Cindy is a 55 year-old woman married for the second time and a mother to four girls and one boy. Having put off her annual mammograms for almost four years during her pregnancy and while carrying for her baby, she learned the hard way how important annual mammograms are. Cindy had a single mastectomy that was followed by chemotherapy. She offers insights into many of the side effects associated with chemotherapy as well as how to communicate effectively with both your children and parents. Her daughter Dusty is featured in one of our caregiver stories.
My name is Cindy and I'm almost 54 years old. I have 5 children. I have 4 girls and 1 boy. My son is 10. My youngest daughter is 20, and then 23, 24 and my oldest is 30. I'm married, and I have wonderful parents and in-laws, brother-in-laws, sister-in laws, one brother, and several nieces and nephews. I work as a one-on-one specialist with Special-Ed students currently, and I have a nursing background, surgical assistant and pre-school teacher.
I hadn't had a mammogram in three years because I was pregnant; then I nursed my son for a year; and I canceled three appointments because I was too busy. My father-in-law's radiologist suggested I come to his office because it was more convenient, and I did, luckily I did that. They performed a mammogram and there was suspicious lesions found in my left breast and it was recommended I have a needle biopsy. The needle biopsy was painless. I knew immediately when the needle was inserted in the mass that the doctor was concerned. It was the way that she was careful and choosing her words in talking to me. Two days later it was confirmed. I actually was away most of the day, a busy day, came home and my husband just looked at me and immediately said the results are not good. His dad had been informed because he was the radiologist and then he passed on the message to my husband.
I was shocked. I felt like the air had been knocked out of me, just disbelief. I felt like I was at a low-risk for cancer. I have a history of fibrocystic disease which are benign lesions of the breast so I really wasn't concerned when they told me they had found a mass, it was shocking. I immediately just went to my room and I cried. I didn't want my children to see me at the time. I'm trying to think of how I'm going to tell my daughters, how I'm going to tell my four daughters I have breast cancer. I immediately called my best friend and my parents who came to the house.
After the diagnosis and speaking to my family, my main goal was to get the cancer out. I talked to friends. I talked to family for recommendations for surgeons. I did talk to two. I thought it was important to get a second opinion. It was overwhelming. There's so much information and I felt grateful that with my nursing background I could understand the language and the terminology. I took my notebook and I wrote everything that was said and asked questions. This all happened within two days from my diagnosis. I saw two surgeons and from that I chose the one that I was most comfortable with.
When I went to see the surgeons, I had my husband with me. He was with me for every appointment, every treatment. He was terrified, I get emotional thinking about him because I knew I was going to be fine, but he was scared for me. I was diagnosed at the age of 45; it was a left breast, invasive dental carcinoma. It was found in the nodes and it was estrogen positive, HER2 negative.
When I woke up from surgery I was happy that it was over and I was relieved they had removed the cancer and that's what I wanted. It really did not even phase me that I had lost a breast; that wasn't important to me; and I just was relieved that the surgery was over and I could move on with the chemo. In talking to my surgeon about the mastectomy, we decided together not to do reconstruction. Prior to surgery we did not know if there was node involvement. We did not know if I would require radiation. It was important for me to have the surgery, to heal, to continue with chemotherapy and focus on that rather than reconstruction. I also had a son under two who I was going to be carrying and I just did not want to deal with anything other than my treatment.
Three weeks after my surgery I met with the oncologist and that’s where I got most of my information that I needed. She was able to give me a plan for treatment and I was told that because I had 2 positive nodes, I would need 16 weeks of chemotherapy and no radiation. If I had 3 positive nodes, I would have proceeded with radiation. After I met with the oncologist and she gave me the plan of treatment I reached out to friends who had gone through the same journey and experience with chemotherapy.
It was helpful for me to hear their experience and get some really practical advice as far as what do I need to expect. What to eat, what not to eat and how it was for them. Some of the advice I got was to pack a bag with things to keep me busy. Not to eat my favorite foods during that time because chances are they’d no longer be your favorite foods and just to eat lightly. Hydrate well, drink lots of fluids, do whatever was necessary for me to stay relaxed. My husband went with me to every chemotherapy appointment and that’s what he wanted, that’s what I wanted. I had offers from others who wanted to support me and I just felt comfortable with the two of us. Of course I worried about leaving my son but my parents gladly watched him for us. That was reassuring.
The first infusion went very well; no problems at all. I really did not have any side effects after that first infusion. 3 years later after my first surgery I did decide to follow up with reconstruction; the reasons being it was difficult to wear certain types of clothing. It was uncomfortable having to deal with the prosthesis all the time. I felt ready. I felt it was time.
For the reconstruction, initially they put in an expander; every week I would go in and she would inject saline. That process was not painful at all. Putting in the expander was minimal pain. It was an easy procedure. With the final process of the implants, that was painful. I felt like it was heavy bricks on my chest.
After the second chemo, I did experience side effects two days later and that was basically a little bit of nausea, metallic taste in my mouth, fatigue and that became the usual from that point on. On day 13 is when I started losing my hair and even though I knew to expect that; I could’ve never been prepared for what I was feeling at that time. I was sitting in the shower, washing my hair and it just started falling out in clumps. And that was definitely the most emotional point during this journey to just feel my hair falling out on the floor. I was just sitting in the shower with my water on me and just cried. I just cried deeply. It was healing for me at the same time. I decided to allow my hair to fall out and not shave my hair because I felt it was important to go through that process, feel those feelings, and move on. So at that time after that, I need to go get my head shaved. It was tough. I was able to come to terms with it because I thought “my hair is falling out, that means the chemo’s working and we’re killing this cancer and that’s what I want to do” I pulled myself together, go get my head shaved, pop on my wig. I did wear my wig most of the time, a lot of scarves and baseball caps. At home I just wore a scarf to keep warm. I was most comfortable with my wig. Shake it out, put it on. Good to go.
After chemotherapy I was put on on Tamoxifin and what I also did was I had physical therapy and massage therapy done as I had the lymph nodes removed. I talked to a specialist about a hospital and lymphedema to avoid that. To avoid lymphedema, the important thing is not to do any heavy lifting. Nothing over 10 pounds so, I’m very careful about that. No IV, no blood draws from that arm to avoid any swelling and massage.
Because of the lymph node dissection, I have some numbness in my chest and arm, upper arm. So my left breast does have a loss of sensation whereas my right breast doesn’t. I also opted not to have nipple reconstruction because that is done at a later time and I did not want to go through another surgery and it just hasn’t been an issue at all. I feel perfectly normal.
I spoke to my children the same night I got the diagnosis, so I met with my husband, we thought about how we were going to handle it and I just thought it was important to bring them in immediately, I wasn’t going to be able to hide my emotions and I felt that they really should know so we sad down together as a family, my husband and my kids and my friends; we told them I was diagnosed with breast cancer and we reassured them I was going to be fine; that I was going to get treatment and all was going to be well. When we sat down and talked about the diagnosis; there at first were a lot of tears. I don’t think they realized what I was saying and they looked to me for clues. How should I feel? What’s going to happen, and if I’m ok, they’re ok. My 14 year old was the most emotional and that was tough for her. They all tried to help in their own way; but they are young girls and they have school; sports and a social life. I encouraged them to continue on with a social life. I did manage my different family members in different ways. I don’t think my parents wanted to much information, particularly my dad. I just had a little to say to him. He didn’t want to hear about surgery or chemo. Losing a breast, losing my hair. My mom, she was a caregiver. With her, if she saw I was ok, she was ok. I think there was just that fear for your child but she kept busy taking care of all of us.
I think the most powerful message I gave to my daughters was for them to look at me in a different way. I was bald, I lost a breast, but I was still me. My body didn’t define me. I was still their mom and I think that was pretty profound for them as young women.
One thing I’d like to stress is the importance of mammogram. I did not have a mammogram for three years because I had a small child and a busy life: we all have busy lives. But if I’d taken the time to have the mammogram 3 years before, maybe it could’ve been detected before it reached the lymph nodes. The is one thing I wish I could change and that is not procrastinating, not cancelling my appointments, just getting that done. It’s vital. It’s important for every woman to do that. I feel it’s important to share my journey and share my story so other women that are having a similar experience can reflect on what I’m saying and I hope I can be of some help to them to make it a little bit easier for them, to be informed. To hold their hand. To be supportive.
One thing I would suggest to newly diagnosed women is to reach out. I think it is difficult, I’m independent, I like doing things on my own. I hate to ask for help. It’s important to receive help. It’s healing as the patient to receive the help also. For caregivers, I’d say…don’t ask what I can do just say “I’m bringing dinner for you on Thursday, I’m taking care of you on Thursday”. It gives a sense of community and a support system that is really needed. I think it’s important to be your own best advocate. Ask a lot of questions; any questions. Be informed. It empowers you and for me, it made me feel like I was doing something to help myself and I was part of the decision process. You have the medical community telling you need to do this and this and this. I felt I needed to be a part of that. For example when you have, for my mastectomy for some reason I was fearful they were going to take off the wrong breast, so my pre-op nurse took off a magic marker, she drew arrows you know, to the left breast and said “do this”. You know, I was relieved. I was put at ease. I would ask the chemotherapy nurse to please warm up my arm before inserting the IV because I knew my veins were difficult and it just. It made it easier for me to stay active and to find things that give you joy, even being outside. Taking my son for a walk. Being in nature was very centering for me. It’s a very personal thing but find things that give you joy and laugh a lot.