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Today we are joined (again) by therapeutic nutrition consultant, LS warrior, and vulvar cancer survivor, Heather Cooan. Last episode we heard her diagnosis story. Unfortunately, Heather went undiagnosed for over 25 years, allowing her Lichen Sclerosus to develop into cancer. This was a gross failure of the medical system. In today’s episode, we learn how Heather advocated for herself and fought for her values. Doing so allowed Heather’s Lichen Sclerosus to go into remission and she is now cancer-free! Her story reminds us of the importance of self-advocacy in the medical realm.
Before we dive back into her story, however, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus warriors.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading to the end for exciting announcements coming from LSSN!
Advocating for Herself and Her Clitoris
After the initial consultation with the resident, Dr. Boola came in for the exam and informed Heather the cancer was growing and he wanted to do surgery immediately. Critically, the surgery he wanted to perform would involve removing the clitoris, as the growth was right next to the clitoris.
At this point, Heather knew vulvar cancer had a 40% recurrence rate. She was not willing to sacrifice her clitoris, a key organ for sexual function, when she may have to battle this again.
Heather was determined to keep her clitoris, because its loss would open a can of worms such as losing her female identity, sexuality, etc. Thus, Heather refused to let him take her clitoris. She told him this was unacceptable and wanted another option. This was one of many moments in her journey where Heather advocated for herself.
When Heather asked for another option, Dr. Boola said he could remove as much as he can, leaving the clitoris intact, and then see what pathology reveals; Heather opted for this alternative.
Results of the Surgery: Needing to Advocate for Herself Again
The surgery itself took a total of 15 minutes. Heather had a radical vulvectomy; a lot of tissue was removed from her left labia. Despite this, the pathology report showed Dr. Boola was unable to get all the cancer.
At this point, Dr. Boola told Heather she had two options. The first option was a second surgery wherein her clitoris would be removed, and the second option was 35 weeks of radiation with low dose chemotherapy.
Heather didn’t like her options, but booked with a radiation oncologist nonetheless, at least to see what exactly her treatment plan would entail. At the same time, Heather also booked with her naturopath.
Radiology Prognosis for Vulvar Cancer
The radiologist walked Heather through the process. She would come in every day for 35 weeks and they would blast her with radiation. The side effects were horrendous. The radiologist noted side effects include but are not limited to extreme burning (similar to second-degree burns), loss of elasticity (leading to sexual dysfunction of the clitoris), loose stools, fatigue, intestinal issues, bladder damage, reproductive organ damage, etc. This doesn’t even scratch the surface of long-term side effects.
Consequently, Heather decided this option wasn’t right for her. This experience brought to light values she wasn’t aware of holding. Specifically, she realized she valued normal body function. She didn’t realize fighting to preserve the function of her body (including her clitoris) was a value of hers until she was faced with losing it. She decided she was going to advocate for her body and take her health into her own hands.
Once more, Heather listened to her gut and advocated for herself. Despite being pushed for a second surgery, she went to see her naturopath.
Heather’s naturopath, whom she had been seeing for a while at this point, noted Squamish cell carcinoma is one of the weaker forms of cancer, one that can be knocked out by natural means. The naturopath referred Heather to a naturopathic oncologist.
The naturopathic oncologist told Heather they would use a combination of hyperbaric oxygen therapy (commonly used to promote healing by pumping in pure oxygen into the body), IV nutrient therapy (this included over 50 grams of vitamin C) for three months. In addition, Heather would make several lifestyle changes including exercise, detoxing, diet, and supplementation.
After this meeting, Heather went home and did her research (yet again, advocating for herself by making informed choices based on her findings). The naturopathic oncologist had a lot of data on their client population. Heather pulled this data into an Excel chart and isolated cases of Squamish cell cancer with the same type of cell. The data revealed the prognosis for her kind of vulvar cancer was better treated by natural means than by radiation. With this information, Heather went the natural route and did 3 months of IV therapy and hyperbaric therapy.
Shortly after, she quit her high-stress job and ended up cancer-free. She is now three years cancer-free; can we get a hell yes for this woman!!! During this progress, Heather’s Lichen Sclerosus went into remission.
By advocating for herself, acknowledging and honoring her values, Heather beat cancer and got her Lichen Sclerosus under control.
Conclusion: Why Advocating for Yourself is so Important
In brief, the medical system failed Heather as a child and through much of her adult life. Accordingly, she went undiagnosed with Lichen Sclerosus for 25 years; this later progressed to cancer. After suffering for years, Heather began to take her health into her own hands. She researched her symptoms, diagnosed herself with Lichen Sclerosus and cancer, found a specialist, and asked for what she needed from him. Heather advocated for herself through this whole process. She fought for a functional healthy body, and never gave into pressure from doctors that contradicted her values. Her story of self-advocacy, doing your research, and listening to your gut.
Nowadays, Heather manages her Lichen Sclerosus primarily through lifestyle and diet (although she notes, full disclosure, she takes Naltrexone (an immuno-modulating pill as well). After Heather quit her job, she decided to make healing her full-time job. Heather is now certified as a functional diagnostic nutritionist and helps others take control of their health.
Stay tuned for next week’s episode where we will take a deep dive into the realm of nutrition, lifestyle, and Lichen Sclerosus with Heather!
Virtual Meetup Information
Did any part of Heather's story resonate with you? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.
Better yet, why don't you tell us at our Lichen Sclerosus Support Virtual Meetup!
We meet every other Saturday from 2-4 pm and/or 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask a question to the group. Perhaps share your experience with appointment anxiety! I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up here for notifications and updates! Our next meetup is on March 20th. I cannot wait to meet you!
Exciting Announcements From LSSN You Do Not Want To Miss!
My girl Jaclyn dropped her second blog on Tuesday on The Lost Labia Chronicles. If you've ever found yourself struggling with the mental health aspect of Lichen Sclerosus and/or struggle with compulsively checking your vulva, you will definitely want to check out her latest blog. You can read it here.
If you are in the Phoenix area, check out Dr. Joseph Brook’s here: https://www.arizonaspecializedgynecology.com/provider/joseph-brooks-md
Dr. Bhoola: https://arizonaoncology.com/covid19/
If you are battling vulvar cancer, check out the vulvar cancer awareness forum here: https://www.facebook.com/vulvarcancerawarenessforum/
For nutritional consultations, see Heather’s website: https://heathercooan.com/