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Gigantomastia

Cheri Casciola, IBCLC, RLC
Chandler AZ USA
From: LEAVEN, Vol. 41 No. 3, June-July 2005, pp. 62-63.

Gigantomastia is a rare connective tissue disorder, about which little is known, that affects the breasts. Only a handful of cases have been documented during the past century. Each case has some unique twist, but the underlying denominator is increased breast tissue in gigantic proportions, thought to be caused by sensitivity to prolactin. It appears to pass through family lines, both from mother to daughters and from mothers, through their sons, to granddaughters. Some women also experience insulin resistance, their bodies becoming marked with brown spots.

A number of different cycles can signal the breast tissue to begin to grow over abundantly: the onset of puberty, pregnancy, and/or birth. Not every woman will experience all three.

At the start of puberty, some young females with little or no breast development can grow three or more cup sizes within a few days.

This can also occur during pregnancy. Either at the onset of pregnancy or between the 16th to 20th week of gestation, these mothers experience an unusual growth of breast tissue, above and beyond what is considered normal. With each subsequent pregnancy, the tissue growth continues from where it left off the time before.

Mothers who have tissue growth occurring in such gigantic proportions post birth may mistake this for an overabundant milk supply or engorgement, but quite the opposite has occurred. The swelling is actually in the connective tissue. This can compromise long term milk supply, which, in turn, threatens the likelihood for successful lactation.

The swelling generally creates intense heat. The breasts can become fireballs, turning red, itchy, and feverish. The skin can actually begin to peel. Intense swelling in the connective tissue of the breasts can cause the milk ducts to become pinched off, and damage to the milk ducts can lead to plugged ducts and mastitis. Milk transfer from mother to baby is difficult because the tissue is rock hard and the nipples are completely flattened. The newborn is unable to latch on and suckle effectively, thus threatening the milk supply because breasts only make more milk when milk has been removed.

Reverse Pressure Softening (see page 63) may be of help in assisting the baby to latch-on. The open wounds on the nipples caused by blisters and cracks from improper latch-on can also lead to mastitis and/or abscesses. A pump might do further damage and even hand-expression may be unbearably painful. For some women who have Gigantomastia, the swelling never leaves the breast tissue and mastectomies or breast reductions may become necessary. Some have reported excess gains of 40 pounds of breast tissue from the onset of pregnancy. Others have severe atrophy set in after the breasts involute (revert to a pre-pregnancy state). They still have the same amount of skin, but the subcutaneous fat cells are no longer able to fill them, leading to an "empty saddlebag" appearance.

I have personally experienced this debilitating condition. At puberty I went from being as flat as a board to a "C" cup in one month. The first time I conceived, I went up two cup sizes in a matter of days. The same thing happened with the next three pregnancies.

In my case, the most enormous growth occurred after giving birth. Normal swelling began within 24 hours postpartum, becoming extreme during the next 12 to 24 hours. With my first birth, I went up three cup sizes during the post birth period, after my second childbirth, I went up six cup sizes, after my third birth it was 10 cup sizes, and after my last birth I went up nine cup sizes.

Beach towels were rolled up and placed underneath my breasts for support, while four elasticized cloth bandages were wound around to lift and hold the contraption in place. My breasts were extremely heavy, weighing approximately ten pounds each. Every vein was raised, and as nature would see fit, I never leaked.

I tried prickly pear cactus pads, shredded potatoes, and cabbage leaves to reduce the swelling. None of these worked. The only relief, if one could call it that, was soft gel ice packs and old fashioned bags of ice, which the heat of my breasts would melt within moments of contact.

This heat was so intense that I never even felt the coolness of the ice on my skin. I had to sleep on my back with the ice packs, which I would continually rotate, on my breasts. Fortunately for me, the swelling would begin to subside seven to 10 days later. The breast tissue would stay around an "E" to a "G" cup for the next year, depending on the birth order.

As far as my nursing relationship went, during the first two weeks it was rough. It was hard to snuggle a chubby little body with 20-pound "bowling balls" attached to my chest. The skin was so taut that the nipple became nonexistent, making latch on all but impossible. Blisters covered my nipples and areolas.

Breastfeeding did not relieve the swelling since the swelling occurs in the connective tissue itself. Instead, it just brought on more heat and more swelling from the normal engorgement that occurs for some women when the mature milk begins to come in. A deep, indescribable, "phantom like" pain set in and still haunts me periodically to this day.

For me, severe atrophy set in at about one year postpartum. My breasts diminished in size to an "AA." During ovulation and menstruation, the tissue swelling moves to other parts of my body, to my knees, ankles, toes, and fingers. I am unaware of others with Gigantomastia having this issue, but each case is different.

References

Craig, Randall, 2001. Personal communication.
Craig, Randall, 2005. Personal communication.
Cotterman, J. Too Swollen to latch on? LEAVEN 2003; 39(2):38-40.
El Boghdadly, S. et al. Emergency mastectomy in gigantomastia of pregnancy: A case report and literature review. Dept of Surgery and Obstetrics and Gynecology. Riyadh, Saudi Arabia. July 7, 1996.
Encyclopedia of Medical Imaging Volume 2: Medical Imaging, s.v. "Macromastia."
Lafreniere, R., Temple, W., Ketcham, A. Gestational macromastia. Am J Surg 1984; 148(3):413-18
Lawrence, R. and Lawrence, R. Breastfeeding: A Guide for the Medical Professional, 6th Ed. Philadelphia, Pennsylvania: Mosby, 2005.
Neville, M. and Morton, J. Symposium: Human lactogenesis II: Mechanisms, determinants and consequences. Physiology and endocrine changes underlying human lactogenesis II. J Nutr 2001; 131:3005S-3008S.
Virtual Grand Rounds in Dermatology, A 26 year old woman with macromastia, presented by David Elpern MD., Williamstown MA, USA, on November 29, 2004.
Zargar, A. et al. Unilateral gestational macromastia in an unusual presentation of a rare disorder. Postgrad Med J 1999; 75:101-04.
Zienert, A. Macromastia in pregnancy: Normal or a complication? Zentralbl Gynakol Z 1990; 112(20):1303-07.

Cheri Casciola, IBCLC, RLC, has been an LLL Leader for seven years and is currently a District Advisor. She became aware that she had something beyond "normal engorgement" after attending monthly LLL meetings. Over the course of Cheri's third pregnancy, her Area Professional Liaison, Sharon Olson, helped her find the term "gigantomastia." With this new word in hand, Cheri went on to learn more about this condition from Dr. Randall Craig, obstetrician-gynecologist and fertility specialist. She breastfed her subsequent children successfully. She resides in Chandler, Arizona, USA with her husband, Don, and their children. They will soon be adopting a sibling pair. Send ideas and articles for "Keeping Up-to-Date" to Contributing Editor Norma Ritter at 58 Antler Road, Big Flats, New York 14814 USA, or email LLLnormaR at gmail dot com.

Last updated May 20, 2007 by jlm.
Page last edited .


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