Survivor Stories 2013: Amy Leto

AmyLeto

Survivor Stories 2013:
Amy Leto

1. How did you first find out you had cancer?

I found a lump during a regular monthly self-check back in June of 2012. It was hard, and oddly shaped, not perfectly round, but more the size and shape of an almond with little dimples in it. I was dealing with some other serious health issues from 6 months prior, and had been forgetting to do my regular self-checks. And when I had my OB/GYN check up in January of 2012, it was not there. Most breast cancers form slowly over time, but I had a rare form of breast cancer called a Malignant Phyllodes Tumor. Mine was stage II when it was found. Phyllodes can be both malignant or benign, but I was one of the unfortunate souls to have the malignant form. Phyllodes tumors grow very suddenly. They can grow from the size of a pea to the size of a baseball within several months. Mine was the size of an almond in June, and by the time I had surgery in August it was the size of a walnut.

2. How did you react when you heard the news?

As soon as the lump was discovered, I called my OB/GYN and was brought in for a check up the very next day. He was very reassuring. He told me that nine times out of ten a Phyllodes turns out to be benign, and that only 5% of breast cancers are this kind. But he wanted me to have a mammogram right away. So, that afternoon I had my mammogram. I didn’t expect it to be anything serious. I just assumed they would tell me it was just a cyst, or something else that could be treated with medication. But I was wrong. I knew something wasn’t right when the technician came to get me to review the results with a radiologist. She had that unique smile on her face that one only uses when they have to deliver bad news. The minute I sat down with the radiologist to look at the scans, I knew that it wasn’t good. When she confirmed it and recommended a biopsy, my heart just sank. I was numb. My head was swimming with all of these emotions I had never felt before. And my biggest worry was having to tell my husband, and eventually having to tell my kids. What it would do to them. The fear they would have that they could lose me. So, I hoped for the best, but prepared for the worst. I had the biopsy the next morning, and it took about 4 days to get the results. It was the longest weekend of my life. By that time I had Googled, and done as much research as possible. Which only made my anxiety worse! My OB/GYN recommended that I see a breast surgeon immediately, So I saw her about a week later. I was also battling severe endometriosis during my breast cancer diagnosis, had a hysterectomy, and they found cancer cells in my uterus at the time. Thankfully the surgery took care of that as well!

3. What course of treatment were you prescribed?

She recommended surgery, a lumpectomy. I was told it was a simple outpatient procedure and that I could expect about a one week recovery, with some swelling and bruising, and to refrain from strenuous activity for about two weeks until my follow up exam. She said that when I came in for the follow up, we would review the final results and decide on any further treatment. When I went in for my follow up, she had good news! She was able to get clear margins, and she said that for the time being no further treatment was necessary. This particular cancer is neither genetic, nor hormone receptive, so medication would not help prevent reoccurrence. It also does not respond well to chemo and radiation. But, Phyllodes is the kind of tumor that can return, so for now I have re-checks and scans every 4 months. So far, so good!

4. What most surprised you about your treatment?

The amount of breast tissue that she had to remove, and the location of the incision. Because my tumor was only the size of a walnut and located on the side of my breast, I expected her to only remove a slightly larger amount of tissue and for the incision to be in that location. She recommended making the incision along the side of my areola. She said that it would minimize scarring. But I was concerned about the sensitivity of that area, and that it would change the appearance. She had to remove more breast tissue than anticipated in order to get what they call “clear margins”. They generally take a circumference of 2-3 centimeters additional tissue around the tumor to achieve this. But there is now a giant hole on the side of my breast where the tumor once was, and my left breast is now about 2/3 the size of my right one. I opted not to have reconstruction at that time, but I still have that option if I change my mind. With the help of a pad in the left cup of my bra, I look completely proportionate, so unless the cancer comes back, I don’t plan to have reconstruction.

5. What would your advice be to anyone who’s just received a cancer diagnosis?

DON’T Google! And try not to panic! Be your own best advocate, ask as many questions as possible, and take someone with you to your appointments because it’s very difficult to remember everything your doctor tells you. Make sure you have a good support system in place. And most of all, take care of yourself. Remember to eat, get as much sleep as you can, and exercise when you’re allowed. It makes all the difference in the world during treatment and recovery, if you can maintain good health.

6. How long have you been cancer free?

Technically, I have been cancer free for about 4 months. A couple of months after surgery we found another lump near the surgery site. She did another biopsy, which came back inconclusive. She recommended surgery again, and reconstruction this time because she would have to take too much breast tissue. But I was tired of it all. I didn’t want another surgery so soon. I told her that if she said “this is life-theatening, you absolutely need surgery right away” then I would take the plunge and go back in. But, that was not the case. So, I instead chose to watch and wait. I just didn’t want to put my family through it again. So, I went every month for scans, which showed little to no change in the tumor. And by April, it started to get smaller! The lump is now completely gone! So, someone up there has answered my prayers. It doesn’t mean that it won’t come back, and I still have exams every 4 months, but for now, I am cancer free!

7. What lessons did you learn from the experience?

I’ve learned to appreciate and count every blessing in my life, every day. I spend a lot more quality time with my family. I don’t sweat the small stuff. And I take better care of myself in general.

8. If you could send one message to all the Good Enough Mothers out there – what would it be?

Early detection is key! I post a monthly reminder on Facebook to all of my friends and family to check their boobies! I feel that if I can save just one person with these reminders, then I’ve done my duty as a survivor. I know those annual exams are a pain – both literally and figuratively, but a few minutes of pressing and squeezing can save your life.

I’m a happily married (soon to be 40!) mother of two amazing boys. Michael will be 20 on Christmas Eve, and Matthew will be 13 in June. I was born and raised in Buffalo, New York. But my family and I recently took a huge leap of faith and our dream of living in Orlando! I am now a Disney Cast Member, working in the Disney Reservation Center as an eCommerce Support Specialist. I spend my day helping Disney guests with their My Disney Experience accounts, as well as providing other internet help desk services. I love my new Disney family! It is so refreshing to go to work every day with people who truly enjoy their jobs.

Jackie Gailey is a work-at-home mom of two kids (16 & 12), wife of 20+ years to the greatest husband and dad, and owner of Jackie’s Magical Moments, where she blogs about experiences she has with her vacation-loving family. Jackie travels to the Orlando area at least once every month as work and school schedules allow because she feels that one can never have enough Pixie Dust in their life. Jackie is also a Panelist on the Disney Parks Moms Panel, so if you’re planning a trip to Walt Disney World and have questions, stop by and ask her a question! You can also follow her on Twitter at @jjzmgailey.

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