Sister Stories: Melody Byl

My name is Melody Byl. I was 42 years old when I was diagnosed.  I am also mom of 4 kids; 23, 22, 15 and 15. I've been married for 18 years and I'm excited to have a grand baby on her way in June. 

It all started when I went to my yearly mammogram on September 21 2017 but first I want to rewind just a bit to tell you about my mother in law. She was diagnosed with DCIS May 2010. They found hers with her annual mammogram, she had a double mastectomy in July 2010 with expanders. 

October of 2014 it returned but this time we found out that it was in mets to her bones. She had a broken spine and ribs but the doctors could not find the source of her pain until one final fateful trip to the ER and an X ray showed the fracture. A pet scan revealed our worst fears - her cancer had returned, this time to her bones. Sadly she was stage 4 and it was terminal. She lived 2 years to almost the day of her diagnosis. She passed 10/4/2016.

I had gotten my mammograms since I was 38 years old . When I reached 42 , I realized I had forgotten the past 2 years to get one.  Something kept moving me to get one. The pamphlet from my dr's office told me I could get one after work and there is no waiting. In and out.  Perfect, I thought.

I went in on October 21, 2017 for a 3D mammogram. My insurance paid for it. Why not!! October 2 I get the call that something abnormal had shown up on my mammogram. I was asked to go in to get another scan of my right breast. I went in a few days later but as I was getting dressed the radiologist, the technician, and a nurse navigator appeared and told me that I needed a stereotactic mammogram guided biopsy. I was taken into another room. I was by myself with no other family with me. The nurse was talking to me and I was just in shock. I needed my husband and I needed him now!!! I called him, he was at work just down the street.  He rushed over to be by my side as the nurse explained the procedure to us. Unfortunately, they had no one available to do this type of biopsy for 3 weeks. 3 weeks?? That was insane!!! 

3 weeks came and I went in. My husband waited in the waiting room. During the procedure the radiologist cut into my breast & a large needled was inserted to get enough calcium cells to be able to biopsy. The problem was, I bleed a lot. I sprayed the entire room with blood. They were supposed to get 5 samples but because there was so much blood they could only do one. The radiologist told me that he really thought it was not cancer and that the previous radiologist had overreacted so not to worry. Go home, relax & your PCP will call you by Tuesday (October 31, 2017).

October 31, 2017 came.I had completely forgot that I was supposed to get my pathology report. My phone rang, it was the voice of my PCP.

"Is this Melody?"
"This is she, yes."
"This is Dr Varley, I have your pathology results back & it doesn't look good."

He then went on to say... bla bla bla bla pathology, bla bla bla bla, DCIS. Nothing felt real, I was in a sort of trance. What brought me back was when I heard my doctor say that a nurse navigator was going to call me to set up my appointments.

What appointments? My PCP said a surgeon and an Oncologist. It wasn't processing. 

"Wait," I said "Why do I need these appointments?"
"Because of your breast cancer."

I swear on my life I thought he was reading someone else test results not mine. 

My appointments were made. It was now October 31 and the local surgeon said he could see me in 2 days. He told me I needed a breast MRI because I had tons of calcifications in both breasts.  I was given an appointment right after Thanksgiving. I went and had the MRI and the next day saw the Oncologists in my small local town. He said my MRI looked bad and I needed to be referred to the breast center and their team at University of WI, Madison.

My 1st appointment was December 10. I saw the breast surgeon and the oncologist and I also had several more biopsies which confirmed I did not have breast cancer in my left breast, only in my right breast. They weren't sure how extensive the DCIS was. They were not very definitive, therefore I decided to have a double mastectomy with reconstruction which is also called DIEP Flap.

It is a 12 hour surgery and they scoop out the tissue in my breasts and use the fat and tissue in my tummy. I got a tummy tuck and new boobs. Win Win. 

I did not need chemo or radiation.

It was hard after the surgery. I was in theatre for such a long time so I was told the recovery would be very long too. I was in the hospital for 7 days. Typically patients don't leave their home for about 3 weeks. I am not typical and left the house with my mom about 3 days after surgery. Lol.  It took about 2 months for me to get to feeling like myself.  I am a Real Estate Agent and I started showing homes again about a month after my surgery which blew my doctors mind.

During surgery one lymph node was taken from my left and 2 lymph nodes from my right. On February 28 I was told I had no cancer in my lymph nodes. I had 8 cites of DCIS (Ductal Carcinoma In Situ).  This put me at a stage 1A. 

My breast cancer was Estrogen positive so I have to take a hormone blocker, Tamoxifen, for 5 years. I also plan on getting a hysterectomy July 9, 2018. 

I did not need chemo or radiation.

I want breast cancer patients to know and understand that there is a beautiful rainbow after the storm. It's important to remember to be positive and always surround yourself with a positive people but also remember it's ok to cry! I cried a lot on my husbands shoulder. 

This has been the hardest and scariest thing I have been through personally in my life. I felt like I was in an ocean with many life preservers thrown at me with names such as lumpectomy, mastectomy, radiation, reconstruction. I had to choose the right one to save my life and prevent recurrences.  I chose Diep Flap because I was able to get a tummy tuck and a boob job. Lol. My new breasts match my big butt which I am trying to loose with diet & exercise. 

I owe my life to my mother-in-law who's spirit guardian angel told me to get a mammogram & my Savior Jesus Christ. He got me through this storm. 

Sister Stories: Kim Hamilton Mennillo

Greetings, fellow breast cancer warriors! My name is Kim, I live in North Carolina, married with two marvelous children and four fantastic grandkids! The biggest blessing of all that came from having cancer is that I completely changed careers and went into the healing profession of massage therapy. Cancer has been a gift is so many ways!

My life with cancer begins . . . well, it begins in 1959 when my grandma was sitting in the back seat with me on a car trip, patted my thigh and said to my mom, "Mother, there's something wrong with this child's leg." I was four. The tumor was benign, but its removal was not the end.

At age 17, a senior in high school, I discovered a lump in my right breast, as well as another one in my left thigh in the same spot. There were actually two lumps in my thigh all wrapped up in muscle. All benign again, but the doc advised me to eliminate caffeine from my diet as the diagnosis for the breast lump was fibrocystic disease. He was also way ahead of his time, sternly urging me to never wear underwire bras so lymph fluid around the breasts would flow the way it should to keep them healthier.

Time passed, I married in 1977, and had my first baby in 1979. On a trip home to Ohio to see family, I caught the flu bug from my grandfather. Sick as a dog when my son was only four months old, stressed from being a new mother and facing a major move, my immune system attacked again and when my son was six months old, I was diagnosed with hyperthyroidism and Graves disease. No amount of medication brought it back to normal, and after another major move in 1981, I was given the option of having my thyroid removed surgically or swallowing radioactive iodine. I opted for the later and became hypothyroidone month later. I was also told to wait a year before being allowed to conceive the second child we wanted.

Our daughter was born in 1983 shortly after we moved into our new home. One day, a year later, as I stepped down on my left foot while carrying a load of laundry upstairs, I felt a familiar "pop" in my thigh. "Oh, not again!" I sighed heavily. More surgery, larger tumor, this time not so good a diagnosis—malignant neural sarcoma. The tumor was sitting on a nerve and it was the size of a goose egg! Quite concerned about my tumor-prone history, the surgeon recommended removal of part of the vastus medialis (inner thigh) muscle so these tumors would not keep recurring. He noted how each time the tumors came back, they were in areas north of the previous surgeries. If that continued, he was afraid the cancer would eventually return farther up my thigh and into the lymph nodes of my groin, which then would be much more serious and difficult to fight.

Believe it or not, all of my past tumors had clean margins and the cancer in my thigh had not spread, either. Regardless, he felt preventive surgery was necessary, so two months after the removal of that very large lump, a divot-sized section of muscle and skin was removed from my thigh. A divot! Leave it to a doctor to describe one’s surgery in golf terminology!

I rehabbed quickly, needed no chemo or other adjuvant treatment and prayed my cancer journey was over. I did have one slight scare. A couple of years after the preventive surgery, an x-ray picked up a spot on my femur. The doctor was concerned and ordered another test after a period of time to see if it changed in any way. I came home, told the kids we were going to do some Shakespeare and they would be allowed to swear! I asked them to get very close to my leg and shout, "Out, out, damned spot!" They loved it. And yelled it. Over and over (after all, I never said how many times they could swear!) We all giggled, but I couldn't stop their fun. It empowered them to take part in Mama's healing process. Don't you know that spot was not there at all when the next x-ray was performed! My little miracle workers!

So, no more cancer, right? Bwah ha ha ha ha ha! But, hey, not in my leg, anyway. Five years passed and while doing my routine monthly exam, I thought I felt a lump in my right breast. Saw my OB-GYN who said, "No, but you do have one in your left breast." Ordered a mammogram which showed nothing, then sent me to his wife's surgeon. He didn't think it was anything, said I was too young for breast cancer (I was 32) and advised we "just watch it." (Ladies, NEVER let your doctor say that. Please insist on a biopsy.) I went home happy, thinking I was free and clear.

Six months later at the city pool, I turned over onto my stomach while tanning and jerked right back up again. THAT HURT! My hand went immediately to my chest, in pain from lying on hard concrete. At home, with my thumb and fingers around my areola, I could move the lump all around in any direction. That sucker was directly behind my nipple. I had my mom check to see if she could feel what I was feeling. She did, and she cried, hugged me hard and begged me to go back to the doctor. Her mom (my grandma who discovered the lump in my thigh) passed away in 1975 from metastatic inflammatory breast cancer because she, too, was told it was "nothing."

Naturally, I went back to the surgeon who, upon examination, said, "This needs to come out." I didn't say anything, but I was thinking, "No shit, Sherlock!” He ordered another mammogram which again showed no tumor, and scheduled the surgery. I had since turned 33 and my first devastating realization was, "I'm the age Jesus was when he died on the cross!" And yes, this time the tumor in my breast was malignant (ductal in situ). The surgeon was standing over me, crying, as I awakened in recovery. He apologized profusely and said, "I really didn’t think you had cancer, but you do." To which I looked up at him and groggily replied, "I know." Somehow I knew something wasn't right. For a long time I had just felt soooo extremely tired, which I came to find out later is one of the most common symptoms of cancer.

At that point, the doctor gave me two options: 1) go home and discuss your options/treatment/etc., or 2) have a mastectomy the next morning. When he told me the removal of the tumor pretty much destroyed what was left of my very small size A cup breast, I said, "Take it off. Nothing to think about." I knew my family would just want me to live. I was done with childbearing and nursing, and having a breast or not made no difference at all to my husband.

During the first appointment with my oncologist, I begged him not to give me chemo. I remembered the horrible experience my grandmother had with it and didn’t relish the same for myself. Fortunately, he agreed and said a five-year course of Tamoxifen should do the trick. (I was actually in the first study group of PREmenopausal women to take this drug. The results were so positive for postmenopausal patients, the medical community was eager to try it with younger women.) I was so excited about NOT taking chemo, I called my mom to give her the good news. She said, "Honey, Grandma didn't have chemo, she had Cobalt treatments." I replied, "Oh! Well, ignorance is bliss, huh? The doc said I don’t need chemo anyway."

My breast cancer tumor margins were clean, there was no lymph node involvement and I pretty much sailed through Tamoxifen. For four and a half years of the five, anyway. I started having every side effect, including the rare ones (the most bothersome being vaginal discharge every damned day—truly, it’s a wonder I didn’t have toxic shock syndrome!), and asked the doc on March 17, 1992, if I could please stop taking it. He replied, "Yes, you're doing very well. I believe I can safely say you're cancer free!” I smiled and said, "It's St. Patrick's Day...what a lucky day to stop taking a drug!"

Shortly after my first mastectomy in 1988, I started to attend breast cancer support groups. Alas, the only groups around were filled with women in their 60s, 70s and 80s. I had little in common with these women other than the fact of breast cancer. I was young, my children were still home, I was still in the workforce. Fortunately, I found three other younger women who felt the same way, and the four of us co-founded a support group for pre-menopausal breast cancer survivors. It was such a wonderful thing to have this kind of sisterhood, camaraderie among women the same age, with similar concerns and questions. We laughed and cried together, grieved when someone in the group died and worked with the medical community to reach out to as many young breast cancer patients as possible. The only problem after our first meeting is that we didn't know what to name the group. And this is where humor during recovery comes in. I told my husband we had an amazing group of women but we didn't know what to call ourselves. He looked at me and deadpanned, "How about 'The Young and the Breastless?'" I was mortified and declared, "We can't name ourselves that! How is that going to look on a brochure?" Well, much to my surprise, the group loved it! And I learned a valuable lesson. NEVER take yourself or your illness or your treatment too seriously. Lighten up. Have a good sense of humor and share that with others. Laughter and humor will get you through cancer better than almost anything else. By the way, our literature read The Y & B Group and we told everyone in the medical community that stood for The Young & the Beautiful, but those of us in the group knew what it really meant!

A year after my mastectomy, I had my right breast removed prophylactically. Every month when I did my self exams I drove myself crazy with worry. Am I feeling something there? Or is that just scar tissue? WHAT is this? I decided enough was enough, underwent a second mastectomy and had saline implants (Becker tissue expanders) put in on both sides. Five years, ten, fifteen, twenty...with each passing year breast cancer was less and less on my mind. Except for in my career as a massage therapist where it took on a whole new meaning.

During my 1988/89 recoveries, I was re-evaluating my life, trying to decide what I really wanted to do or be. In the fall of 1990, I enrolled in massage school after the relief I got during a very painful period of my reconstruction. The release of the tension between my shoulder blades felt so good, I knew early in my education I wanted to take this career in the direction of helping others who had breast surgery. I have been blessed to offer my specialty in breast surgery massage to many clients, as well as teach this modality to other therapists. This year is my 26th anniversary of being a licensed massage therapist and it has been very rewarding and humbling. I truly feel it has been my way of giving back to the cancer community.

Aaaaand then just when you think everything is going so well, a new wrinkle messes up your freshly pressed life. It was the morning of Pi Day, March 14, 2015. My hubby and I were all set to get up, get dressed, go out and get a pie to share. Not so fast there, Skippy! Stretching to get the kinks out before I got out of bed, my hands ran down over my shoulders to get the circulation going, when, UH OH! "Honey!” I called out to my hubby. “I've got a flat tire!" The right saline implant had completely deflated after a well-behaved, 26-year run. How dare it give up on me! My "girls" were nicely rounded, high and perky on my chest and I hadn't worn a bra in 26 years! Now I'm going to have to wear one to hide this defect until I can get it repaired? NOT FUN!

Quickly, I called a friend who used to do bra fittings for mastectomy patients to ask if she had any fiberfill inserts I could borrow. Also had to find bra in that long forgotten section of my lingerie drawer. I was surprised it hadn't deteriorated after so many years of non use! Asked her, too, for plastic surgeon recommendations here in Charlotte. I knew no one as all my surgeries had been done in Ohio. After doing a bit of research, I realized the deflated implant would have to be removed, preferably within two weeks to avoid any possible infection. God love my friend, she helped me with all my requests and kept checking with me to see if I needed anything else!

The Becker tissue expander is no longer being used, and my new plastic surgeon recommended the "gummy bear" implants. He had a difficult time on the right side with scar tissue and the surgery took longer than expected. For whatever reason, these new implants never felt right. The year after they were installed, I needed a capsulorraphy to keep them from falling to the sides when I lay down. The one on the right still sat lower, so I asked for an inframammary fold lift. The doc agreed, but said he might have to use mesh to hold it in place. Then the bombshell! The implant on the left had developed capsular contracture, so it would have to be removed and a new implant put in. I was NOT expecting that! My body was rejecting them. However, not knowing what else to do, I was all set to have that surgery in early January of 2017 until I was giving a massage to a client who had the DIEP flap procedure. I was so impressed by the way she looks, and after speaking with a couple more DIEP flap patients, I scheduled that surgery for early March. Since implants have to be replaced every 10-15 years, and I would be 70-75 years old had I decided to go that route, I am so glad I had an operation using my own body's tissue. One and done! And no more foreign objects. Hallelujah!

Phase 2 of the DIEP flap surgery was done in November of 2018. The only existing challenge at this point is a bit of lymphedema above the abdominal incision. I am currently seeing an occupational therapist for relief from this swelling. She is using manual lymphatic drainage techniques and kinesiotape to redirect the lymph flow, and cold infrared therapy to break up underlying scar tissue. At home I’m applying scar reducing tape along the abdominal incision and breast scars.

My story will continue, I'm sure. The BRCA 1&2 tests I finally had done show no hereditary connection, so my daughter and granddaughters can breathe a little easier. I realize I am extremely lucky that I have not had to endure the horrible side effects of chemo and radiation of most of my fellow cancer warriors. My experiences, nevertheless, have been challenging in their own ways. Truly, I fret more over my thyroid condition and its continuing impact on me than I ever have with breast cancer concerns. Eternally grateful for the path God has, in his infinite wisdom, deigned me to take, I fully expect to enjoy a long and healthy life, serving others through support, massage and any way I can be of service on their journey to health and wellness.

NOTE: I purposely did not cite any or all possible risk factors I might have had for getting breast cancer. Suffice it to say, there were many, including hereditary, environmental, and occupational ones. I was born and raised in a very polluted area of southeast Ohio, but I do not and cannot place blame there. Yes, there was cancer in my family, but genetic testing was not done when those relatives were alive. It is pointless to lay blame anywhere. All I can do and continue to do, is take charge of my health and do everything I can to stay healthy. I hold only myself accountable and my faith in God is firm and unshakeable. I’ll be 63 this July and count every birthday as a precious gift. Never will I be one of those women who doesn’t reveal her true age. I’m eternally grateful for every one that rolls around! And if you count my age in years as a breast cancer survivor, I’m really only 30 years old!

To everyone, I wish you good health, a sparkle in your eyes, a smile on your lips and joy in your hearts as we walk this journey together. And be sure to keep your sense of humor! May God bless us all!

Kim Hamilton Mennillo
Cornelius, NC

Decisions

So having left my last appointment yesterday feeling very upset and angry I decided to go about researching everything myself.

At this point I am adamant I still want a double (bilateral) mastectomy with DIEP flap reconstruction. DIEP reconstruction is where a flap of skin and fat (no muscle) is taken from the tummy area and used to form a new boob. The skin and fat are taken from between the belly button and the groin along with the artery and veins. It is called DIEP because Deep blood vessels called the Inferior Epigastric Perforators are used.

There are so many other different flap options but this is the one I wanted because it only takes fat and skin, not muscle. The back flap (LD) operation that MR H had offered me would use muscle and the thought of that just made me feel sick. Besides,I defo had enough fat to make a pair of GG's on my tummy!

I joined a few faceboook groups for women suffering with breast cancer and asked lots of different questions.
I called Macmillan and asked them some questions too -mainly about DIEP flap surgery. So here's what I learnt:

- Unless you have the BRAC gene you are unlikely to be offered a bilateral mastectomy in the UK if only one breast is affected but you can fight for it.
- If you choose to fight for a bilateral mastectomy you will first need to be referred to a psychologist - likely delaying your operation.
- Gene testing on the NHS involves your consultant writing a letter to the lab recommending you for testing. They may not accept you if you do not meet the criteria.
- In the US you are automatically offered both a bilateral mastectomy and a hysterectomy if you have the gene.
- When you have radiotherapy it tightens your skin so any reconstruction will be affected and it's likely that further surgery will be needed.
- Not all reconstruction operations are available at all hospitals. I would need to be referred to another if I want to have the DIEP.
- You can only have DIEP flap surgery once. So if you have a unilateral mastectomy (just one boob) and you need another later down the line then you cannot have anymore tissue taken from your tummy.

So where do I stand now? Yesterday was horrendous but I couldn't just leave it at that. I'd have to get my own answers.

Having asked advice in many discussion groups, spoken to Macmillan team on the phone (who were absolutely fantastic) and having done my own research including contacting private hospitals for advice, I have decided that I am willing to run with the unilateral mastectomy with the expander and silicone implant. I will await the result of the histology and if  Im happy with the result of the implant and once any additional treatment is complete THEN I will proceed to have the risk reducing surgery on the right.

For peace of mind I want to request an MRI to be completely sure that there is no disease on the right and I also want to push for the genetic testing to see the risk for me and for my daughter in years to come.

I call my breast nurse and request an appointment with a different consultant - not Mr H. She agrees to book me in..

Two hours later I'm happy, I have an appointment on Tuesday to discuss everything, this time with the hospitals Lead Clinician for Breast Services.

I have a list of questions at the ready!