Navigating Cancer Care: By the Numbers

  Since December 14, 2023, I have had the following appointments/procedures:

• Primary Care Provider - 3
• Breast Surgeon
• Doctor Visits - 4
• Surgeries - 2
• Plastic Surgeon
• Doctor Visits - 9 
• Surgeries - 1
• Medical Oncology
• Doctor Visits - 12
• Chemotherapy - 10
• Other Treatment Visits - 4
• Radiation Oncology
• Doctor Visits - 9
• Radiation Treatments - 30
• Ultrasounds - 1
• Ultrasound Guided Procedures - 2
• MRIs - 7
• DEXA Scans - 1
• Radiation Procedures - 2
• Eye Doctor - 1
• Dermatologist - 2
• Dentist - 1
• Licensed Clinical Social Worker - 1
• ER visits due to excellent coordination of care and support of specialists as needed - 0

Let's do some statistics:

While I did have multiple appointments each day, there have been 291 days since December 14, 2023 which puts me spending approximately 35% of my days at appointments. Just for perspective.

Meme time for some laughs. Enjoy!

Manuka Honey Benefit - Potential Inhibition of Breast Cancer Cells

 In addition to sweetening tea, manuka honey has long been valued for its health benefits. Due to its antibacterial and anti-inflammatory properties, the substance may help heal wounds, reduce acne, improve oral health, and more. And now, a new study out of UCLA has pinpointed another exciting application: treating a common type of breast cancer. 

 Researchers conducted preclinical experiments and found that oral administration of manuka honey significantly reduced tumor growth by 84% in mice with estrogen receptor-positive breast cancer cells, or ER-positive breast cancer cell, without affecting healthy cells. ER-positive breast cancer means the tumors grow in response to the hormone estrogen, and it comprises around 80% of all hormone receptor-positive cases. 

 “The findings provide hope for development of a natural, less toxic alternative to traditional chemotherapy,” said first author Dr. Diana Marquez-Garban. “Although more research is necessary to fully understand the benefits of natural compounds in cancer therapy, this study establishes a strong foundation for further exploration in this area.”

Read more at: https://nicenews.com/health-and-wellness/manuka-honey-could-fight-breast-cancer/

 

How Honey (and other natural things) Help to Heal Wounds

We still use medical grade honey for wound care. No need to create new things when salt (Mesalt) and honey (Medihoney) do the trick.

 Geek out here: https://www.degruyter.com/document/doi/10.1515/biol-2021-0084/html

Last radiation and 1/4 done with adjuvant chemo tomorrow!

  That made me smile.

Brain MRI

  

 Due to the abrupt change from 20/20 vision to double vision, blurred vision, and seeing starbursts around lights around 2 weeks ago, we did the due diligence of getting a brain MRI to ensure there was no metastatic or other findings of my brain. All is good news. No evidence of metastatic disease.

 I know I just posted something similar but this has words too.

 

DEXA (dual-energy X-ray absorptiometry) Scan

  I had to get a DEXA scan on the 25th so we can decide on my next step for ongoing hormone suppression therapy treatment. DEXA stands for dual-energy X-ray absorptiometry. I didn't know that! I also envisioned you stand with your hands over your head like at the airport with TSA, and that is not at all what you do. So much for what I know.

 

This is the machine they actually use.

Good representations of imaging differences

 They scanned for my lower four vertebrae (back bones) both on my back and my side, my pelvis and femurs (hip area) on my back, and non-dominant arm forearm. These scans help to create scores which determine your bone density. My results say I am starting out as "normal bone density" and I will be discussing my treatment options at my October 7th medical oncology appointment.

A New Member of My Care Team - Eye Doctor

  When I think back to my prior knowledge of cancer, I realize how naive I was to the entire experience. I guess you could call me fortunate, not having to navigate that world as a child, but experiencing it now, I realize how poorly we generally understand this world.

 I knew cancer treatment involves a medical oncologist and sometimes a radiation oncologist, but that was the extent of the care team I would expect to be involved in providing cancer care. Eight months later into my currently expected 15 month treatment course, I've had to add a few more medical professionals to my care team list. 

Here they are, listed in order of when they joined my team:

Primary Care Physician - Identified my cancer; Coordinated team for diagnosis and treatment; Manages side effects of all my medications, unfortunately, often with new medications, with their own new side effects

Interventional Radiologist - Read mammogram and ultrasound and performed ultrasound guided biopsy and clip placement; Later placed radioactive seed for identification of tumor for lumpectomy

Medical Oncologist - Manages chemotherapy and other targeted medications

Dentist - Manages dry mouth from medications and any implications to gum and dental health

Radiologic Technologist - Provided radioactive tracer for sentinel node biopsy prior to procedure

Surgeon (and entire OR team) - Managed removal of tumor with lumpectomy

Plastic Surgeon (and entire OR team) - Managed oncoplastic reduction reconstruction post lumpectomy

Radiation Oncologist - Manages radiotherapy treatment and associated skin reactions

Dermatologist (Skin Doctor) - Managing my skin related drug reaction

Ophthalmologist (Eye Doctor) - Managing my severe dry eyes and new astigmatism

Licensed Clinical Social Worker - Managing navigation of life changes and impacts of medication side effects

Your care team could also include:

Wound Care Professional - Depending on wound care needs post surgery and radiotherapy - I took care of this myself

Chaplain/Religious Support Member - Managing navigation of life changes

Physical, Occupational, or Speech Therapists - Depending on mobility, activities of daily living, range of motion, strength, endurance, or speaking/swallowing issues during treatment

 All that to say that I now need glasses, likely due to a combination of age (I am almost 40!) and chemotherapy related eye changes. I'll try to take an updated picture when I get them since I haven't shown my massive hair growth yet! I'll kill two birds with one stone.

 For my dry eyes, my optometrist recommends hot compresses and using these eye drops:

While Cancer Takes A Lot, It Gives A Lot Too

 

It has been a while since I tortured my sister, so here's a late 1980's country song that is not only apropos, but also checks the box to grind my sister a bit. You're welcome sis!

Updates on Rash and Radiation

 My Rash

 As with all my posts, I hope to help others who either have to navigate or help someone navigate this world. I had previously written about a rash I was experiencing after my KADCYLA infusions. I was able to get in with a dermatology specialist from the University of Miami who comes up to cover at a local clinic. He determined it was a rare but confirmed Grade 1 drug reaction. A Grade 1 reaction does not require stopping the treatment as the treatment is deemed more beneficial than the reaction in a risk vs. benefit assessment.

 

 My rash type is considered acneiform. From cancer.gov, an acneiform rash is "a skin condition that causes small, raised, acne-like bumps to form, usually on the face, scalp, chest, and upper back. The bumps on the affected skin are usually red and filled with pus and may crust over. They may also become painful, tender, and itchy. Sometimes, the affected skin becomes infected. Acneiform rash may be caused by an infection or by treatment with certain drugs, including some anticancer drugs, such as epidermal growth factor receptor (EGFR) inhibitors. Also called acneiform dermatitis and acneiform eruption."

 

 In my situation, the rash is on both arms, both sides of my trunk, on my buttocks and inner thighs. Because it was not on my face, scalp, chest and upper back (which I am thankful for), it did not present as a normal EGFR inhibitor rash. This was part of the reason for my delayed diagnosis, as it did not present in the "typical manner". 

 

 The solution in my case, is either topical based products to just put a "band aid" on it, or dexamethasone or prednisone, to prevent it from advancing once it appears. So far, it has put a pause on my rash that has appeared like clockwork.

 I share this so you speak up if you're seeing any changes with your skin or feeling anything that doesn't feel right. While we have to endure many things as we get our treatments, we don't have to assume it's all part of the normal process and can be self advocates to ensure we're getting the right treatment for what we are experiencing!

 

My Radiation

 I only have 4 more radiation doses to go! My last treatment is on Monday, September 30th. The fatigue I've felt can continue for 2-4 weeks (or longer) so I plan to continue to work part time until I recover from this unrelenting fatigue. I'm fortunate that I have been doing well in the skin department, with mostly just redness. No blisters, yet, as it can continue to progress after treatments are done. I'm currently in the Grade 1-2 range.

 Wish me luck in my radiation recovery and help me celebrate overcoming this next milestone in my treatment!

Cycle 4 is a go!

 

FDA's dense breast notification requirement explained

 

 Per Becker's Hospital Review, "effective Sept. 10, healthcare facilities providing breast imaging services will be required to notify patients of their breast density in mammography reports. 

Radiologists are required to send two mammography reports, one to physicians and a more simplified 'lay' report to patients. A patient's breast density has almost always been included in the report radiologists send to physicians. Whether breast density has been included in the patient report has varied by state."

 For patients, this means their report will include:

• The patient's name, and the name, address, and telephone number of the facility performing the exam.
• Depending on whether the patient's breast density is dense or not dense, as indicated by the mammography report, the patient lay summary must include one of the following notification statements:
• Not dense: "Breast tissue can be either dense or not dense. Dense tissue makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer. Your breast tissue is not dense. Talk to your healthcare provider about breast density, risks for breast cancer, and your individual situation." 
• Dense: "Breast tissue can be either dense or not dense. Dense tissue makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer. Your breast tissue is dense. In some people with dense tissue, other imaging tests in addition to a mammogram may help find cancers. Talk to your healthcare provider about breast density, risks for breast cancer, and your individual situation."

 While full mammography reports include:

• Name and location of the facility performing the exam, (at a minimum the city, State, ZIP code, and telephone number).
• An overall final assessment of findings, classified into one of the following categories: 
• Negative
• Benign
• Probably Benign
• Suspicious
• Highly Suggestive of Malignancy
• Known-Biopsy-Proven Malignancy
• Post-Procedure Mammogram for Marker Placement. 
• In cases where no final assessment category can be assigned due to incomplete work-up, the report should indicate:  
• Incomplete: Need additional imaging evaluation
• Incomplete: Need prior mammograms for comparison.
• An overall assessment of breast density, classified in one of the following categories: 
• "The breasts are almost entirely fatty." 
• "There are scattered areas of fibroglandular density." 
• "The breasts are heterogeneously dense, which may obscure small masses." 
• "The breasts are extremely dense, which lowers the sensitivity of mammography."

 Why should patients know their breast density?

Dense breast mammograms are significantly whiter than non-dense breast mammograms. Cancer, too, typically appears white on a mammogram, meaning a radiologist is often "looking for something white in a field of white," Dr. Vincoff said. 

"But having dense breasts doesn't just make your mammogram more difficult to read, it also increases your risk for developing breast cancer," she said. 

Having dense breasts means a patient may be a good candidate for additional cancer screening. 

"It's really important information for a patient [to have] for both reasons," Dr. Vincoff said. The FDA regulation requires patients in every state to be notified not only of their breast density, but also told what that density means. Patients will learn that their density means their mammogram might be limited and they might have an increased risk for developing breast cancer.

This is an interesting website I found about breast density: https://densebreast-info.org/

Radiation Realities

  As I continue to go through treatment, and reflect on my thoughts and perceptions prior to having cancer, I remember thinking that chemotherapy is the hardest treatment to go through, but for me, I'm finding radiation to be quite challenging. I feel this may be due to my largest frustration coming from a place of physical fatigue rather than all the physical changes that occur with chemotherapy. My medical oncologist was spot on when he said it will be the physical fatigue that will get the best of me. It helps to have doctors that know you treating you. Obviously, he has me pegged.

 It also has to do with the type of chemotherapy I had (as compared to others) and that I did so well with it. Everyone's treatment and effects are different, so this is specific to my story. I also need to consider that I am doing radiation in conjunction with KADCYLA, but I am hoping that once radiation is complete, I will have more energy overall. I just want to share with others that radiation is no walk in the park.

 At my halfway point, I am having minor skin reactions and tightening of all my tissues, especially my scar tissue. Doing arm range of motion daily has been important to not have any tightness that would restrict my use of my arms. I also use Aquaphor like nobodies business.

Estrogen and Serotonin

  I'm writing this post in hopes that it can help others be self-advocates and become aware of the role of estrogen on serotonin and other neurotransmitters essential for overall health. It is always important to speak to your care team if things aren't feeling right or you just feel "off". 

 This information is geared towards those who are being treated for hormone receptor-positive (HR+ aka estrogen and progesterone positive) breast cancer with HR suppressive chemotherapies. As always, please speak with your doctor about any symptoms you're having and your specific medical condition.

 

 More simply put, as chemotherapies for this specific type of cancer suppress estrogen causing chemically induced menopause, serotonin is affected as well. It was fascinating to learn about serotonin's role in balancing physical, emotional, and cognitive health. 

 There are many options to address various symptoms of decreased serotonin. In HR+ breast cancers, hormone replacement therapies should not be used, so other alternatives need to be considered. For example, a non-hormonal option for hot flashes and night sweats is estroven. Fascinating to learn, the main ingredient is:

 There are also other medications your care team could prescribe for hot flashes and night sweats that have alternate actions from their primary use. 

 I've already posted about the benefits of exercise. Other beneficial ways to combat the change could be support groups and employee assistance programs, depending on what works best for you.

 I found some other helpful links as I was researching these topics:

American Cancer Society - Find Support Programs and Services in Your Area

CancerCare - Support Groups Live and Online

Better Days to Come

 

 I’m working on my capacity cup - to find the right balance of what I can do at this time while continuing radiation and chemo and returning to work.