An Ovarian Cyst Led to My Stage 4 RARE Cancer: Lindsay's Appendix Cancer Story | The Patient Story
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- เผยแพร่เมื่อ 7 ก.ย. 2023
- Lindsay B. had been experiencing worsening period symptoms like severe cramping and bloating for years, which she thought was endometriosis. As it progressed, it started to affect her bladder. An ultrasound then revealed a large ovarian cyst. During surgery to remove it, her doctor noticed Lindsay's appendix was enlarged with a tumor and her abdominal cavity was filled with mucus. She was then diagnosed with an extremely rare form of appendix cancer called LAMN or low-grade appendiceal mucinous neoplasm.
Lindsay was shocked to be diagnosed with a cancer she didn't even know existed. After going through obstacles to find a medical team who could handle her treatment, she underwent a cytoreductive surgery and heated chemotherapy called HIPEC, targeting the abdominal cavity.
Full story & transcript → thepatientstory.com/patient-s...
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I am really shocked that gynecologist all over the world have no better advice to all issues than taking birth control and IUD. It is the same here in Germany: No period, too long period, short period, painful period: take birth control. Sad.
IA you would think they would want to rule out serius issues. smdh
I had surgery 7 weeks ago for what was thought to be a mass on my ovary. Turns out it was also LAMN. They removed a 6 and a half pound, 30 centimeter mass, plus many other organs. I’m patiently waiting to learn what to do next.
Thank you for you sharing this experience at such a difficult time in your life. We are on this because we either have symptoms that doctors are ignoring or being dismissive or we have cancer, like you . I am, unfortunately in the first category; so thank you for your video so people like me can get more information. God bless you and I hope and pray that your cancer stays away.
TH-camr Paul in Perth just recently had CRS-HIPEC procedures. I had never heard of it. Now I know of 2 people who had it. Thanks for sharing, and all the best to you!😊
Thank you for doing this video. I’m a NYer, too (Brooklyn, born and bred and here). Jewish, too (atheist). Breast cancer survivor, treated at MSK. The fear lessens but never vanishes, at least for me. Wishing you all the best.
My biggest lesson was to never go to a single practitioner radiographer, only to a group. My single practitioner misdiagnosed the lump. Luckily, I’ve been okay so far (24 years now since dx).
I have endometriosis and belong to a group on Facebook that has a lot of patience from my same doctor's office. Several years ago one girl posted that during her laparoscopy our surgeon thought that her appendix looked a little odd so he removed it. Pathology came back that it was cancerous but the cancer was contained inside the appendix and hadn't spread anywhere thankfully. Ever since then my surgeon takes out every appendix that he sees. He doesn't look for them but if he sees it he removes it.
Patients not patience
Wow! Lindsay, thank you for this wonderful account of your experiences with appendix cancer. You have a gift for giving a vivid and accurate account of the timeline of your symptoms, diagnoses, treatments, and feelings that make me (the listener) understand what it has been like to have this cancer and these treatments, and this prognosis. I want to say, finally, that your spirit and your grit and intelligence are inspiring and helpful for those of us who are also living with cancer and are here looking for information and hope. I hope for everything good thing, every blessing, for you.
Being in such good condition has really worked in your favor. God bless as you move forward with your life.
Hello,Lindsay
Nice of you to share your story with us
Wishing you all the very best
Please accept warm Hugs from Amman Jordan 🇯🇴
Sending you good energy, fellow NY'r & rare cancer survivor. I am 6 months out and every pain is frightening. You have a great nack for story telling, you should write a book. Stay well!
Thank You for sharing your story, being brave and helping others ❤ Celebrate the new normal when you can, but acknowledge all you have been through. ❤
So happy you are so positive💕 Wishing you health and happiness 💕, from a breast cancer survivor.
I just got diagnosed with this exact cancer. I have a 17 cm tumor that spread to my colon. My doctor said I have to have surgery to remove the tumor, parts of my colon, and my appendix and then have HIPEC. My doctor said that LAMN is very rare, but thankfully not aggressive and slow growing. My tumor had been growing for over 5 years they suspect. She said I should have 20+ years after treatment, but a 50/50 chance of it growing back. Thank you for sharing your journey! I feel less alone going through this.
Thank you for watching and sharing your story!
I also have been diagnosed with LAMN & im waiting for the Specialist to determine when to do HIPEC and organ removal so its been 2yrs & she was thinking maybe in 3 more years albeit my organs are covered in tumors as the original tumor in my appendix had burst so I have no idea what to do now but to wait the Specialist said to go home and be happy ?
My hysterectomy following a large suspicious ovarian cyst turned into a state 4 melanoma diagnosis. They found it in both of my ovaries. I was dismissed for over a year as having endometriosis when complaining of pain until I insisted on an ultrasound.
Before listening to these podcasts I always thought that stage 4 cancer meant to certain death sentence . It's scary because it's so easy to dismiss symptoms like bloating and constipation as just having sluggish bowels or maybe IBS if you're really ambitious enough to seek out treatment . It's disconcerting how often the right diagnosis depends on whether you're lucky enough to run into the right person .
Choosing Doctors that are team players with one another are putting their patients first and not their ego’s ahead of their patients ..
Thank you for sharing. 🙏🏼🙏🏼✨💕🙏🏼
I am diagnosed with the RAD51D mutation gene. I’m on waiting list for removal of my ovaries and the remainder of my fallopian tubes to be removed as a prevention to Ovarian cancer. The RAD51D is also linked to breast cancer and now “maybe” also to pancreatic cancer as well. I inherited this gene from both my mom & my dad so I was born with it. I am high risk for this gene bc I’m age 65 so I’m awaiting my preventive surgery at Women’s College Hospital. My hospitalized stay in 2021 was my silver lining to finding this RAD51D mutation gene bc I signed up for Mount Sinai Gencov blood study to help with covid research and with that came Genetic testing which I didn’t know. Thank god genetic testing was a part of my Gencov study!!!🙏🏼
I have been getting menstrual cramps for the past 4-6 months and ultra sound was negative. I now left a message with my family dr that I still have these menstrual cramps and they are more now and closer together. Very worrisome. 🙏🏼🙏🏼
This was the exact diagnosis I had n after CRS/Hipec I’m at NED..xx
I have a 10 inch cyst on left ovarie past few years it never changed now I'm going back to obgym after it was found on MRI and gastrional symptoms severe acid etc I'm going to see the hospital today
@kimmaddison8686 Please let me know how things went. I've listened/read to so many horrible situations of women for the past six months and I feel like we need to reach out to one another. I've been having horrific health issues and no-one has bothered to really listen. I'm pretty sure I have colon cancer. I don't say this just to say this but, I know something is wrong.I'll be praying to get answers and above all "wellness"! God Bless, Terri
Cute puppy dog 🐩
Having to Live with one of the worse sickness can be exhausting but I still have to believe I can be healed.
That’s nice, I have Been diagnosed with a cancer and I will definitely need her help and would also want to know how to get in touch with her. I hope she cures other sickness also?
Thank you a lot you are a life saver. I have found her website on the internet.
Did you feel intense right side lower abdomen pain during periods? Does this pain remain after a week or two of laproscopy?
How is Lindsey doing? I had the same appendix cancer seven years ago.
Hope to hear from Lindsey and I hope you both are doing well. I had the same appendix cencer ten years ago. It had spread then and my appendix had ruptured probably a few days before I went in for what my GYN doctor thought it was an enlarged ovarian cyst through my ultrasound (tumor had the size of an orange). My second surgery was a HIPEC and my surgeon found a lot of small tumors in my abdoment.
If you were in menopause after surgery anyway, not sure if there was a benefit to keep organs that two other surgeons, both at Lennox Hill and Memorial Sloan Kettering Cancer Center, recommended removing. If there’s even a slight risk of cancer, hiding in certain organs or recurring in those organs, I would have to let them go.
The doctors only leave the organ alone only if it could be cleaned and they are pretty sure that it is ok to stay. I had the same caner and the same procedure. My left ovary does not work, either. But only if I knew then that it would not work...I had this surgery also at age 39 and I don't want the consequences of being on menopause so young. Sometime in life when the only thing you can do is to pick the d.e.v.i.l.
Interesting, feeling how the bloating and pain receded within approximately two months made all the difference, I simply go’ogled the latest by Tilly Strankten and her Ovarian Cyst Guide and although it really took about 10 weeks for it to totally shrink and vanish I’ve never felt so light and relaxed.
The title isn’t correct. The cyst didn’t cause cancer