Correction: one year NED

 Just as I started this blog, I’m a realist but an optimist. I mistakenly stated that I was two years of no evidence of disease on my last post, when in fact, I’m only one. The clock for no evidence of disease begins on the date of your first clear scan after completing all necessary treatments. The other thing getting in my way is that I’m just not that great at math. Sorry for the confusion. One year down, nine to go.

Year 2 of No Evidence of Disease (NED)

  It is time to celebrate! Year 2 out of 10 without any evidence of any cancer coming back! 

  A quick review of BI-RADS is helpful before reading on. Due to my breast density, both a screening mammogram and breast MRI were warranted at my 2 year imaging. 

 My mammogram was found to be a BI-RADS category 2 which is benign with essentially 0% likelihood of cancer.

 My breast MRI was found to be a BI-RADS category 3 which is probably benign finding with short interval follow-up suggested with >0% but <2% likelihood of cancer. Repeat MRI suggested in 6 months. They're monitoring an area in the posterior aspect of the upper left breast (same side and close to the location as my original cancer) but does note it could be fat necrosis. When I told my sister about this, she said "I never thought of fat as being alive" which was a valid statement. Fat necrosis is a harmless, noncancerous condition where fatty tissue is damaged, dies, and forms a firm lump or oily cyst. Due to the size of the lumpectomy, my surgeon, who called me less than 24 hours from when my results were available, stated she's suspecting it is more of a fat necrosis situation and will monitor at the 6 month mark.

 In addition to my screening imaging, I also had a full spine MRI due to the areas found on my PET scan (revisit this information here). Long story short, all areas are stable and continue to appear as hemangiomas which are not an issue unless symptomatic, which they are not. I do have degenerative changes and one disc bulge in my neck, my midback, and my lower back. Hello 40s. 

 I think this is all the imaging I will have for now. In July, I continue on with my SURMOUNT trial and will have CTs of my chest, abdomen, and pelvis and a PET scan. If clear, I will have my 2nd bone marrow aspirate late July.

 

 With year 2 behind me, I'm focusing on transitioning back to future thinking, rather than just taking things one day at a time. It's harder than you may think.

Lost for Words Paper Co. - Now on Etsy!

  Throughout my experience with cancer, I have found myself making things that try to help those who otherwise need support while navigating cancer. I have chosen to open an Etsy shop to try to reach more people who may benefit from my creations. 

 Please visit lostforwordspaperco.etsy.com to see what I have available so far and comment below if you think there are certain parts of my blog or other information that you think I should make an informational sheet or worksheet to add.

 I plan to develop more in the world of cancer, Parkinson's Disease, caregiving, traumatic brain injury, and of course, patient experience.

 Feels weird to put myself out there in the world of creativity but there's no time like the present.

 

When Ignorance is Bliss

  I've tried REAL hard to not spiral and worry about cancer recurrence. But even trying REAL hard doesn't mean it doesn't happen. 

Goal: Continue to live your life in the now and not worry about cancer recurrence.

Reality: You have a new ache, oop, it must be cancer. You have a spot on your arm, you rub it real hard and it doesn't come off, oop, it must be melanoma. Meanwhile, with a little soap, it comes right off. I usually laugh at myself once I rule out that this thing is not a recurrence or secondary cancer, but then it happens again.

 Most recently, this took place after my most recent labs taken at my oncology appointment. My oncologist says that my calcium level is a little elevated but it isn't anything to worry about right now. They said we'll check it again in 3 months. Me being me, I asked what a high calcium means. Almost nonchalant, they said "bone metastases". So I spin a little. Nothing to worry about? Easy for you to say. They then also mentioned hyperparathyroidism as a differential diagnosis and said that would be easy to treat with a referral to the same surgeon who did my breast cancer tumor removal since she specializes in thyroid as well. "Easy to treat" aka another surgery. Maybe I should define the word easy next time I see them.

 Now add on my review of the rest of my labs and I see that I have a slightly elevated total protein and MCH (Mean Corpuscular Hemoglobin (MCH) is a blood test measuring the average amount of hemoglobin in each red blood cell). I just took a continuing education course that stated that people don't "google" things because they don't believe their clinical team, they "google" because they're scared. Well...

Per Google AI:

The #1 potential cause of this lab triad is:

 "Primary Hyperparathyroidism: This is the most common cause of high blood calcium (hypercalcemia), accounting for ~90% of cases. It involves a benign tumor on one of the parathyroid glands, leading to high calcium, sometimes accompanied by altered protein and MCH levels." Primary treatment is surgery to remove the usually benign but occasionally, cancerous tumor. "Primary hyperparathyroidism occurs in approximately 2.88% to 7% of breast cancer patients, compared to roughly 0.1%–0.3% in the general population."

The #2 potential cause of this lab triad:

 "Multiple Myeloma: A type of blood cancer that often presents with a combination of high calcium, increased total protein (often due to high albumin or immunoglobulins), and can cause changes in red blood cells." I won't even go into the treatment for this. This would be considered a secondary cancer, with a "Standardized Incidence Ratio (SIR) of 1.5 indicates that the number of observed cases in a specific group is 50% higher than what would be expected based on the rates in a reference or "normal" population."

 Seems legit. But how do we score this? Well the Fear of Cancer Recurrence Inventory - Short Form, of course! Thanks, Canada!

 I won't be revealing my score so no one tries to hold me on a Title 47. Here is the scoring in case this pertains to you (of note, it can be for those in cancer treatment, cancer survivorship, or caregivers/family of persons with cancer):

From the Canadian Family Physician article:

"Low to moderate severity (0 to 15 on the FCRI-SF).

Because FCR is a common experience for cancer survivors, normalizing this experience for patients in a supportive and empathetic way is recommended. This could include discussion around the frequency with which survivors report FCR and common triggers of FCR (eg, hearing of someone being diagnosed with cancer, aches and pains, reminders of cancer experience in general). Uncertainty is inherent to FCR; therefore, providing information to cancer survivors and their caregivers on signs and symptoms of cancer recurrence, frequency of surveillance tests, and what to expect in cancer-related follow-up care, etc., can be helpful.

If maladaptive coping strategies are present, introducing more adaptive coping approaches such as engaging in enjoyed activities, meditation, yoga, physical activity, journaling about FCR, and talking to supportive friends and family about their fears can help decrease the severity of FCR among patients.

High and clinically significant severity (16 to 21 and ≥ 22 on the FCRI-SF, respectively).

For cancer survivors experiencing high (score of 16 to 21 on the FCRI-SF) and clinically significant (score of ≥ 22 on the FCRI-SF) levels of FCR, referral to allied health care professionals working in psychosocial cancer care might be appropriate. Psychotherapists can provide cognitive-behavioural approaches to address clinical FCR. Such interventions are empirically supported in group, online, and individual formats. Additional online resources on FCR (available at CFPlus) can be shared with cancer survivors who present with high FCR."

 Ok, back to real life. It continues to blow my mind how differently each person who encounters cancer reacts. I've observed that ignorance really can be bliss. 

For High FCR, CBT is known to help. See my previous posts for more information: 

Power of Positivity and The Cognitive Behavior Model

Positive In = Positive Out

Cognitive Distortions and Breathing

Thoughts > Emotions > Behavior 

Being present in the moment is a large part of CBT so I'll leave you with this:

Exemestane and Letrozole

  Apologies for the significant delay since my last post on my ongoing treatment. My last post related to ongoing treatment outlined how tamoxifen was not as kind of a medicine as it had started out to be. Due to this, I was switched to one of three aromatase inhibitors - exemestane. Exemestane is different from Anastrozole or Letrozole (the other two) in that it is a steroidal aromatase inhibitor. This time, it only took about 1 month and it was determined that the side effects of severe anxiety and insomnia would not be side effects I can live with for the next 9 years. Once again, I was taken off the medication and had to wait 1 month to trial another. Enter Letrozole.

 I chose Letrozole because a family member had to use this in the past for 5 years and reported very minimal to no side effects. I figured it may be kind to me as well and so far, just over one month in, it's the lesser of all evils I've tried to date. I feel less fatigue and joint pain than when I was on Tamoxifen and no insomnia or anxiety like I felt with Exemestane. I'm experiencing minimal joint pain that I'm managing with naproxen. I'm also having some brain fog with word finding difficulties and short term forgetfulness, but I just do my best and move on. I'm hoping I've found the best one for me!

Type I and III Collagen and DTCs

  I received an email today talking about the benefits of type I and III collagen for skin and bone health and to help with joint pain and stiffness. That immediately sounded promising as I am at high risk of bone loss due to my postmenopausal state and aromatase inhibitor need to keep my estrogen levels as low as possible to prevent a recurrence of my cancer. I also love the idea of less joint pain and stiffness, which is also a side effect of my aromatase inhibitor, but also likely due to being in my 5th decade of life (surprised me too... apparently ages 0-9 is the 1st decade and you can go from there). So I read and then my brain starts cranking.

 I learn that the way collagen helps with bone health is due to its affect on bone marrow. Knowing that I am in a clinical trial that looks at my bone marrow, I do some research and find:

 From Google AI:

 Disseminated tumor cells (DTCs) interact with types I and III collagen in the extracellular matrix (ECM) to regulate survival, dormancy, and metastasis. Type III collagen often promotes dormancy in DTCs, while type I collagen induces stiffness that aids tumor progression, migration, and survival. 

Role of Collagen III (Dormancy and Stability)

• Dormancy Marker: Type III collagen is crucial for establishing and sustaining the dormancy of disseminated tumor cells, preventing them from forming active metastases.
• Signaling Mechanism: Binding of DDR1 on tumor cells to type III collagen triggers STAT1 signaling, maintaining a dormant state.
• ECM Niche: High type III collagen, often in a "wavy," non-aligned structure, is associated with indolent (inactive) tumor niches. 

Role of Collagen I (Progression and Migration)

• Stiffness & Migration: Type I collagen is the primary fibrillar collagen in the tumor stroma; its increased density and aligned, stiffened fibers promote cancer cell invasion and migration.
• Survival Signal: DTCs interact with type I collagen through integrins, activating signaling pathways like FAK (focal adhesion kinase) to promote survival and resist anoikis. 
• Anoikis is a specialized form of programmed cell death (apoptosis) triggered when anchorage-dependent cells, such as epithelial or endothelial cells, detach from the surrounding extracellular matrix (ECM) or neighbor cells. It acts as a critical mechanism to maintain tissue homeostasis and prevent misplaced cells from surviving and proliferating in inappropriate locations.

Implications for Metastasis

• Switching States: A reduction in type III collagen, accompanied by increased type I collagen and fiber alignment, can drive dormant DTCs to transition into aggressive, proliferative metastatic cells.

• Targeting Strategy: Targeting these ECM interactions, particularly maintaining high type III collagen or targeting type I-mediated signaling, is a potential strategy to keep disseminated tumor cells in a dormant state, say studies from PubMed Central (PMC) (.gov) and PubMed Central (PMC) (.gov).

 What may seem like a good suggestion for health could be life changing for someone with high risk of recurrence of cancer. While I do not have any DTCs present at this time (understanding the 40% chance of false negative for my first set of results), if I were to develop them, taking this supplement could lead to more aggressive, proliferative metastatic cells. Let's review that again...  aggressive, proliferative metastatic cells. No thank you! One could decide to take only Type III collagen which keeps DTCs in their dormant state, but the collagens available for use also include Type I. 

 All this to say that research, even of the most minor things, like collagen and turmeric, is essential to understand the role of common supplements in the ongoing treatments when living with cancer.

 Dissemination of CTCs and tumor dormancy. Breast cancer cells are shed in the proximal circulation where they are referred to as CTCs. Single CTCs or clusters of CTCs can disseminate and home to distant organs sites, where they are referred to as DTCs. DTCs are found predominantly in the bone marrow, but also lung, liver and the brain. While cellular dormancy typically refers to single DTCs or clusters of DTCs, dormancy of micrometastases also occurs, and these are characterized by a transient cell cycle arrest or an equilibrium of proliferation/apoptosis, respectively. DTCs can reawaken, eventually giving rise to macrometastatic lesions. 

SURMOUNT Clinical Trail Results from 1st Bone Marrow Aspirate

  I have received the results from my first bone marrow aspirate (BMA) and it shows that I have no disseminated tumor cells (DTCs) in my bone marrow at this time. This is great news! They said they received a good sample so that was encouraging as well. 

 At this time, due to no DTCs found in my first (out of a potential 7) bone marrow aspirates, I will proceed on the SURMOUNT Trial and will not transfer to the ABBY Trial. The next bone marrow aspirate will happen around July and will include some imaging to ensure there is no metastatic disease. I will be traveling back to Philadelphia to continue these trials.

 Of note, the first bone marrow aspirate can have a 40% false negative result so there is always a chance it is a false negative, but only serial bone marrow aspirates will determine that. By the fourth bone marrow aspirate, false negatives decrease to only 5%. In other words, it gets more accurate the more bone marrow aspirates that you get. Having no DTCs in your bone marrow also doesn't mean you have a 0% chance of having recurrence, but it is usually a good indicator.

 A bit surprising, I do still have tenderness where my bone marrow aspirate was taken. Naproxen has helped more than ibuprofen and my miracle cure, Arnicare Gel, helps as well. It does not appear to have any pockets of blood or fluid, so my guess is just the bone healing which can be delayed still due to being less than one year out of chemotherapy.

 This is great news and a great start to my 41st year of life!

Day 4 - SURMOUNT Clinical Trial - Heading Home

  Today is a much better day! While still tender, I don't have any of the pain I had prior. I was able to take ibuprofen along with Tylenol yesterday, and made sure to ice when we got home. All is moving in the right direction.

 I am expected to get my results on Friday, February 27th. It will be a nice birthday gift, either way. It will help to give direction to ongoing treatment options for me, and again, will help future people diagnosed with breast cancer either have an option to know their recurrence rate and treatment or will allow researchers to know to go another direction with their research.

Per Google AI:

"Participating in a clinical trial can contribute to a sense of purpose and happiness by providing a meaningful way to give back to others and society as a whole. Key aspects of this positive feeling include: 

Contributing to Medical Science: Your participation helps researchers advance medical knowledge, potentially leading to new treatments, cures, and preventative measures for diseases that affect millions of people.

Helping Future Generations: The information gleaned from clinical trials may directly benefit future patients and generations who face similar health challenges.

Altruism and Purpose: Engaging in a selfless act can enhance a participant's sense of self-worth, provide a strong sense of purpose, and increase overall well-being.

Community and Connection: Trials often involve interaction with medical professionals and sometimes other participants, fostering a sense of community and shared purpose in combating illness.

Personal Satisfaction: The knowledge that one's involvement is making a tangible difference in the world often leads to increased personal satisfaction and happiness. 

Overall, the altruistic nature of clinical trial participation can be a powerful source of happiness and fulfillment."

 I fly out from PHL at 7 pm tonight and am hoping to catch an earlier flight in SEA to get home sooner. Otherwise, I'll have a 12 hour layover in SEA until my scheduled flight tomorrow morning! 

Day 3 - SURMOUNT Clinical Trial - Bone Pain and Dinosaurs

   There was more pain after the procedure than I had anticipated. Not pain that wasn't manageable, but pain nonetheless. I'm surprised I hadn't looked into this before but the AI summary of why bone pain exists with bone marrow aspirates sure was an eye opener:

 “Bone marrow aspiration causes pain primarily because the procedure must pass through the periosteum, a thin, fibrous membrane covering the outer surface of the bone that is packed with nerve endings. While the hard bone itself has few nerves, the periosteum, surrounding tissues, and the marrow cavity itself contain sensory fibers that react to the pressure, drilling, and suction involved in the procedure. 

Here is why it hurts:

The Periosteum (Most Painful Part): The outer covering of the bone (periosteum) is rich in sensory nerve endings. Piercing this layer with the needle causes sharp, acute pain.

Intramedullary Pressure: Bone marrow is enclosed in a rigid, non-compliant casing. Inserting a needle and removing fluid (aspiration) changes the pressure inside the bone, which stimulates nerve endings within the marrow cavity.

The Suction Feeling: The aspiration (sucking out) of liquid bone marrow creates a temporary, deep, pulling, or aching sensation.

Nerve Sensitivity in Marrow: Although the bone is hard, the bone marrow receives sensory and sympathetic innervation, meaning nerves do exist within the marrow cavity, particularly around blood vessels. 

Why Local Anesthetic Doesn't Stop All Pain:

While doctors use local anesthetics (like lidocaine) to numb the skin and the outer surface of the bone, it is difficult to completely numb the deeper bone marrow cavity, leading to the intense, brief pain reported when the syringe is actually used.”

 So this is absolutely fascinating to me. I don't want to say this with 100% certainty, but I am pretty sure this was not part of my physical therapy education and I find that absolutely mind boggling. 

 This new(ish?) knowledge to me will absolutely help me in caring for my patients who have sustained traumatic or elective bone related injuries/interventions. 

 We got to explore around the area and went to Edelman Fossil Park & Museum in New Jersey and the Mutter Museum in Philly. No photos allowed at Mutter but here are a few from Edelman Fossil Park:

 Turns out New Jersey was under water during the time of the meteorite impact and a said tsunami washed land dinosaurs from Pennsylvania out to sea where the perfect conditions were present for fossils. This has allowed them to find both marine and land dinosaurs in their archaeological site on the grounds.

 Checking out from our rental tomorrow and headed to Reading Terminal Market before returning to the airport for my long trip home.

Day 2 - SURMOUNT Clinical Trial - Procedure Day

This is how I feel right now in the waiting room!

I’m waiting for labs before my procedure. Quite the well oiled machine so far. Risks are always high in an oncology center so masks mandatory!

Labs didn't happen before my procedure so I'll have to get them after. Time for my bone marrow aspirate!

So, that was interesting. I'm not sure what I expected a bone marrow aspirate to feel like but wow! Pressure and weird pain-like feelings throughout the procedure. 

I was positioned on my belly (supine) so she could access the back of my hip bone. She used a bony landmark on my hip bone known as the posterior superior iliac spine (PSIS) to find a flat spot so the needle would be less likely to slip. 

This is a view from back to front - PSIS is the 2nd down on the left

She lidocained me up so I wouldn't feel the insertion of the needle, cut a small slit in my skin, and then went to town boring into my hip bone.

The boring needle slipped off the bone and went into my body further than intended, but she was able to reposition and get it into my bone as planned.

 She then took bone marrow out via a syringe which I could feel as pressure/pain moving from inside out. She then took out the boring needle and covered it with gauze and a tegaderm (clear tape). 

 The whole procedure took no more than 20 minutes. 

 I'm back at our VRBO and had some great Vietnamese food from Pho and Cafe Saigon. Highly recommend if you get to University City.

 Time to rest and visit with my Mom! Thanks for everyone who has cheered me on with this new adventure!