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Diagnosis
I felt a lump in my breast while showering in late August 2021. I saw my OBGYN four days later and she referred me to a surgeon who I saw two and a half weeks later. Both my OBYGN and the surgeon did a physical exam and palpated the lump. Both said they didn't think it felt suspicious, but the surgeon sent me for a mammogram to be sure. I had to wait a little over two weeks for the mammogram. My last mammogram was in September of 2020, so there was a year and 3 weeks between them. At the mammogram appointment they saw something suspicious and decided to do an ultrasound while I was there. The radiologist performed the ultrasound and told me I would need to have a biopsy. The biopsy was scheduled for 10 days later. At the appointment I asked the radiologist what he thought it was, and he said he believed it was cancer. I went to this appointment alone because I assumed they wouldn't give me any results until the pathology report came back. While I'm glad he told me then, I wish that I had taken my husband to that appointment, so I didn't hear the news alone. The official diagnosis came the following week, on October 18th, a little over seven weeks from when I found the lump.
Treatment Plan
At this first meeting with my oncologist, I learned that I had a less common type of breast cancer known as triple negative breast cancer (TNBC). Only 10-15% of breast cancers are triple negative. Triple negative means that the cancer cells don’t have estrogen or progesterone receptors (ER or PR) and don’t make any or too much of the protein called HER2. TNBC differs from other types of invasive breast cancer in that it tends to grow and spread faster, has fewer treatment options, and tends to have a worse prognosis. As you can imagine this was a very scary diagnosis and my husband and I left the appointment in a bit of shock.
Because I was diagnosed with TNBC, my treatment options were limited. The standard treatment for TNBC includes surgery, chemotherapy, and radiation. I was told I would have surgery first, then 16 weeks of chemo, then 30 rounds of radiation.
Surgery
My surgery was scheduled for October 28th, 2021. I'm so thankful that things moved quickly after I received my diagnosis. My surgeon performed a wire guided lumpectomy, which means a very thin wire is inserted into the breast to the target area of breast tissue to be removed. During surgery, the surgeon follows this wire as a guide to the target area. I was taken to the ultrasound suite where the radiologist used ultrasound to locate the tumor, then he used lidocaine to numb my breast tissue before inserting the wire. After the wire was placed, I was taken to have a mammogram to verify the wire was in the correct place. When I woke up from surgery, I had two incisions, one for the tumor and one for the lymph nodes that were removed for testing.
One week after surgery I had my follow up appointment with my surgeon. At this appointment I was told that my tumor was 2.6cm (larger than previously thought) and of the four lymph nodes that had been removed, two were positive for cancer cells. This meant my cancer was considered stage 2b. I was also told that the pathology report determined that clear margins were not obtained, and a second surgery would be needed to remove additional tissue. My second surgery took place on November 8th and clear margins were obtained.
A third surgery took place on November 29th to place my port for chemotherapy.
Chemotherapy
The chemo regimen I was prescribed is known as dose dense AC-T. AC-T is short for the names of the drugs, Adriamycin (aka red devil), Cytoxan and Taxotere, and dose dense is a way to give chemo more often than normal, with less time between doses. My plan included 4 doses of AC and 4 doses of T, lasting 14 weeks. My first chemo treatment was on Thursday, December 2nd, then every 2 weeks after that. The day of and day after treatments were the best, thanks to the steroids they give you during your infusion. The side effects usually hit me on Saturday morning. With AC, the side effects included severe nausea and flu like symptoms. When I started treatment, I had long hair below my shoulders. I had my hair cut chin length a week after my 1st infusion. The day after my 2nd infusion my hair started falling out in handfuls. I didn't want to have to clean up hairs all over my house, so I went and had my head shaved the next day. Many people ask if it hurts when your hair falls out. I would say it feels like taking your hair down after it's been in a ponytail for too long. Your scalp is tender for about a week. It hurt to wear a hat and even laying my head on my pillow was uncomfortable. After about a week the tenderness goes away and you're able to wear hats comfortably.
During chemo treatments I experienced Taxotere acute pain syndrome (TAPS) with pain all over my body, and minor neuropathy, mostly in my hands. I was prescribed a nerve pain medicine that helped. It took a few weeks for the side effects and pain caused by the Taxotere to go away, but by the third week after my final dose I was starting to feel a bit more normal and had regained most of my energy and strength.
Photon or Proton?
Just a few weeks before I was diagnosed with cancer, I met with a specialist at the University of Iowa to be assessed for a connective tissue disorder. I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). One of the characteristics of hEDS that I have is called pectus carinatum. Pectus carinatum is a deformity of the chest wall in which the breastbone and ribs are pushed outward. In my case, the right side of my chest protrudes out from the left side and caused my heart to be shifted to the right and my right lung to stick out more than the average persons. Because my cancer is considered aggressive, had spread to my lymph nodes, and I'm only 40, the radiation oncologist at my local treatment facility recommended radiation treatment of the lymph nodes in my armpit, under my collar bone, and the internal mammary chain nodes to obtain the best possible prognosis. With traditional photon radiation the radiation beam enters the body and travels in a straight line until it exits the body. Due to my pectus, treating all the nodes would result in my heart and lung receiving radiation as well, which can cause health problems down the road including heart attack and lung cancer. The local radiation oncologist recommended proton radiation therapy because the beam can be stopped at a target location, which would allow them to spare my heart and lung from being radiated.
Challenges of Proton Therapy
The first challenge in receiving proton therapy is access. There are only 39 regional proton therapy centers in the United States. Thankfully, I live just under four hours from the Mayo Clinic in Rochester, Minnesota. While not exactly close, it is within reasonable driving range for me. The second challenge is cost. Proton radiation therapy is much more expensive than photon radiation, thus many insurance plans do not cover it. I met with a radiation oncologist at Mayo virtually for a consultation first, he agreed with the local radiation oncologist that I was an excellent candidate for proton therapy. Next, I drove up to Mayo for a simulation appointment. During simulation you are fitted with positioning devices and have x-ray and CT scans taken. The scans are used to determine the radiation treatment plan. Once the plan is developed it is submitted to insurance. I work for a very large company and we have excellent insurance. Up to this point they had approved all my claims, including 8 injections that cost $6,000 each and 12 infusions that cost $10,000 each. Unfortunately, they denied the proton claim. Despite the RO at Mayo warning me that this would likely happen, this was the most stressful and scary part of my cancer journey. My RO at Mayo appealed the denial and held a peer-to-peer call with a staff physician at my insurance company. After two very nerve-wracking weeks I received the news that my insurance had approved proton therapy. The final challenge was being away from my family for three weeks. Being away from my family for such a long period of time was very hard on both me and my husband and kids, but I’m so thankful that my insurance that allowed me to receive the best possible treatment and provided a place to stay while away from home.
Simulation
At my simulation appointment I was placed on a CIVCO Radiotherapy couch top with a CIVCO RT breast board. The technicians explained that I would need to be in the treatment position for up to 40 minutes, so it was very important to let them know if something felt uncomfortable. They worked with me to find the most comfortable position using various head/neck and arm positioning devices. I ended up with a custom molded head support and Vac-Lok cushion for my arms. The techs also fitted me with a thermoplastic mask to keep my head still during treatment. The worst part of simulation were the tattoos. They used UV sensitive ink and tattooed me in three places. Once I was positioned, I had x-rays and a CT scan taken to document my position and assist with treatment planning.
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Team "Straight Outta Chemo"
at the October 2022 Especially for You
Annual Race in Cedar Rapids, Iowa
Miranda and her girls
Miranda and Kelly
Race participants
Miranda finishing the race
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Proton Treatment Schedule
Another benefit of proton therapy is the reduced number of treatments required. If I had received photon therapy, I would have needed 30 treatments, with proton I only needed 15. My treatments were Monday through Friday for three weeks.
From my home to Mayo Clinic, it is 215 miles. I made the trip 3 times and will need to come back again in 6 months for my follow up appointment.
A Day of Treatment
When I get to the clinic I check in at the front desk and get my parking pass, then wait for my name to be called over the PA system. Once I'm called, I go back to the dressing area, grab a gown, and go to a dressing room. I was surprised to find the dressing area was co-ed! In the dressing room I undress from the waist up and put on my gown. We are instructed to wait in the dressing room until a tech comes to retrieve you. A tech will come and call your name, then you lock your dressing room and take the key bracelet with you. The tech will then take you back to your gantry. If you have music on your phone, they will take your phone and hook it up to the speakers in the treatment room so you can listen during treatment. Once you enter the gantry the techs will ask you to confirm your name and DOB, then they will take your gown and help you onto the couch top. They will ask if you would like a warm blanket, take it! If you get cold easily like me, it will make it much more comfortable and easier to stay still during treatment. They will then place your mask and other positioning devices and verify your tattoos are properly aligned. They will then take an x-ray to ensure you are in the correct position. At Mayo, there are 4 gantry's that all share one beam. Once you're set up you will be told your position in line for the beam. Hopefully you're next, or you may have to wait a little while. Once the beam is free you the techs will announce "we have the beam" and you know you need to be very still! I had two fields treated at each appointment. Each field took about 5 minutes. After the first field is completed, the couch top was turned to position me for the second field. During this time, you're placed back in the waiting line for the beam. The longest I had to wait was about 15 minutes. This doesn't sound like much, but when your arms are above your head and have fallen asleep, 15 minutes feels like a very long time! Once the second field is complete the gantry will move, and you can finally put your arms down.
Overcoming the Obstacles
I am so thankful for good insurance and financial stability. I know this journey could have been so much harder without those two things. I can't imagine having to go through this and worrying about the financial aspects of treatment. I’m also thankful that my employer was understanding and flexible during treatment. Having cancer is a full-time job. There are so many appointments and days when you are just too tired or sick to work. I've joined a few breast cancer groups on Facebook and have read stories of people who have been fired and lost their benefits due to their inability to work. No one fighting cancer should have to deal with that added stress. I think the hardest part for me has been toll that treatment has taken on me mentally. A cancer diagnosis is scary. It's scary for you, for your spouse, and especially for your kids. Even now that treatment has ended, the fear is still there. Will it come back? Has treatment shortened my lifespan? Are my kids OK? I've talked with many survivors who say that they still struggle with "scan-ziety" many years after treatment. I'm also scared for my two daughters. Will they have to go through this someday too? Being diagnosed with cancer is traumatic and I think it will take a long time to work through all the emotions that go along with it. I've also noticed a change in my cognitive abilities since chemo. Most of the time I feel like I'm in fog. My short-term memory, which wasn't good to begin with, is horrible now. I have trouble focusing on tasks and even have difficulties with my speech like trouble finding my words or saying the wrong word. They call it chemo brain, and it's very real!
Advice and Additional Thoughts
My advice would be to lean on the people who are there to support you and don't be afraid to ask for help if you need it. Our church organized a meal train and that was a big help. If you don't have anyone volunteer to set one up, I recommend asking a friend to do it. Cooking is not fun when you are nauseous, so it was a blessing to have meals for my family when I wasn't able to prepare them. People want to help, let them pick up a grocery order or organize activities for your children. If you qualify for FMLA get that set up ASAP so you can have time off for appointments and treatments. You don't have to spend a fortune on a wig, I bought a wig for $300, and I hated it. I found one Amazon for $20, and I got so many compliments on my "hair"! People were always surprised when I told them it was a wig. Try to have fun with it, now is the perfect time to try out a new style or color! I would suggest taking a spouse or close friend to your appointments, you will get a lot of information and it can be overwhelming. Having another set of ears hear the same information, or take notes, can be helpful. Try to stay positive! It's easy to feel sorry for yourself, but remember you are not the only person going through this. Keeping a positive outlook will help your mood and make it easier to power through the hard days. There are a lot of great chancer support groups on Facebook, I suggest joining a few and seeing if any are a good fit. I learned a lot of great tips and information about therapies, etc. in the groups I am in, but try not to compare your cancer with anyone else's, every case and every person is different.
To learn more about how you can get involved with Especially for You, visit https://www.especiallyforyourace.org/efy/
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