Pelvis Pain led to my RARE, Gynecologic Cancer - Amanda | The Patient Story

In this cancer vlog, Amanda shares how she was diagnosed with two rare cancers. She was first diagnosed with a metastatic cancer of an unknown primary source. Her first symptom was a large lump in her left groin lymph node. Five years later she was diagnosed with extra ovarian primary peritoneal carcinoma.
She started feeling fullness/pressure in her pelvis and scans eventually revealed a grapefruit-sized mass in her pelvis, with part of it being a solid tumor. After surgery to remove the mass, the pathology revealed her diagnosis as extra ovarian primary peritoneal carcinoma, which is a rare gynecologic cancer.
Amanda and her team settled on chemotherapy and the immunotherapy, KEYTRUDA. Despite being in full remission, Amanda will do another year of KEYTRUDA.
#cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #CUP #EOPPC #chemotherapy #radiation #rarecancer #lynchsyndrome #keytruda #immunotherapy
The Patient Story:
The Patient Story is led by a dedicated team of medical, editorial, and video experts, committed to authentically portraying the cancer patient experience. Sharing your story holds transformative power, culturally and personally. We handle each narrative with utmost care, compassion, and scientific rigor.
Our editorial process adheres to the highest journalistic standards, ensuring medically researched, vetted, and fact-checked content. Backed by experienced medical professionals, we offer insights into the latest medical advancements.
Beyond patient narratives, we provide comprehensive coverage of cancer news and medical resources. From symptoms to clinical trials, insurance, finances, and support groups, we offer guidance in a humanized manner.
[Video Chapters]
00:00 Introducrtion
00:14 My family history of cancer
01:26 They found a large polyp in my colon
04:02 I was genetically tested and tested positive for Lynch syndrome
04:25 I found a lump in my groin
07:07 Finding out I had cancer
08:10 The official diagnosis of metastatic cancer of an unknown primary source
08:21 Undergoing testing and scans
09:28 Surgery and radiation
10:22 My latest cancer diagnosis
10:51 I felt this pressure in my pelvis
11:54 They found a grapefruit size mass in my pelvis
14:15 My diagnosis: Extraovarian primary peritoneal carcinoma
15:54 Deciding to do chemotherapy and immunotherapy (KEYTRUDA)
17:06 I had no idea what to expect with chemotherapy
18:00 My side effects of chemotherapy
19:12 Claritin worked for me!
20:36 I made a cancer registry because people wanted to help
21:23 I am in full remission now, but I am continuing immunotherapy (KEYTRUDA)
22:06 My side effects of immunotherapy (KEYTRUDA)
22:49 How the process of KEYTRUDA works
23:46 KEYTRUDA makes me really tired
25:08 Take advantage of the resources at the hospital!
25:40 My BIGGEST advice
Join Our Community:
Sign up for our FREE website: thepatientstory.com/
Facebook: / thepatientstory
Instagram: / thepatientstory
Twitter: / patient_story
Tik Tok: / patientstory
The interview has only been edited for clarity. The interview has only been edited for clarity.
Pelvis Pain led to my RARE, Gynecologic Cancer - Amanda | The Patient Story
• Pelvis Pain led to my ...

[@vodnurse5702]

I insisted on a biopsy when they told me I was “too young” for breast cancer at 35. Surprise! I wasn’t too young. Mine was caught at a very early stage and here I am 30 years later.

[@Bambotb]

What did they do to you

[@lynndinovo3500]

Thank God for you! And 🤍🕊

[@dutchgirlfarida]

🎉my aunt lived also

[@mymoonearthsun]

Hello! I am 53 and had a full hysterectomy this past Feb! 3 weeks later I got a call from my Oncology Surgon( I had cancer on my Uterus but she thought she got it all during surgery)she made an appointment with me to come back in asap. She diagnosed me with stage 3B High Grade Carcinoma of the Endometrium which I had never heard of before which is a rare cancer. I have now gone through 2 Chemo treatment with my 3rd one coming up! I love life and plan on living the best I can! My goal now is to be around for my grandkids that I will one day have❤

[@kimkelly9046]

Praying for you. God bless you!!

[@marianne57]

Keeping you in my prayers ❤️🙏

[@TraceyMariexx]

All the very best to you 🙏💜

[@dianabiesek1945]

Prayers

[@terri5757]

🙏❤️🙏

[@bohochic2459]

Amanda is such a beautiful woman with a beautiful soul. I have been following her on KZbin. She is truly a breath of fresh air...so authentic and transparent. ❤

[@jackieanddashadventures]

I have a super rare gyno-cancer- stage 4 Carcinosarcoma and your story really struck a cord with me! I ignored sooooo many symptoms that in hindsight were super alarming. I am going the chemo route- and I am on Jemperli-taxil-carboplatin and just had my second round. I am balding and exhausted but my cancer marker went down at my last blood test so I’m feeling super hopeful! All my chemo warriors, god bless you!! I hope you’re all doing well.

[@user-my8bb6nc1x]

Super!

[@Oldwomaninthewoods]

I’ve been on a ten year journey with endometrial cancer. I’ve had a hysterectomy, colectomy, liver resection, chemo, radiation and still it goes on. Not very much research $$$ and much of the treatment is from the late 70’s. Advocate always for your own health and never settle.

[@denisberte778]

Ma'am prayers to you, you're a very beautiful lady and you're going to make it. I've been on death's doorstep a number of times and prayer saved me. God bless, Denis Berte' USMC (Nam 70-71)

[@commonsense6967]

Congrats on being in full remission, Amanda! You are a real trooper!❤

[@maudeboggins9834]

You are a breath of fresh air. A wholesome happy individual. You ooze positivity. Flipping Furniture? Is that restoring old furniture?

[@AngelaG-ly7xu]

May God continue to grant you and family Healing.🙏 Keep your Faith and beautiful positivity. Stay strong! 💪

[@carovegan9174]

You probably know about this, but author Ami McKay wrote a moving memoir about her being diagnosed with Lynch Syndrome and what she did, and how she traced this back in her family history. It is called Before My Time. All the best to you!

[@pamelcakes04]

1 in 279 people has lynch and no clue. Genetic testing saves lives. Thanks for mentioning the book title. I'm going to look it up.

[@lynndinovo3500]

Ty for that info. Best to you. 🤍🕊

[@user-wb2yv7ll9d]

Amanda does beautiful work and is a true inspiration. ❤

[@verasamburova6000]

I subscribed to Amanda's channel. She is an amazing person!

[@MadisonBriggsArtchick]

where did you find her channel?

[@bdmbpm1467]

​@@MadisonBriggsArtchick search for Amanda Whitworth

[@marycartella6258]

May you continue to heal from cancer.

[@suewinter3693]

You rock that short hair!

[@Prosouthern688]

God bless God, bless you go girl very very happy for you for the record. You are beautiful with here or without enjoy life.

[@pamelcakes04]

I'm so glad you're in remission! We have lynch too. It's a lot to take care of all the time. My sister and daughter have also tested positive.

[@lynndinovo3500]

Thankfully you were tested. You can prevent colon cancer or treated successfully if caught in early stage. 🤍🕊

[@LyubovLapik-hc4hj]

​@@lynndinovo3500It is not just colon cancer...I have tested for lynch syndrome. And relatives had esophugial cancer, ovarian, multiple uteral cancers, liver and kidney lungs cancer...

[@doris2259]

Thanks so much for sharing your story. 😊

[@GinaSherman-gc2cx]

Glad you are doing better ! God bless you

[@danielam9467]

Prayers to you beautiful!! 💖🙏

[@mandybradley3079]

She is so sweet and a great artist.

[@JLuca-zm4ok]

Amazing strong lady 😢🙏

[@ruthie408]

Thank you for sharing. You are a mighty woman. I wish you many blessings and full health.

[@Lisa_BisaRN]

I absolutely love the cancer patient gift registry! Thank you for sharing your story ❤

[@bctrissel]

You are an amazing person. God bless you in your journey.

[@anastasiatresidder8130]

Thank you for sharing your story. I really appreciated the ides of the cancer registry. It would really help people to help others to set something up like that.

[@sewmeonekenobi639]

It’s odd the insurance company denied standard of care. Not cool.

[@HopeKrakowski-hu8wh]

Similar. 2004 was diagnosed with MGUS. (Beginning stage of Multiple Myeloma, which there is only watch & wait) if we did the Bence Jones test it could possibly show borderline Smoldering Myeloma. MGUS is considered a "blood disorder" & Smoldering Myeloma "cancer". Both are "watch & wait".... so we didn't do the test bc at the time 2004 it would be considered a "pre-existing" & could be denied insurance & life insurance. It was still hard to get w/ MGUS bc the chance of progressing - they gave me 5 yrs. ..... it didn't progress until 2022.

[@vintagejunktofunk4616]

My names Amanda too and live in Seattle AND I flip furniture!! So crazy! I have stage 4 endometriosis and am having my 4th surgery to excise it all and get a hysterectomy. I’ve had polyps but have always wondered about cancer. It’s always in the back of my head. My surgery is this August

[@californiadoll6273]

Funny coincidence lol

[@Godfirst1177]

My name is also Amanda and I have stage 4 endometriosis and just had cancer removed from my cervix and my tubes removed i almost died after that surgery that was two months ago and I am still having complications and symptoms I had before my surgery have gotten worse , in my head as well something is literally push my right eye outward and I have horrible pains in the right side of my head that won’t go away with Tylenol and such my right eye also twitches now since my surgery very badly I’m in constant pain in my abdominal, my lower back , my bowls , I get short of breath and dizzy spells chest pain memory problems the list goes on the doctor I currently have which is the one who did my surgery that I almost died from is just overlooking most of my symptoms and just wants me to rush and do more surgeries which I found out that a hysterectomy will not keep endometriosis from coming back or it won’t keep the cancer from coming back either they both still can even after a hysterectomy, I’m 30 I have had symptoms now for over a year that has just gotten worse and worse I am still currently fighting to get the care that I need now it effects me horribly from even doing anything really my lymph nodes in my neck under arms and groin are also swollen and sore all the time , I wish I could find good doctors like she did because I have a very strong feeling that it has spread through my body and it’s growing rapidly oh and my doctor also left a 4 in cyst on my ovary that is cancerous and so hard she couldn’t get a biopsy so she just left it in me instead of taking the whole thing out especially after she already took my tubes without my knowledge until I woke up in critical condition, so just be careful just having surgery because once they cut in it , it makes it grow and most doctors don’t care about your well being anymore it’s all about the money and of course they will tell you , you need this because that’s what costs the most money or at least that’s how it is in Alabama

[@ruthgoff3540]

I love how you were able to explain your pain. I experienced pain in both wrists. It felt as though they were uncooked noodles and they were being broken into a million pieces. I was diagnosed with stage 4 Cervical and stage 2 breast cancer, one month apart! I have the best oncology team and for that I am eternally grateful. Hope you are doing well today.

[@doodleacademy]

Thank you for sharing your story and the detailed information. Blessings to you 💛

[@EmmaBakesCakes]

I have been following Amanda’s KZbin channel She is such a beautiful and incredibly talented woman. It’s tragic how Amanda and her family have been through so much.

[@janthorpe9577]

You are a positive influence on others who are in cancer world. Breast cancer 8 yrs ago. Limbo isn’t fun. Decisions are difficult. God bless you in your future life.

[@Ceerads]

Great video! Great art! Great dog and cat! I wish you and your family all the best.

[@sailboatrn7372]

Thank you for sharing your story. The first thing I noticed was how beautiful you hair is!! As a fellow curly haired person I love it!! Secondly as a retired RN I cannot tell you how much the nurses wanted to tell you the diagnosis when we have to wait for the doctor to give you that information. Thank you again for sharing your story. ❤ I took chemo for my Multiple Sclerosis and it was a blessing for me. Don’t know if I would take it again. Also I had a port for my chemo.

[@tericarter2019]

YOU ARE BEAUTIFUL INSIDE AND OUT .YOUR STRENGTH AND SPIRIT TO SHARE IS SO GENERIOUS WHEN YOU GAVE SO MUCH OF YOU PRIOR INTO EVERYTHING..THAT LOVING NATURE RETURNS BACK TO YOU AS I AM SO VERY HAPPY YOU HAVE MAINTAINED WELLNESS AND HAPPINESS AND LOVE THROUGH IT ALL. SENDING THE BIGGEST HUG I CAN FIND .🌼TERI

[@jeanroth159]

Thank you for sharing your cancer journey with us. Your such a strong and beautiful lady Amanda. I had to giggle when you showed your head with super massive curls,that is exactly my hair atm,quite the challenge to say the least ...lol I wish you clean scans,many smiles and much love to you❤.

[@AafiasNaani22]

Senxing you love and prayers Amanda God bless❤🙏

[@clairebeever3038]

Thank you for sharing your experience… your amazing and so positive I have breast cancer that has returned I hate cancer much ❤ strength hope …. I agree about just feeling good then your health stops you again ❤❤❤

[@kerriecrewe5267]

I was diagnosed 9 years ago with endometrial cancer following a hysteroscopy for post menopausal bleeding. I’d had a couple of male doctors tell me to just monitor the bleeding, we then moved into our newly built home and I saw a new, female doctor who told me no bleeding is acceptable and referred me to the gynae clinic at our local hospital. I did not expect a cancer diagnosis and within a week had seen an oncology gynaecologist and within another week had a total hysterectomy with bilateral oophorectomy. Luckily it was very early and I didn’t need any further treatment.

[@carriekowal5123]

I had post meno bleeding & ran straight to my gyno. I had an endometrial biopsy, ultrasound, transvaginal ultrasound, CT scan & CA 125 blood test. Thankfully all was fine & I continue every 6 months for checkups . My gyno told me that bleeding after meno is not unheard of ,but should be investigated to be on the safe side. The same thing happened to my mom when she finished menopause ,but didn't get checked at all . She is 82 now 🤷

[@CopingwithGrattitude]

You do have lucious, beautiful hair!!! I would have struggled too…but it is just hair. Hair is not life. I had gorgeous thick long brunette hair and I went bald within about 14 days! Didn’t love it but I got through it. The hardest part was others reactions…not being recognized. I shaved it completely bald at work surrounded by coworkers. I had cut my hair shorter in stages prior to chemo but nothing really prepares you for the gobs of hair just slipping off.🤢

[@susanford2388]

Ma'am you are so lovely, I wish you all the best, & indeed sometimes we just know when something is wrong & need to let the professionals know we know our own bodies.

[@jasenkavukelic5047]

I love Amanda! Been subscribed to her channel for some time now.

[@corazonyap3499]

May i know her channel pls? Thanks

[@jasenkavukelic5047]

@@corazonyap3499 Sure, just type Amanda Withworth!

[@splash6427]

🙏 ❤️ 🙏 For You & All Always & Forever

[@jaycorwin1625]

I wonder if anyone has told Amanda how beautiful she is, inside and out?

[@clairebeever3038]

I totally get you not wanting to loose your hair I’m devastated having no hair 😢 it won’t be the same ever again 😢😢😢

[@Ceerads]

Your hair WILL return and will be as good as before. At first mine grew back curly (it’s naturally wavy, not curly). After awhile, it came back to what it had been. Mine wasn’t particularly beautiful. It’s true that some people end up with curly hair forever instead of their naturally straight hair, or vice verse, or even a different color, but it will still be good.

[@daisychain4503]

hi - thank you for your story x. I was diagnosed with endometrial cancer (high grade) at the age of 52 just before Christmas in 2021 where I had a full hysterectomy. I had radiation treatment and it affected the bones in my pelvis with hairline fractures. My mum also had the same cancer at the same age. I was tested and it was discovered I had Lynch Syndrome, MSH6. I have since had a colonoscopy and had my polyps removed which thankfully they were benign. I am now hoping that my kids do not have this faulty gene.

[@anitagurns9480]

I’m sorry maybe I didn’t understand,I’m a cancer patient been to 4 cancers. And what I know is when your diagnosed it’s protacal to doing imaging C T’s an MRI and pet to see if there spread or recuuamce an after every 3 or 6 mo for 5 years! Why wasn’t that big growth on pelvic didn’t show up till it was so big! I’m perplexed!!!??

[@marydawnpafford9969]

Really love your energy Amanda! I'm a breast cancer survivor since 2011.

[@dee2862]

Your curls are gorgeous 😍!

[@nancygould9478]

You are one courageous person, I love how your pooch is so there for you, what a cutie! Thank you for sharing your story, I am sure you have helped so many people, keep dancing and smiling your beautiful smile💐🌻🌹

[@barbarameehan113]

Yes claritin works great. My first chemo I took it too late. Now I take it the night of day 1 and I get the shot neuesta day after. No bone pain.

[@californiadoll6273]

Stage 4 stories are my favorite 🥰. They're the most entertaining to listen too. ❤

[@kasch7574]

As someone who didn't take IT, because I knew there was something fishy about IT, I do want to know, if she and her brother took IT!

[@Dmcsw-xg9cq]

❤

[@sheliasims5786]

🙏

[@truthsticks5900]

You have cancer..but your first worry was your hair, ..bless you and congtulatins on being no disease present l

[@heatherlindsay4278]

The dog you kiss will be your soul mate I'm mid 5yr survival rate just starting my 3rd Yr of having been diagnosed with a rare cancer too goblet cell carcinoid in my appendix 2nd yr scan was clean I had a right hemicolectomy but 3wks just gangrene sepsis as my appendix was rotting I kept a picture diary of my symptoms several years before rupture and they were all over looked gaslight for years it was all in my head apparently 😮

[@thesheepofthegoodshepherd2868]

God loves You all. Psalm 86:5 For thou, LORD, art good and ready to forgive; and plenteous in mercy unto ALL them that call upon thee.

[@mandybradley3079]

How much CLARITN ? one tablet 2?

[@bdmbpm1467]

Want to learn more about why she had to have her colon and rectum removed when the large polyp hd not turned cancerous.

[@MeetMyGod-ProphetShoshanaRubin]

Isaiah 53 You are healed in the Mighty name of Jesus😇❤️‍🔥🙏🏼

[@cocosurgerow]

Can they make a wig of your own hair ?

[@fluffgirl1000]

Colonoscopy is nothing".. painless go for it ..

[@annmarie1689]

Not about pain but the thought that they cant really clean the scope. Lots of people get hep. from that scope.

[@wintergirl8]

​@@annmarie1689source??

[@user-my8bb6nc1x]

Minnie Driver

[@vdeniceeckert3494]

Hair or kill cancer? Im shocked hair is nothing

[@user-nx6qr1mt6f]

“Vocal fry”: The annoying trend women use when they grind and growl the last words of a sentence.

[@user-nx6qr1mt6f]

Sad to see, but women who speak with this annoying “vocal fry” where they grind and growl the last words of a sentence is super annoying.

[@Blessingsuponyou]

It took 12 years for veterans affairs to diagnose my dermatitis as basal cell