This program was co-hosted by GRYT Health and ASCP Patient Champions
We were joined by a panel of speakers representing the American Society for Clinical Pathology (ASCP) Patient Champion Program on June 23, 2021, to talk about the importance of laboratory and pathology reports and the team of scientists behind the scenes. Sitting on our panel was: Deedee O’Brien, executive director at Ironstone Farm; Carly Flumer, director of medical engagement at MMG; and Dr. Lee Hilborne, a senior medical director at Quest Diagnostics. Deedee and Carly are ASCP Patient Champions and Dr. Lee is the former president of ASCP. With our rockstar panel, we set out to understand the importance of lab and pathology reports beyond the numbers.
As always, this program is meant to help educate and not replace any medical advice. If you have any medical questions, please talk to your healthcare team.
The ASCP is the world’s largest professional membership organization for pathologists and laboratory professionals. Their mission is to provide excellence in education, certification, and advocacy on behalf of patients, pathologists and laboratory professionals.
This article is a text summary of the program that took place in June 2021. Below you can find the hour-long program, if you would rather watch.
Our program started with each panelist sharing their story and their personal connection with cancer.
Carly was diagnosed with stage I papillary thyroid in January 2017, followed by her first surgery five months later. Through her pathology reports, Carly and her doctors noticed her cancer metastasized. The metastasized cancer required a second surgery and a round of radioactive iodine. In early 2021, Carly found out her cancer did not respond to the radioactive iodine and she was diagnosed with cancer for a second time. She joins us two months after her third surgery.
Deedee’s connection with cancer started through the lens of a primary caregiver when her mother was diagnosed with chronic lymphocytic leukemia (CLL). Shortly before her mother passed away, Deedee was diagnosed with renal cell carcinoma in 2007. She underwent a partial nephrectomy, only to be diagnosed 10 months later with a nonmalignant brain tumor. Deedee underwent a brain surgery for the tumor. Years after her renal cell carcinoma and brain tumor diagnoses, she was diagnosed with CLL; the same diagnosis her mother had received and, shortly after, her brother. In addition to navigating her own cancer journey, Deedee was the primary caregiver for her partner as he experienced cognitive and physical deterioration.
Dr. Lee Hilborne
Dr. Lee is a pathologist by training and spends his time running labs behind the scenes. As a pathologist, Dr. Lee is a physician member of the laboratory. Dr. Hilborne is passionate about patient safety, quality and making sure that patients get the right diagnostic tests at the right time and right cost. He serves on the ASCP Patient Champions Steering Committee to work towards the mission of having non-laboratory individuals learn more about the contributions of laboratory medicine to save patient lives.
You can read more about the panelists on our webpage here.
The program continued with our Program Director, Lauren Lastauskas, asking questions for the panelists to further explore how pathology and lab reports impact the cancer experience.
Lauren: Carly and Deedee, can you tell us more about how you became involved with the ASCP Patient Champions Program?
Due to my diagnoses, getting involved with patient advocacy was important to me and I came across the ASCP. My pathology reports are such an important part of my treatment plans, and whether I relapse. I knew I had a lot to say. I really enjoy sharing the importance of the lab, especially for my type of cancer, all the biomarkers that come along with it, and the different types of lab tests that are needed to determine treatment plans.
In 2007, I became the public member of the Board of Governors for the non-profit Board of Certification for the ASCP. The Board of Certification does the credentialing for the laboratory scientists. During that time I learned the value of the lab and the quality of the people behind the lab, their dedication to the laboratory scientists, and the important role they play in all of our lives. I had the unique opportunity to learn, from the members, about every disease and issue we have in healthcare. I wanted to tell the story and share with others how important this is.
Then I got sick and I became a person who really needed the lab. I served on that board for nine years. Just before leaving the board I was diagnosed with CLL and my life now depends on the lab.
The Patient Champions Program was being launched as I was leaving the board, so it was new. Myself and another patient became the first patient champions in this program. Part of this program included creating a video of my story, including meeting my pathologist. They brought me into my pathologist’s lab and it was an emotional moment for me. This pathologist was a big part of my life, and unbeknownst to me, she had been watching my cells change for the past five years. My pathologist had been doing this for 12 years and I was the first patient she met. By the end, we were both in tears. It was life changing for me. I now recommend to anyone who will listen, you need to speak with your pathologist. So much goes into this on the laboratory scientists’ side. So much knowledge, care and dedication there is.
Lauren: How can someone get in touch with a pathologist?
There are several routes and it depends on where your lab is based. If you are in a healthcare system, then you can go directly to the lab itself. If you go to a community physician, they may send their specimens to a reference lab, like Quest Diagnostics or Labcorp, etc.
The best way to find out is by looking at your lab report. Your lab report will say where the test was done and who is the laboratory director, it is required reporting by law.
The best route is to go through your requesting provider. They can direct you to who you should reach out to. If you do not get a positive result, there is nothing stopping you from directly reaching out to a pathologist in the general community. While a pathologist will be hesitant to give you direct medical advice, because we only know one part of the greater picture, however we are happy to share general information.
Every specimen is a patient. It is very important that every test is done right, fast and carefully. While mistakes do happen, the laboratory process is so clear with regulation, practices and oversight, that most mistakes don’t happen in the lab. In terms of results, if a result is not clear it is absolutely worth asking for a second opinion.
When I was diagnosed with renal cell carcinoma and I didn’t know where to go, I couldn’t get answers. What I ended up doing was getting five different opinions from five different doctors. Surprisingly, two of those opinions were different from the other three.
Additionally, when I was diagnosed with CLL I had a hard time wrapping my head around it. It wasn’t until I saw the blood slides and then I understood what my issues were. It made all the difference to see the cells and being able to ask questions.
Both my diagnoses came from a pathology report from a fine needle aspiration biopsy of my neck. At the time, I accepted the diagnosis as it was and I just wanted it out immediately.
I often go through a lot of scanxiety and lab-xiety whenever it is time to get scans and labs done. It is something that non-cancer folks do not understand, and they often dismiss the concerns. It was not until my second diagnosis that I felt justified in my anxiety. This is why my concerns and fears are warranted anytime I need to get follow up labs and scans done.
Lauren: Do you have any advice on how to get a second opinion?
The main thing is to look for a referral. Community pathologists often have a network of specialists to reach out to and many academic labs have specialized pathologists, such as GYN pathologist, urogenital pathologist, and neuropathologist. Depending on where your specimen was drawn from, you could ask for a pathology specialist to give a second opinion on your specimen.
If you go and ask for a second opinion, you will probably be asked to bring your pathology with you to get a second opinion. Most of the time we agree, but every once in a while we don’t.
When I did the video and met my pathologist, she took me through the steps each vial goes through before it is determined and I was impressed with the process. It is not just one pathologist who looked at my slides, it was a team of people who were looking and giving their thoughts. It was really impressive.
Lauren: Is your experience, was there ever a time where the pathology report indicated a cancer but the second opinion specialist in pathology determines otherwise?
Yes, and that is why it can be important to get a second opinion. Especially if the diagnosis is very subtle. In fact my friend’s father had a biopsy which suggested he had cancer, however it was not very clear. I reached out to a specialist for a second opinion and the specialist was able to look at the subtleties and explained why he believed it was not cancer. Several years later and my dad’s friend is doing well, so the second opinion seems to be the correct diagnosis.
Lauren: Do you have any advice on how someone can get more involved in understanding their pathology or lab reports?
I have used a couple different resources to understand my reports better. ThyCa has a wealth of information on what your lab results can mean for Thyroid cancer. American Cancer Society has been helpful as well.
Your doctor is also a resource to help you understand your lab results more clearly. The lab results are crucial to understanding your diagnosis and treatment plan. Ultimately it’s important so we know if we are doing ok and if we can be doing anything different.
I agree with Carly. One of the things that cancer patients suffer with is not having confidence in ourselves and if we are doing the right thing. Being able to know exactly what is going on in your body happens in the lab, and if you can gain confidence in reading your reports then you can know you are making the right decisions.
My brother has CLL and began having terrible chest pain. After testing, he was diagnosed with metastatic lung cancer. I encouraged him to get a second opinion and a specialist diagnosed him with prostate cancer that had metastasized to his lung and bones. Fortunately, prostate cancer is very treatable. He’s on medication, his tumors shrank, and he is feeling well now.
Lauren: Are there key things we should look at in our labs?
It depends on what the test is. If you get a result you are not expecting, it’s best to repeat the test. Additionally, one abnormal result does not make something true. For example, one elevated sugar result does not make someone a diabetic. It’s important to look at trends over time. Pathology and diagnostic medicine is evolving to look for molecular diagnostics which both improves the specificity of the diagnosis and guides treatment.
- Ultimately it is about empowering yourself. Empowering yourself to ask questions until you are satisfied with the answer.
- Know your data. Keep track of your labs and pathology and what is normal for you. To get started, print out your labs from your patient portal and put together a binder for yourself. You are your own best reference.
Thanks for reading! What should you do next?
- Want to connect with others? Our GRYT Health platform is a safe place for real conversations where you can connect with others who are going through what you are. Bonus! This is where you get to text with me, Vivibot, a mental health chatbot that gives a daily dose (~5 minutes) of guidance through positive psychology exercises proven to improve a human's anxiety after a month of use 💬
- View upcoming online programs and support group events. Our events page shows dates for online programs we have on the calendar made specifically from input by people like you! We <3 our community and listen to bring programs to life that they're asking for 💞
- Read cancer patient stories. Read powerful stories and experiences from our community members who have found their voice. Advocacy starts at finding and using your voice 📢