Disclosure :: our Breast Cancer Awareness series is sponsored by Baton Rouge General.
My name is Monica. I am 51 years old, and I was the healthiest person that I knew until February 2017. I felt that I had it all … a wonderful family, my health, educated with a great job.
How life can change in an instant!!!
After a fun Friday night out, I rolled over in the middle of the night to get out of bed and I noticed something that felt weird in my right breast, and I realized there was a lump about the size of a small egg. It was about 3 a.m., and I immediately began to panic and search the internet for information on breast cancer, which I knew nothing about. I patiently waited until 6 a.m. to call my sister who is a nurse. I was desperate to have someone look at it and was lucky to get an appointment on Saturday afternoon with a young internal medicine doctor at Ochsner’s after hours clinic. I told him it had to have grown very fast because there is no way I could have missed the large lump. Once he felt it, he said that he understood what I meant, and his whole demeanor and voice changed. He told me the fact that the lump was hard, did not hurt, and did not move were all signs of it being malignant. He left the room and came back and said that they were scheduling me for the first available diagnostic mammogram, and if it wasn’t right away, he was calling first thing Monday to get them to fit me in ASAP. He told me that I would be getting a lot of tests done and that I had a long road ahead of me. He gave me a big hug when I left.
This was the beginning of my breast cancer journey.
The mammogram was scheduled for Tuesday, but I was able to change it to Monday. They did both a mammogram and an ultrasound that day. The radiologist knew that it was most likely cancer. The first thing that came to my mind was my 3 children and 3 granddaughters. I have to be here for them. I told him that they could do whatever they need to do to me, just tell me that I am not going to die. He put his hand on my shoulder and said in a comforting voice, “Don’t worry, we are going to get you through this.” He scheduled me for a core biopsy of the breast and a lymph node on Thursday. I received the call with the results that it was breast cancer on Friday evening, a type called invasive ductal carcinoma. By this time, I had prepared myself for the news.
My breast had begun to bruise badly as a result of the biopsy and when I showed my daughter on Sunday morning, she insisted that I go to the emergency room. I was told that was normal and was sent home. The already large tumor more than doubled in size in the weeks following. I really didn’t know anything about breast cancer except that I had recently seen several women dying from it on Facebook. I had been told that triple negative was the worst because it is the type most likely to recur. I received the pathology results on Monday and learned that my cancer was the triple negative type, meaning that the cancer cells do not react to the hormones estrogen and progesterone or to the growth protein HER-2. These triple negative tumors are very aggressive and grow very large. The good news was the lymph node that was tested was clear.
Surgery, MRI, PET Scan & Genetic Testing
I was scheduled to see a surgeon the following week, and he scheduled a breast MRI, a PET Scan, and genetic testing while I waited to get in with one of two oncologists. He also scheduled me for outpatient surgery to have a port placed in my chest which makes chemo easier and blood can also be drawn through it. My treatment had to begin as soon as possible and would be 12 weekly rounds of a chemo called Taxol followed by 4 rounds of another chemo called A/C every other week. A/C is a combination of Adriamycin, also know as “The Red Devil”, and Cytoxan. I was informed of all of the terrible side effects and signed the consent. I began chemo treatments just over a month after discovering the lump. Upon completion of chemo, I would have to wait a month to have surgery, which would most likely be a mastectomy unless the chemo shrunk the tumor greatly, and then a lumpectomy could be possible. I would also need to get radiation, followed by reconstruction. I soon learned that I had an excellent team of doctors, and I was in great hands.
Side Effects & Cold Caps
One of the side effects of this strong chemo regimen was that I would lose my hair. I was told by a friend that another friend had used cold caps to try to save her hair. I had never heard of this but began to check into it. Although it would be a lot of money and work, I decided that I would try it. I rented and continued to use the cold caps throughout my treatment. The cost to rent the four caps was $495 per month, with a $500 deposit, and my chemo regimen would last close to five months. This was in addition to the cost of 50 pounds of dry ice per treatment. But I had the most beautiful head of curly hair on which I was complemented constantly and decided it was worth it to try to save my curls.
As I began my chemo regimen, I had my mind set that I could do this and would be strong. I did not want my granddaughters to see me sick, and being single, I could not afford to be out of work. I was so blessed to be spared the terrible nausea that most people experience, but I did have minor side effects such as constant nose bleeds for the first 12 weeks, losing toenails, and fingernails coming loose from the nail beds. I also had some neuropathy in my hands and feet but not as bad as some people get it. This can be permanent, but in my case most of it has gone away. I had my treatments on Tuesdays, and with the A/C chemo, I was low on energy over the weekend following treatments. But most importantly, the large tumor did not seem to be shrinking so I did not think that the chemo was working on my cancer. One reason they, in some cases, want to do the chemo first is so that they know it works on your cancer in case it recurs, and in doing surgery after they can judge that by the tumor size.
The Results of the Cold Caps
The cold caps proved to be a lot of work, as there were 4 of them and they had to be frozen to -35°C and rotated in an ice chest with 50 pounds of dry ice and changed on the head every 20-25 minutes. This meant hauling an ice chest and two people to help to every treatment. It was a very scheduled process, the caps would be frozen for an hour then worn an hour before, during and 4-5 hours after treatment, for a total of 9-10 hours. I had lost all of the hair on my body, including nose hairs, eyelashes and eyebrows, but I had not lost much hair on my head until I had an incident that changed everything.
The chemo makes the hair dry and brittle, and the curly hair gets matted and is hard to manage. I washed my hair one Monday morning, and I was running late so I decided to just brush it when I got to the office. Not long after, I discovered that all of my hair in the back had become one huge dread lock bun, which was very tight, pulling and hurting. It was so tight that you could not even stick a narrow skewer into it. I spent at least 80 hours over the next couple of weeks trying to get the knot out and in doing so, pulled out the majority of my hair. However, I did not become totally bald as most of the short lengths of hair, perhaps the newer hair follicles, remained. I began to wear silk scarves to cover my head. Although it was unfortunate that I lost the majority of my hair in the end, I knew that it was just a freak thing that I had no control over and that I had done all that I could to save it. My daughter was dedicated to being at every treatment and sacrificed a lot of time and effort changing every cap because she knew how much it meant to me. I was surrounded with so much support from family and friends during this time.
The Tumor Had Shrunk
Once I was finished with my chemo, another breast MRI was scheduled and I was surprised to learn that the chemo had indeed shrunk the large tumor, and it had become a large fluid filled cyst which apparently does not happen often. A mastectomy had been scheduled for August 23rd, a month after my last chemo treatment, and I was told by my surgeon that he would have to cut the chest muscle, and would remove the cyst not to rupture it and spill any of the fluid. I also learned that he would have enough skin left to close it up without having to take skin from my back which we originally had expected. Since the tumor had also touched the nipple, it was not able to be saved.
The surgery was a big success, and he did not even have to cut the chest muscle. The doctors and I were all very pleasantly surprised with the results and my surgeon did a great job. I was told that recovery would be 2-4 weeks following surgery, and again I was so blessed that I did so well that I went back to work 8 days after surgery and was hardly down at all. Pathology was done on the tissue that was removed and what was left of the tumor, which had gotten as large as 8cm x 10cm, was only 1.1cm, which was a great response to the treatment. Nine lymph nodes were also removed and tested and were all clear which was great news considering these are the first places the cancer would spread.
Next Step :: Radiation
The next step is to have radiation since the tumor touched the chest wall. I am scheduled with a radiation oncologist and following that, I will have 33 treatments over 6 ½ weeks, every weekday. Once that is completed, I will have to wait 3-6 months to have the breast reconstructed to allow time for it to heal. I also have to make the final decision of whether or not I want to remove the left breast, as this would be done at the time of reconstruction. I am leaning toward not removing the second one, as the genetic testing was negative and the risk of getting cancer in that breast is just .3% per year. It has been a very difficult decision in which I have consulted with five doctors and they all seem to agree with my decision.
With the type of cancer that I have, the risk of me getting it in the other breast is also lower than in other parts of the body, and as one doctor told me, you aren’t going to cut your leg off. The trend today seems to be to remove both due to the fear of recurrence. However, it is my understanding that it can recur in the breast even with a mastectomy. When breast cancer reacts to hormones, they can give you hormone therapy treatment to follow to reduce the risk of any cancer remaining or recurring. However, unlike those types of breast cancer, with the triple negative type there is nothing more they can give you to treat the cancer. The main purpose of the chemo is not to kill the tumor which will be removed, but to kill any microscopic cells which may be throughout the body. My oncologist is looking into whether I am eligible for a couple of clinical trials being done with triple negative breast cancer. One uses new technology called immunology and the other uses a new platinum based chemotherapy, both of which may one day be used to treat this type of cancer. As much as I do not want any additional treatment, if I am eligible and it will reduce the risk of any cancer remaining or recurring, I will agree to it. I have also participated in another clinical trial which will hopefully minimize the damage to my heart as a result of the A/C chemo.
DIEP Flap
Because I will have radiation, breast implants are not an option, so I will have a procedure called DIEP Flap, where the fat and skin is removed from the belly and used to build a new breast. I was told that due to the large size of my breasts, they will need to use all of my belly fat just to make one breast in a 4-5 hour surgery. They will also do whatever needs to be done to the other breast to make them match in size and symmetry. Normally if both breasts are removed, they take half for each breast. Should I choose to remove the other breast, the time in surgery will double. Additional surgeries will be required once time is allowed for healing, for balancing and any necessary adjustments. Since the nipple could not be spared, I will also need nipple reconstruction and/or tattooing as part of the reconstruction process. Meanwhile, I will be able to purchase a breast prosthetic to insert into a mastectomy bra.
Originally I was dreading the fact of having just one breast for 6-8 months, but once you get to this point, it is not such a big deal in the whole big scheme of things, survival is what is important. But through it all, I have been so blessed to receive so much love and support, and had so many people praying for me, that it has allowed me to stay strong and push on. I missed work as an electrical engineer only for my many appointments, and continued to live and enjoy my busy life throughout the process.
Check Your Breasts & Get Your Mammograms!
It is so important for women to check their breasts often and get mammograms as scheduled. My cancer is not genetic, I have never had any type of female health issues, and I have never smoked a cigarette in my life. I am the last person I would have ever expected to get this disease. Not once has this tumor caused any pain, even when the breast was severely bruised. Had it not been for me discovering the fast growing lump, I would not have known perhaps until I had another mammogram, and it could have spread by then.
Another thing I had no idea of is that most deodorants have aluminum as one of the main ingredients which can cause breast cancer, and it circulates through your blood stream and also weakens hair follicles. As part of the cold capping process, I had to change my deodorant to aluminum free, and also change to shampoo and conditioner that is paraben and sulfate free and ph balanced. I could only wash my hair once a week at a certain time with only cold trickling water and very careful brushing. No other hair products or blow drying was allowed.
Facing the Challenge
This journey has not been easy by any means, and I still have a long way to go. However I feel that I have gotten through the hardest parts of it. I faced the challenge and refused to let it get me down. I made the decision to share my story on Facebook and have received so many messages from people of how much of an inspiration I have been to them. It is all so very touching. My other daughter planned a beautiful fundraiser for me in which I was supported by a couple hundred friends and family members.
My advice to anyone faced with this terrible disease, or any disease for that matter is to be strong, go into it with the attitude that you have got this and can handle it, because it could easily bring you down quickly otherwise. It is a long process and can be very overwhelming at first, but it gets easier. Keep your spirits up and keep on living life as usual as much as possible because sitting around feeling sorry for yourself and getting down will only make it worse. Also, talk to people who are also going through similar situations. This has helped me tremendously from day one.
The day I discovered the lump, I learned of a friend’s wife who was also going through it, and in talking with her, I learned that this disease is way too common and survivable. Statistics show that 1 in 8 women get breast cancer, which was shocking and very scary to me. We can only hope that a cure will somehow be found in the near future for this dreaded disease that affects so many women and men.
