In this episode, Jessie talks with Carmen, who has been through 3 surgeries related to her thyroid cancer diagnosis. She talks about her experience of having to self-advocate in order to get diagnosed (with papillary and follicular thyroid cancer) and then experiencing lymphedema and nerve damage from surgery. She talks about the improvement she has been feeling after her most recent corrective surgery and what she found helpful throughout the process. Carmen talks about asking for help from others, questions she found helpful to ask her doctor, and focusing on life beyond her thyroid.  Carmen and Jessie also discuss some tips they found helpful related to surgery, such as eating soft foods after, massaging the scar (if possible), and asking questions after surgery.

Everyone's experience with surgery is different, so be sure to consult your care team about specifics for you!
For support groups (local or online), please visit: https://www.thyca.org/sg/

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Happy thyroid cancer awareness month! Becky Johnson and Daria Jerauld join Jessie for this episode where they discuss the low iodine diet (LID) and radioactive iodine treatment (RAI). Becky and Daria lead a LID support group through ThyCa and discuss resources they recommend such as the LID cookbook. Becky and Daria provide an overview of LID,  numerous tips around how to navigate the LID period, and discuss their experiences with RAI. Daria went through RAI in 1996, Becky in 2010 and Jessie in 2021 so they share their various experiences with the treatment. 

Links to resources discussed in the podcast episode:
-LID cookbook/app: https://www.thyca.org/pap-fol/lowiodinediet/
-LID support groups: https://www.thyca.org/sg/sig-lid/
-ThyCa conference (Oct 13-15 2023): https://thyca.org/support/conferences/

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Listen in to Thomas's story this month, as he shares about being diagnosed with stage 4C medullary thyroid cancer in 2020 after having not been to the doctor in about 6 years. He shares about the difficult process of diagnosis, along with being told that he has metastasis in his spine/hips and that he has the HRAS mutation (which doctors have told him impact the ability for them to treat him). He is honest about continuing to have difficult emotional days, but has also found ways to cope with his diagnosis (he shares about finding others diagnosed with MTC, his support system, and cycling). He has plans to cycle across every US state before he dies, we are cheering for you Thomas!
**Please be aware that Thomas shares in this episode about getting a bone biopsy without sedation (minutes 13:34-15:50).

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Maya, who happens to be the medical provider who discovered Jessie's cancer, joins Jessie for this episode. Maya shares about her story of being diagnosed with thyroid cancer over 8 years ago shortly after giving birth to her second child. She talks about the grief her family experienced with her cancer diagnosis coming only 2 years after her husband's diagnosis with his own cancer, coupled with her own grief of having to end her breastfeeding early in order to go through RAI treatment. She shares about how being a medical provider impacted her experience of cancer treatment, about how necessary she feels it is for people to be able to slow down to process a cancer diagnosis when it comes, and about how much she struggled to adjust to thyroid medication after her thyroid was removed. 

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Join Jessie and Helga for this episode as Helga tells her story of being diagnosed with papillary and tall cell thyroid cancer 6 years ago. Helga is an engineer and cyclist with a sense of humor and a love for storytelling. She talks about some of the bumps in her road of experiences with muscle weakness for several months after RAI and difficulty with bone healing after a bike crash (which her doctors told her was likely due to her thyroid hormone levels). She also shares about the supportive roles of being physically active, her faith, and 2 friends who were role models of positivity for her. Helga is in the persistent disease category for thyroid cancer and also has a congenital heart condition that can cause sudden death, which has put her persistent thyroid disease into perspective. Helga tells her story about timing when it comes to dating relationships, with some difficult life experiences coming up around the beginnings of relationships. Helga also discusses her belief in self-advocacy with medical providers and being partners in the process (which involves dialogue and openness). 

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

In this episode, Brittany shares her story about being diagnosed with papillary thyroid cancer at age 13 after losing her voice and then going through a full thyroidectomy followed by 2 additional surgeries for an implant to create a functioning voice for her. She shares about what it felt like to be given this diagnosis at such a young age for both her and her parents, with the added challenge of not knowing any other teens with this diagnosis. She also shares about the impact of being told she was "strong" by others, the pressure this created for her emotionally, and how looking back she wishes she shared more of the difficult emotions that she felt at the time. She is now a facilitator of the ThyCa teen group and is a science policy analyst for a cancer research company.

Link for ThyCa support group for teens: https://www.thyca.org/sg/sig-teens/

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Julie joins me for this episode talking about her journey to diagnosis of PDTC (Poorly Differentiated Thyroid Cancer) around the time of COVID shutdown. She talks about how scared her and her husband felt when they first found out, all the questions they had, and how alone they felt because they didn't know anyone else with PDTC. Julie is now a facilitator for the PDTC support group through ThyCa and talks about the importance of finding support, advocating for yourself, and not reading articles beyond a couple years old. Julie talks about her own process of emotionally adjusting to living with a chronic disease. 

Link to page for support and email contact ([email protected]): https://www.thyca.org/sg/sig-poorly-differentiated/

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Klaudia joins me for this podcast, sharing about her recent fight with papillary thyroid cancer. She talks about how as an immigrant and foreign service officer (which involves frequent moves), she has struggled to maintain a solid support system. She discusses her experience with the culture within the U.S. medical system and wishing there was more transparency/direct communication about diagnosis/what to expect. Klaudia shares the lessons she learned through her own experiences including wishing she took more sick leave after surgery, paying attention to mental health early on, and seeking out mental health care even when you are in a federal job (despite worries about losing clearance). She expresses the rollercoaster of emotions she has felt with being told she was healed by doctors and then being told she has a remnant after going through treatment. 

Please note: This podcast  is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

In this episode Gary Bloom (executive director of ThyCa) shares his experience of being diagnosed with thyroid cancer 27 years ago, when treatment for the disease looked very different than it does now. Having initially been diagnosed with sleep apnea, the road to diagnosis took some time and then the treatment for his cancer took about 3 years. He shares about the difficult experience of having to be separated from his newborn daughter and his young son for several months after having had his first dose of RAI. Gary talks about his approach of living life without second guessing, the role of his family as his primary source of support, what it's like to look back on his treatment 27 years ago, and his appreciation for support group members and medical professionals throughout his journey.

ThyCa conference is September 16-18 2022, link for details/registration: https://thycaconference.vfairs.com/

Gary's email: [email protected]

Please note: This podcast  is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

In this episode, Bill tells his story of being diagnosed with medullary thyroid cancer and being unsure if he would survive. He talks about his emotional experience of this diagnosis, what he has found supportive, and how his life changed during this journey so far. Bill also explores sources of hope and acceptance while living with medullary thyroid cancer.

Please note: This podcast represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.

Please reach out to [email protected] to provide suggestions for topics or to request to be featured. 

Please note: This podcast is unedited and represents the opinions, experiences and views of those speaking. Please consult your own medical doctor(s) or therapist for all matters involving your health and medical care.