My name is Barbara, and I am a 19-year Breast cancer survivor!
My journey started at the age of 49. I am in the medical profession as an ultrasound sonographer, so I knew a little bit about Breast cancer. At least I thought I did. Little did I know how truly little I knew. I was faithful about doing my yearly mammograms but probably not quite as faithful doing the self-examination of my breasts. I had dense breast, so the tumor did not show up for at least 2 or more years. At least that’s how long my oncologist thought it might have been there. Even when I knew the mass was there, I still couldn’t feel the mass.
I noticed a dimpling in the skin one night when I was undressing. I told myself that it probably from the pressure of my bra. I’m not an alarmist so I just went about my normal life for 3 weeks. I was always busy when I got to work so never thought about scanning myself until one night, I realized that I was being stupid by not scanning myself so I marched on down that night to the local hospital where I would take calls on occasion to scan myself and put my mind at ease. What a shock it was to see this well-formed mass underneath the area of dimpling. It was taller than wide but most importantly it was a spiculated mass with spikes extending from the main part of the mass. As soon as I saw the image on the ultrasound monitor, I knew that it would be malignant. I was lucky to have an “In” into this Breast cancer journey that many women don’t have. My biopsy happened two days later and my results 3 days later. This is unheard of, but I personally knew the radiologist that did the biopsy. I saw the oncologist on day 5 because of the referral from the radiologist. From the moment I met the oncologist I knew this was my doc! He explained that at 49 I would need chemotherapy whether or not I had positive lymph nodes. So, his explanation was if I did chemo first it could be a safer surgery in regards to spreading cancer cells since the tumor would be shrinking and not growing. This turned out to be the perfect decision for me. Little did I know that the closer the tumor is to the nipple the closer it is to the lymph nodes in the armpit. So, I believe if I hadn’t done the chemo first, I might have ended up with positive lymph nodes.
Within a weeks’ time I went from thinking I was as heathy as an ox, to being in my first chemo session as a cancer patient! Wowza! I decided to do the chemo sessions in the group room not in a private room and I was so happy I made that decision. To be in the room with other cancer patients from all walks of life and all stages of cancer was an incredible experience. We were all there for each other and shared our different stories from our personal journey. I ended up having 4 sessions 2 weeks apart. The office manager where I was working at the time told me if I wanted to work during this treatment, she would be honored to have me there. I decided that my second week post chemo might work. I was so glad she gave me the offer because it gave me a sense of normalcy in the new world of mine that was far from normal. It worked out great because the first week I was fatigued but felt good on the 2nd week.
During the 8 weeks of my chemotherapy sessions, I witnessed several Breast cancer patients that had recurrences. This made me realize that I never wanted to go through this process more than once if possible. Doing chemo first also gave me the opportunity to get first and second opinions from different surgeons as well as different surgery options such as lumpectomy, mastectomy, and double mastectomy. I also had the time to consider reconstruction options…. immediate reconstruction, delayed reconstruction, implants, and or tissue flap reconstruction. I did not have a clue going into this journey about the number of decisions that I needed to make.
In the end I decided the best decision for me was the mastectomy. There were many factors that led me to this personal decision. Now came the decision on single mastectomy vs. double prophylactic mastectomy. I had an idea what I thought was best for me but wanted a professional opinion about this option. I decided to ask my female surgeon about this option. She had never mentioned double mastectomy to me but as soon as I brought up the subject, she responded enthusiastically that it would be the decision that she would make if she was going through Breast cancer. So, there was my answer!
Lessons that I learned going through this journey:
Medical professionals seem to be careful about allowing you to come to some of the personal decisions regarding your care. You might ask what would you do if it was you, your mother, your wife, your loved one? If you ask that question often, you will get an answer that is more personal than professional to help you in your own personal decision process.
Going through chemo first and being a witness to the recurrences made me realize that I wanted to hit this cancer as hard as I could the first time around. The first time is your best shot at the cancer. If it comes back, there is a chance that it may come back more aggressive.
All the decisions to be made are all very personal and individual. One size does not fit all! Do your own research and make the best decision for yourself and your personal lifestyle. Hit the cancer as hard as you are comfortable with. You never want to go down the path of what if!
The decision that I made for myself might not be the right decision for someone else and that is OK! It is such a personal journey and personal decision. Do your research and arm yourself with as much information as possible to come to the right conclusion and decision for you! Feel confident about your decision that you made the best decision possible for your circumstances to fight this ugly disease. Again, hit this cancer as hard as you are personally comfortable with. It this cancer rears its ugly head again you want to know that you hit it with your best shot!
12 weeks after my first chemo session, I am heading for surgery. The decision for me was a double mastectomy with immediate reconstruction with implants. I liked the idea of tissue flap surgery, but it is much more of a complicated surgery and having chemo first made me in more of a weakened state. Therefore, the implant reconstruction was a better option for me. My tissue expanders were placed the same day as my mastectomy.
From the very beginning of my journey my attitude was of complete acceptance. Why not me? I felt that I had a better overall ability to be part of the Breast cancer club then most women due to my medical background, exposure to patients and friends going through this same process, a strong supportive husband to be along side of me as a caregiver, encourager, and my everything that I might need in this journey. Again, I thought, why not me? My only plea was for negative lymph nodes. I prayed long and hard for that one request. God answered my prayer, and I was blessed with negative nodes.
When I started this Breast cancer journey, I was 7 months away from turning the Big 50! I planned 2 years out for a Grand 50th party. This plan was part of a bucket list that I had dreamed of for many years. Hike the Grand Canyon and stay at Phantom Ranch overnight at the bottom of the canyon. This hike is not an easy feat. It’s a 10-mile hike with an elevation change of 4500 feet! I did not want to miss out on It! 5 months out from my double mastectomy with my tissue expanders still in place, I managed to do this amazing hike with my wonderful family and friends. Still to this day 19 years later, I think of this Grand adventure hike as my way of saying “Take that Breast cancer…You’re not stopping me!”
One of my amazing female mentors told me early on in my journey, ”Right now you are consumed day and night with this cancer diagnosis, but there will come a day, then a week and then months where you will not even think about your cancer diagnosis. This cancer diagnosis will not define who you are! You will be stronger because of it and it will be behind you.”
Some of the lessons I learned not to do are as follows:
Several well-intentioned people would say to me… You are so positive and that is why you beat this cancer. Hmm, I was mostly positive, but it really bothered me that I kept hearing “if you are positive, you will beat this cancer”. But what about the people that are having a really hard time and are so scared and nervous and frightened about this diagnosis. Maybe they never had a friend or family member who had never been through this? What about them? Are they supposed to pretend on the outside that they are positive about the outcome when on the inside they are dying and deathly afraid? If they are not allowed to be honest with their own emotions, the turmoil and stress that is going on in the inside will cause them more harm than pretending to be positive. So please, even if your intentions are good, don’t bully someone into making them be fake about their emotions and how they are dealing with this devastating disease.
Also, please refrain from telling your own stories about a friend or family member that went through cancer. Someone newly diagnosed with breast cancer, or any other cancer doesn’t need to hear your stories. If there is a positive outcome, then maybe share your story but please don’t share any negative stories. This new cancer patient doesn’t need to hear any more bad news.
This is a journey with many amazing women you will meet along the way. None of us wanted to be part of this club but somehow, we found ourselves as members of this special club. There are many women that have traveled this journey ahead of us and have given us so much hope and inspiration. There are also many women who are behind us that need the same hope and inspiration that was given to us. There is no one better than the women who have walked in these shoes that can come along these women behind us in the journey to give them support and empathy and help for their journey. We are a special club and need to give much to other women in this same club! Hope and encouragement is so helpful to these women. They even have a better advantage then us due to all the medical advancement in diagnosis and treatment.
As my oncologist put it, “We are taking stage 4 cancers 10 plus years out. It has become more of a chronic disease than a terminal disease!”
Looking back 19 years I hope my story can encourage women that are just starting off on their own journey and realize that 19 years later they may be looking in the rear-view mirror like I am today.
