Surgery complications and monitoring progress
MINOR SURGERY COMPLICATIONS
Picking up from the last blog post… I had lumpectomy surgery on July 7, 2023 and a couple of complications came as a result of surgery. Once again, I developed a hematoma. This time, it was a biggie - much larger than the first one I had at the fibroid biopsy site. Dr. Abbott said it probably developed because the tumor was close to a blood vessel on the chest wall.
Then, fluid started to build up in my breast. Edema (swelling) is common after surgery, especially if a lymph node is removed. Once lymph nodes are removed, they do not grow back. Among its many functions, the lymphatic system filters out waste and abnormal cells and keeps a healthy balance of fluids in the body. If a damaged system disrupts the flow, it can get backed up and result in swelling – even extreme swelling called lymphedema.
So, I returned to MUSC (two hours away) for an aspiration procedure, which helped. But the very next day, the swelling started to return. I'm like, seriously? I took an evening walk in the woods and got mad at the enemy, who I believed was behind it. I don't know why this was the thing that triggered my anger because there had certainly been other disappointments and inconveniences in recent months, and this one wasn't even life-threatening. But I was tired of feeling harassed.
The Word says to resist the enemy, and he must flee. So, I raised my voice and told the enemy to get away, he and his spirit of infirmity. I said my God is bigger, and He is healing me. I turned to the Lord and stated scriptures from Jeremiah 17:14 and Exodus 15:26: "Heal me, and I will be healed. You are my Healer. Not the medical community. You." By the morning, the swelling was down!
God’s Word continues to be the foundation I stand on.
I learned long ago there is no formula for answered prayers or hearing from God. It surely doesn't happen immediately like that every time for me. However, I have learned by experience that God loves a passionate prayer. He loves it when we desperately cry out to Him and acknowledge that He alone can help us.
Days later, I developed "cording," which is also called Axillary Web Syndrome (AWS). This rope-like tissue is the lymph vessels connected to the removed lymph node. When lymph nodes are removed, fluid no longer flows through the attached lymph lines. They can harden, tighten, and restrict movement of the arm. This “cording” happened from having ONE lymph node removed – which puts me in the minority. AWS may affect 20% of people who have had a few nodes removed and up to 72% of those who have had many removed.
My surgeon suggested lymphatic physical therapy to address the "cording" and the swelling. I got a referral to Lexington Medical Center to do the PT locally. At the first appointment, the physical therapist told me I needed to wear a compression bra to reduce and discourage swelling. So I headed to Becky's Place at Lexington Medical Center to get fitted.
At the next appointment, the physical therapist asked me how many compression bras I got. I said, "Just one. That will should be enough to get me through this period of time." She looked at me with her head cocked. I knew that look. I reacted, "You've got to be kidding me! I've got to wear this thing indefinitely? It's incredibly uncomfortable and every bit unattractive. In fact, I have to wear a turtleneck just to cover the whole thing up!" We chuckled together and settled on wearing that one at night and one from Amazon that allows me to wear some regular clothing during the day😊.
The physical therapist has taught me some things to avoid future lymphedema, which can onset quickly or even years later. With just one lymph node removed, my chances of lymphedema are lower than if I had a full axillary node dissection, but it is something I want to avoid so I'll do them.
Some of the tips are (there are many others):
Do daily self-lymphatic massage to keep fluid moving up the arm and away from the armpit.
Wear a compression sleeve on the associated arm when flying because the cabin pressure can trigger lymphedema.
Avoid cuts (for example, shave the armpit with an electric shaver), sunburns, and insect bites, which can trigger an inflammatory reaction because the lymph lines cannot filter out the waste or infection.
Have blood drawn or blood pressure taken on the opposite arm.
LYMPHEDEMA
Just letting you know - these are NOT my arms!
This picture shows the type of lymphedema I want to AVOID.
RADIATION DECLINED
Back at MUSC for a post-surgical appointment, Dr. Abbott suggested radiation, but I declined it just as I did the chemo. I know radiation has gotten more targeted than in past years. However, it still damages the anti-oncogenes of healthy cells and those already injured from surgery, making them more susceptible to reoccurrence. Additionally, heart damage from breast radiation is common, and I did not want to add heart issues to the mix. I still felt my best option was to rebuild my immune system by addressing the root causes that allowed my body to host cancer.
After evaluating the risks and rewards, all of these decisions should be a personal choice. As I mentioned in my first blog post on 10/16/23, having peace about your decisions is critical.
MEASURING PROGRESS
I knew I needed some way to measure progress to determine if I had signs of cancer going forward. PET scans, which measure cancer's glucose activity, CT scans, and mammograms are often used. All of these scans subject the body to a good bit of radiation (hundreds of x-ray images are taken to put together to create a 3-D image for a CT scan for example). MRIs don't have the radiation but do not always provide precise imaging.
I had read about various Circulating Tumor Cell (CTC) Tests, also called Tumor Marker Tests. For instance, the CA 27-29 is often used to measure circulating breast cancer cell levels in the blood.
Before my surgery, I contacted two new friends for help in this area. A new friend in Georgia had a similar journey two years ago. My childhood friend in Georgia, introduced me electronically to her, and we started corresponding. I texted her to ask what CTC tests she had done to monitor progress. She mentioned the CA 27-29 and the Signatera test. I looked up the Signatera test, and read it was new on the market (three years) and is state of the art. It takes the DNA from the actual tumor you have removed from your body and tests for that same DNA in your blood. You cannot get any more specific in testing for cancer cells than that!
Meanwhile, I randomly heard from another new friend. My neighbor, who arranged the prayer meeting in April, connected me with a woman in Florida just a week after my diagnosis. She was diagnosed about the same time with the same diagnosis - Triple Negative Breast Cancer – which is considered to be more aggressive than HER2, progesterone, or estrogen-positive breast cancers.
A couple of days after I heard from the friend in Georgia, this new friend in Florida emailed me about her progress after having double mastectomy surgery. Her recovery was smooth, and her pathology reports of the sentinel nodes removed were benign!
Then she told me this interesting story…
Her oncologist met with her after the clear pathology reports came in and said, "When do you want to start chemotherapy?"
My friend replied, "I’ve had both breasts removed, and the lymph nodes were clear. Why should I do chemotherapy?”
The doctor responded, “You may have Circulating Tumor Cells.”
My friend replied, “Isn’t there a test to determine if I have Circulating Tumor Cells (CTC)?”
The doctor said, “Yes, the CA 27-29 and the Signatera test.”
So, the tests were ordered, and she came back with no Circulating Tumor Cell activity!
She would have gone through chemotherapy needlessly, my friend concluded, had she not asked about the CTC tests.
This was more evidence to me that the “standard of care” for cancer needs to be more personalized.
I decided I wanted the Signatera test, so I asked Care Oncology if they could order it. We had signed on to work with Care Oncology out of Virginia (virtually) at the end of April. All appointments would be done remotely, so it would not require travel. I would be part of a clinical trial, using a “cocktail” of diet, supplements, and re-purposed drugs to block the three metabolic pathways and starve the cancer. Yet, by the end of June, two months had passed since we signed on, and we still did not have an appointment with the doctor. We were getting frustrated with the wait.
Care Oncology said my oncologist would need to order it, but the problem was I did not have a traditional oncologist because I was not getting chemo. So, I asked my surgeon if she could order the Signatera test, and she said MUSC was not doing that test for breast cancer patients. I wasn’t sure where to go next.
I shared this with my new friend in Georgia, and she said her doctor in Atlanta treated patients out of town. So, I looked up Dr. Rhett Bergeron with Real Health Medical and liked what I saw. He is an M.D. who practices functional medicine to get at the root issues and has many cancer patients. He uses the metabolic approach that attracted us to Care Oncology but also does much more. It seemed like a great match, albeit in Atlanta and four hours away.
While we believed Care Oncology is doing great work and their clinical trial could be a game-changer in the cancer field, we needed more than they could offer at this time. So, we changed from Care Oncology to Real Health Medical.
The next phase of “treatment” was about to begin. More on that in the next post!
But first, spoiler alert…
I did get the Signatera test ordered by Dr. Bergeron in Atlanta, and in October 2023, Signatera/Natera requested the tumor tissue sample from MUSC. Then they sent a traveling phlebotomist to draw my blood, and we waited for the results.
On Friday, December 8, 2023, I was at work when I received the report. When I opened up the email, I cried tears of joy! It was NEGATIVE - no circulating tumor DNA molecules were detected. Praise God! Being five months post-surgery, I consider this great news because surgery disturbs the tumor, which can release tumor cells to circulate and find new places to plant.
Ongoing blood draws will help monitor my status. IF any positive result occurs in the future, it would be an early indicator of potential reoccurrence. So, I will be diligent in doing what I need to do to prevent relapse, continue to welcome prayers on my behalf, and depend on the Lord as my Healer.
Thank you again to all who have been praying for me. God is hearing your prayers, and I’m very grateful for you and humbled by people praying for me!
HIDDEN TREASURES
Gaining knowledge has been such a gift to me. Learning so much during these months and making informed decisions that are personalized for me has given me confidence and peace. So many people who have have gone through a similar journey or have watched a loved one suffer through sickness or disease have taken the time to write books and offer free information to share what they have learned. I’m grateful for them.
I hope what I have learned will be helpful to other people in the way I’ve benefited from others’ research.
Proverbs 15:22
Without consultation, plans are frustrated, but with many counselors, they succeed.