Is there a particular group of women who get benign breast disease or is it just random?
Dr. Santen: It really is random. It’s a very common disease. Two thirds of women will have fibrocystic changes in the breast. These are the changes whether it’s fluid in cysts in the breast and a little bit of scarring around that. Now, not that many women have symptoms but it is a very common problem and it is not limited to any particular group of women.
Do active women who jog and exercise have a tendency to get more pain or not?
Dr. Santen: They might experience more pain when they are jogging and when they have a tight bra on than someone else might have. But they don’t have an increased incidence.
Does pain mean that it’s not cancerous?
Dr. Santen: Pain does not mean that it’s not cancerous, cancer can be pain and benign disease can be pain. We really have to look at what the tissue looks like under mammography and under ultrasound and physical examination to know whether it’s benign or malignant. Usually cancer is not painful and benign breast disease is more commonly painful. But that is not a way to distinguish one from the other.
Physically, can a woman tell the difference when she’s doing her monthly checks, or can you tell the difference? What’s the difference between a benign breast disease feel and a malignant cancer feel?
Dr. Santen: Physical examination really cannot distinguish benign from malignant. We have some clues, if it is very discreet with a very clear difference between what we feel and normal breast tissue that would be of concern that it’s cancer. If it’s quite hard or feels like a golf ball, feels rock hard, that also would make us concerned. On the other hand if it’s very soft and not very well defined it would suggest to us that it is not cancer. But this is not good enough, we really need to use the other techniques to be sure and while we might be suspicious on physical examination, or a woman might be more suspicious we really need to know for sure. And the only way is with additional tests.
Is benign breast disease inherited?
Dr. Santen:It’s not inherited that we know about. Again, since it’s so common we believe that this probably is a spectrum of how normal breast tissue responds to hormones and since the hormones fluctuate in all women there is a spectrum then, some women having more lumps and more pain, other not. But we don’t recognize it on a inherited basis.
If someone has benign breast disease will that eventually lead to cancer or is there any connection there?
Dr. Santen:There is usually no connection but certain types of benign breast disease have a much higher risk of a woman developing breast cancer over a period of time. And that represents about five percent only of women that have benign breast disease that fit into the categories of high risk.
What kind is that?
Dr. Santen: There are really three. One is a lesion that’s seen under the microscope, and in fact all of these are under the microscope. One is called benign proliferative disease, it means that the cells under the microscope are growing more rapidly than would be true in other benign breast lesions. Now the first type is proliferative disease where all the cells are normal, we just call this benign proliferative disease. The next stage is that the cells not only are growing more rapidly but look abnormal, they are not typical. So we call this atypical benign hyperplasia. Both of these lesions occur in the ducts, the tubes that lead out of the breast. So more specifically we say benign atypical ductile, due to the duct, hyperplasia. Hyperplasia means rapid cell growth. The third is a lesion called a fibroatanoma but it’s a very specific type of fibroatanoma that under the microscope is complex and has associated with this increased growth of the cells around it. So it’s benign typical ductile hyperplasia, atypical ductile hyperplasia and complex fibroatanomas with proliferation around it. These three specific lesions.
Does breast size matter, if you have a large breast do you have a tendency to have more benign breast disease or does it matter?
Dr. Santen: It really doesn’t matter. We tend to think that women that have large breasts and are somewhat overweight might have more estrogen or female hormone production and therefore might have a little bit more stimulation of tissue based on their estrogen formation but we don’t know that for sure. So we really don’t believe that there are any particular body types or shapes or other risk factors for this. It’s a common problem affecting many women.
What causes these cysts? Are they tumors or cysts?
Dr. Santen: These are benign and a tumor basically is usually thought in someone’s mind to be cancer. So a cyst is not cancer. The best way to think about this is that the breast is there ultimately to make milk and the milk has to come out through ducts so that it comes out the nipple and one can nurse a child. If that duct becomes blocked it will fill up with fluid and it is very much like a balloon filled with water. It is a round area filled with fluid that represents a blocked duct. That’s the cystic component of fibrocystic disease. The area around that blocked duct then has the tendency to form scar tissue and that’s the fibrous component of the fibrocystic disease. So this is all benign, the cyst is fluid, some examples of that on ultrasound, it almost looks like taking a picture of a balloon filled with water where the edges are very sharp and this is because of the blocked duct with fluid contained within that duct. A cyst is a benign condition in which a tube becomes filled with fluid and it is the tube that generally allows the milk to come out from the breast.
How can you avoid them, is there any way that you can prevent yourself from having benign breast disease?
Dr. Santen: Probably not, but we suspect that coffee makes benign breast disease worse and many women when they reduce the intake of caffeine in coffee will have less pain from their fibrocystic breast disease. So it might be possible to prevent symptoms by reducing one’s caffeine intake. But we don’t know that for sure either.
When you say it reduces the symptoms, does it alleviate the disease itself or does it just stop the pain?
Dr. Santen: The disease itself is lumps and pain. Now there are some women when they reduce their caffeine the lumps get better and the pain gets better. Now how often do the lumps get better on their own with no treatment, it does happen. So we don’t know for sure whether the caffeine avoidance is actually directly causing reduction of the lumps and the disease.
What therapy do you to get rid of benign breast disease?
Dr. Santen: This is a good question because it really relates to how severe the symptoms are. Eighty five percent of women will be benefited by relatively mild treatment. So I always start with the simplest measures, avoid coffee first, then use Vitamin E which works in some women in a relatively low dose, and in another group of women a medication called linoleic acid is beneficial. Surprisingly this is found in tablets called evening primrose oil capsules. It basically is something called linoleic acid. Eighty five percent of women will benefit from those treatments and will not need anything further. Now we’ll often use mild pain relievers like Tylenol or Motrin, and in a woman that has a lot of pain later on in the menstrual cycle and that woman tends to gain weight because of fluid retention we can also use water pills to relieve some of the body fluid.
Then finally simple measures like a soft bra that would relieve the mechanical or local compression pain. Now what about the other fifteen percent of women that have rather severe symptoms that don’t go away with these lesser measures. We have several medications, one is a drug that lowers the level of female hormones and this is called Danazol and it’s a drug which is in fact quite effective but is associated with some side effects, mainly weight gain, and often a bit of acne or facial oiliness. The second medication is a drug which blocks female hormone affects on the breast and this is the same drug that can be used for breast cancer, a drug called Tamoxifen. The third drug is a medication that lowers the level of the hormone that causes milk production. This is a hormone called prolactin and this drug called Parlodel lowers the level of prolactin in the blood and then can relieve breast pain because of this hormonal effect on the breast. So these would be the agents that we would then use starting with Danazol then going to the anti estrogen Tamoxifen and then later to the use of Parlodel.
What if that doesn’t work?
Dr. Santen: If that doesn’t work we have two other options which are not used very often. We know that women when they go through the menopause generally have complete relief of pain. In other words if we lower the female hormones totally the pain is better. We have a drug that by injecting it once a month basically causes menopause to occur temporarily. We call this medical menopause. Now the difficulty with this is if we lower the female hormone levels completely you then have the same problems of loss of bone and hot flashes that would occur in a post menopausal woman. So the way to do this is to shut down the ovary with a medication called Lupron Depot and then add back a small amount of female hormone which is given constantly via a patch on the skin. So this is the next step and we wouldn’t use that very often.
Does a woman ever need to have surgery because of benign breast disease?
Dr. Santen: In every clinic seeing women with benign breast disease there is an occasional patient that the disease is severe enough that one has to consider removing breast tissue surgically to relieve the symptoms. We don’t like to do this because it’s very drastic and as you can imagine it would only be done after a woman does not respond to each of the other therapies that are done in sequence usually over a period of a year and a half to two years. So we do this with a great deal of thought and consideration and not very often.
Is this something that can reoccur?
Dr. Santen: The majority of women when they respond to the treatment the disease is better without the treatment after that. Usually the disease does not go away completely. If you would think of someone that is having pain that is ten on a scale of ten and the medication then relieves the pain down to zero, when it comes back it might just be a two, or a three, or a four so it often comes back but it may not be as severe as before the treatment was started.
Is there a certain time of the month when the pain is worse?
Dr. Santen: If one realizes that the pain is worse when the hormones stimulate tissue, we know that female hormones go up in the middle of the month at the mid part of the cycle, then they go up again just prior to the menstrual period. So women most commonly will have pain just before the menstrual period or the pain will be for three, or four, or five days in the middle of the month. It will be at its least usually, during the early part of the menstrual cycle. This is for most women. Now as the disease becomes worse the pain then becomes continuous and is not just cyclic over the month. But for eighty percent of women it is usually related to the menstrual periods.
What do you recommend to a women who has benign breast disease?
Dr. Santen: The most important thing is to follow the recommendations about mammography screening. Because the key is to distinguish malignant from benign and without mammograms and perhaps ultrasound one cannot distinguish. So the key really is early diagnosis.
If a woman knows she has benign breast disease what do you tell her to do?
Dr. Santen: If she’s having symptoms and she would like those symptoms treated then she needs to see someone who is interested in and knows how to take care of benign breast disease. Usually in this country that is a gynecologist or maybe a surgeon and if it is more complicated and not responding very well to treatment, then the place to be is in a specialized clinic where there are a group of people working as a team trying to deal with the problem.
Can benign breast disease be treated?
Dr. Santen: Benign breast disease most definitely can be treated. In the past benign breast disease was simply ‘let’s make sure it’s not cancer, if it’s not cancer you should be glad that you don’t have cancer and live with the symptoms’. We are now saying this is a problem and we need to learn better how to treat it but we have some ways of treating it, so let’s consider this as a medical problem and focus on trying to treat patient rather than saying ‘it’s not cancer let’s forget about it.’