How I Got Sarcoma - Brandie | Stage 4 Leiomyosarcoma | The Patient Story
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- Опубликовано: 1 фев 2024
- Brandie always had painful menstrual periods and a family history of fibroids and endometriosis, but her symptoms eventually got must worse! She then underwent ovary removal surgery and an elective hysterectomy. She then learned she had leiomyosarcoma, a rare cancer of the smooth muscle.
Leiomyosarcoma is a rare, aggressive cancer that grows in the smooth muscles, like those found in your stomach, bladder, uterus, intestines and blood vessels.
#cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #leiomyosarcomadiagnosis #rarecancer #stage4cancer #radiationtreatment #cancersymptoms #sarcoma #cancervlog
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The interview has only been edited for clarity.
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How I Got Sarcoma - Brandie | Stage 4 Leiomyosarcoma | The Patient Story
• How I Got Sarcoma - Br... 
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All that shit happened to you in just ONE year. And already you're reaching out and helping strangers with this kick ass talk? You're amazing. And THANK YOU. May you find welcome at every place you travel.
You are an amazing person. You are so special to share this with others. Thank you.❤
Yes indeed!💪
My sister would be 68 now. She was diagnosed with this and a second form of cancer at 36. She was told six weeks, six months maybe one year. She lived cancer free for 22 more years!!! ❤
So delighted to hear that 🤍🙏🤍
I heard City of Hope and immediately thought of Jenny Apple❤
So did I.
Yes..❤❤❤sweet Jenny.
Me too 😢
I did as well. I followed Jenny and her story.
Me too. 🙏🏻
Hi Brandie, I am a Nurse from Australia and was also diagnosed with a rare Sarcoma last November year of 2023.
I am still going through Chemo sessions. ( Doxu) I am Inoperable as it metastasized to my lungs. I only had 1 Radiation. I surrender all to God as I find this cancer overwhelming. Your story inspired me to keep fighting. I know you have too much on your plate but would love to keep in touch once in a while to see where you're at. Let's continue to fight this Brandie😘🥰😍
🙏🤍🙏
Sending good wishes & prayers… 🙏🏻🙏🏻🙏🏻
🙏🏻🙏🏻🙏🏻
🙏🙏🙏
Keep me posted I'm a heme/ONC nurse
Brandi, I’m praying for you. 23 years ago my mother fought this. They had no idea what to do other than surgery. Hers started on the uterus too. Back then everything was experimental. I hope in some way her treatments gave doctors new insight of what to do. She had been exposed to chemicals that are banned now. We lived on a farm and our fields were sprayed with different herbicides. I’m sure that had something to do with it. I’m praying that your cancer is kept at bay and new treatments become available. May God watch over you and your life.
Sorry to hear this. My condolences. If I may ask, what are the harmful substances? Is it still present in non-organic food nowadays?❤
🙏
My mother fought this 5 years ago. For our moms💜💜and for Brandi 💜
My grandmother also had leiomyosarcoma (spelling ?).Hers was found on stomach. She lived in Oakridge, Tennessee for some time. My mother and her sister also had rare cancers as well. ❤️🙏 for you! Stay positive and strong!
@@angelablocker1439 My mom had Retroperotoneal Leiomyosarcoma
💟 Brandie you are a natural at public speaking . Thank you for sharing.
Sounds like you have had good care, all in all! I have entered into this mad race to survive! My Leiomyosarcoma is attached to the top of my left femoral artery! Inoperable, because of all of the veins, arteries, and other vital organs in the area! I had radiation first! I did get a second opinion at MD Anderson, hoping they could recommend or have someone on board who would know how to treat this beast! My current worry is the metastasis to the liver! Did not shrink with radiation or chemo? So, I guess we go back to the drawing board to look at other options? Take care my dear, I will keep you in my prayers! Keep in touch if you can rest is best! Keep hydrated! Be good to yourself!
I lost my 69 year old mom to leiomyosarcoma. The first clue was that she would gag on food and couldn't swallow properly. A biopsy showed she had a large tumor growing near and around her esophagus. She couldn't retain weight and wasted away. She was gone in five months. Love you, Mum.
You are a brave kid. God bless you! I had a sarcoma tumor removed from my armpit in 1988 and I’m still here: ) My life changed completely. I appreciate God and my wife and my life and the smallest things so much more. Life is a miracle and a wonderful gift from God. Enjoy!
❤🙏🏿🙏🏿🙏🏿
💜
Dear precious lady, you are a courageous warrior. My heart and prayers are with you.
Yes. I. Agree. A. True warrior. Cancer. Has no chance. She will win!!!♥️🌷🌺🌺🙏🏻. Amen
My sarcoma was treated at Northwestern Medicine in Chicago. I was first told the tumor was too large to remove. My surgeon, Dr. Chawla was a sarcoma specialist. I was treated with proton radiation in order to shrink the tumor for surgical removal and it was successful. It made hash of my bladder too. In fact, in many ways the radiation damage has lasted almost a year. I'm thankful that you made it through your journey. I just celebrated my one year after surgery and tests showed no more cancer so far.
Glory to god ❤🙏🏿🙏🏿🙏🏿
❤❤🙏
Did you bladder heal?
Hash of your bladder? Did your bladder ever heal?
Brandi's story is so sadly common - we want to believe the person in charge of our care is giving the best advice possible, and it may not be true. You know who saved Brandi's life? She did. Here she is, recovering from surgery and multiple rounds of chemotherapy - and she's also having to research better options. And no one wants to hear that - because it's terrifying.
I'm not sure I would have had the strength to go through all this extraordinary woman has. And many people would have stopped long before she did, and died, never knowing there were better options. This woman's ability to smile & laugh and look forward to "girls' trips" while still acknowledging the many disabilities she has - and addressing the reality of check-up anxiety - is truly inspiring.
If someone has a rare or difficult to treat cancer, it is absolutely critical that they go to a cancer center . Surgical oncologists and medical oncologists will not turn away Business and will try to treat you. I am an oncology nurse at a cancer hospital and it’s so difficult to try to clean up another hospitals failed treatments. it seems that a person is in their best position to go into remission when they have not been previously treated because their body is in the best shape to fight, the kidneys, liver function lungs and heart are performing at their best.
I started off at a well known cancer center and experienced the following: (1) Doctor never ordered the follow up biopsy so that he could create a custom chemo for me. (2) Doctor never wrote a scrip for necessary lab work need before a biopsy and never told me I needed a script. (3) Navigation nurse never returned an important call. I went for a second opinion. The new oncologist obtained my records and said she would give the same treatment as he indicated in his records. (4) By the time the first center called me for treatment ...6 weeks later...I had already had two treatments with the new oncologist. I'm sure cancer centers do good work but for some reason it was not for me.
@@deva190 so sorry to hear that. I have been an oncology nurse at a cancer center for 15 years, and worked in cancer care at regular hospitals also. Mistakes are happening everywhere because insurance reimbursements and payment for pharmaceutical treatments are driving care. Both are requiring doctors and hospitals to see as many patients as possible and turn them over as quickly as possible. When people tell me how much they love being treated at my cancer hospital., I thank them but also say mistakes can and will be made, and I hope it doesn’t happen here, but we try our best and our heart is in the care we give. People who work at my hospital select cancer as their specialty and want to take care of these types of patients. I feel like That makes a positive impact. This broken healthcare system does not allow us (Drs, Pa’s, Np’s, nurses, etc) to succeed to the best of our ability. We are frustrated and exhausted by having more patients than we can properly take care of. This sounds like what you experienced. Likely not intentional neglect, just a result of a terrible system We are trying to navigate.
You are quite the amazing young woman, Brandi : Beautiful, courageous, resilient, and SO rational ! I am a retired RN and recognize all these diagnoses and treatments but wasn’t an oncology nurse and have never known anyone with leiomyosarcoma. What a journey you’re still on. You have a beautiful outlook - we just have to live each day with appreciation and take nothing for granted.
Thank you for helping me understand what my husband goes through each time he gets the tumor markers drawn (he has a very aggressive type of prostate CA) - the cycle of relief, then limbo for a bit until the fear and uncertainty of the next draw.
Brandi you have my best wishes, my admiration and respect. You are a fierce warrior!
I was diagnosed with leiomyosarcoma in Sept. 2019. I had a lump in my leg for 5 years prior. My PCP told me it was a fatty cyst and not worry about it. When I switched PCPs she took me more seriously and turns out it was cancer. Thankfully it was low grade. Surgery was the only treatment it needed. My heart goes out to you. I am always afraid it will reappear. Stay strong and great that you are your own advocate. It pays to knows your own body and when something isn't normal.
Hi! I too have this lump on my calf, have had ultrasounds for this and nothing shows up. The area has decreased sensation. May I ask if u had any symptoms other than the lump and how it was diagnosed?
@@crystaljackson3529 Of course. I had no symptoms other than the lump prior to all the testing. From the initial xray thru to ultra sound to MRI mine was showing on testing and odd enough I guess for them to want further testing. They finally did a biopsy after the MRI and that is when they said it was a low grade sarcoma. It was surgically removed and that has caused loss of sensation somewhat. The scary part is that my initial PCP told me it was nothing to worry about. I went for like 5 years before getting a 2nd opinion. My mom died at 60 from non Hodgkins lymphoma which started as a lump on her neck. So of course that makes me somewhat hyper vigilant. But I trusted my PcP at the time. Besides just wanting to believe it was nothing. Luckily mine was low grade and surgery got it all. I have to go yearly and get checked though for reoccurence. My advise would be you know your body best and if something doesn't feel right or normal, be an advocate and seek to find closure if you can. Your life may depend on it. Take care!
I was scrolling through you tube and your video showed up. Thank you for sharing your story. I was diagnosed with stage 2a Leiomyosarmo in 2013. I had a 5 centimeter mass in my ascending colon. I was blessed to have an amazing colorectal surgeon who removed it along with the entire length of my ascending colon. I did 5 weeks of radiation. I did not have to do chemo, my oncologist said it was not responsive to it. I just passed my 10 yr mark of being cancer free last October.
Thank you so much for sharing. Would you be interested in sharing your story on our platform? If so, are you able to fill out our intro survey: thepatientstory.com/share-your-story/
I was diagnosed with high grade pleomorphic sarcoma in January of 2023. It was in my left forearm. A hospital in my city has a sarcoma center so I got good care. In February I had surgery with clean margins and 30 fractions of radiation. I had a lot of PT for my hand and regained a good amount of function. Your attitude after all you’ve been through is inspiring. ❤
Some of these cancers are genetic, many from HPV - but on the FB support pages there are 5+ new woman a week of all ages joining. There is so much awareness for Breast Cancer and not enough for Uterine/Endometrial "Below The Belt" cancers. You look beautiful through it all Brandi! Sending Love Prayers Support 💐💐🙏🏻🙏🏻💗💗💗💗🙏🏻🙏🏻💐💐
Brandie, thank you for this video - raising awareness for this very rare and aggressive sarcoma cancer. I am currently fighting stage IV non-uterine pelvic Leiomyosarcoma. I was diagnosed in November 2022, 8 months after my then-husband left our kids and I. Had surgery, did 33 radiation sessions and am currently a part of the doxorubicin/lurbectedin trial at the Sarcoma Oncology Center in Santa Monica with Dr. Chawla. Due to disease progression I am no longer able to be a part of the trial and am meeting with my medical team next week to discuss next steps. Prayers to you, Brandie! 🙏🏼
Many people getting cancer from the shot...it lowered our immune system...praying for you❤hey everybody please ask Jesus into your heart today while you still have time ❤
@@lovesJesus448 🤡
Praying 🙏 for you ❤
@@lovesJesus448🤡
@@lovesJesus448 Many people getting cancer from Jesus, please ask the shot into your heart amen 🙏 ❤️ 🤡
Brandie, thank you for sharing. I just completed 18 months of treatment for a large metastatic leiomyosarcoma on my spine and a large Chianti carcinoma in my liver. I too have a femoral nerve injury. You have been so much more than I have. You have an amazing attitude. I noticed a BD logo behind you in one of your photos. I worked for BD for several years. We have a lot in common. Take care Brandie…I’ll be thinking of you!
It amazes me how everyone is wearing a smile in these thumbnails for such a serious matter.
My sister passedaway in 2022,she had liomasarcoma. Miss her very much😢.Good bless you Brandi 😊
Ho paura che siano questi vaccini che abbiamo fatto
I'm so sorry for your loss. ❤
So sorry , sisters are precious.
I’m so sorry. My sister is fighting this now. She just got sent home with hospice just to see if we can get her stronger and round the corner to keep going. She’s still fighting so hard to stay here with me. 😢
@@panda_bean7 I'm very sorry,IT must be so hard,Your sister is a Big Faighter.God bless You and your belover Sister 😪
I lost my Mom to this cancer 13 years ago. She lived 1 year fr diagnosis. Miss her. You are beautiful and strong. Keep fighting ❤️🌺🙏
I’m so sorry that you have to go through all this! My take away is that you must go to someone who specializes in your cancer. Also, get several opinions. Praying that you stay well and continue to get wonderful care.
Fascinating. Humane. Inspirational. What a brilliant communicator she is. ❤❤❤❤❤
Omg, what a nightmare, but I am so happy for you that you came through it and are now clear. I know exactly what you’re talking about when you describe your anxiety waiting for your scan results, it is excruciating .You look amazing, by the way, super healthy.
Brandie great story and positive outlook to survive and conquer your life and fears. Prayers and healing this day and keep traveling. Jimmy the Juiceman 27 years LMS surviver NJ born/bred
Brandie, you are a warrior and a survivor. May God continue to watch over you. 🕊🙏🏻💫💞
Hi honey. I've been following a girl from UK who had,a very radical cancer surgery. Her name is Tiffany thinks. She's on you tube. Many similarities. I pray for her and I will have u in my prayers also. God bless u. I am also a 3x cancer survivor. God is great
I am so impressed with you. I am much older than you and have lived a good life but developed a uterine sarcoma in 2017. MSK was my hospital and I had a wonderful team. 3 tumors, so stage 3 I think, although my dr didn’t want to tell me that. Chemo. Red devil and olaratomab, surgery and then radiation. But I’m more than 5 yrs out now. So if an old gal like me can get through this. you sure can too. You are so optimistic and you should be. Stay strong young lady.
She is a very optimistic personality. She is an excellent health care consumer. She is so positive too.
RS, MD FRCS
You are such a strong, positive person. Totally amazing. Keep up the fight. Prayers for you. May God bless you.
I'm so grateful that you kept looking for the right doctors. Wishing you the very best! My 22 year old grandson had mediastinal sarcoma.
I pray that you will continue to be cured. 🙏🏼❤
Wow, you have been through so much. I pray you stay cured and every scan remains all clear. You have endured and are enduring more than one person ever should. You speak with such grace and have a lovely spirit, thank you for sharing this and helping others. This is a great video to teach people to advocate for themselves!
You, my dear, are a gladiator. What a strong, beautiful person you are. Your laughter in between the painful explanation of what you lived through made me smile. But it's your spirit that makes you phenomenal. Take good care, and thank you for showing us what grace and courage look like in real-time.
I am so sorry for what you have gone through. What a special and positive person you are ❤️. I truly wish you nothing but the absolute best.
Bless your heart! I know it’s hard. My husband was diagnosed with Chondro sarcoma. It attacks cartridge. His was in his larynx and you are right it doesn’t respond to chemo or radiation. He was at MD Anderson and his cancer kept coming back and they kept doing surgery but finally had to remove his larynx. So he breathes through a hole in his neck. It still came back (they assured him it wouldn’t). So he had radiation and, as you well know, that’s the gift that keeps on giving. My complaint would be they just don’t tell you everything. You have to find out later that there will always be a repercussion for that procedure. The good news is he is still with us and he has a great attitude toward life. His journey started in 2016. I wish you the very best. Hang in there! Love from Texas ❤
I really admire how you have handled this. I know you had no choice but you are so very brave. You are an inspiration to others struggling with this.
Thank you for sharing Brandi. I have been battling breast cancer for a year now and getting towards the end of all my treatments. I have never heard of your type of cancer before. I'm very happy that you are bringing awareness to your cancer, so we can all learn and so folks won't feel so alone that get diagnosed with this. You are a very strong and beautiful lady!! Thanks again ❤
❤🙏🤍
I was diagnosed with ulms in October 21. I am happy to see you doing well. I have had some of the same things that you went through. I too am now clear.
Very important to go to a cancer center to see a sarcomaspecialist, other oncologist don't have the same knowledge on this cancer.
A remarkable woman and a true beacon of hope under adversity, thank you for sharing
My father passed away in 1970 at age 54. He had sarcoma but I don't know what kind since the VA said all of the records got lost in a fire. He got really sick in October of 1969 and had a lot of pain and lost a lot of weight and looked bad. He was just given pain meds and Mylanta as I recall. He died in February of 1970. I wish I knew more about what happened but I was just a teenager so no one told me anything. I have thought about it a lot over the years like why he wasn't given any options other than palliative care.
DC vaginal adenoscaroma in 2021 tumor excision immediate recurrence 6 weeks later. Radical hysterectomy, external rads followed by internal brachy. Rad side effects were brutal but at least I was done... or so I thought... now the from the hormone blocker I take is damaging by bones in addition to neuropathy and joint pain and I'm currently being monitored for a small brain cyst. But am technically NED and for that I am greatful.
Sending 💛 💙 💜 Sarcoma, Gyno cancer and Survivor love to you.
Your deadlifts at the first are inspiring!
what a wild ride you have been on. may God continue to watch over you. ❤️
Wow! What a strong, honest and articulate woman.❤
Brandi your attitude is so amazing! May God continue to give you clean scans! Keep taking life one day at a time! ❤
I had Leiomyasarcomas in my blather when i was twenty seven years old. Back than they had no treatment for it, i was lucky that they could remove them. Im fifty six now, so do t give up!
Praying for you ,all the way from Australia 🇦🇺, 🙏
Brandie, thank you for sharing. I just completed 18 months of treatment for a large metastatic leiomyosarcoma on my spine and a large Chianti carcinoma in my liver. I too have a femoral nerve injury. You have been so much more than I have. You have an amazing attitude. I noticed a BD logo behind you in one of your photos. I worked for BD for several years. We have a lot in common. Take care Brandie…I’ll be thinking of you! ❤
Girl!! What you have done for me today! Thank you and Bless you!❤
Hello, I am praying for you. I have been diagnosis with sarcoma also about a year and half ago. The sarcoma is called myxofibrosarcoma and it has metastasis to the lungs. I had a wedge Video-assisted thoracic surgery (VATS) on my left lung. My oncologist suggested immunotherapy if this doesn't worked I am going to a sarcoma specialist. Thanks for your story.
Thinking of you
Good luck to you!
It sounds like you are on the right track, but please don’t wait to see a sarcoma specialist.
I’d read that one should always go to a sarcoma specialist/center for treatment if diagnosed with a sarcoma. Thank you for this interview. I wish you good health and happiness.
Brandie this is the best advise to share with those fighting cancer. See the Oncologist that specializes in your type of cancer. And make sure its in a cancer hospital. Hope your doing well.
Definitely sarcoma specialist!
@@sallymccoy6286 It’s especially true with sarcoma.
@@Serenitynow958 Yes!
A good friend of ours that lives in Roseville CA was just diagnosed with LMS. The Dr in the ER gave her the news by saying you have LMS it's a rare aggressive incurable cancer, LMS. I'm late to taking my kids to Disney Land, good bye. Your video has helped so much! Thank you so much!
Thank you for sharing your story
Brandi, you’re wonderful! Keep us posted!
Thank you for sharing and I'm so happy I found you! I'm a breast cancer warrior of 5 years but recently the same breast changed quite substantially. I'm waiting on testing & scans to be done so I can move on or go to war. I was feeling defeated but seeing your fight and drive and then overcome so many setbacks, I know I can do this too! 💪🏼 I'm sending you all the best wishes and my prayers 🙏🏼 for you to live the life you love until you are elderly and you're living an amazing full life! ❤❤❤
Wonderful video! Great speaker.
Thank for sharing your story!
I’m so sorry!
Such a rock star. So glad you’re still with us.
Thank you for sharing your story! Wishing you the best ❤
You are the pure definition of a warrior.❤
So happy for you,knowing you were a warrior in your fight!
Thank you for sharing! Wishing you the very best for the future x
I'm sorry to hear of all you've been through. Thanks for sharing.
Thank you for sharing your cancer journey, Brandie.
You are amazing!❤
You are so brave. Period. 👍🏼
Praying for you girl 🙏🏻⭐️♥️
Attitude is everything! You go girl. Hugs.
thank you for sharing your story! You are a true hero and strong person!
Thank you for sharing your story, you are an amazing young lady! ❤️
Thankyou Brandie for sharing your story. I had similar symptoms back when I was 32, but alot of clots. My surgeon told me the entire fibroid was atypical and a leiomyosarcoma. I had a guiding force tell me to have the surgery right away and I am so grateful I did!! Sending you lots of hugs and wishes for successful surgery!!
You are a rockstar, girl. All the love. ❤❤❤
Thank you for sharing.
You are an inspiration. Thank you for sharing your story. ❤ I'll keep you in my prayers.
Just WOW. You are a massive source of inspiration ❤
Brandie is a true fighter. Mad respect and all the best to her!
Brandie, blessings and prayers for you ❤️🙏🏻
I’m so sorry you have gone through sooooo much !!! Your a amazing beautiful lady !!
You are a Real Warrior!!❤ i will still keep you in my prayer list🙏🙏
You are a warrior!
Thank you so much for sharing. Knowledge is power! It’s unreal to hear all that you have been through and yet you have the most positive attitude! Lots of hugs are sent your way for a smoother sail ahead!
You are a rockstar ❤ I feel that everything will work out for you.
Keep going lovely warrior.
You are a champion Brandi 👏🏻👏🏻👏🏻👏🏻⭐️
Thankyou so very much for sharing....
Thank you Brandi. You are one amazing woman, one in a million.
Brandie, you are one amazing women. This journey you have been on has been brutal and you are an inspiration to many who are battling any cancer. Would love to hear how things go for you. Sending love for good health. X
❤ thanks Your courage is inspiring.
You’re one strong woman! Bless you and all the best going forward.
You are amazing! Such an optimistic attitude. Be proud of yourself.
Brandie, your story is so touching. You have been through so much. You are truly a warrior in every sense of the word. You are so right, the important thing is you’re alive!!! You’re an inspiration to all that see your story. Prayers for you!! ❤
Brandie, wishing you the best of luck for the future! You are so strong and inspiring and you can do this!
Thank you for sharing your very difficult journey! Praying for healing and blessings!
Sending positive thoughts to a bubbly lady.
beyond inspirational
and amazing, such an inspiring speaker ❤ I pray for your long long remission thank you so much for sharing your story
Wow that's quite a challenging situation, thank you for sharing. Your outlook is inspiring. ❤
You have a wonderful attitude💕God bless 🫶
I am so sorry for all you have been through. You are truly an inspiration. I hope you have many years traveling and doing what you love.💕 prayers 😊