Outcomes4Me - The 2023 State of Patient Empowerment Report

https://outcomes4me.com/wp-content/uploads/2023/12/Outcomes4Me_2023_State-of-Patient-Empowerment-Report.pdf

ECHO, ECho, echo...

  More on echocardiograms (ECHOs) with help from my ECHO tech friend. A huge thank you to her for these references. 

 But first, a bit about the heart. The heart is a muscle that pumps blood through the body. With each beat, the heart pumps blood through the body’s cardiovascular system. The cardiovascular system is made up of the heart and a system of blood vessels (the circulatory system) that help circulate blood. The blood provides oxygen and nutrients to all the organs and tissues in the body. It also delivers carbon dioxide to the lungs and the lungs then exhale to remove carbon dioxide from the body. At the same time, blood picks up waste products that are filtered out of the body by the kidneys. 

• The heart is located between the lungs and pumps blood throughout the body's cardiovascular system. 
• The heart has four chambers. 
• The upper two chambers are the right atrium and left atrium. These are called "collecting chambers" because they collect the blood as it returns to the heart.
• The lower two chambers are the right ventricle and left ventricle. These are called "pumping chambers" because they pump the blood out of the heart to where it needs to go.
• The right and left sides of the heart are divided by a wall called the septum. 
• You can feel your pulse each time the ventricle pumps by feeling your wrist or side of your neck.

 I don't yet know how my ECHO results compare to my January ECHO, but here is some information to better educate yourself on why ECHOs are used to assess cancer therapeutics-related cardiac dysfunction. Cancer-therapeutics can be cardiotoxic (can cause damage to the heart) and require monitoring to assess for need for pause or change in plan of care.

 For me, it is my Herceptin and therefore, having an ECHO every 3 months will continue for my full year of treatment, and then beyond due to radiation therapy. As always, anything posted here is related to my type of cancer and situation. The full articles review more information for others going through other types of cancer therapeutics. Feel free to ask your doctor about your specific medications and if monitoring is needed for your or your loved one's care.

 Two amazing articles that go very in depth on cancer therapeutics-related cardiac dysfunction:

• Management of Cancer-Therapy-Induced Left Ventricular Dysfunction: Can the Guidelines Help?

• Practical guidance for echocardiography for cancer therapeutics-related cardiac dysfunction

This algorithm (B) is specifically for patients who have never received anthracyclines. 

You can find algorithm A in the link if you have received anthracyclines (such as Daunorubicin, Doxorubicin, Epirubicin, Idarubicin, Mitoxantrone, Valrubicin, etc.).

 Strain is another part of an ECHO that is reviewed when undergoing monitoring for cardiotoxicity. This website is very neat to see strain imaging and I will not even pretend to educate on all of it, but in case you're a visual person, this could help to visualize the difference in how the heart moves when there is pathological strain on the heart.

TL;DR

• I don't have an update on how my ECHO from yesterday compares to my ECHO from January, but hoping for good things. 
• A bit about the heart
• The heart is located between the lungs and pumps blood throughout the body's cardiovascular system. 
• The heart has four chambers. 
• The upper two chambers are the right atrium and left atrium. These are called "collecting chambers" because they collect the blood as it returns to the heart.
• The lower two chambers are the right ventricle and left ventricle. These are called "pumping chambers" because they pump the blood out of the heart to where it needs to go.
• My Herceptin requires monitoring of my heart via echocardiograms (ECHOs) every 3 months per guidelines.
• There are specific comparisons of measurements of function and size of my heart that will determine maintaining my current schedule of infusions, pausing treatment, or changing my treatment course. This is all dependent on how my heart handles my specific targeted therapy.
• Radiotherapy (radiation therapy) will also require monitoring of my heart for years after my treatment is complete (hopefully for good).
• Strain is a neat concept and can be seen visually on this website.

Sheer Amount of Time

 

 I came across this amazing timeline that shows the various steps one must take to navigate medical care after detecting early stage breast cancer. While all cancers, and their various stages, come with their own timeline, the sheer amount of time it takes from start to finish is absolutely astonishing. 

 Take me for example. For my timeline there on the right, I've estimated about 203 days of total initial treatment (not counting ongoing infusions of Herceptin and Perjeta for one year and oral Tamoxifen for 5-10 years), give or take a few weeks. Time from detection/diagnosis would actually be 249 days. Do you know what can happen in 249 days? Well, I thought I'd have a long list for you but all that comes up is early pregnancy and baby milestones, so... I'll spare you those details.

 Truthfully, it feels like a lifetime. Especially having to be away from work and all the people that fill my cup. While I'm usually the one bringing the energy to others, the rallying around me and meeting me where I am is amazing. I leave visits with others more energized than when I arrived and that is fulfilling.

 What can you do today to fill your cup? 

Younger but more prepared

  

 All data from this post is courtesy of the American Cancer Society (ACS), including the image above and below.

 

 The ACS report showed younger adults to be the only age group with an increase in overall cancer incidence between 1995 and 2020 - the rate has risen by 1% to 2% each year during that time period.

 For anyone who wants to really geek out, check out this JAMA article on Breast Cancer Incidence Among US Women Aged 20 to 49 Years by Race, Stage, and Hormone Receptor Status. 

 So how do we get ahead of screenings, when the ages of recommended screenings are often in the 40's and 50's? Little known to many, if you have a family member with cancer, it is advised to start screening 10 or even 15 years before your family member's diagnosis:

 From a Yale Medicine article:

• But talking to a doctor about a family history of colorectal cancer could prompt a screening referral at a younger age. “If there is a family history of either cancer or polyps, we usually start colonoscopy screening 10 to 15 years before the family member who had it was diagnosed,” says Dr. Kortmansky. “So, if a first-degree relative was diagnosed with cancer at 45, you would start screening at 30.”
• Likewise, women who are at average risk for breast cancer may start mammography screening at age 40, according to U.S. Preventive Services Task Force (USPTF) recommendations updated in 2023. But women with a family history of breast cancer are generally advised to start when they are 10 years younger than the first-degree relative (a mother and/or sister) was at their time of diagnosis.

 But how do you get someone to listen to you to get your screening? 

• Know your family history
• Bring the facts
• Bring a supportive friend or family member
• Be relentless about your own health
• Ask questions

 And if they still say no? My favorite:

• Ask them what the risks vs. benefits are and reasoning is for not doing a screening, and listen for a valid response. If there isn't one, decide whether to push back or see another provider that is more aligned with your healthcare goals.

 Here are two perspectives to consider on how to align goals of care with your provider when going into a medical visit:

The Provider Perspective

https://www.acpdecisions.org/goals-of-care-conversations-a-best-practice-step-by-step-approach/

The Patient Perspective

https://www.prevention.com/health/a41974607/how-to-get-your-doctor-to-listen/

TL;DR

• Overall cancer incidence rate has risen by 1% to 2% each year between 1995-2020.
• It is important to get screenings when suggested, but if you have a family history, speak with your doctor about starting screenings 10-15 years before their diagnosis (e.g. mother with colon cancer at age 50, you would get your colonoscopy at 35-40).
• Be your own self-advocate to receive these screenings when you need them. See the links above on some suggestions.

Medals for all of us

 

 Earned them all today. Now I can rest.

The lows get lower but I am tougher

 While the lows got lower this time, I’m rebounding now and really appreciating good health. I’ve, fortunately, never been a sickly person, but still did not take it for granted. I always channeled my inner patient (thank you empathy) to where I knew it could flip in a moment, and it did. I think that has helped me throughout this time, knowing that this isn’t something that has happened to me, it is something that could happen to any of us at any given moment. 

 I read this poem and it hit me. Not because I’ve truly been in what I consider pain yet, but the connection with all other humans that have to rally and still go on, knowing that life doesn’t stop or change, just because you have to. 

  I’m almost through week 1 of my 4th cycle and I feel the trajectory is moving in a positive direction. I have a little more energy every day and continue to manage my nausea with my nausea decision tree and meds. I’m getting myself prepared for the possibility of having lower lows with the cumulative effect of my final two cycles of chemo. I’ll be prepared to rest and recover and let the poison do its magic. 

 

PERMA+

  I'm pretty impressed with my short and long term disability insurance company, Prudential. They offer supportive services through an app/website called NeuroFlow which has added some new tools to my toolkit and also highlighted the CBT techniques I've highlighted in my blog.

 Recently, it introduced me to the PERMA model, which is a framework for happiness and wellbeing. I like the exercises and descriptions provided by Positive Psychology via this link, as it adds a + to the end, expanding four other important factors for happiness and wellbeing.

 I'm sure you can see where my past posts are interwoven within this theory. It's not new information, but it is information put in another way that might resonate with you in a different way than before.

 Here's a quick way to assess your PERMA+ status to allow you to create an action plan, if so inclined.

So tired.

 

Hot Flashes and Acceptance

  New symptom: Hot Flashes! They kicked in last night, not even 24 hours after cycle 4. So stoked am I.

I'll go to my normal coping mechanism, humor:

Steve's new use for me

 Now for the fact vs. feeling approach - this one is fact:

 Per breastcancer.org, one type of menopause that occurs is medical menopause:

Medical menopause, or medically-induced menopause, happens when the ovaries:

• are surgically removed — called surgical menopaus
• are shut down with medicine, such as Lupron (chemical name: leuprolide) or Zoladex (chemical name: goserelin) — called medical menopause
• stop working because of chemotherapy, hormonal therapy, or another type of treatment for a medical condition (my situation)

With any form of medical menopause, the ovaries stop functioning and your estrogen and progesterone levels drop quickly and dramatically (which we want since my cancer is estrogen and progesterone positive!) Medically-induced menopause often causes more intense and troubling side effects, especially if you’re younger. Yay!

How menopause can happen with breast cancer treatments

Certain breast cancer treatments can cause induced menopause. Treatment-induced menopause is usually more sudden and the symptoms are more severe than when menopause happens naturally.

Chemotherapy-induced menopause 

 

Chemotherapy destroys cells that divide quickly, like cancer cells. The ovaries also contain rapidly dividing cells, which also are affected by chemotherapy. This is why chemotherapy can bring on menopause.

Certain chemotherapy drugs are more likely to cause menopause than others. Chemotherapy regimens that use Cytoxan (chemical name: cyclophosphamide) commonly cause menopause, though it’s possible for any chemotherapy regimen to do so.

Targeted therapies, such as Herceptin (chemical name: trastuzumab) - again, me - , are often given along with chemotherapy. These medicines target specific features of cancer cells, such as HER2 proteins. It’s important to discuss all the medicines recommended for you with your doctor. Many targeted therapies have a low risk of harming the ovaries.

How quickly the ovaries recover after chemotherapy depends on how old you are and the types and doses of medicines you receive. Chemotherapy-induced menopause may be permanent. The older you are, the higher the risk that menopause will be permanent. It’s important to talk to your doctor about steps you may be able to take to preserve your fertility before you start treatment.

Hormonal therapy-induced menopause

Hormonal therapy medicines, also called anti-estrogen therapy, endocrine therapy, or hormone therapy, treat hormone receptor-positive breast cancer by lowering estrogen levels in your body or by blocking the effects of estrogen on breast cancer cells. Hormonal therapy medicines don’t actually cause menopause, but, because of how they work, you’re likely to have some menopausal symptoms while you’re taking them. 

Tamoxifen and other selective estrogen-receptor modulators (SERMs) - will be me - can cause menopausal symptoms such as hot flashes, night sweats, and mood swings. Tamoxifen may be recommended for both pre-menopausal and post-menopausal women. Tamoxifen works by blocking estrogen from stimulating certain cells to grow and multiply.

I knew this was coming but didn't know when. Here it is, and I accept it.

Cycle 4 is a go!

 It might sound weird that I look forward to chemo days, but it is really because that means that is one less chemo I have to do. It truly makes me ecstatic to check another chemo day box off my to-do list. 

 I love Emily McDowell cards. I've added links to her stuff before, but here is another one that should send you to all cards to be real with a loved one with cancer.

 I love that my body is responding well to the chemo and targeted therapy, and that it is recovering between each dose to allow me to continue on course, on time. Half way done with chemo as of today!