Uterine Fibroids Blog — An Expert Speaks Out

At the time I was starting this blog two patients with similar fibroids came to see me. Both were severely anemic, and one was hemorrhaging and in shock.
Before any procedure was done I received both patients’ permission to share their stories.  At the time of the initial writing one had treatment 6 weeks ago and one 3 weeks ago.  Neither of their experiences to date are necessarily typical, but I am following through on my commitment to share their stories.

Comment:   (Updated 6-17-2010)

Yesterday was a difficult day. We did surgery on my first patient (who had the embolization) and found a high-grade sarcoma (cancer) which had spread throughout the abdomen. I talked to her about deleting her story, but she was comfortable with leaving it in.  Uterine sarcoma is very uncommon, being seen in fewer than 1 in 500 rapidly growing fibroids. The risk of cancer is much lower for fibroids that are not rapidly growing. Benign fibroids have never been shown to undergo malignant change.

Could this have been diagnosed earlier, and if so would it have made a difference? Probably not.  There is a single study in which a blood test coupled with a special MRI done with IV contrast rapidly infused differentiated between sarcoma and fibroids.  To my knowledge this has not been confirmed by other studies, and by the time the tumor can be diagnosed there is a high probability that it would have already spread.

It is easy to overreact and be overly aggressive in removing fibroids because of the fear of cancer, which is in fact rare. We would be doing hundreds of unnecessary surgeries to find a single sarcoma.  Yes, had she chosen myomectomy or hysterectomy, we would have diagnosed her sarcoma two months earlier, but it is unlikely that the outcome would be different.  I was tempted to remove this story for fear that it would frighten women into surgery that is not needed.  But I promised to tell the story as it is.  Please understand that this is very unusual, and most women do well when embolization is done in appropriate situations.  — Paul Indman, M.D

My successful adventure in finding Dr. Indman was an interesting journey.  In June of 2008, I realized I had a problem when I was unable to empty my bladder.  After going to the emergency room and having a catheter inserted in order to empty my very full bladder, I visited a urologist who thought I might have had too much water to drink after hiking the day before.  When a second similar incident happened later in the summer, the urologist was again at a loss as to what might be going on.  He recommended I see a neurologist and get an MRI.  Finally, it was determined that I had a large uterine fibroid.  In September, I visited the gynecologist to determine what my options might be.  Before this doctor had even examined me, he told me I would need a hysterectomy in the next month. Read the rest of this entry »

In October, 2009 I saw Kate, a 50 year old woman who was told that she needed a hysterectomy.  In March 2009  a 3.5 cm (about 1 1/2 inch) uterine fibroid was found by her gynecologist.  She was on  low dose birth control pills at the time.

On Sept 23, 2009 she was told that the fibroid was 7.2 x 6 cm.  She had no symptoms at all.  No pain, no pressure, no abnormal bleeding.  Her gynecologist told her that the fibroid was growing rapidly, and could be cancer, so she needed an immediate hysterectomy.

I first saw Kate on October 1, 2009. At that time I could feel a small fibroid next to her uterus.  I did an ultrasound during which I saw a pedunculated myoma (a fibroid on a stalk) measuring 6.9 x 4.6 cm.  Knowing that the risk of cancer is extremely low, we decided to monitor the size of the fibroid closely rather than rushing into surgery.

November 1, 2009.  I rechecked the fibroid with ultrasound and it measured 6.5 x 5.1 cm.  Essentially the same size.

April 5, 2010: Her fibroid measured 6.3 x  4.7 cm. (a slight decrease in size).   As she was 51, we decided to stop the birth control pills and will do lab work (FSH) to determine if she has reached menopause.

Dr. Indman’s Comment:   This situation is something I commonly see — a woman has a fibroid detected and told that she needs surgery because it is rapidly growing.  In Kate’s situation she had an ultrasound that showed that it really was growing, although frequently these “new”  fibroids” have been there for a long time and have just been missed on exams.

The risk of cancer in rapidly growing fibroids is approximately 1 in 400.  Understanding that there is a very small risk of cancer, we decided that close monitoring was reasonable.  As Kate’s fibroid has actually decreased in size, it is extremely unlikely that she will need surgery.

Economics: Kate would have only had to pay 20%  of her insurance company’s “preferred provider’s” contracted rate for the unnecessary hysterectomy.  She also would have lost 6 weeks salary off of work, and had an operation that she did not need.  The cost of an expert evaluation was far less than 20% of a discounted operation she did not need!

Read about Kate’s Case

A  47 year old woman with “rapidly growing uterine fibroid”. P.D.M.  contacted us because she was told she had a rapidly growing fibroid.  She wanted to avoid a hysterectomy, but in her home state of Wyoming was only offered hysterectomy with removal of both ovaries because of the possibility of cancer.  Several years ago she was noted to have a small myoma on ultrasound, but it appears to have grown rapidly in the last year.  She noticed some pelvic pressure but no abnormal bleeding.

When she contacted my office we suggested that she get an MRI, which showed a 10 cm. (4 inch) mass in the uterus will cystic (fluid filled) areas (which are white), suggesting a degenerating fibroid.  (This is a fibroid that has outgrown it’s blood supply.)  Her MRI is shown to the left.

We discussed options, and the very low risk that this could be cancer.   With that knowledge, she chose to come for a myomectomy.

P.D.M.’s myomectomy is shown in the photographs.  An incision was made that was smaller than the fibroid, but it was possible to remove the fibroid through this incision.

Once the fibroid was partially removed it was possible to lift the uterus through the incision to aid in removing the fibroid entirely.

Here is the removed fibroid, which has been cut open to show the fluid filled areas.

The pathology report showed a benign degenerating uterine fibroid.

She left the hospital on the second day after surgery, and was able to return to Wyoming the following week.

Dr. Indman’s Comment:  P.D.M. was advised to have a hysterectomy because of concern that she may have had Leiomyosarcoma, or malignant fibroid.   A sarcoma is serious, but fortunately they are uncommon.  There is no evidence that benign fibroids can become malignant.   One large study has shown the risk of cancer in rapidly growing fibroids to be 0.26%, or about 1 in 400.   As 70-80% of women have fibroids (although many are too small to notice), and malignant fibroids are rare, it is hard to justify removing most fibroids or doing a hysterectomy because of the possibility of cancer.    In my patient’s situation the fibroid was growing rapidly and causing symptoms, so she chose to have it removed.

The decision to remove the fibroid or do a hysterectomy in a 47 year old woman who is not planning to have children is personal, and there are advantages and disadvantages to each approach.  In the very unlikely chance that a malignancy is found, a hysterectomy would of course be necessary.  On the other hand, we would be doing hundreds of hysterectomies for benign fibroids to find one that had cancer.  In addition,  I would strongly recommend against taking out her ovaries, as the increased risk of heart disease, osteoporosis, and other problems outweigh the risk of later developing ovarian cancer.

I feel that my role is to explain all of the reasonable options available to women, and help them make the best decision for their own lifestyle.  As P.D.M.  felt emotionally that she wanted to keep her uterus, and there was no medical need for a hysterectomy.    The fibroid was easily removed while leaving her uterus.

Read what P.D.M. writes about her experience!