The Mastectomy: August 2024

Post-Surgery

Because MD Anderson is in Houston, upon discharge my husband and I stayed in a hotel until I was released to drive back to Houston.  We have been back and forth to Houston every week since the surgery.  this disruption of our routine has been hard for all of us.  I think we are all ready for things to get back to normal.  My family and friends have been wonderful in helping us out with meals, childcare, and companionship.  I feel profoundly blessed to have such loving people surrounding me.  

I am now a little more than a month post-operation.  My team at MD Anderson completed the mastectomy in August.  My healing this time has been iffy.  While I'm not spitting stitches, I have been on a battery of antibiotics due to an infection.  I still have a drain, which is longer than expected.  Something is not healing properly inside, so I will need to have additional surgery if the drain output doesn't change quickly.  I can't lie - I am reluctant to have another surgery.  I want to feel and be normal!  

My sarcoma specialist, Dr. H, reviewed the pathology report and shared the following with me:

• There is a huge difference between borderline and malignant phyllodes tumors.  Each phyllodes tumor removed from my body has been borderline.
• None of the patients who have been treated at MD Anderson for my condition and who have had the same treatment (mastectomy) have had a recurrence.
• The margins in each of my previous surgeries were not wide enough.  In fact, in at least two of the surgeries, there were no margins at all.  That means the tumor cells were not completely removed until the full mastectomy.
• My prognosis is good.  Once the plastic surgeon is done reconstructing my breast, the sarcoma team will take over my care.  I'll be seen every 4-6 months for several years for monitoring, and eventually, the frequency will drop to once a year.  

The Third Surgery: March of 2024

Back Again?

In late February 2024, I felt a lump in my breast again.  I couldn't imagine it was the same tumor, but I couldn't be sure.  I went for imaging and back to Dr. M, who took a biopsy in her office.  She called me later to tell me that I had another phyllodes tumor.  My husband and I sat in her office and listened as she detailed the action plan:  remove the tumor and work with Dr. U to make the area look nice.  By this point, I had done more research on phyllodes tumors.  I came armed with the knowledge that Duke University Hospital and MD Anderson Cancer Center recommended mastectomy for recurrent phyllodes tumors.  By that point, I understood how dangerous a malignant phyllodes tumor could be - the prognosis is poor. Malignant phyllodes tumors do not typically respond to radiation or chemotherapy.  I had mentally prepared to learn about mastectomy, but Dr. M told me that such a radical procedure wasn't needed.  She also said I wasn't a good candidate for a post-mastectomy reconstruction because of my weight.  I listened to and trusted her.  

I had a lumpectomy in early March of 2024.  When the pathology report came back, Dr. M told me that the tumor was malignant.  She wanted to refer me to get started on radiation right away to prevent a recurrence.  I was to see a radiation oncologist first, and I would see a medical oncologist when one became available.  This plan felt out of order and wrong to me.  Shouldn't I see the medical oncologist to make an action plan?  Shouldn't the radiology and medical oncologists work together for the best outcome?  Plus, I knew that malignant phyllodes tumors do not typically respond to radiation or chemotherapy.  I reached out to the recommended providers and tried to wait patiently.  Fear was a constant companion.

Changing Providers

In the meantime, I researched where to go for the best treatment for phyllodes tumors.  I could consult with either or both MD Anderson or Duke on my case.  Alternatively, I could switch my care to one of these medical groups.  MD Anderson is only a few hours away from my home, while Duke is across the country.  I decided to switch to MD Anderson, as I know they handle cancer daily and have protocols in place for phyllodes tumors, unlike the recommended local provider.  I reached out to MD Anderson one morning in late March.  They called me back the same day, and I was scheduled to meet with a medical oncologist early the following week.  I met Dr. BZ, who reviewed my case, including the images and pathology reports.  This is when I learned what I had not been told by Dr. W or Dr. M:  the phyllodes tumors previously removed were borderline, and I should have had treatment accordingly.  Treatment with recurrent phyllodes tumors involved full mastectomy.  I needed to get scheduled for a mastectomy ASAP.

During this time frame, I had all kinds of bloodwork done, plus a range of X-rays, an MRI, and an MRI biopsy, as ordered by Dr. BN, my surgical oncologist.  After reviewing all the data, in addition to all the previous reports, Dr. BN explained that another tumor was already growing back and that the pathology reports showed the margins were not large enough from the incision line and the tumor. The only way to be sure that the phyllodes tumor wouldn't return would be a complete mastectomy of the right breast.  My care was coordinated with a plastic surgeon at MD Anderson, who would reconstruct a breast capsule and rebuild a breast.  The good news?  MD Anderson reclassified the most recent tumor removal to borderline.  I was relieved.  

While none of the doctors at MD Anderson made negative comments or disparaged the work of the doctors who had previously cared for me, I could tell by their reactions as I told (and retold) my story that I should have had a different experience with the treatment.

How Did I Feel About All This?

Angry.  I felt so damned angry.  I was angry at myself for not pushing Dr. M harder when I knew the research I had read differed so differently from her recommendation.  I was angry that I didn't know that the previous tumors had been borderline.  I was angry I hadn't gone to MD Anderson sooner.  I was just angry, angry, angry.  And scared.

The Second Surgery: Spring of 2023

Stop Ignoring the Elephant in Your Breast

In the Spring of 2023, I stopped telling myself that the hard tissue was typical.  Whatever I felt under my skin was getting bigger.  Growing.  I had to stop pretending everything was ok.  This time I scheduled an appointment for imaging on my own and didn't wait for a referral from Dr. B.  A few days following the imaging and another core biopsy, Dr. B called and told me I had another phyllodes tumor.  I needed to go see Dr. W again.  I was surprised when Dr. W explained he was only a few days from retiring.  He introduced me to Dr. M, the surgeon assuming all of Dr. W's breast surgery patients.  

Dr. M  had been a surgeon for 20+ years and specialized in breast surgery, with a particular interest in helping women with breast cancer.  When I explained that I felt like the tumor had been present since the previous surgery, Dr. M agreed that it was likely the tumor had regrown from cells that had not been completely removed.  However, since the phyllodes tumor had grown significantly, she felt strongly that I would require significant removal of breast tissue.  The partial mastectomy, which was also referred to as a lumpectomy, was going to completely change the shape of my breast.  So much tissue was going to be removed that reconstruction of the breast would be necessary.  Dr. M said one perk that I could look forward to was a breast reduction and lift.  Surgery would be needed on both breasts so that I would not have balance issues. Dr. M would partner with a plastic surgeon, Dr. U, to reconstruct the right breast and reduce/lift the left breast so that my chest would be mostly symmetrical.  Dr. M assured me that this significant surgery would address the phyllodes tumor.  She was confident and had removed a phyllodes tumor from a patient the previous year; she had also consulted with a radiation specialist who supported the treatment plan.  Dr. U helped me understand the impact the surgery would have on my body.  In addition to smaller breasts, I would likely have less sensation in affected areas, and the recovery would be hard because I was overweight.  

Problem:  Phyllodes Tumor 
Solution:  Partial Mastectomy/Lumpectomy
Bonus:  Reduction

Anyone who knows me understands that I am someone who worries.  Like a lot.  More than most.  At the risk of coming across unhelpful information, I spent a lot of time researching.   Most of what I researched during this time was about recovering from a large surgical procedure, what to expect following a reduction, and the outcomes of tumor removal following surgery.  I found a wonderful and supportive group on Facebook where women posted everything from "must-have lists" to questions to before and after images so that others could learn what was needed before, during, and after surgery.  Only one woman in the group had phyllodes, and she had only had to have surgery once.  I bought the essentials and felt comforted by the online group who were in different states on their journeys.  Most of them appeared either desperate for a reduction and waiting for insurance approval or were celebrating their improved lives post-surgery.  Although I wasn't eager for the surgery, I could see that it was possible my physical comfort would be greatly improved by having the surgery. 

March 2023 - October 2023

The recovery from the surgery was arduous.  Dr. M examined me and told me that I was healing nicely.  Dr. M felt strongly that the tumor was removed in its entirety - I could focus on healing.  I had one drain for my left breast, and I had both a drain and wound vacuum for my right breast.  Measuring and monitoring the output of the drains really bothered me.  I was afraid I would pull out the drains, that the drains were producing too much or too little, and/or that the color of the drains' output was wrong.  Everything I experienced was typical, but my rational mind was squashed by an anxiety monster.  Every time I felt an electrical buzz in my chest, a sharp zing from one side of a breast to the other, or noticed I couldn't feel anything at all, I worried.

I spent months working with Dr. U, who oversaw my recovery.  I learned I was allergic to the stitches used in the procedure.  I "spat" stitches for 6 months following the surgery.  That means my body was rejecting the sutures that had not dissolved.  My skin hurt, and I was limited in activity and movement. My anxiety was off the charts.  I was miserable.  I kept telling myself I was healing and that things would get better.  Thank goodness I was now working a desk job as opposed to working in a school.  I don't know how I would have been able to be on my feet all day. By October, I finally felt like myself again.

Shopping List for Recovery 

The following items are the items that helped ease my recovery.  I would recommend them as loving gifts to oneself or to a friend or family member who will be having a full or partial mastectomy or reduction:

• nonstick medical pads to use with gauze dressings
• breast pillow
• soft tops with interior pockets for holding drains
• drain lanyard for shower
• clips to hold drain tubes to keep tubes from dangling
• seatbelt breast pillow
• soft, squishy pillows that are easily shaped into different configurations
• large wedge pillow so you can recline in different areas
• recliner 

The First Surgery: Fall of 2021

A Discovery 

Before October 2021, I had never heard of a phyllodes tumor.  However, in late August or early September of that year, I found a lump in my right breast.  My primary care physician, Dr. B, sent me to get imaging. I jumped at the first available appointment, even though it meant traveling to a small suburban area on the other side of the Austin metro area on a Saturday.  After the imaging, the radiologist spoke with me and explained she couldn't identify the lump without an additional procedure.  A few days later, I had a core biopsy and waited nervously for the results.  Dr. B called a day or two later to inform me that I had something called a phyllodes tumor.  He referred me to a surgeon, Dr. W, who would handle the removal of the tumor in a procedure called a lumpectomy.

What the Heck is a Phyllodes Tumor?

Dr. W explained he would remove the tumor on a Friday, and I could return to work the following Monday with minimal restrictions.  I was eager to return to my regular life, which was extremely busy during that time.   I was a wife, mother, assistant principal, and doctoral student.  I felt pulled in a million different directions and didn't think I had time to have surgery and recover.  I felt guilt for not investigating the lump sooner, for putting my husband in the position of having to be a caregiver, and for knowing that I would be less able to do all the duties involved with my job until I had recovered.  I understood very little about phyllodes tumors in the Fall of 2021, beyond these simple facts, which had been explained by my doctors and by what I found in some simple online searches:

• Phyllodes tumors are rare.  
• Most phyllodes tumors are benign.  
• Surgical removal is the treatment for phyllodes tumors.
• Physicians recommend removal because phyllodes tumors grow quickly.

After the Procedure

The procedure in October 2021 was quick, and I went home the same day.  Dr. W told my husband that the tumor was shaped like a barbell.  I don't really remember speaking to Dr. W about the tumor until a later follow-up appointment.  He felt I was recovering nicely, and he said the pathology showed that the tumor was not cancerous.  As I recovered and became increasingly aware of the space where the tumor had been, I felt like part of the tumor remained.  A hard spot was right next to the softer place where the tumor had been. Sometimes I could feel it, but not always.  I convinced myself that the harder tissue I sometimes felt was simply what my breast tissue was going to feel like following the procedure.