Self Advocacy and Self Care is Paramount to Beating Breast Cancer.
I remember when I discovered a lump in my breast the first time. I was living in Albany, NY. I was performing my self exams and I felt a small lump about the size of a dime. I was twenty-five years of age. I didn’t smoke and was very athletic. I scheduled an appointment with my internist, so we could work together to make sure this wasn’t (gasp) Breast Cancer. Dr. B. was really good and she would listen. We were a great team that worked to ensure I stayed healthy. So when I told her about the lump, at first she said, you’re really young and I don’t think this is cancerous. She felt it for herself and said, let’s keep an eye on this. If it grows, I will send you for a biopsy.
Well it grew from the size of a dime to the size of a quarter. We were both concerned, because then we still didn’t know the information about Breast Cancer that we have today. The Surgeon I had then was a woman as well. She didn’t think that I had Breast Cancer and almost refused to perform the biopsy. She said, you are too young and too healthy. But the lump kept on growing, now it was the size of a 50 cent piece. So now we all had to make sure that this wasn’t (gasp) Breast Cancer. The Surgeon performed the biopsy. She found and removed 27 benign cysts in my breast. (Wow) I was relieved and so was Dr. B. She told me that she was proud of me for performing my self exams and we erred on the side of caution. This same attention to my body along with GOD’s mercy would save me later in life.
I am and have been blessed to have my Mummy as a Nurse. She was a Nurse long before she graduated as the valedictorian of her Nursing class. Nursing was in her blood. Our Great Aunt was a Nurse/Midwife and had delivered many babies successfully. My Great-GrandFather had set and healed my Mummy’s broken arm. (One Doctor asked about the fracture and was amazed at the work that Great-GrandFather had performed.) My Mummy informed me that we work together with our Doctors and healthcare professionals to ensure that we receive our best care. She said, Doctors are not GOD, they don’t know everything and sometimes they get it wrong. They are not out to harm us, but the human body is very complex and sometimes the diagnosis does not fit. She said, take my arm for example; back when it was broken the doctor said; I would never be able to use it. My GrandFather, gave me some herbs for the pain and set my arm first. Then he took charcoal ash and sugar to pack the wound and ensure it would heal. Then he took a spider web to help close it up. (Just so you know, my Mummy’s arms worked very well. She bore six children and could grab you for a hug or spanking with ease.)
Like a lot of Black people that are descendants of Slaves, we treated ourselves and did not go to the Doctor’s office. One because we couldn’t afford it and two because of the mistrust of the medical system. My family was very fortunate. My Father served in the US Navy. Our family had healthcare because of his sacrifice. I learned to go to the Doctor and how to ensure that I was caring for myself. I learned that my Father was hypertensive and had thyroid disease. I learned that my Father and Mummy had the different RH or rhesus factors in the blood. That is why I have the testing marks on my wrists. I always listened intently, to their lessons and stories. It has given me a wealth of knowledge. I learned to listen to my body, especially since I was prone to having migraines. Plus, I was also blessed with the healing arts. I am a natural massage therapist. It’s a gift from GOD, these hands can remove pain and feel trauma.
Fast forward to five years ago, I felt a lump in my right breast. I was not alarmed because I had detected the other lump in 1988. This lump was not in the same place as the other lump. It felt different, but again I was not alarmed. I remember what Dr. B. said; watch it and see what changes occur. This lump grew more rapidly than the first one. From the size of a dime to the size of egg in about 10 weeks. Mind you, I had a Mammogram done the previous year. Plus, I was diligent about my self exams. So I went to see my Doctor, the new Dr. B. She is a young Black Sister. She has a great smile, she listens and has wonderful manners. Additionally, she has the most infectious laugh. It’s really my pleasure to be one of her patients. She checked my lump and gave me a referral to the Women’s Center.
I traveled to the Women’s Center that week. I see the Technician that worked with me, when I had my last Mammogram. She tried to hide her concern, but I could see it in her face. She touched me on the shoulder and said that the Doctor would read the pathology. Then she said, she would make sure to send the report directly to Dr. B. I looked her in the eyes and said, you know I was here last year. Between me and you, what do you really think. She said, I would call the surgeon and schedule a biopsy. So that afternoon, I went directly to Dr. B. and waited to see her. That was the only day I ever told her receptionist to shut up and let Dr. B know that I am here. I will be waiting and I am not leaving until I can see her. (Her medical receptionist, attempted to dissuade me from seeing Dr. B., because the report had not gotten back yet.) I sat there and waited 3 hours until she saw her last patient. I told her about the 5 cm mass in my breast and that we needed to schedule with a surgeon she trusted. She gave me a referral to Dr. C. and scheduled it for that week.
Dr. C. is like an Army Doctor, kind of brusque and straightforward. So the first thing I asked him, Sir do you believe in GOD? Why? Because, if a Doctor doesn’t believe in GOD, they can’t work with me. GOD gives these Doctors, Nurses and Medical professionals all the gifts to work on our human bodies. Even when they can’t, GOD can and will heal us. (They are called Miracles.) Yes, I am a walking and breathing Miracle. I have Sarcoidosis in my lungs and GOD lets me breathe. My Pulmonologist is amazed that I can breathe unassisted. My lungs are badly scarred. Yes, this is one of my many Miracles. Dr. C. affirms that he believes in GOD. This is a good start for our visit. Then, he explains how the biopsy be will performed . We schedule that procedure for two weeks, because of how busy his calendar is. I call Dr. B and let her know how we are proceeding. I continue working and I am still not alarmed at this point. Because of the Sarcoidosis, I think this is a granuloma type cyst in my breast. I also assume that like the first lumps this one is also benign.
I was working and focused on a new project. This new account was a welcome distraction from waiting on the pathology report to be read and finalized. Then I received the words that turned my world upside down. “I regret to inform you that it’s Breast Cancer.” These words have a life of their own. The phrase just strips your mind bare. You are trying to wrap your thoughts and spirit around what seems like a death sentence. In that instant you have an outer body experience. I was in shock and it was a wretched evening of insomnia. My mind kept playing those words over and over.
When I returned from my teaching seminar; I started reading every piece of information on Breast Cancer. I learned that there are forty different types of Breast Cancer! (Yes, 40) Because I was in shock after Dr. C. informed me of the findings, I forgot to ask what type and grade. This information is vital in anyone’s self advocacy when dealing with any type of Cancer. As a Breast Cancer warrior; finding good information; executing that knowledge and self advocacy are key to working with your Doctors. I studied about 80 hours worth of information on Breast Cancers. I reviewed information from the CDC, NIH, the Mayo Clinic and the American Cancer Society.
My next job was to find an Oncologist. Now in general I like Women Physicians. They tend to listen more and are more open to new information. Being a Woman, they know more intricately about being a woman. I wished I had of found a Women Surgeon. Having Dr. C. was one of my regrets. We (my Partner) and I went to the follow-up consultation. I learned that the cancerous mass was a stage two, grade two, 5 cm mass. He asked me, which surgical option was I choosing. Was I going to attempt to save my Breasts? Was I going to have a Bilateral Mastectomy? (Removal of Both Breasts)Or a Lumpectomy? At that moment, I thought about my Daddy. After Prostate cancer he had Spinal cancer. The recurrence of cancer is the biggest concerning factor. Having to battle this multiple times is a bear. That is why GOD has to be with you. I opted for the Bilateral Mastectomy. I decided right then and was clear about my choice. I wanted to ensure that the cancer could not hide if it returned.
Dr. C. desired to perform the surgery the next week. I said, No! Why, first because we were in the middle of summer. Second my Birthday was that week and I was not going to be in the Hospital on my Birthday. (No- No and Hell NO!) My Mummy always told me, never have surgery in the summer and especially not during Dog Days. Your body has a hard time healing from surgery then and you are more prone to infections. My Mummy had gone to glory, but her words always are with me. So we schedule surgery for Sept 3rd. Dr. C. and I talked about this surgery and that the mass would be removed and sent for pathology along with the sentinel lymph node in my chest. If the margins were clear, then they would not have to perform dissection on my axillary nodes under my arm.
Unfortunately for me, Dr. C. didn’t wait for the pathology to come back from the lab during surgery. He went and took out the axillary lymph nodes from under my right arm anyway. As you would surmise, the sentinel lymph node in the chest was clear. So Dr. C. now has put my right arm in jeopardy, because he removed lymph nodes that were not required to be removed. Which caused me to have lymphedema in my right arm. This is a danger that never goes away and it also causes you to have a more compromised immune system. Next this Doctor would go on to cause me harm again. When you have this type of surgery, they must insert J.P. drains in your chest.
When I went to have them removed (J.P. drains), I was not on pain medications. I stopped taking those after I left the hospital. For me heavy medication for pain causes constipation. As I was on the exam table I asked him was he going to numb the site. I asked him this twice. He then asked my Partner a question, I looked to see her response and he jerked the J.P. drain from my chest with great force. I yelled and cried from the pain. I really desired to do him great bodily harm. The nurse, my Partner and I looked at him in disgust. Just so you know, when I returned to have the other J.P. Drain removed the Nurse practitioner removed it gently without pain. The way she removed the J.P. Drain did not leave a scar. The side where the doctor removed it has a scar and it developed a keloid. (Find a caring Female surgeon if you must have this surgery.) I reported this to my Family Doctor; Dr. B. so she would stop referring women to him for surgery.
I received a copy of the pathology report on the cancerous mass they removed from my right breast. The initial finding was a Triple Positive Breast cancer. This was a good outcome considering that it could be treated more successfully. (Read about “Robin Roberts of Good Morning America”) Her Breast Cancer battle is one you don’t desire to go through; Triple Negative Breast Cancer. So I read the entire report about seven or eight times. At the very bottom of the report in small print; it says, this report is inconclusive. So I make an appointment with Dr. B. We read the report together, because I needed to make sure I wasn’t crazy. (Yes, she read the same thing I did.)
I visited my Oncologist Dr. R. with this information. Now Dr. R. is a women and she is very passionate about helping people fight cancer. Her Mummy died of Breast Cancer. For her these battles with cancer are personal, this perspective can be both good and bad. I have found sometimes when a person is too close to an incident, it may sometimes cloud their judgement. Dr. R., read the pathology report and desired to start me on Chemotherapy right away. This was her go to, be aggressive and quick. But for me, she was not seeing the inconclusive part on this pathology report. So I told her, No! I said, No to the Chemo!
Let me be perfectly honest with everyone of you. I had never planned on taking Chemotherapy! (Yes, you read that correctly.) You see, I had friends that have passed away from Breast Cancer. I have seen the damage of fighting both the Breast Cancer and Chemotherapy. I did not desire to go to Chemo Hell. I was perfectly willing to take however many years GOD would give me and live my life. Just think if GOD gives you a chance to live your life and serve to the fullest, would you take the information and do your best to serve? That is where my life shifted, I would take whatever time I have and perform more and better work for GOD.
Now, I told you earlier that I had studied the medical reports on Breast Cancer. I knew about the medications and some of the clinical trials going on. Guess what else I discovered? There was a new test that could pinpoint the type of Breast Cancer that I have. The Oncotype DX test. (Oncotype DX information) My Oncologist balked because the results take six weeks to return; if the insurance would pay for the test. I was blessed my insurance company did pay for this $7000.00 test. How awesome, right?? What’s more awesome? It found out that I did not have Triple Positive Breast Cancer. The Breast Cancer that I battled is ER+ (Estrogen Receptive positive). Here is something else I found out. A new study discovered that Women with ER+ Breast Cancers ( https://time.com/5303130/breast-cancer-skip-chemo/) are not helped by taking Chemo! That’s correct, taking Chemo was not necessary for my early stage estrogen receptor positive Breast Cancer.
This is why you must be your own advocate and practice self care in your battle with Breast Cancer. Just imagine, if I would have not taken the time to study and find out this information. I would have been pumped full of Chemo and it would not have done anything but made me sick or opened me up to another illness cause by the chemotherapy drugs. My Sisters & Brothers ensure your care by working with your Doctors. Read everything you can about your disease. Ask questions about any and all therapies. Know that you have the right to say No! Surround yourself with good Friends & Family and have them pray for you. Learn to laugh a lot and often. (Yes, laughter is one of the best medicines.) Practice Self Care, by loving you and taking care of you first. Truly, self advocacy and self care is paramount to beating Breast Cancer!