Chat Archive / September 13, 1999

Carla Dionne:

Welcome everyone. We'll go ahead and get started now even though more people may enter and leave the room throughout the chat.

The information provided during this chat is to be used for informational purposes only. In no event shall the host moderator or chat guests be liable to you or anyone else for any decision made or action taken by you because of this information nor does your use of this information constitute the offering of medical advice by the chat guests. Please seek the advice and supervision of a health care provider when considering the medical information provided here tonight.

One housekeeping rule. Please do not send me any private messages during this chat. I am screen recording the information and private message boxes write over the top of the main text box. You are welcome to send each other private messages throughout the chat, however.

That said I would like to welcome Dr. Michael Broder, gynecologist, and Dr. Scott Goodwin, Interventional Radiologist to the uterinefibroids chat room and open the floor to questions. Please feel free to ask away!

barb450:

I had a UAE on March 29^th of 1999. My 5 month checkup showed that my largest fibroid went from 9.7 cm to 7.8 cm. Would you call that a significant reduction so far?

uffdakab:

I've been told a myomectomy is not an option in my case because of location of fibroid – 4-month, both inside and outside the uterus, 49 yrs old. Have appt. with my gyn tomorrow to consult. Appreciate suggestions for questions to ask.

Carla Dionne:

Dr. Goodwin, perhaps you could address barb450's question first.

barb450:

Since it's measured by volume what would the percentage of reduction be?

Dr. Goodwin:

The amount of shrinkage for barb450 is not that much so far, but sometimes fibroids will continue to shrink for up to 1 year after embolization.

barb450:

Well I do feel less bulk and no pressure. Do you think I might be able to avoid hyst? I'm 46.

Dr. Goodwin:

Also, sometimes the character of the fibroid changes after embolization so that it is much softer.

barb450:

Thank you Dr. Goodwin.

Carla Dionne:

Thank you Dr. Goodwin. Dr. Broder, could you please address the issue of when a myomectomy is not possible in the case of uterine fibroids?

Dr. Broder:

Sure. First I'd like to tell barb450 that she should base her decisions more on her symptoms than on measurements or other "objective" criteria. Those are fine for studies, but if you feel better, you are better.

barb450:

Thank you.

Dr. Broder:

As far as myomectomy not being possible, there really isn't a particular location or number of fibroids that makes myomectomy "impossible." It depends on the comfort level of the surgeon. Some gynecologists say "it's too risky" to do myomectomies if there are more than X number, or if they're in a particular location. It's true that blood loss and operating time is longer with more fibroids, but if that's what you want, you should be able to find someone qualified to do it.

uffdakab:

My gyn had indicated that it would rip up my uterus, that's why she said it was not a good choice. Does that make sense?

kim.ransdell:

Hi Everyone. At the risk of sounding redundant, I had UAE on 9-25-98 with Dr. Goodwin. Unfortunately, my dominant fibroid is still causing "bulk" symptoms. I'm scheduled for a myomectomy and curious about the location of the fibroid issue…what would preclude a gyn from doing a myo? My Dr. sounds like he's undaunted by ANY fibroids. Mine is large, pedunculated subserosal fibroid.

Dr. Broder:

Well, myomectomy IS "ripping up the uterus," you just have to put it back together at the end. And taking many fibroids out means lots more "rips," that's why she thinks it's not worth doing. Studies comparing myomectomy and hysterectomy don't support the idea that hysterectomy is safer—but as I said, it can be easier, especially if there are many of them.

uffdakab:

I have the one main large one. Not sure of the "type," just know it is partly in and partly outside.

kim.ransdell:

AGGGHH! I've never heard myo portrayed in this light. If I hadn't already survived one, I may be having 2^nd thoughts. :)

Dr. Broder:

Fibroids are named by whether they are inside the cavity of the uterus, inside the wall of the uterus, or on the outside of the uterus. The ones inside the uterus can be hardest to remove, but that's not a hard and fast rule.

uffdakab:

What about progesterone as an alternative treatment to try?

Carla Dionne:

Dr. Broder – with a case like uffdakab describes, would you present the option of UFE?

chattcat:

What sort of fibroids are not candidates for embolization? I had a myomectomy 5 yrs ago for a large fibroid…grapefruit size or larger is how it was described to me…a pedunculated sort…I now suspect it is back…all the same old symptoms…is UAE a possibility for me?

Dr. Broder:

Yes, I would present UFE as an option, though one with a shorter track record than myomectomy.

Dr. Goodwin:

Pedunculated fibroids on a narrow stalk can frequently be removed fairly easily with a myomectomy.

rumarr:

Do fibroids always shrink at menopause. I'm 51 just starting with menopause symptoms. I've already had a myo 16 years ago.

Dr. Broder:

I'd also say that almost no one should have an invasive procedure for fibroids (UFE or surgery) unless they had significant symptoms and didn't get relief from (or didn't want to take) some hormonal treatment.

Dr. Goodwin:

Subserosal pedunculated fibroids can fall off inside the abdomen after embolization and cause problems for several months.

uffdakab:

When planning on a hyst for a large fibroid (4-month), how necessary is it to use Lupron for a couple of months to try to shrink it prior to surgery? Lupron scares me!

kim.ransdell:

Gulp…can ANY subserosal fibroids "fall off" or just the type on thin stalks?

Dr. Broder:

Rumarr, most symptoms of fibroids decrease with menopause, though it doesn't happen overnight. The closer you are to menopause, the more "watchful waiting", or perhaps treatment with progesterone or Lupron, is a good idea.

uffdakab:

Can you please speak more about the progesterone and Lupron?

Carla Dionne:

Dr. Goodwin - when subserosal pedunculated fibroids fall off after UFE, what kind of problems are presented and how are they usually resolved?

Dr. Goodwin:

Usually pedunculated fibroids, i.e. those on a stalk, are those that can fall off.

Dr. Broder:

Lupron is best suited for treating someone if their fibroids make it necessary to do an abdominal rather than vaginal hysterectomy. It is also useful if you're anemic from bleeding, and want to increase your blood count before surgery.

Dr. Goodwin:

When subserosal fibroids fall off patients can have abdominal pain, which can last several months.

rumarr:

Is Lupron safe? I've heard negative things about it.

Carla Dionne:

Dr. Goodwin – has this occurred with any patients that you are aware of?

chattcat:

And what happens to relieve the symptoms, Dr. Goodwin? Or do they eventually just go away on their own?

uffdakab:

Ditto on the Lupron safety question. I've heard horrible things about it.

Dr. Goodwin:

The number of patients who have experienced sloughing of subserosal pedunculated fibroids is very small measuring less than 1% as far as I know.

chattcat:

I took Lupron for several months prior to both surgeries, horrible experience and in both cases did not shrink fibroids.

hanapa1:

I had a myomectomy 16 months ago and a c-section 5 months ago. Should I wait more time before having UFE for another tumor?

Dr. Goodwin:

Patients are managed with pain medications. Symptoms will eventually resolve on their own.

barb450:

When you have a chance, I think a key question would be how long is an embo effective for? Do you have any data on that?

Dr. Broder:

Dr. Goodwin, is there any danger besides pain with a myoma that falls off after embolization?

kim.ransdell:

Would it be intermittent or constant pain? I've had a lot of pain post-UAE, but no one checked into whether the "giant" had fallen off.

Dr. Goodwin:

UFE is not contraindicated in a patient with your surgical history.

Dr. Broder:

To respond to the Lupron question: Lupron does have significant side effects, but there really isn't any indication that those last more than several months, and not everyone experiences them. So using it is a question of what the expected benefit is versus the possible risks.

Dr. Goodwin:

Most UFE failures have occurred at the outset. Delayed failures have been unusual. Post procedural MRI on Kim showed no sign of sloughing of the fibroids.

Dr. Broder:

I'd like to know why hannapa1 is having UFE – it sound like she's still having children, and UFE is generally not advised for those women.

Dr. Goodwin:

USA data on UFE is only 3 years old.

barb450:

I see. Thank you.

uffdakab:

Is there much data available on use of progesterone as an alternative to any of the procedures discussed?

Dr. Goodwin:

I agree that UFE is indicated in patients desiring fertility only under special circumstances.

Dr. Broder:

Responding to barb450, about 10-15% of women who have myomectomies end up back for more surgery for fibroids by the time they reach menopause. As Dr. Goodwin pointed out, UFE data is really too new to make a good comparison, but in the short run, recurrences don't seem to be any more of a problem than with a myomectomy.

Carla Dionne:

Dr. Broder – I think hannapa1 was merely asking if UFE was a viable choice for her at this time.

barb450:

Have you ever heard of that polyvinyl substance moving? Sorry, didn't mean to interrupt.

Dr. Goodwin:

PVA cannot migrate after embolization.

barb450:

whewwwwww

kim.ransdell:

Thanks, I'm a nervous patient, as you know. It was still "hangin' on" in December, so probably still is. I have had no studies done since then, besides an ultrasound in March. I'm just paranoid. :)

hanapa1:

After 6 months bedrest during my last pregnancy due to fibroid and preterm labor, I am not going to have any more children.

Carla Dionne:

Dr. Goodwin – what's the difference between polyvinyl alcohol particles and silicone particles?

Dr. Broder:

Progesterone can be used to treat bleeding from fibroids when it's given cyclically (typically 5-10 days per month). It can also sometimes help symptoms of pain, but it works much less well for "bulk" related symptoms, like pressure.

Dr. Goodwin:

PVA is a completely different plastic material than silicone.

barb450:

Doesn't progesterone cause tumor growth?

uffdakab:

Dr. Broder, does that mean it doesn't help much for shrinking, but can maybe help get a woman to menopause, when it will hopefully shrink? Just saw barb450's question – never heard that one. Please address.

Carla Dionne:

Thought so. :) Saw some "scare" stuff on a "medical" site (put out by a doctor) that indicated IRs were really using silicone for UFE and that women undergoing UFE would end up just like women with silicone breast implants – with all sorts of random immune disorders. Glad to hear it's a different substance entirely.

barb450:

I thought hormones did. Sorry if I'm wrong.

uffdakab:

Thought estrogen was the culprit in the growth.

barb450:

But my mom who had a total hysterectomy 20 years ago was put on some sort of hormone and had to stop because she was growing tumors.

Dr. Broder:

There is no evidence that progesterone (taken orally) causes fibroids to grow, although progesterone in the body may be one of the things that causes them to grow. That may not make sense, but there are many differences between "physiologic hormones" (ones the body make) and pharmacologic hormones (ones you buy in the drugstore). Estrogen has also been implicated as a cause of fibroid growth, but again, taking estrogen doesn't cause them to grow.

uffdakab:

Dr. Broder, so do you agree that natural progesterone is the way to go if taking progesterone? Can you address oral vs. cream?

Dr. Broder:

All menstruating women have high levels of both progesterone and estrogen, yet many don't get fibroids. You can't tell who will have them, or how big they'll be by measuring hormone levels either. There may be individual cases where hormones seem to cause fibroids to grow, but millions of women have taken birth control pills for decades, and their rate of having fibroids isn't any higher than women who never took the pill.

uffdakab:

I've heard of estrogen dominance being a major problem, and natural progesterone can help counteract that. Is that viable?

barb450:

But we already have fibroids so in that case would it make a difference?

Dr. Broder:

"Natural" progesterone has theoretical advantages, but in practice you just need to do what works. It's true that as women approach menopause, they ovulate less regularly, and ovulation provides the natural level of progesterone. So, no ovulation, no progesterone. As a result, many women in their forties have symptoms that can be resolved with progesterone treatment.

uffdakab:

Thank you Dr. Broder. Can that be measured somehow – to determine ovulation and progesterone levels? (hope I'm not hogging the floor here)

Dr. Broder:

As I mentioned, if your symptoms are bleeding or pain, then a trial of hormones (progesterone) may be worth it. After all, we're talking about taking medication maybe 2 weeks per month for 3-6 months. There is no really useful way to choose who to treat based on hormone levels. You may have normal progesterone values one month, but not another. And what's normal for you might not be normal for others.

uffdakab:

…and do you recommend oral or cream? Is natural available as an oral?

Dr. Broder:

It's easier to judge the dose with oral progesterone. I haven't used progesterone cream much, but I do have several patients who find it useful. "Natural" progesterone is available in oral form.

uffdakab:

Thank you very much, Dr. Broder. This info will help with my consultation tomorrow.

Carla Dionne:

To both doctors – I get asked a lot about the difference between a vaginal doppler ultrasound and a MRI when checking on fibroids pre-procedure. Both are used – which is better and why?

Dr. Goodwin:

UTZ provides better flow information. MRI provides better anatomical information.

Dr. Broder:

I would say that both have their uses – mainly in studying the response of fibroids to the procedure. I don't think it makes any difference to the patient, though. If the procedure works, she will feel better.

barb450:

Thank you also to both Doctors.

Dr. Goodwin:

MRI is better at diagnosing comorbid diseases such as adenomyosis.

uffdakab:

What is adenomyosis? (or is it too late to ask that question?)

Carla Dionne:

Can you explain what the significance of finding adenomyosis would be when considering UFE?

Dr. Goodwin:

Adenomyosis is deposits of endometrial tissue in the uterine wall which can cause bleeding and can be difficult to diagnose.

Dr. Broder:

Adenomyosis is when tissue normally found only in the lining of the uterus is found within the wall of the uterus. Significant adenomyosis reduces the chances that a myomectomy will work. I don't know if it affects UFE.

Dr. Goodwin:

UFE is probably not generally effective for the treatment of adenomyosis.

Carla Dionne:

So, if one has adenomyosis then perhaps UFE is not the best course of treatment for their fibroids? But if myomectomy also is unable to resolve this issue, what choices does a woman have left?

Dr. Goodwin:

UFE has worked in some women with both fibroids and adenomyosis, but there is reason to believe that their symptoms were principally due to the fibroids.

Dr. Broder:

Adenomyosis is a tough thing to be sure about – often it's not clear that it's the cause of symptoms until after a myomectomy doesn't work. I didn't say myomectomy never works if there is adenomyosis, only if the adenomyosis is really the cause of the symptoms, not the myomas.

Carla Dionne:

So adenomyosis can be silent and not cause any symptoms?

Dr. Broder:

Yes, often it causes no symptoms at all. Like fibroids, adenomyosis is common and so are problems like bleeding and pain. So it's hard to know if adenomyosis is the cause or an innocent bystander.

barb450:

alert

Dr. Broder:

I'm afraid I have to sign off, I have a patient in labor…

Carla Dionne:

Well, it's 7 p.m. and time for the chat to come to an end. I want to thank both Dr. Broder and Dr. Goodwin for joining us tonight. Transcripts will be made available and placed in the archives.

uffdakab:

Thank you so much doctors – and all you wonderful ladies.

Carla Dionne:

Dr. Broder – go deliver that baby!

Dr. Goodwin:

Thank you for the opportunity to communicate with all of you. I will be signing off now.

jcurtin:

Thank you, Carla, Dr. Broder and Dr. Goodwin. I look forward to reading the transcript. I was unable to participate due to prior commitments this evening.

Carla Dionne:

Sorry you missed us Jean. If anyone wants to hang around and chat awhile, you're welcome to do so. Goodnight.