Worried about fibroid cancer (Leiomyosarcoma)? Here's what you need to know.

[@laurapenny3181]

I am an 18-year survivor of uterine leiomyosarcoma because I was NOT morcellated. My surgeon removed my fibroid thru an open-abdomen hysterectomy. This video promotes morcellation--chopping/grinding the "fibroid" so that it sends the cells throughout the abdominal cavity. I know people who have died because of this. Read the story about Dr. Amy Reed and "Kicking the Hornet's Nest." She left behind her six young children and her husband, Dr. Hooman Noorchashm. There is NO way to know in advance if your fibroid is really benign.

[@vdbehrens]

I have had both open abdominal and laparoscopic surgery. I understand very well the appeal of minimally invasive procedures. But as a survivor of a different kind of leiomyosarcoma (retroperitoneal) who participates in support groups, I have known far too many women with uterine sarcomas who died after morcellation (even when a bag was used and the morcellation was manual). My 17 cm tumor was removed intact through a large abdominal incision 8 years ago, and I have had no metastases or recurrences. If I had fibroids that needed to be removed, I would insist on an open procedure. Healing takes longer-but healing slowly is better than dying.

[@crafteecreations343]

I am in the process of having surgery. I am scheduled 2/8/2023. We are not sure if it is cancerous, but will know soon.

[@leer4014]

@@crafteecreations343 Hi, prayers your surgery went well, how are you feeling?

[@margeb1365]

It happened to me! This doctor doesn't care about you. He reminds me of my gyne who ran from me as soon as he found out I had leiomyosarcoma. I was scheduled for a laperscopic hysterectomy because of fibroids, this technique is also called marcellation. The doctor here isn't telling you everything... This type of surgery chews up everything and sucks it out through a tube. Bags or no bags spills happen and your tumor is chopped up spreading cancer cells. 2 weeks before my scheduled laperscopic hysterectomy I had an emergency abdominal surgery. Because of that emergency surgery I am still here today. If I had the marcellation/laperscopic surgery as plan I would be dead by now do to the speed of cancer cells. Educate yourselves you beautiful women before letting a doctor like this one shorten your life because it's an easier and quicker way to remove a fibroid. Your life means more then that.

[@sharonanderson9599]

This video is pro morcellation. 1 in 350 going in for fibroids has uterine leiomyosarcoma. ALL fibroids should first be biopsied, but that is not always effective. They should be recommending open abdominal surgery for all fibroids. Once morcellation has happened, you spread the cancer in the abdominal cavity, causing stage 4, uncurable stage of cancer. Even bag containment leaks cancer cells. I am a 20 year old uterine leiomyosarcoma survivor who was NOT morcellated. If you had morcellation, I would not be here to warn others of the danger.

[@cinderellakb15]

It happened to me. I was diagnosed with leiomyosarcoma after a large fibroid was found that required a hysterectomy. My doctor did it robotically, although by the mercy of God, he did NOT use a morcellator. He had to remove the large part of my uterus vaginally. Because of that 5e cancer was completely removed and I remain cancer free 8 years later. Using the techniques this doctor is discussing has led to the deaths of many women.

[@samanthafreeman5317]

It happened to me, I had Leiomyosarcoma. My gynaecologist convinced me cancer was rare and I had nothing to worry about. I agreed to morcellation in Jan 2020 and a week later was informed that I had Leiomyosarcoma. The cancer returned in April 2022, 2 new rumours were detected in my pelvis, following surgery it was again confirmed Leiomyosarcoma. I will spend the rest of my life worrying about new tumours and the spread of cancer in my body. This Dr talks about Fibroid cancer, but that’s misleading…it may start as a fibroid for some people but this type of cancer can spread to any smooth muscle tissue and re-occur even after the fibroid has been removed. Morcellation increases the risk of it spreading.

[@welcometosusansmukbang9215]

👉I would do nothing & pray 🙏 I went to see two doctors and they are giving me two different conclusion. Sometimes, doctors can misdiagnose you and give you anxiety too. Only God can help you 💯❤️

[@jeniferjaffe8380]

Lost a best friend who had a very rare kind, sweet heart because she had this morcellation procedure. I can imagine what she would be saying from the grave in response to this video.

[@momog8104]

It happened to me - I was diagnosed post surgery in 2019 and I am so grateful it was NOT morcellated, and I have not to date had a reoccurrence. You should not be recommending morcellation - the risks are too high. Needs to be full open surgery to remove the uterus intact.

[@antonbirta1855]

Ești bine? Ai făcut chimioterapie?

[@denisejanowiak4684]

It happened to me. I had a morcellated fibroid that was uterine leiomyosarcoma. I’ve been upstaged and am not curable secondary to the morcellation. Morcellation spreads it every where. Do you want to take that chance with your wife, mother, daughter?

[@tlavender425]

I just found this diagnosis on some of my medical records from when I had my hysterectomy. The crazy thing is I was never informed of the diagnosis. I am sitting here in shock because for the life of me I cannot figure out why this information was kept from me.

[@Bujji0423]

But you didn't have any symptoms after surgery and you are fine now?

[@arayaasbeautifulreborn2104]

Hi..sadly I am that person that has the cancer. They took it out of me last year 2021 of May. It was really really big!! I had a hysterectomy. I ended up having 22 units of blood put back in me. They almost lost me. A whole year went by and now its back. Attached to my small intestines. About three weeks ago, the size of it was 7in by 4in round. In my abdominal area the long way. They said they can't do anything for me. Cry..cry. why? So now I just wait for it to grow bigger and die. Oh God help me!!!!

[@honesty2476]

that’s not acceptable!! I don’t know what state you live in but go to as many gynecology/oncologist as you can!

[@arayaasbeautifulreborn2104]

Dr. Rich you never answered me.

[@DoctorRich]

@Arayaa: I agree with @Honesty 24/7. Patient's with challenging diagnosis such as recurrent leiomyosarcoma should seek a second opinion at a tertiary referral center such as: Cleveland Clinic, Mayo Clinic, John's Hopkins, or MD anderson.

[@arayaasbeautifulreborn2104]

Thank you ...I'm trying to do that!👍❤

[@tammyknibbs8496]

Arayaa, I also had an enlarged uterus (fibroids) and a rough full hysterectomy - fortunately by an oncology gynecologist. I had to have transfusions during and after surgery and blood pressure medication during recovery, but they finally got me stabilized… then I got the scary news that I have Leiomyosarcoma. Unfortunately it’s metastasized to my lungs and I have a tumor in my uterus. I’m on chemo now and likely have radiation in my near future. This is very scary stuff, but I really want to impress upon you that you need a Sarcoma Specialist!! I cannot stress that enough. On KZbin, you can subscribe to “LMSDR” and on Facebook there is a Private group, Leiomyosarcoma Support & Direct Research Foundation you can ask to join. This group has “LMS bootcamp videos” that are great plus advice and support from LMS survivors.

[@mariakorfioti9633]

It happened to me. I had Leiomyosarcoma. All fibroids should be treated as suspicious. Total abdominal hysterectomy is the safest option for removal.

[@karishmagautam5105]

Safest option is to heal it naturally with diet, exercise and supplements and making sure it never happens ever again by continuing the right diet and exercise

[@anglophils645]

This is a very informative video regarding the risks of, and treatment of, leiomeiosarcoma. Many of us middle-aged ladies have fibroids, so we do wonder. Thank you, Doctors, for posting this. It was particularly interesting to hear about the bagging of the fibroid before removal, to prevent spread of possible cancerous cells within the uterus.

[@DoctorRich]

Anglo: Thanks for your comments

[@BiancaRoberts]

Wow. Maybe I shouldn’t have started reading the comments. I have had an MRI and they’re concerned about cancer since my lymph nodes are being affected. I just discovered I have fibroids after my stomach getting larger and larger over the last year and a half. My largest one is 20.3cm and now I’m super scared. I’ve just been referred to a gynecology oncologist. So I’m waiting on what’s next. I was wondering why they just can’t tell me based on the MRI if it’s cancer or not. But I understand that’s not possible. Thank you for making this video even though I’m more scared than ever from reading these comments. 😢 I know everything will work out.

[@shravanbhadoria4104]

It is normal to be scared. Consult with the expert doctors and get more expert opinions on marcellation/laperscopic surgery. I have also gone through other's comments, all of them were against marcellation. Please contact bunch of right people who have gone through this condition to gain confidence and feel better.

[@Kre8iviT27]

Can a fibroid that has started degenerating have similar characteristics of leiomyosarcoma by looking at MRI? My Dr said that he highly doubts that it's cancerous. He recommended a laparoscopic myomectomy but I worry about worst case scenario. I was looking into UFE originally, but would that shrink a fibroid that is cancerous.? Also, why can't biopsies be done on fibroids by sticking needles or suction device into the questionable fibroid to take sample for testing?

[@DoctorRich]

@Kre8iviT27: Degenerating fibroids and leiomyosacroma can have a similar appearance on MRI. Cancer fibroids are so rare that you would need to do thousands of benign biopsies to find a single cancer. Also false negatives limit the value of the strategy. furthermore a biopsy of the cancer could cause spread of the cancer. Unfortunately there is no reliable test to determine if a fibroid is cancerous.

[@sharonanderson9599]

@@DoctorRich I agree. The only acceptable way to remove a fibroid is with an open abdominal surgery in tact. Then let the pathologist diagnose it as benign or LMS.

[@bdmbpm1467]

​@@DoctorRichThnk you for reporting on this topic and answering questions in the comments.

[@mimiya4406]

If one had a myomectomy and uterine ablation for abnormal bleeding, and the pathology report came back as “highly suspicious for leiomyosarcoma”, what would the next step be?

[@DoctorRich]

Mimiya: Leiomiosacroma is an extremely aggressive cancer. You will need to have a consultation with a gynecologic oncologist. GYN oncology physicians are specialists in treating this type of disorder.

[@mimiya4406]

@@DoctorRich Thank you. I did. And I had a total hysterectomy & bilateral Oophorectomy over the Christmas break. Final pathology report was STUMP tumor (uterine smooth muscle tumor of unknown malignant potential), because the biopsy from this surgery didn’t show anything left of the original tumor. Stump has a better prognosis than leiomyosarcoma …

[@mimiya4406]

@Tafari I👍🏻…

[@sharonanderson9599]

@@mimiya4406 keep a close watch with CT scans because STUMP tumors can become LMS metastases.

[@mimiya4406]

@@sharonanderson9599 Turns out upon further testing, it is indeed high grade leiomyosarcoma. My original oncologist didn’t bother to read or send me the report. Getting scans every 3 months… thank you.

[@cathyvalentine896]

It happened to me ! I had non invasive Robotic assist Laparoscopic hysterectomy where my tumor was cut up and put in a bag . I have Leiomyosarcoma and now it has spread All Hysterectomies with fibroids or suspicious should be done Abdominal

[@cathyvalentine152]

What I meant to say is to have open abdominal Hysterectomy not Laparoscopic if you have fibroids !!

[@emmanewman9863]

I would like to ask. I have lower back pain all the time. Upper leg pain. In the past I have had both my tubes removed because of eptopics. I have my ovaries and a womb. I’m prone to cysts and fibroids. Had fibroids out in April. It’s now end of November and I’m in pain. Even to the point I wake in the night right glute pain, really low abdominal pain which can feel in the front of me and the back of me. I now have been told that I have multiple fibroids including ones in the wall that can’t be removed. I’m so over it all. I won’t be having kids as I’m close to 50. Would it be better to just have womb removed.

[@DoctorRich]

Emma: Thanks for sharing your story. You have many options for management including lupron, Acessa, Myomectomy, and hysterectomy. The most definitive option would be hysterectomy (robotic).

[@MegaKitkat77]

Thank you dr for that video, wanted to ask about fibroid pain, as I have low left abdomen pain, I have big fibroid of 12 sm , degenerating , with cystic changes. I am considering open myomectomy as I am worried to do laparoscopic one. I have this ongoing pan, lots of bloating. The pain I have it’s also radiating in my lower back.I I was on hrt for 6 months and fibroid grew 2 sm. thank you

[@bookbeing]

Are there any symptoms that give clues? Have you noticed any similarities in your cancer patient symptoms? Pain? Age? G. I. Issues? Bleeding? Bloating? Other tumors in other places?

[@DoctorRich]

unfortunately there are no highly sensitive symptoms. Rapid fibroid growth or any growth in menopause can be suggestive. However most of these with be benign as well. Bloating, bleeding, and pain are just common symptoms of any fibroid. You doctor will be able to perform additional testing, and refer to a Cancer Gynecologist if necessary

[@donnarockefeller7490]

No

[@SL-up5qh]

What are the symptoms of a cancerous fibroid?

[@GeeksCalls]

I’d like to know too

[@abraral-mershad9744]

I diagnosed with uterus fibroid since 2016 last time I checked which was last year it was grows 4 inch.

[@DoctorRich]

Abrar: Rapid growth of fibroids is a risk factor (although poor sensitivity) for fibroid cancer. Women with rapid fibroid growth should follow closely with their physician

[@abraral-mershad9744]

@@DoctorRich ohhh good to know

[@jesusloverrd4216]

Hi doctor, please suggest, my

[@micawbersmu]

Not a very convincing presentation.