Cross Post of Episode 1 of our new project The Endometriosis Podcast! Dr Fogelson and new co-host Libby Hopton discuss new literature on endometriosis and answer question from the endometriosis patient community. Topics include endometriosis research production, BPA and endometriosis incidence, outcomes after resection of bladder endometriosis, and more!
Sponsored by TrueLearn. For a 10% discount on your order use the code “academicobgyn”
Merry Christmas and Happy Holidays from Nicholas Fogelson and Academic OB/GYN! Dr. Fogelson is available for clinical consultation at the Pearl Women’s Center in Portland, OR at 503-771-1883. He is a better gynecologic surgeon than he is a rapper. And he’s not completely terrible at rap so there’s that.
Last night the Portland OB/GYN Society, of which I am the current president, had the honor of hosting Dr Philip Sarrel to speak on the important topic of replacing estrogen in women who have experienced surgical menopause at an early age. His talk was fantastic, and illustrated the extreme importance of replacing estrogen in any woman who has experienced an unnatural loss of estrogen early in her life, and the ongoing benefit of estrogen replacement after menopause as well. I encourage you to review this video, which describes the findings of his research and his point of view, which I entirely agree with.
What was truly striking to me was the number of women who have had their ovaries removed at an early age. It saddens me, as I know that in many cases this is because of pelvic pain and endometriosis. While oophorectomy often does improve and in some cases even eliminate endometriosis pain, with proper resection of the the disease we can often achieve substantial and even complete pain relief while preserving ovarian function.
This is definitely worth a watch.
Nicholas Fogelson, MD
140 NW 14th Ave
Portland, OR 97206
Dear President-Elect Trump,
I am writing to reach out to you, something I have never been inspired to do for a president-elect in the past. First, congratulations on your hard fought victory, and to your family. It was a surprise for many of us.
While it was probably a happy morning in your campaign and family, it was a pretty dark morning in my household. Our family was very supportive of Secretary Clinton, and felt that she was the best choice for the president. In particular, my wife was a ardent supporter, making hundreds of calls of the Secretary’s behalf. As a Canadian, she was quite looking forward to a continued progressive movement in our country.
We have lived through disappointing elections before, but this one is different. Unlike the general discontent we felt when Bush defeated Gore, today there is a lot of fear. Fear not that the country will not go in the political direction we wanted, but fear that the country will go into hell itself. The person you presented yourself as during the campaign was not a person who seemed to be able to be an effective President. Particularly your presented views on muslims, your seemingly sexist and misogynistic comments towards women, and your views towards Mexicans as well. These things just don’t seem to be what our country should be moving towards, no matter whether you are a Democrat or Republican.
It has been my feeling and hope that during the election you have created this image for the pure purpose of galvanizing a certain segment of society and achieving the victory you now have. It is my true hope that now you are President-Elect, that these incredibly difficult positions can be shed and you can focus on a productive and positive future for our country. It is my hope that these things we saw were actually a very purposeful act, a charade of sorts, and not truly who you are as a person.
My wife and I are both physicians. I am a sub specialist surgeon in the care of women with endometriosis. For the first time in our lives, we are literally considering whether or not the United States is where we want to live our lives. If you end up being a relatively effective conservative president that pushes Paul Ryan’s agenda more or less, we will go on being Democrats who probably vote against you in four years. But if instead you normalize racism, promote a military stance that invites nuclear war, and make it generally acceptable for people to be awful human beings, we would have to consider leaving. And it wouldn’t just be us. It would be a lot of people like us, people who can’t associate with the values you promoted during the campaign. And that would be a terrible thing for our country.
I truly wish you and your family the best, and for success in your presidency. You will now be the most powerful person in the world. I’m sure that already this weighs on your shoulders. Though I voted against you, you are now my President. Please be worthy of that title.
Nicholas Fogelson, MD
Dr Nicholas Fogelson of Pearl Women’s Center in Portland, OR demonstrates resection of severe bilateral pelvic endometriosis with superficially invasive anterior rectal wall disease.
Dr Fogelson is available for clinical consultation through Pearl Women’s Center in Portland, OR. 503-771-1883.
As many of you know, I spend a fair amount of time involved in social media outlets, particularly with efforts to support and educate women struggling with endometriosis. Women with this condition are fortunate to have access to a variety of very active and vigorous advocacy and education groups, and in these groups there is a lot of great information. At the same time, I occasionally note in these groups that there can be some dogmatic views, and at times I think that there is some incomplete information being passed around. Perhaps the biggest area I see this in when the topic of hysterectomy for endometriosis is discussed.
Typically the exchange goes like this:
“I have been struggling with endometriosis for X years and have Y symptoms, and my doctor has recommended a hysterectomy.”
Very quickly (within minutes) there will be the response
“Hysterectomy does not treat endometriosis”
“HYSTERECTOMY DOES NOT TREAT ENDOMETRIOSIS!!”
This always rubs me the wrong way. This is not because it is wrong, but because it is incomplete. Read more…
When I talk to my patients, one of the greatest concerns I hear is regarding the fear that they might get a cancer at some point in their life. It is a very reasonable fear, as cancers of the female reproductive tract and breasts are not as rare as we might like. Perhaps educated by Angelina Jolie’s announcement of her BRCA mutation in 2013, many women now ask me about BRCA testing. In the past I referred to genetic counseling for this, but more recently I have become more educated on exactly who qualifies for testing, and send quite a few BRCA tests out of my office myself.
Across the board, somewhere between 1 in 8 and 1 in 10 women will get breast cancer over the course of their life, if they live to an age of 85 years old. Fortunately cure rates are high because we have many screening methodologies that are quite effective at finding it before it has spread widely, allowing for relatively straightforward treatments that are usually curative. These screenings include typical mammography, as well as high risk screening methodologies like breast MRI.
Ovarian cancer is far less common than breast cancer , affecting about 1 out of every 100 women, though it is also far more deadly. While breast cancer is usually caught early enough to be cured, ovarian cancer is usually found when it is already at an advanced stage, and even with treatment significantly shortens the life of women affected by it. We have investigated various strategies to screen for ovarian cacer, including ultrasounds and blood analyte testing (ie CA125), but to date no screening methodology has been shown to be truly useful in detecting the disease early, and unfortunately most women diagnosed eventually die from complications of the disease.
It is my impression that physician are very good at screening for breast cancer, and aware of women at high risk for ovarian cancer. This is a good thing. What we are not great at is identifying women who are at the highest risk of developing the disease : those that have heritable mutations such as BRCA mutation.
The most common heritable mutation for breast and ovarian cancer is BRCA 1 and 2 mutations. BRCA 1 is present in 2-3% of the general population, in 8% of women of Ashkenazi Jewish descent, and in 4% of Hispanic women. BRCA 2 is present in 2% of the general popuation, and in 1% of women of Ashkenazi Jewish descent, and in 3% of the African American population.
If a woman has a BRCA 1 mutation she is has a 60% chance of developing breast cancer by age 70, and a 50% chance of developing ovarian cancer.
If a woman has a BRCA 2 mutation, she has a 50 to 85% chance of developing breast cancer, and an approximately 30% chance of developing ovarian cancer.
Women that have these mutations can dramatically reduce their likelihood of dying from these cancers by doing advanced screening, and in many cases can consider removal of the potentially cancerous organs once they have completed childbearing (something brought into the mainstream awareness by Angelina Jolie a few years ago, who had a prophylactic mastectomy and oophorectomy for this reason.)
So given this important information, why are physicians not very active in ordering these tests?
The biggest reasons are two fold: 1) the tests are pretty expensive, with list prices between 2 and 4 thousand dollars depending on the lab and 2) the criteria under which these tests will be paid by insurance have been shifting in the last few years, and it has been hard to tell who will have their tests paid for and who will not. It is not worthwhile (or cost effective) to screen every woman for BRCA, but for women of high risk is is not only useful but also cost effective. But just how much risk is enough, and how do we quantify this and understand who will be covered for testing and who won’t? It is this question that keeps many qualifying women from getting screened in many physician’s offices today.
Fortunately, these issues have been greatly simplified in the last two years.
In general, BRCA testing will be covered by insurance for women who meet NCCN (National Comprehensive Cancer Network) guidelines for testing, which include:
1) women who have a direct relative positive for a BRCA mutation
2) women who have breast cancer at an age less than 50
3) women who develop triple negative breast cancer at an age less than 60 (i.e. negative progesterone receptor, negative estrogen receptor, HER2 receptor negative)
4) women who have had two different breast cancers
5) women who have a first degree (ie mother / sister) who had ovarian cancer _or_ who have a second degree relative (ie grandmother / aunt ) with ovarian cancer.
6) women who have two first degree relatives with breast cancer at any age
7) women who have one relative who had breast cancer at an age less than 50
Women with family histories of pancreatic cancer may also qualify, as this disease is also associated with BRCA mutation in some cases.
For women that meet these guidelines, testing should be largely covered by insurance, and in most cases are paid entirely by insurance. One strategy for appopriate testing is to routinely refer to genetic counseling, which if easily available will lead to the patient getting excellent information and counseling prior to having a test run, if appropriate. This strategy works great where there is readily available appointments, and with patients that are likely to follow a doctor’s recommendation to go to such a visit. There is, however, a subset of patients that will for whatever not reason not follow a recommendation to go to a genetic counselor. I think in many cases the concern for a heritable cancer is something that doesn’t directly influence a patient’s life, and they put addressing in on the back burner. As such, direct testing may lead to a greater likelihood of actually testing appropriate women, and is reasonable to consider in some practices. In the end, I think the most important thing is that physicians keeps the issue in front-of-mind, and appropriately manage patients with a strategy that makes sense for each individual patient.
In the last few years, I have begun to test far more women than I used to. While I have only found a single woman who actually had a BRCA mutation, I have consistently found that women who are tested and are found to be negative really appreciate having had the opportunity to be tested, and feel great reassurance that they do not have the mutation, which is of value in itself.
So if you are a physician and are not considering testing appropriate patients for BRCA, make it a more prominent part of your practice, whether that be through direct testing or routine referral to genetic counseling. If you are a woman who has a concern about your family history of breast or ovarian cancer, please ask your doctor if its appropriate for you to be tested, either directly or through referral to a genetic counselor. Because while screening the general population for the actual cancer is important, finding the women who are at the highest risk is also an important part of care.
Dr. Fogelson practices gynecologic surgery and general gynecology at Pearl Women’s Center in Portland, OR. He can be reached at (503) 771-1183, or http://www.pearlwomenscenter.com./
Not surprisingly, this post has gotten a lot of interest, mostly negatively from the genetic counseling world. The gist is that that genetic counselors think it a terrible idea for a non-genetic counselor to order these types of tests without referring to them first, which I did suggest in the original text.
In many ways, I agree with them. They have years of training and a deeper understanding of each potential mutation than most physicians have (absent physicians with genetics fellowships). They also have more time to talk to patients about these issues, and thus can be more thorough in their counseling. As such, the optimal course for patients who are considering BRCA testing, or any other genetic counseling, is to see a genetic counselor first. Some insurers (Aetna I’m looking at you) even require it.
We must also recognize, though, that these genetic counselors see the world through a different lens than a physician that refers to them. They see patients that come to see them and do a great job with them. What they don’t see are the women who had discussions with their doctors about seeing genetic counselors, but that never actually came to see them.
In most cases, a concern for a heritable cancer syndrome develops because of a routine history with a thoughtful physician. It is only the minority where a patient actually comes in with the expressed concern about a heritable cancer syndrome. So in most cases, it is the physician who is bringing up the issue and saying “hey we should consider this issue”. Now this consideration can be referral to a genetic counselor, or it may be considering if direct testing is appropriate. What I know from experience, is that if I pass it off to a genetic counselor, a substantial number of patients are going to take my advice to go se them and not act on it. After all, a genetic predisposition isn’t a sickness that a patient can feel. If somebody has chest pain and I refer them to a cardiologist, they are going to go. But if they have a completely unseen and unfelt predisposition to some future disease, maybe they won’t. In fact, definitely some won’t. So the hard line everybody has to see a genetic counselor prior to testing is missing this point, in my opinion. I think that it is entirely reasonable to ask a patient if they would like to see (or even recommend that they see) a genetic counselor, and also entirely reasonable that some patients may be tested directly. After all, individualized care is what we do.
In the end, I think this question is a bit of a distraction, and not really the point of my article anyway. What is important is that physicians think about this issue more. Many physicians don’t think about it much at all, and may neither refer to a genetic counselor nor order appropriate testing. And that is something worth trying to change.
In light of this issue, I have edited the original article a bit, as I do think it was a little too much against sending to genetic counseling, which was perhaps misguided.