Teresa’s Fight Against Leiomyosarcoma ·
Teresa Ann McMullin 3rd Annual Memorial Wish Lantern Release – YouTube
Teresa’s obit is in Delaware County Daily Times today. It could never fit all she is into it but many thanks to Loretta Rodgers for doing best she could. Teresa McMullin Obituary (2011) – Aston, PA – Delaware County Daily & Sunday Times (legacy.com)
Teresa Ann Linowski McMullin- the best mother ever, the strongest woman ever, passed at 9:37pm this evening. We are heartbroken and miss her terribly. The void will be felt for the rest of our lives. She NEVER STOPPED FIGHTING this awful disease- even when the end seemed near she defied laws of nature, fighting until the very end. She is a hero. Words can’t describe just how brave and heroic and selfless she is. WE LOVE YOU FOREVER MOM
Before Teresa McMullin passed from Leiomyosarcoma, she was frustrated with the medical community’s lack of treatment for LMS but also lack of concern from the time a fibroid was giving her trouble. Not that we would wish LMS on anyone but she used to say that “someone big” would have to get diagnosed with this disease for anything to change, Teresa never stopped fighting and finding a cure for #LMS was always something she talked about. We will never stop fighting for her and everyone affected by this horrible cancer. Days like today also remind me that I need to do more. Life gets crazy and day to day things can take over, but this is what is important. It is truly a matter of life and death. How To Say Leiomyosarcoma – YouTube
Teresa’s Fight Against Leiomyosarcoma
· I get notifications so often that someone has viewed this page.
I can’t help but think every time I do, it is from someone newly diagnosed with Leiomyosarcoma. And that breaks my heart and sends me back to when Teresa,
my mom, was first diagnosed. We scoured the internet, looking for
treatment options and most importantly, hope. I know how terrifying it is.
I know how little information is out there on this cancer (even though there is considerably more than when Mom was diagnosed in 2009 which while I wish it was more and faster does always give me more hope), but I know the diagnosis is still scary and can feel lonely, but you are not alone.
We support you and are with you in our hearts. My biggest piece of advice when newly diagnosed is to learn everything you can on LMS and become your own advocate and have at least 0ne person close to you that is also going to be your advocate and be an additional keeper of all your medical records both physically & mentally. New York (columbia.edu)
July 16, 2013, OK I need a favor from all of you BUT especially from those of
you whose lives have been affected by uterine LMS. In the July 22 edition of FIRST for women on page102 someone writes in with the question should fibroids be removed?
Then she gives a brief explanation of her past health issues. The first line in the doctor’s answer just makes me want to scream…and I quote…”There’s likely no reason for concern.”
Wait, I have to take a deep breath.
This honesty to God makes my insides shake. I lived this life and am totally blessed to be a nine-year survivorship I have. But for all those who didn’t survive or have LMS somewhere else now….PLEASE WRITE THIS DOCTOR. If you don’t want to buy the magazine that is fine…here is the address….Laura Corio, M.D. health@firstforwomen.com
She does go on in her article that the doctor needs to watch for growth or bleeding
that could require additional treatment. When I was diagnosed with uterine fibroids
in September. I was told nothing can be done.
Then I am told ULMS has no cure…. Man, I will never forget that day.
Please help me with this one. A quick email to this woman might save someone’s life.
It also might make this doctor realize that she doesn’t know it all and needs to think
more about how she answers questions.
Hope – Always,
9 year ULMS survivor
Teresa
!!!!!!!MUST READ!!!!!
Yesterday I haphazardly was lucky enough to talk to Dr. Bradley J. Monk of St. Joseph’s Hospital and Medical Center in Arizona. Dr. Monk happened to look at my “Together for Teresa/Leiomyosarcoma” purple bracelet and asked me what it was for as the writing is the same color as the bracelet. I said Leiomyosarcoma, my mom passed from this in December and was ready to jump into explaining LMS, however, he knowingly nodded. “You know about it?!” I asked. What’s New in Leiomyosarcoma? | Memorial Sloan Kettering Cancer Center (mskcc.org)
But then learning who he was and what he did,
I learned that he had first-hand knowledge of this deadly cancer, trying to
make strides in it (though he said he’s more specialized in cervical and ovarian,
he is still firsthand experienced with LMS and friends with Dr. Martee Hensley
and Dr. Mario Leitao. – Search (bing.com) – Search
I wish I had met this man over 3 years ago.
After discussing with him in depth he asked me what I should be focusing on,
I replied I wanted to spread awareness that fibroids can be cancerous and to always
seek out specialist care in any medical problem. He replied with these words and these will help shape my future fighting of this disease: “OBGYNs deliver BABIES, NEVER, NEVER let an OBGYN perform surgery on you. Surgery should ONLY be performed by an OB GYN ONCOLOGIST because THERE IS NO WAY OF KNOWING WHAT IS INSIDE A FIBROID UNTIL YOU TAKE IT OUT.
Once an obgyn cuts into an unknown LMS fibroid it’s over
(Because they just spread it.) Once LMS reoccurs it’s over.”
This will be my mission, fewer and fewer obgyns will do hysterectomies for fibroids. Women around the world will know to see an ob gyn oncologist. He also told me about a robotic surgery called the Davinci that can do the hysterectomy abdominally safely with minimal recovery time.
Now I’m not trying to scare anyone with the it’s over talk, but he and I agree that the most solid defense we have against this disease is in the initial surgery. As for chemo, he said he always does adjuvant therapy after surgery and he is also trying to get Yondelis back in the U.S.
“Teresa faced the challenges of her sarcoma with great courage and grace and good humor and optimism. Her laugh would light up the room. It was truly a privilege to know her and care for her.”~ Dr. Hensley
PLEASE READ!
LISTEN TO YOUR BODY, DON’T LET A DR TELL YOU SOMETHING IS NORMAL THAT IS NOT:”I had uncomfortable menstrual cycles with heavy bleeding. And, despite exercise and diet, I maintained a little ‘pooch’ or baby belly — and I was not pregnant or trying to be pregnant,” Bachtell said. “things just didn’t feel right.”
GET EVERY TEST IN THE BOOK:”I had another ultrasound, an MRI
and a colposcopy — a biopsy of the uterine wall — as well as a Pap smear.”
KNOW THE RISKS AND POSSIBILITIES: “There are treatments that make it manageable, but no definitive cure,” she said. “I’m hopeful that a cure will be found.
But realistically, I think finding ways to manage cancer like other chronic diseases
is just as good.”
MY MOM ALSO SAID THIS UNFORTUNATELY AND THIS SHOULD NOT BE HOW ANY PERSON FEELS, SPREAD AWARENESS, ADVOCATE: Targeted Therapy Shows Promise for Aggressive Form of Uterine Sarcoma | Herbert Irving Comprehensive Cancer Center (HICCC) – New York (columbia.edu)
How and where was your (or your loved one’s) Leiomyosarcoma found?
Interested in putting together a survey and making pamphlets for awareness.
Please feel free to post but PLEASE EMAIL TO: TeresasfightagainstLMS@live.com.
Thank you ahead of time for sharing your story.
Teresa’s diagnosis:
Teresa never really had normal periods, they were always heavy and she was never told this was abnormal. In July of 2009, she began bleeding post menopause caused by a “fibroid cyst” in her uterus. The doctor told her they would ‘keep an eye on it’ and only take action if it continued to cause problems. They did an ultrasound and a biopsy and told her “it is not cancer”. She then had a vaginal hysterectomy during which they had to cut into this large “fibroid” which was filled with cancer in order to get it out.
I am really convinced that this misdiagnosis is the biggest mistake made in all of her treatment and that Leiomyosarcoma is better handled by safe complete removal before it has a chance to spread through the bloodstream as it is a chemo resistant cancer. From the email groups, it seems the longest survivors had one surgery and no mets and therefore no chemo. This survey I think will help others who will be diagnosed with Leiomyosarcoma before they are!
Going through mom’s first diagnosis paperwork, it’s hard,
but constantly try to come back to it to help others.
Her endometrial thickness or uterine stripe was 5.9 mm.
The normal endometrial thickness of a postmenopausal woman is 5mm.
They considered this close enough to the norm – I know it’s small but I don’t.
Her original fibroid was 5x5x5 cm determined after an ultrasound on June 24th, 2009. Another ultrasound was never done. After the hysterectomy on August 19th, 2009, the tumor was estimated to be 6×9 cm. Talk about growth.
*
Causes of Brown and Yellow Vaginal Discharge | Healthfully
When I read the first article about Amy Reed in the Philadelphia Inquirer I knew it immediately – this was the champion LMS needed. Every single woman who has a
fibroid will be looked at with more caution, every hysterectomy done in a safer way, ‘leiomyosarcoma’ going from being a word people asked me “what’s that?” to actually being a recognized word in conversations now is all due to you and your amazing husband Hooman Noorchashm, Amy.
Great explanation of #morcellation.
The Morcellation Controversy: A Timeline – Medscape
https://www.medscape.com/viewarticle/824081
WebMay 10, 2023 · The minimally invasive approach should have meant less recovery time for this mother of 6, but as reported by The Wall Street Journal, things didn’t go as expected. … ‘They blasted it all over’: Morcellation procedure can …
https://www.fredhutch.org/en/news/center-news/2014/...
Web Jul 30, 2014 · Anita Austin, 69, shown at home with her dogs, was catapulted into advanced cancer after a morcellation procedure to remove what doctors’ thought was a fibroid … The morcellation controversy: What’s next?
https://www.contemporaryobgyn.net/view/morcellation-controversy-whats-next
WebJun 1, 2014 · A preoperative workup did not indicate a suspicion for malignancy, and laparoscopic morcellation was performed for tissue extraction. Unfortunately, please keep spreading this word. “Sarcomas are like beehives. If you chop them up they spill all over the place.” Exactly what happened to Teresa. #lms #uterinefibroids #morcellation #uterus #leiomyosarcoma #womenshealth
“THE ASSUMPTION OF BENIGNITY IS A COGNITIVE ERROR.”
Dr. Noorchashm MD on the morcellation disaster: How was this allowed to happen??
So many women are not informed. Teresa was not informed that cancer was a plausible outcome. Teresa also had bleeding pre surgery for a month!
“The blind biopsies done by ob gyns are to rule out endometrial cancers.” “But in the same breath tell you they don’t think you have cancer, that’s FUZZY LOGIC.” “Morcellation is a bad medical practice.” #cancer #leiomyosarcoma #lms #sarcoma #fibroids https://www.youtube.com/watch?v=Qvg5OXaiEiM #morcellation
http://www.youtube.com/watch?v=gIwxfkXGekw&feature=youtu.be
This is exactly what happened to Teresa and what we want to stop happening in the future. PLEASE if you have a #fibroid #uterinefibroid #abnormalperiods, please see a specialist, don’t let them cut into your fibroid, see an obgyn oncologist, not your regular obgyn!
Hysterectomies: Controversy grows over rare cancer risk – nj.com
Sickening that there is still so much resistance in the medical field to ban this procedure. They’d feel differently if it was their own loved one! We will be heard! We won’t back down! We will keep fighting! So much gratitude to Dr. Noorchashm and his wife Dr. Reed for leading this fight even while she battles the consequences of this awful procedure and fights Leiomyosarcoma.
Deadly Medical Device? | fox43.com
FBI Investigating Johnson & Johnson Over Morcellators – CBS Pittsburgh (cbsnews.com)
Doctors Noochashm and Reed discuss the dangers of using a surgical morcellator to remove tumors of the uterus. Although most are benign, if an unsuspected cancer is present, then the malignancy will most likely be spread throughout the abdominal cavity, causing advanced and often incurable disease. Also, discussed are the FDA and the 510(k)-approval process. Jack Pattie Show May 12, 2015
Dr. Hooman Noorchashm & Dr. Amy Reed on Uterine Morcellation and The Spreading of Cancer – YouTube
Many cancers are hidden. While Teresa’s partial hysterectomy was done vaginally, we don’t believe any fibroid should be morcellated in any way. http://youtu.be/n6226ic0Mpk
FDA HEARING ON MORCELLATION HAS BEEN ANNOUNCED!
Please read and share with the fda your stories of loved ones who had been affected by morcellation!
FDA guidance highlights inappropriate use of power morcellation, but concern about interpretation lingers (healio.com)
“If the sarcoma had been taken out whole, her five-year survival rate would have been 50 percent. With the cancer morcellated, it was between zero and 20 percent. “Basically,” says Hooman, “they created a man-made stage four cancer.” Exactly what happened to Teresa. http://m.prevention.com/…/morcellation-surgery-when…
“My doctor said this is normal, you don’t have cancer.”
I remember the exact moment my mother told me that her doctor told her the EXACT same thing. #leiomyosarcoma #LMS #sarcoma #fuckcancer #neverassumebenignity
CyberKnife Surgery for tumors – Bing video
Today we went to Fox Chase – Bing video to find out if cyberknife was an option.
It’s not because of the size of tumors and bc they can’t tell from scans what’s tumor and what fluid and rupturing fluid would cause infection. Moms have been suffering an unrelated to chemo severe upper back/neck muscle spasm the last couple of days and are really tired from chemo.
1 in 350 women seeking surgery for symptomatic fibroids has a hidden cancer.
We want surgeons to remove the whole, morcellated uterus vaginally when they can, and do the old-fashioned open surgery when they can’t.
DoctorOz – YouTube
You changed the fate of so many and we can never repay you for what your fight and work means to us. Your legacy will never die as we continue this fight. I know Teresa was one of the first to greet you with a lot of other women who I know greeted you with hugs and a standing ovation – while I wish you were still here that image is a beautiful one. All of our love to you, Hooman, your beautiful 6 children, and your entire family. All of our gratitude forever.
In lieu of flowers, please donate! https://slaysarcoma.com/donations/
“I’ve always hated the idea of “battling cancer”, or people saying they “kicked cancer’s ass”. There’s no battle.. if cancer wanted to take you out it could do so with ease. If you have an aggressive cancer and don’t die of it you’ve been spared. I don’t think I could ever kick cancer’s ass, but science can. “
The lodger in my chest cavity.. known as Synovial Sarcoma: Living when you’re dying. (synovial what.blogspot.com)
I saw this woman’s (who unfortunately recently passed from her cancer) blog posted on a sarcoma group on facebook and wanted to share. Her first paragraph hit my thoughts on the head. I am sorry to hear that cancer has taken another bright and beautiful person from us. Maybe one day science will actually come through…..
Thank you for sharing your story and your fight.
I just lost a dear friend at the age of 49 to this rare Cancer. Her surgery was not preformed with one of the killer machines. With that said, her physician as well as everyone involved were shocked her tumor had this cancer inside it. Gail Jessell Akers had rounds of Chemo that didn’t work and tumors kept growing in her bowels. She fought tooth and nail to stay alive for her 3 young children. Too bad God had other plans and just shortly after 10 months of fighting, she went to God. Keep the fight up and know Amy, you are in my prayers as your whole family is. Attached is a picture of Gail and I 7 days before she passed.
Gary Schwartz, MD, and Matthew Ingham, MD,
discuss their hope to create a new standard of care for patients living with uterine leiomyosarcoma. #leiomyosarcoma
https://www.facebook.com/watch/?v=216584263720012
See more: Targeted Therapy Shows Promise for Aggressive Form of Uterine Sarcoma | Herbert Irving Comprehensive Cancer Center (HICCC) –
Red Sox draft Clemson’s Clate Schmidt on day of first chemo treatment – ESPN
Warning Prompts Shift In Surgeries on Women – WSJ
Today I started my volunteer work driving cancer patients to their treatments.
While I know I keep this page going and I am always trying to raise awareness for #Leiomyosarcoma and participate in raising money and awareness in any way I can,
I really wanted to personally help people directly as well. I knew it would be an enriching experience for me but I don’t think I knew how overwhelmed with emotion I would be.
It helped to reinforce that my fight is not over, our fight as people is not over, and that many individuals are fighting for their lives every single day.
I will fight cancer until my dying day just as Teresa, my mom, did.
I will fight in her name. Today my patient told me he was “Superman” (even though his surgeries have left him without a vocal box). He is indeed. So many heroes out there fighting for their lives like my hero, my mom, did. Keep fighting all you superman and superwoman, I’ll be right beside you fighting with you.
Here’s how you can volunteer to drive cancer patients to their treatments. Honestly you can drive once a month, once every other, as many times as you want! You can drive one way, or round trip depending on what the patient you select needs. If it’s in Philadelphia, they won’t even ask you to use your own car (but rather Enterprise Carshare) so technically if you’re in a major city you might not even need to own a car but just have a license!
If you’re in the suburbs, they will reimburse you for gas. All that’s asked is a little bit of your time which I know is so valuable but will be even more valuable to the person fighting cancer that you’re helping! The Philadelphia program allows you to do all your own self booking online. So simple, so rewarding. Be a Road To Recovery Volunteer (cancer.org) | The Shocking New Truth About CANCER! (Nobody Shares This) | Dr. Thomas Seyfried – YouTube
My Journey with the Purple Dragon : Living with Leiomyosarcoma,
a Rare and Aggressive Cancer by Moreira-Cali Patricia (2014, Trade Paperback).
Patricia’s world turned upside down when she was accidentally diagnosed with Leiomyosarcoma (LMS), an extremely rare cancer affecting only 1 in 5 million people. LMS is also a very aggressive type of tumor, thus nicknamed the Purple Dragon. After the initial shock of the diagnosis subsided, Patricia was ready to discover ways to heal herself and find hope.
She went from being a counselor to thousands of patients on how to be proactive and take charge of their own health, to taking unknown paths in search of hope for surviving a disease that does not have a single established medical treatment. She embarked on a spiritual journey, which took her to Omega Institute, Bali and Brazil, where she met healers, a guru, a physician and other extraordinary people who became instrumental in her finding peace within and starting to believe that everything can be healed, even the Purple Dragon.
Born in Brazil, Patricia moved to the United States at age 20. She has a Master of Nutrition Science from the University of California, Davis, and has worked as a university professor, researcher, speaker, clinical dietitian and diabetes educator. She is also the proud mother of three children (including an angel in heaven) and the founder of Helping Children Heal (HCH), an NGO that provides medical treatment for impoverished and sick children who don’t have health care.
Patricia is a world traveler, having backpacked solo in Tibet, Nepal, Vietnam, Cambodia, Laos, Namibia, India and many other countries. Above all she is a proactive woman who has been inspiring many as she travels the paths of healing and discoveries, keeping alive the flame of faith that even the Purple Dragon can be tamed.
“Sarcoma Survivor” Kathy Dulski | Facebook
Source: Teresa’s Fight Against Leiomyosarcoma | Facebook
The Shocking New Truth About CANCER! (Nobody Shares This)
| Dr. Thomas Seyfried – YouTube
Search Results for Leiomyosarcoma | Cancer Quick Facts (solitarius.org)
AI shown to predict risk of pancreatic cancer well before symptoms appear (msn.com)