlucky ones.

"Off I go to chemo, AC 4 rounds and the Taxol 4 rounds. I was very afraid and my experience went something like this:

"The first two rounds of AC were not too bad, they gave me great meds and I cannot say enough about the chemo nurses at Penn. I worked every day to try and keep my life somewhat normal. Just after my second treatment my life partner and I flew to Ft. Lauderdale as we normally would and had a nice time. It was actually funny because most of the restaurants hid me in the back, away from the customers, I had no hair, eyebrows, or eyelashes and it was obviously too hot in Lauderdale for the wigs, so I wore my hats.

"Then things started to change and one day I came home from work and all of a sudden I was cold, and felt like I had the flu, I took my temperature it was 102. I called the oncologist on call and they told me to pack a bag and go to the nearest emergency room and tell them my doctor suspects neutropenia. I did and they immediately quarantined me. I had no idea what that meant. It was later explained. I spent 3 days in the hospital and slept most of the time. It was a nice break. So off I go, now half way through the Taxol my hands get very tingly, but I manage well. I was told in the beginning of the chemo to plan to gain about 20 lbs. That was average. I was actually losing weight, I could not eat much, did not know if it was chemo or what, but I did not like food. I ended up at 118 lbs at 5'5" and I now know I looked rough, but I went to work every day. I work for a crane company servicing the Philadelphia, New Jersey, Delaware, Maryland area for 30 years and we have 150 ironworkers. I heard so very many great stories from them about, mothers, daughters, cousins, friends and their breast cancer experiences. The guys I worked with were so very, very kind to me. My tough ironworkers are actually the kindest men I know.. They all helped me through this. I get through chemo and the doctors tell me the hard part is over and I will breeze through rads. OK, I say, but that did not happen. I do not know what it was but I found that going to radiation every day was far harder on me than chemo. I never had a break, it never ended. And I was done, so done with everything. 'Make it stop.' All I kept saying was. 'Make it stop.' I truly believe I had a mental breakdown about a week before it ended. I freaked out on the doctors. It was actually the radiation nurse who realized I was traumatized and breaking down.

"...Anyway. It ended in September 2010. I was finished. I looked awful, but then my hair started to grow back, I gained some weight and I was thankful! SO very thankful to be alive and in good hands, and that I had a few good friends who helped me through, they fed me, made me laugh, let me cry, and I was also so very thankful and happy that my fiancé and life partner who made the entire experience as easy on me as he could. And for the people I work with who never stopped believing in me.

"I would tell anyone who is diagnosed with TNBC that it does not matter what type of breast cancer you have, it needs to be treated. So find the best doctors available, ask questions, phone a friend, sleep as much as you possibly can, stop trying to be so brave, laugh at yourself, and remember to live. You're here, so try to live. That's what got me through, I went on vacation, went to picnics, weddings, baby showers, and work, I had that glass of wine and some days I tossed all the vitamins I thought I needed…. I cried, sometimes very hard, and I laughed…. I tried to the best of my ability to put my health in my doctors' hands. That was so very hard for me, I am a control freak. I need to control everything. But I could not fix myself. I somehow made a promise to myself; I have this one life, I needed to go live and let the doctors fix me. Take your treatment just like I did, day-by-day and hour-by-hour, because looking any further ahead makes it all way too hard

"I still trek down to Penn every 6 months since 2001. My life is forever changed by this illness called breast cancer. But I have grown to learn that I am not in control of this and so I must try and put it down, turn it off, and go live this fabulous life I was given."

-- char123, diagnosed triple negative in January 2010

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