Friday, June 15, 2007

Uterine Fibroid Myths

Five uterine fibroids myths, from a presentation at the meeting of the Obstetrical and Gynecological Assembly of Southern California. [For more on myomas, including some excellent (Warning: graphic!) intraop pics, go here and here.]

▸ Myth No. 1. A rapidly growing fibroid could be or become a leiomyosarcoma [cancerous].

▸ Myth No. 2. If you can't feel the ovaries because fibroids are in the way, you need to do a hysterectomy because if the patient develops ovarian cancer you would never pick it up.

▸ Myth No. 3. Intramural [inside the uterine wall] fibroids will impair fertility so we need to take them out.

▸ Myth No. 4. Fibroids will just grow back after myomectomy, so one might as well do a hysterectomy.

▸ Myth No. 5. Hysterectomy is safer than myomectomy.

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At 3:29 AM, Anonymous Anonymous said...

I am NOT a MYTH.... I was diagnosed with leiomyosarcoma which was thought to be a fibroid.

Sharon Anderson, San Francisco
ULMS, stage IV, 5 yr. survivor.

At 4:51 AM, Blogger ema said...

Ms. Anderson,

I don't know if you can access the linked article, so here's the relevant part, for clarification:

As a matter of fact, genetic studies have shown that different mutations create fibroids and cancer, and so one does not lead to the other, Dr. Parker said.

In a study he conducted in the early 1990s, in which he reviewed 1,332 patients admitted to the hospital for fibroid surgery, he found that only 3 of those women had a sarcoma. Of 371 patients with rapidly growing fibroids, only 1 had a sarcoma. Moreover, MRI with gadolinium enhancement and lactate dehydrogenase isoenzymes can be used to differentiate malignancies from fibroids, he added.

At 11:34 AM, Anonymous Anonymous said...

I had a hysterectomy for uterine fibroids which turned out to be uterine leiomyosarcoma. I am not a myth either. Yes, they are very rare, but your Myth No 1 is a pretty sweeping and misleading statement.

Shirley Collings, UK
ULMS Stage IV, 4 yr survivor

At 2:38 PM, Anonymous Anonymous said...

I'm a former newspaper editor with leiomyosarcoma. This "myth" is dangerously worded. It's very hard to know if a mass is a fibroid or a leiomyosarcoma until it is removed and analyzed. I had an ultrasound and was told that I had a fibroid. It grew very fast. I had it biopsied, and even then, I was misdiagnosed. Finally, it was removed and found to be high-grade leiomyosarcoma.
I volunteer with other leiomyosarcoma patients. Many were told they had fibroids originally. The myth that a fast-growing mass is just a fibroid and couldn't be cancer prevents many women from getting an early diagnosis.

At 3:45 PM, Anonymous Anonymous said...

I'm, not a myth either. In Nov of 2006 I went to sleep for the removal of a fast growing fibroid and woke up with Leiomyosarcoma. Gyn. don't usually order MRI's for fibroids.
Mary Lavin
ULMS stage IV 7 month survivor

At 3:50 PM, Anonymous Anonymous said...

Oh please, Leiomyosarcoma is supposed to be so rare - then how come I know 3 women who have it all as a result of a "fibroid"!
My sister, a coworker who's now deceased after 2 yrs., and a friend. I don't see how a doctor can say this about fibroids.
I don't care what your study shows I'm seeing actual people with it and all 3 had fibroids.

At 4:01 PM, Anonymous Anonymous said...

Interesting. I had a rapidly growing intramural fibroid removed in 1992 after a miscarriage. It was 9cm in diamater at removal. I gave birth (vaginally) in 1993, and have never had another fibroid.

Nobody told me it might become cancerous if they didn't remove it; but they did say it may have caused the miscarriage and could cause others. Was that true, or was I a victim of Myth #3? Guess I'll never know, but I'm really glad not to be a victim of Myth #4.

At 5:04 PM, Anonymous Anonymous said...

In 2000, I went into the hospital for a "routine" full hysterectomy because of a LARGE, fast growing fibroid. (It was the size of a large grapefruit.) The surgery went well, and I was busy trying to recover from the surgery when my OB/GYN came into my room and told me I had a rare form of cancer called Leiomyosarcoma.........during the conversation, he also told me that only 5% of the people diagnosed live for 5 years..........
The fibroid was "fast growing" because I had had my routine exam in November of the previous year and nothing was a mere 7 months, it was large.

Fibroids containing leiomyosarcoma ARE NOT a myth.

Susie DuVall, Mississippi
6 Year, 11 month survivor,
and thankful to be!

At 5:09 PM, Anonymous Anonymous said...

I guess am a living MYTH. I had a "routine" hysterectomy to remove a rapidly growing fibroid and found out the next day that I had leiomyosarcoma.......To my surprise, instead of getting well, I was told I had a 95% chance of dying within the next 5 years.
Susie DuVall
6 years 11 months survivor.

At 6:43 PM, Anonymous Anonymous said...

"...ultrasound picks up fibroids that are small and often insignificant"
I find that hard to believe since my ultrasound showed four or five fibroids and I ended up having at least 15 removed in my myomectomy. They also ended up being diagnosed as either LMS or a "tumor of uncertain malignant potential". Kind of shocking since fibroids aren't supposed to be malignant, huh? And by the way, what doctors are going to order an MRI for fibroids when the likelyhood of them being malignant, according to this article, is so small?

Hysterectomy at 29 years old due to malignant potential of tumors

At 6:51 PM, Anonymous Anonymous said...

Okay.... I am a living myth.... Almost three years ago I was told that I had benign fibroids and they would eventually go away. But, guess what? The odds were against me and I was found to have uterine leiomyosarcoma after a hysterectomy for "benign" fibroids that wouldn't go away.

It irks me that gynecologists are so cavalier with their attitude toward fibroids. There should be more caution in their diagnosis.

If it were not for sarcoma specialists dealing with my cancer, I would not be alive today... I've been through radiation, chemos, and three major surgeries.... I'm lucky to be alive.... no thanks to my gynecologist who thought I would never be diagnosed with leiomyosarcoma.

Pamela Sprott
Stage IV High Grade Uterine Leiomyosarcoma... 3 yr. survivor

At 6:55 PM, Blogger ema said...

To all who've shared their medical history with us, thank you!

To clarify Dr. Parker's point. The myth isn't that leiomyosarcomas (LMSs) arise via malignant degeneration of myomas. [They do.] It's that rapidly growing myomas do not equal LMSs.

As you probably already know, LMSs arise via both malignant degeneration of a myoma, and de novo. However, the degeneration route is a rare event:

The true incidence of malignant transformation is difficult to determine because leiomyomas are common, whereas malignant leiomyosarcomas are rare and can arise de novo. The incidence of malignant degeneration is less than 1.0% and has been estimated to be as low as 0.2%.

anon @ 3:50 PM,

I see what you're saying; unfortunately personal experience is not a good indicator of incidence. Think of it this way. If you were a gyn oncologist, all the women you knew, professionally, would be cancer patients. If you then concluded, just based on your patient experience, that the incidence of uterine cancer is 100%, that would be incorrect.

anon @ 4:01 PM,

Interesting. The rule of thumb with myomas and pregnancy is that ~1/3 increase in size (due to elevated estrogen levels), ~1/3 stay the same, and ~1/3 shrink. The problem, of course, is that it's not possible to predict in advance what will happen. In your case, since it had already increased to 9cm with the first pregnancy, most likely than not, the growth would have continued with subsequent pregnancies, so removal was a prudent decision.

At 8:22 PM, Blogger bookgal said...

Just want to log in as another person with life long (adulthood) fibroids. A routine hysterectomy revealed that one had grown remarkeably in the course of 5 months and was--tada!--a high grade leiomyosarcoma.

I also was given a poor prognosis. But I'm still here to tell the tale.

Carolyn Lehman
4 year ULMS survivor

At 10:00 PM, Anonymous Anonymous said...

Another living myth who wants to put in her 2 cents worth. I went in for a simple hysterectomy for fibroids and also came out with uterine leiomyosarcoma in 2001. Had pelvic radiation, then had a recurrence in my lung in 2005. I too know at least 5 other women in Ontario, Canada who also are living myths. Some myth!

At 1:04 AM, Anonymous Anonymous said...

Theresa Miller

Was told its a fibroid. Let it go don't ruin your holidays. Yep that was in August...what holiday??? Seen a different gyn in September. More it's only a fibroid talk. Put me on hormone shot therapy. I was getting bigger and bigger. But was told IT'S ONLY A FIBROID. Finally had a complete hysterectomy in March. Yep you are reading that right. I was measuring like I was 8 months pregnant and bleeding all the time. The uterus was described to me by a nurse this looked like a whole chicken you would buy at the grocery store. It wasn't one fibroid but three and yes LMS was there. So months and months of oh its nothing to the cold hearted creep (my doctor's assistant) walking in and threw LMS at me like it was nothing. Shock set in. I think basically cuz for months I was told its nothing. Nothing turned into a cancer where there is no cure. I have had the follow up's and am still free of LMS. Plan to keep it that way. Thanks for listening.

Theresa Miller
ULMS 2004

At 1:23 AM, Anonymous Anonymous said...

Another who had a "fibroid" that turned out to be leiomyosarcoma. And yes, it was a fast-growing fibroid.
I respect the data that shows that this is a rare occurance. Certainly most fibroids are not LMS. But this is an aggressive cancer that is resistant to treatment. The cost to the patient of being wrong is too high. "Wait and see" could mean allowing time for the cancer to spread. If tests, such as specific types of MRIs could help determine the likelihood of malignancy, then gyns should certainly be encouraged to use them!
It may be a myth to say that "fast-growing fibroids always or usually mean cancer" However it does seem to be one of the characteristics of LMS. Simply ignoring the significance because it "usually" isnt cancer is a terrible disservice to the patient who, like myself, is on the wrong end of the odds. In fact, it may be fatal.

At 2:35 AM, Anonymous Anonymous said...

In Dec 2004 was seen by Gyn was told I had fibrods and had been bleeding for 2 Years went to 2 Different GYN they both told me to get over the counter meds for the bleeding and mood swings .Had Mri. done in Feb.2005 they didnt see anything. Went back to GYN and told her I have pain and weekness. Dr. stated I had a fibrod so big they could not get into uterines they told me they would do surgery 2 weeks later. When I went into surgery I was 4 pints low in blood they to me in . Two days latter my Dr. came to see me to discharge me after signing discarge the Dr. told me I had cancer 2weeks later when seen a cancer DR I had LMS. They new I had fibrods for 2 years. I thing this states alot. Stage 4 uterine cancer 7 lympe nods and so many in my lungs They stated I had this a long time before found Please listen to what were saying! Debra Rader

At 7:29 AM, Anonymous Anonymous said...

I also had a fast growing fibroid
which later was later was found to be an uterine leiomyosarcoma.
4 1/2 year survivor

At 10:41 AM, Anonymous Anonymous said...

I am also not a myth.
I had a miscarriage; then, the next year, I had another one and a physician covering for my regular doctor saw something on the ultrasound that was unusual. He sent me to Emergency at the local hospital for an emergency laperoscopy. There was a 10 cm. growth on my uterus.
I had to argue, fuss and fight to have it removed. I was told it was unnecessary surgery. It was diagnosed as a smooth celled tumour of indeterminate malignancy. Eight months later, I had a complete hysterectomy and BOOM...uterine leiomyosarcoma became a reality in my life!
In my small city in Ontario, I know of three other women with ULMS; not such rare after all!

Karen Quinn Molenaar
London Ontario Canada

At 11:54 AM, Anonymous Anonymous said...

Like many of the other people making comments, I too defied the myth. I had an ultrasound for heavy bleeding, and was told by my OB/GYN that she was 100% sure I had a fibroid...wrong. I had a "routine" D&C, and she came out and said something was wrong, and it looked like cancer. I was referred to a GYN/ONC, had a hysterectomy and was informed it was leiomyosarcoma, a rare and agressive cancer. Do I think most fibroids turn out to be cancer? No. Do I think your "myth" downplays the fact that cancer can be misdiagnosed as a benign fibroid? Yes. I probably wouldn't be here today if not for the guidance and knowledge of the two LMS support groups I belong to.
Lana Maturey
2 year survivor
stage IV ULMS

At 4:38 PM, Anonymous Anonymous said...

When my Gyno told me that fibroids are slow growing I became very concerned because I knew mine were not. In a matter of weeks my uterus had grown to the size of an 18 week pregnancy. Thank goodness he took the precaution of having an ultrasound. The radiologists said that leiomyosarcoma could not be ruled out and therefore a TAH/BSO was performed. The day of surgery with an Onc Gyno present, we were told that everything was normal and go ahead and lead my life. Two weeks later I was told I had high grade LMS. The 5 cm tumor was present among many other benign tumors. I strongly feel NO hysterectomy should be performed without an ultrasound done first!! So much for Myth #1!
Marcia McKay ULMS July 2004/Age 52 at diagnosis. Presently free of disease.

At 6:05 PM, Anonymous Anonymous said...

I wanted to comment again after reading the stories here. I have heard so many stories like these it is ridiculous. I think that you all need to get into reality and understand that just because leiomyosarcoma is rare, this should not be an excuse to not be diligent in being sure your patient isn't the 4 in 1 million who will have that cancerous fibroid.

Leiomyosarcoma does not have a cure and the prognosis for high grade leiomyosarcoma is extremely poor.... even worse if you are not seen by a sarcoma specialist who doesn't think this is a myth....

So, please don't spread this kind of idea anymore. Those of us with uterine leiomyosarcoma are living a nightmare and may because of gynecologist who believe this myth.

Pamela Sprott
Stage IV High Grade Uterine Leiomyosarcoma .... 3 yr. survival so far because of an excellent sarcoma specialist at Cedars Sinai and the support of LMS groups who have taught me that I am not alone in fighting this insidious disease.

At 6:27 PM, Anonymous Anonymous said...

My "3 fibroids" turned out to be one giant fibroid with an encapuslated Leiomyosarcoma tumor growing fast. It continued to grow while I was on Lupron to stem estrogen production. LMS isn't as rare as thought - it is more often misdiagnosed. We are real women - not myths AND we are alive to educate other women of this disease.

At 9:35 PM, Anonymous Anonymous said...

I was also diagnosed with 5 fibroids thought to be nothing, but after they were taken out and biopsied they were leiomyosarcoma

At 2:54 AM, Anonymous Anonymous said...

I had three surgeries to remove rapidly growing fibroids. The first surgery to remove a large single tumor was done laproscopically, the second removed both a large fibroid and endometriosis. The third surgery was was for multiple large fibroids that appeared "parasitic" and these turned out to be leiomyosarcoma. And after all these surgeries, I was left with a tumor that had seeded on the exit site of my original laproscopic procedure.

Leiomyoma turned cancerous (LMS) may be rare but it does happen.

Candace S
ULMS, 4 yrs, New York

At 7:05 PM, Anonymous Anonymous said...

I am not a MYTH. In 2001 I went in for my family planning meeting and my obgyn found a "fibroid". Some women have fibroids through pregnancy and we were considering keeping the fibroid b/c I was assured it was not malignant. Due to the location of it, we had to remove it (it would have cut off blood supply to the fetus and I would not have carried full term).

We planned a myomectomy to remove this “fibroid” which doubled in size from 5 cm to 11cm, and discovered it was HIGH Grade LMS,. Treatments followed were Hysterectomy,chemo, radiation, and 4 thorocotomies.

Leiomysocarcoma is very rare but there are more and more women diagnosed with a “fibroid”, ending up with Leiomyosarcoma. If I knew there was a chance it could be LMS I would not have waited 3 months for my myomectomy to remove my “fibroid”. They assured my fibroids were not cancerous, which they are not, but there was never a discussion of the rare chance it could be LMS.

When I was diagnosed I had a 10% chance of surviving 5 yrs. I am one very lucky “MYTH”.

San Francisco
Hysterectomy at 31 yrs
ULMS, stage IV, 6yr survivor (as of 6/13/07)

At 3:08 AM, Anonymous Anonymous said...

I was diagnosed as having a fibroid in 1992. The doctor suggested leaving it alone and seeing what happened. After 6 months it appeared to be growing, but there seemed to be no rush to remove it. Nov. 1993 I had a hysterectomy to remove the fibroid which turned out to be Uterine Leiomyosarcoma (grapefruit size). Chemo and radiation in 1994 followed. So called fibroids should be checked out sooner rather than later.
Determined to live into very old age.

At 2:39 PM, Anonymous Anonymous said...

I lost my mother to LMS less than one year after diagnosis because of this so-called "MYTH". Her large, fast growing "fibroid", removed in a "routine" hysterectomy turned out to be uterine LMS. She had mets to both lungs two months after completing radiation and was dead six months later. It is time to stop perpetuating the "MYTH". No one should have to watch a loved one succomb to this horrific disease!

At 4:59 AM, Blogger Unknown said...

After my first visit to a new gyn he recommended surgery. After all I had read about fibroids, I decided to wait it out. My gyn's office called me three months later for a follow up ultrasound. My tumor had grown from 7 to 10 cm. Surgery was schuduled. Yet again I tired to postpone and was referred to gyn ocologist at Women & Infants in Providence who determined I required surgery asap. After reading these posting I realise how incredibly fortunate I was to have doctors who insisted I have surgery asap for the "fibroid" on the posterior of wall of my cervix. I am a grateful LMS Thriver of 5 years!

At 6:38 PM, Blogger Catherine M said...

I'd like to thank everyone who's posted a comment here. It's encouraging to read myth-busting stories. I was diagnosed with high-grade, stage IV uterine LMS after hysterectomy in July 2007. I've just had my seventh of eight chemo cycles to date and I feel great. I'm working hard, I go to the gym as often as I can and I feel full of energy. I have been fortunate so far. There's no denying that LMS is a serious illness, but in many ways it has had a positive side for me: I've been re-evaluating many aspects of my life and am learning to appreciate the things in my life that really matter. There are three quotations that I'd like to pass on to you, which I hope you may find helpful. First: my oncologist, a great guy and a first class professional, said to me this morning: "Carpe diem". This has been translated from Latin as "Seize the day!”, (Have you seen the film "The Dead Poets’ Society"?) but I've read that a more literal and, in our case, more appropriate translation might be "Harvest the day". "Harvest": I like that. The second quotation is from Maggie Keswick Jencks, of Maggie’s Centres in Scotland.: "Above all, what matters is not to lose the joy of living in the fear of dying". Finally, Viktor E. Frankl, survivor of the horrors of World War II Nazi concentration camps. In his book "Man's Search for Meaning" he wrote that "... everything can be taken from a man but one thing: the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way." I’ll be holding on to that one, particularly if the going gets rough further down the line. For now, I’m living life to the full in the knowledge that the party comes to an end and the music stops for everyone. No exceptions. Those of us who are living with a life-threatening illness have, to my mind, the advantage and the privilege of being acutely aware of this. We can choose to focus on the very real and legitimate fear and sadness and anger that we feel, or we can choose to focus on joy, on the small pleasures and the great gifts of life – love, friendship and our capacity for reflection, among many others. I’m opting for joy.

With my very best wishes,

Catherine M

At 11:30 PM, Anonymous Anonymous said...

I also was diagnoised with grapefruit size fibroid and had a hysterectomy. Unfortunently, the cancer was not found in the biopsy. 18 months later and a lot of pain, they found I had leiomyosarcoma spread all over in my pelvis. The cancer was removed with part of my bowel, bladder, ovaries, etc. I am currently in my second month of chemo. So we did not have the primary tumor for the diagnois, but because of where it has spread it is stage 3.

At 6:47 PM, Blogger Unknown said...

I knew it! There are so many. My sister was plagued all her life with "fibroid" tumors. In Aug 2007she finally had a hysterectomy. In late November 2007 she found she had stage 4 ulms. I lost her only 10 months later. Fibroids are nothing to mess with. I now know they lead to that woman's devastating illness. The problem is to convey that message to those suffering with those "harmless" fibroids! In memory of my sister, Phyllis.

At 2:01 AM, Blogger Unknown said...

Wow! My story is a little different. I, not my GYN, wanted to postpone surgery. I had done my homework. I knew that it was possible, but not probable that I had a malignancy. The tumor was located on the posterior wall of my cervix and both my primary GYN and the GYN oncologists I saw wanted it out. It had grown from 7cm in July to 10cm in October. They wanted it out fast.

I had some personal issues at the time and knew (having done my homework) that fibroids can grow under stress. So, I wanted to get through the issues before surgery. Luckily my docs won out and I had surgery within a couple weeks of the GYN oncologist appointment at Women and Infants Hospital in Providence. This was followed up with a chemo clinical trial at Memorial Sloan Kettering Cancer Center in NYC and lots of integrative therapies - massage, guided imagery, healing touch, energy work.

I feel very blessed and would never alarm anyone. I would encourage anyone with fibroids to do their homework, know the facts and seek multiple opinions including one from an GYN oncologist or a scarcoma specialist. Getting good margins in surgery and insuring that the tumor is removed whole plays a significant role in healing and remaining LMS free.

Catherine Foley
ULMS, 7 yr. thriver

At 10:05 PM, Blogger Unknown said...

ABSOLUTELY not a myth.....please don't let those fibroids go on. My sister suffered from fibroids from many years. One day, far past menopause she began spot bleeding. She had a hysterectomy in August 2006. It was leiomyosarcoma and she died in October 2007. Don't believe that crap about leaving the fibroids alone and they will go away themselves.

At 9:28 PM, Anonymous Karen said...

I was so amazed to read all the shared stories. I have 2 friends who also have fibroid tumors that were cancer. My one friend is waiting her results of a body scan following 8 weeks of chemo. My other friend, Sue, lost her battle just 6 short months after her diagnosis. She was a stage 3 and it took them 7 weeks to determine what "Kind" of cancer she had. I myself am a 25 year cancer survivor thanks to a very determined and on his toes Doc. Keep spreading the word to save lives...I know I am. Karen

At 11:35 PM, Anonymous Anonymous said...

My wife went in for a "routine" hysterectomy in late 2008 for a rapidly growing fibroid. She had been having pelvic pain for years. They did an ultrasound and said it was a fibroid. When they opened her up to remove the uterine body, they noted it was discolored and very soft. The attending physician was in a hurry so she had the resident CLAMP the uterine body and it crushed to pieces spreading cancer cells in my wife's pelvis and abdomen. She required 4 units of blood during the surgery. The attending physician was assuming this was a fibroid and nothing else. After the surgery she stated that she had never seen a leiomyosarcoma before. Well, she's seen one wife had radiation and chemo. She had a pelvic and abdominal recurrence at about 1 year. She is currently on Doxil. Ladies, there are some real bone headed young doctors out there. My wife needs my attention now. The doctor will be dealt with later. Know who is doing your surgery. You don't want a rookie cutting on you. One more point....this happened at a Midwestern Sarcoma Center.

Be cautious when you have surgery....especially in a teaching hospital

At 6:23 PM, Anonymous Anonymous said...

Read what it sounds like your cases were misdiagnosis.

This is claiming that one does not become the other, which is completely different than what you are saying. You are saying that one was mistaken for the other.

My mother had a hysterectomy and has been having trouble, serious trouble, with her hormones ever since, because they believed back then that fibroids would turn into cancer.

It sounds like your case is that a doctor misdiagnosed a cancerous tumor as a fibroid, which is definitely different than a fibroid becoming tumorous.

Again, misdiagnosing a tumor as a fibroid is not the same as fibroids becoming cancerous. In fact, you might consult a lawyer, you may have a lawsuit for misdiagnosis of stage IV cancer as a benign fibroid, leading to delay in your treatment.

However, this statement above is made because millions of women, like my mother, needlessly went through the pain of hysterectomy and continuing complications because back then, and even now in some places I'm sure, correctly diagnosed fibroids were assumed to be a cancer risk.

In addition to the needless pain of a hysterectomy, my mother has survived osteocarcoma, so when she thought she might have cancer again, this opened up a whole emotionally painful wound for her.

It was completely unnecessary.

At 11:53 PM, Anonymous Anonymous said...

Well, for our whole marriage, my wife had pelvic pain (over 20 years). The doctors said it was a fibroid. I sincerely doubt that she had ULMS for that whole time. My wife's pain today because of ULMS is huge. She would trade it for hysterectomy pain ANY day. I guess we are entitled to our own opinions regarding hysterectomy. My wife had a doctor who didn't know what she was doing. Then a rookie surgeon "seeded her pelvis" with cancer cells. That's real emotional pain.

At 3:04 PM, Anonymous Anonymous said...

Once upon a time, hysterectomies were done at the drop of a hat, the link between "hysterectomy" and hysteria is not accidental. Depression, migraine and a plethora of "women's problems" were dealt with this way. Now the pendulum swings the other way and the "save the uterus" campaign starts.
My sister died two years ago. We had six weeks from diagnosis to death. She suffered with fibroids for YEARS, believing that she just needed to wait it out, cause that's what she was told. A beautiful, caring woman with a 16 year old son. The police had to be called out to direct traffic at her funeral, the place was so packed. She was well beloved. Leiomyosarcoma.
I was recently diagnosed with fibroids. Let me tell you this. My uterus and ovaries do NOT define me as a woman. They are pieces of flesh and they are coming OUT. I am not waiting for a biopsy, I am not suffering through the bleeding.I am not waiting it out. No, I'm not a doctor but it seems to me, if its diseased...remove it.

At 4:06 PM, Anonymous tanya said...

The point
I think these women are making is that fast growing 'fibroids' let alone any!! can't, shouldn't, be ignored. It is not fair to play roulette with someone else's life!!! Here in Ontario, I was told I had gas in Emergency when I had excruciating abdominal pain. When I had to return months later I was told to go home and stop being worried- it was JUST a fibroid. Four years later!! I'm still in pain, lethargic, look horrible,...and after radiologist, specialist, family doctor---NO SURGERY YET!! I have to wait until June 8th to start all over with a new specialist. After reading these accounts, I'm terrified that I listened to these quacks all this time and didn't insist on further evaluation---I have two sons who really need me!!!!

At 4:03 AM, Anonymous Anonymous said...

Tanya, I hope you had a good visit with the specialist today. Please let us know how it went. Uterine Sarcoma is rare. ULMS only occurs at the rate of 1:250,000 women per year. You are pretty safe in the odds. Keep pushing wife was that one in 250,000.

Best regards.

At 6:03 AM, Anonymous amairose said...

I am a newbee...searching for info simply because I have HMO and want to know when to say "thats not a good enough answer". Went to gyno today because I have been bleeding for a month. Abnormal for me and have been on the "pill" most of my life due to horific periods and cysts on the ovaries. My doc found a growth during my exam and has ordered a sonogram and said its probably just a fibroid. I hope that is all it is. Am a bit of a sceptic in the health insurance world and my mother had uteran cancer. I am grateful to have found your blogs so that depending on the results, I can push for my health as I am sure they will tell me "its nothing" and hopefully it is but just in case.....


At 9:01 AM, Anonymous Anonymous said...

Anna. My wife had a rapidly growing fibroid (or that's what her doctor thought). They gave her a ultrasound and said it was a fibroid. ULMS is very rare and some doctors never see a case in their careers. My wife's surgeon was one of these doctors. The surgeon broke my wife's uterus during removal, quartered it, and spread the cancer through her lower abdomen. The local butcher could have done a more professional job. The cancer came back in that area one year later in spite of radiation and chemo. An en bloc (whole unit) surgical removal of a uterine sarcoma is the only proven effective cure. My wonderful wife passed one year later after an agonizing illness. Her female oncology doctors were incompetent and downright nasty because they KNEW they killed her. It's hard not to hate these people. DEMAND a gondolium scan AND an ob/gyn surgeon who has experience with ULMS/uterine sarcoma. YOU deserve this as a patient...don't let them tell you otherwise. Also FYI, avoid teaching hospitals. God bless.

At 12:12 AM, Anonymous Anonymous said...

Thank you all for sharing your stories and your strength. I am going in this week for a laparoscopy. The fibroids my Dr. and I have been watching have recently started growing rapidly and I have pain radiating throughout the abdomen and up to the ribs. I have some real concerns as I can tell something is wrong. None of my friends will listen, they all say I will be just fine. I really hope so. I am fortunate to have a good Dr, he mentioned ULMS in my appt so he appears to be on the lookout. He scheduled my exploratory surgery for the same week. I am also fortunate to have good employer, good health insurance, and Memorial Sloan Kettering just down the road. I do not have a family or supportive friends. So I remain afraid but hopeful. I will come back and post again. Stay strong!

At 9:25 PM, Blogger Bobbie Babble said...

Wow, I just had a hysterectomy 2 weeks ago for "FIBROIDS" and turns out they found sarcoma. They are still in the process of trying to figure out which type of Sarcoma it is. Sorry, I agree with everyone else, it is NOT a myth

At 2:44 AM, Anonymous Worried said...

I was told six months ago that i had a mass in my uterus that was a size of a pea since then i hv gotten a diff doc and was told last month that the one that i had has turned into four and no longer is the size of a pea.they are large.I seen my doc friday and i am hvn surgery monday to remove them.My gyn tells me that he dont know why one has turned into four or why they are growing at a fast rate..I know nothing about these fibroids but after reading ur stories i hv alot of the same thing going stoumch is and has been sowllen looks like im nine mos preg.the pain hasnt stoped in all these mons.If any one know of a gyn that spec in this in or around coulmbus ohio could u please send info.thank you and god bless you all.

At 12:06 AM, Anonymous katty trucker said...

Wow, the stories almost all seem to start with the fibroid diagnosis. Same with me, went in because of sudden heavy bleeding after menopause, Doc says fibroid but at least he had me get an ultrasound that same day. Ok, now we want you to see another doctor only they wanted me to wait 3 weeks, but I jumped up and down and insisted on something sooner. Got in and doctor took a tssue sample on a Friday and on Monday night he calls me on the phone and tells me that it is cancer leiomyosarcoma 11cm. Am going in to the oncologist the day after Easter to find out the rest of the story. The thing that has me pissed is I was just in for a Pap smear and pelvic mid October and during the pelvic the doctor says the uterus is kinda hanging down a little and to do some kegles. I would like to see the doctor's notes from that visit but they probably have been changed by now.

At 7:03 AM, Blogger kaney said...

For many women, uterine fibroids are a huge problem. Not only are they uncomfortable but they can cause heavy menstrual bleeding, pressure in the pelvis (which can lead to urinary and bowel problems), infertility, bloating and backache. It's no wonder therefore that women seek to know how to eliminate fibroids. There are various options to look at, but for most women, a way of eliminating fibroids in the least invasive way is the best option.


At 2:43 PM, Anonymous Anonymous said...

Hi there very glad I found this blog and I am interested in learning more. Recently my periods were extremely heavy and lasting 9_10 days. I made an appointment and they ordered a trans vaginal ultra sound. They screwed up my appointment, rushed me in and did an abdominal ultra sound. I called a week later because they didnt call yet and they said they found a fibroid. The nurse informed that they were putting me on the pill with the watch and wait approach. Not satisfied I told her I want to be referred to gyn, she was not impressed. I also told her about the screw up and they just pushed it aside and said they would watch it. I have two children 12 and 9. Lost my mother 11 years ago to homicide. Im not willing to risk my life any and all advice would be appreciated. I work at a teaching hospital and all five around me are teaching I will make sure to clarify that if I need surgery it wont be with a student but with a well recognized surgeon.

Newely diagnosed

At 5:41 AM, Anonymous Anonymous said...

I'm curious what qualifications, other than copy and paste, do you have to talk about female medical concerns?

At 1:54 AM, Blogger Unknown said...

My mom had heavy bleeding march 2012 ...she is post menopausal. Dr found a fibroid, and said to keep an eye on bleeding. She started hemorrhaging 2weeks later and I rushed her to the hospital. 2 months after that she finally underwent a historectomy. They said the fibroid had turned malignant and she was diagnosed with leiomysarcoma, stage 1b. Dr told us it was aggressive and had a 50/50 reoccurance rate. A ct scan revealed that her pariaortic lymph node had been affected and she would need treatment. Radiation started in august 2012 and helped to shrink node from 2.4. To 2.1. Not enough to call it responsive, but stable. She has also been doing chemo for the last several months now, and has one left this week. Went today for the latest ct results...same as before. They are calling it stable. Now she is supposed to sit and wait..! I told her we should see about a sarcoma doctor. Maybe surgery to remove the nodes...
Does anyone have the name for a sarcoma specialist in Ontario?? My mom is only 58..shes my best friend and I can't bare. The thought of losing her...
Jodi (scared daughter)

At 2:47 AM, Blogger hgh2013 said...

I just had a question....
I've had sever abdomenal and back pain for about a year now. Went for Gyno exam snd she asked me to have CT done. I did and it came back that my bladder was thickened. My gyno sent mt to a Uro-gyno fir my bladder.
While she was doing the pelvic exam she stated, there's a fibroid. I said oh. She said did your gyno send you to have an ultrasound? I said no she said CT would cover it all. The first gyno never mentioned a fibroid.
My question is could it have appeared that fast, one week exactly? They do my pelvic and my uterus is so sore. They keep thinking endometreosis. My CT show minimal free fluid in the abdomen also.
What are your thoughts? I have no bleeding just pain....
Bloating, look like I'm pregnant, so very tired!!!
Periods are regular, but have picked up in volume.
She said fibroid was small and wouldn't cause any pain.

At 3:42 PM, Anonymous Anonymous said...

Dear hgh2013 -

It is always better to be safe and have your tumor (fibroid or malignant to be determined) check by a specialist. I would highly recommend seeking a consult with gynecological oncologist as soon as possible. This is very important b/c is it is a malignant tumor, you want to ensure the surgeon gets good margins and if possible removes the tumor whole. If it's a fibroid, so much the better and no harm done.

ULMS Survivor
10 years

At 1:29 AM, Blogger hgh2013 said...

Dear anonymous
I went last Tuesday for a transvaginal ultrasound to check on the fibroid the urologist found. The ultrasound found the small 1cm tumor and another large tumor. Gyno stated on report she didn't know what the mass was... She didn't call it a fibroid but said she hoped it was. Recommended an endometrial biopsy that day. I agreed. Test came back benign. She did say that this biopsy would not actually check the actual mass just the lining.
I'm still concerned and want it out.
The CT I had done a month ago didn't show anything in my uterius. I contacted the West Clinic and a gyno/oncologist. I go tomorrow to see what she says.
It worries me that it could have shown up in the 30 days from my CT till my ultrasound and is at least the size if a golf all if not larger.
I just want it out and tested!!
The nurse said it did seem strange that it didn't appear on the CT scan but she said maybe it just appeared in the last 30 days.
Been so very achy, sore and terrible back pain.
Will let you know how it goes!

At 5:51 AM, Anonymous Anonymous said...

The endometrial biopsy will detect endometrial cancer and uterine sarcoma if it eats thru the endometrium. My wife had a clear endometrial biopsy and unded up with uterine leiomyosarcoma. Because of the biopsy results and doctors who didn't know what they were doing, my wife waited 3 months for "elective" fibroid surgery. She lost her life because of these ignorant idiots.

There are a lot of stupid doctors out there. Make sure you have a good one. Sarcoma is rare.....but don't listen to anyone unless they go the extra mile for your well being.

At 6:05 PM, Anonymous Liz said...

Hi - so grateful for all of you posting your stories and advice. I have a five year old daughter. I am 56, post-menopausal, and live in northern CA. I have a 14cm mass causing urinary problems and making me feel and look like I am dragging around a heavy ball in my belly. Could not get any medical interest - "just a fibroid, live with it" - til a urologist got involved and started escalating my case. Have now been told to have hysterectomy twice. Seeing another surgeon this week inside my HMO (Kaiser). Sending my paperwork in to Dr. William Parker at UCLA and hoping for consult soon. I am putting a brave face on to husband but have moments of sheer panic about my daughter. God bless us all.


At 7:07 PM, Blogger Unknown said...

Hi Liz -

Will be holding you close as you meet with Dr. Parker. Please be sure to also check with a sarcoma specialist. Although sarcoma is ultra rare, when one does have one it is best to have a specialist for the surgery and follow up treatment.I was blessed to have a wonderful surgeon - Dr. Richard Moore, a GYN oncologist at Women and Infants in Providence, RI - who removed the encapsulated tumor whole (minimizing risk of cancer cells spreading) and. I then called Memorial Sloan Kettering Cancer Center and was blessed again to be accepted into a study with chemo to prevent both local recurrence and metastatic disease. Please be sure to get the opinion of a GYN oncologist - better yet one who is a sarcoma specialist - prior to surgery.

Prayers are with you -
12 Year LMS Thriver

At 7:57 PM, Anonymous Anonymous said...

I been on birth control for years and I had 2cm and 3cm fibroids for years and was told that my BC would keep the fibroids from growing - NOT. I been feeling a fullness in my lower abdomen and for tha past two months my period stopped. I had cramps for the first time in years but not period. I went to a new obgyn and I was told that my uterus is the size of a grapefruit. The size of a 6-8 week pregancy. He didnt seem too concered and the first word out of his mouth was hysterectomy. I have no kids and I am 39 years old. Cancer runs in my family like wildfire so I'm praying that this fibroid isn't cancer. After sitting for awhile, when i get up it takes awhile to adjust becuse my lower abdomen feels weird.

At 11:17 PM, Anonymous Anonymous said...

I am a 31 year old female, I have a 27 cm uterine fibroid tumor on the left side of my uterus, and a 5 cm on the right side. I have been in severe pain and was reffered to an oncologist 2 weeks ago, she was surprised at the rapid grow, I look as if i am 9 month pregnant. She assured me that woman my age would never have sarcoma. I have read multiple articles and this website and find it helpful that im not the only one battling this. I had my Pre-op assesment last week and am waiting for my Myomectomy possible hysterctomy. I am super scared that I might have cancer :(. My MRI and blood test results did not show any cancer signs, i am scheduled to have my PET scan in mid june. My Oncologist will be performing my surgery and said she would have to send in the fibroid for biopsy to a pathologist, but she claims to be so experienced that she would be able to tell if its cancerous or not just as she sees it. In sept 2015 i notice my abdonimal got a little bigger it was probably only 5 or 7 cm big, it had a very rapid growth in just 5 months. I am supposedly on their priority list, medical system in Quebec sucks, in terms of the waiting period. It took me 5 months to be reffered to a Gyno. I feel all this growth couldve been simply avoided. I am depressed and cant sleep, because of the pain psychically and mentally. Every where i read it says Fibroid tumors are non-cancerous, im concerened because it has grown enormously. My body has completely changed, I have period twice a month, for longer days, and very bad pain. Please advise.

At 9:18 AM, Blogger Unknown said...

I will not blow off my hysterectomy. I am 38 years old. My fibroid is over 8CM causing severe abdominal pain. I was told that the hysterectomy is elective even though the fibroid was not there a year ago. It is hunting season and my son's birthday is this month plus Christmas is around the corner so I thought about scheduling the hysterectomy in January until reading these posts. I have been teased thinking I have all of the answers from Dr. Google but this is a wake up call for me and it will hopefully get me on the right track! Thank you everyone!

At 10:31 PM, Blogger GFE said...

Can some of you tell me how "fast" your fibroid was growing? Mine has doubled in size in 5 weeks, now measuring in at 15cm x 13 cm. Thanks!

At 3:37 PM, Blogger Unknown said...

I was diagnosed with Leiomyomas, 4 years ago and i was told it is a non cancerous tumor that occurs in the uterus of a woman. I never imagined i will ever have fibroid all my life because i was very healthy. I have undergone surgery twice and it grew back. I was able to get a cure permanently from Dr. Jose Today i am permanently okay, do not be shy or live with it because i know the hell i passed through. Speak to him on for professional advice and for also a cure to it.


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