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A Male With: male zuska's disease
I am consulting with doctors and surgeons but am still really scared. I'm a 32 year old male. And no one has explained to me what is going on. 6 months ago what first seemed liked a zit formed on my right nipple. I have had inverted nipples since birth. When the 'zit' became more like a cyst and pushed out in the skin on the bottom of my nipple at the start of the year I didn't really know what to do. I've not had any jobs that come with health insurance so I've only seen doctors in the past in ER situations (which weren't ever really severe other than the run of the mill accidents.) Because of the Affordable Care Act I finally was able to purchase insurance and see a doctor for this cyst after it came and disappeared twice between Jan-March. In April it swelled so huge that my wife tried to force me to go to the ER but my new health coverage was set to start on April 1st so I wanted to wait. The cyst burst after she finally talked me into going to an Urgent Care affiliated with my new doctors office. It was leaking and they put me on heavy, heavy antibiotics. Well, from March through now it has NEVER stopped leaking. Sometimes a lite scab covers it or something, but a shower or just bumping it causes it to reopen and begin leaking. Especially when I sleep--I can only get comfortable on my belly. I finally saw my new Primary Care Doctor but he was very busy. He made me an appointment with the surgeon. Told me I had "MALE Zuska's Disease" and mentioned Subareolar abscess .
Because the doctor didn't explain this to me really and gave me a referral to see a surgeon where he said it would have to be removed... I'm just scared. Is this related to breast cancer? What kind of surgery does it take for this? I mean how does this even happen with a man? I'm really confused. And much more anxious.
I'd be eternally grateful if anyone with the medical knowledge could help me understand what to expect when I finally get the referral to see the surgeon instead of all the what ifs terrorizing me.
thanks so much,
Neil
Because the doctor didn't explain this to me really and gave me a referral to see a surgeon where he said it would have to be removed... I'm just scared. Is this related to breast cancer? What kind of surgery does it take for this? I mean how does this even happen with a man? I'm really confused. And much more anxious.
I'd be eternally grateful if anyone with the medical knowledge could help me understand what to expect when I finally get the referral to see the surgeon instead of all the what ifs terrorizing me.
thanks so much,
Neil
I am not a male (by the way, your profile says "female" but it's clear you aren't!) but I wanted to thank you for your complete and understandable information about Zuska"s. I'm a retired nurse, and if I learned about Zuska's way back when, I sure don't remember it. I'm guessing you've either graduated from nursing school or are very close to it, so congratulations. We definitely need more men in the field and have for a long time! Anyway, you did a great job explaining this disease and I hope Akanat reads it and is thankful for it, too.
I also liked your advice regarding patient-doctor relationships and hope Akanat follows it. I'm a firm believer in the patient being informed, allowed to ask question and get answers,advocating for themself and taking responsibility for their own body and care. Sometimes that means finding another doctor, as you said. Thank you for addressing that issue, too.
I'm sorry to hear about your issues with Zuska's and hope the flare ups continue to be fewer and farther between. I hope your treatments continue to be successful.
Wishing you all the best,
nc
PS: You're close to my son's age, so maybe that's why I felt I had to write to you! Or it's just the nurse in me!
I also liked your advice regarding patient-doctor relationships and hope Akanat follows it. I'm a firm believer in the patient being informed, allowed to ask question and get answers,advocating for themself and taking responsibility for their own body and care. Sometimes that means finding another doctor, as you said. Thank you for addressing that issue, too.
I'm sorry to hear about your issues with Zuska's and hope the flare ups continue to be fewer and farther between. I hope your treatments continue to be successful.
Wishing you all the best,
nc
PS: You're close to my son's age, so maybe that's why I felt I had to write to you! Or it's just the nurse in me!
Hi there. I'm really sorry to hear that you are going through this. I also have Zuska's and have had 7 operations to treat it, not to mention many antibiotic cocktails! Each one buys a little more time before I have another flare up, but it's quite expensive and exhausting. I've been abscess free for about a year but am experiencing a recurrence right now. :/ I will share with you what I know (in laymen terms). Unfortunately, there is a lot of medical terminology used on websites containing information about Zuska's and it can be a lot to wade through. This is because things happen on a cellular level. I began nursing school in 2010 and have figured most of this out.
I'm really surprised and impressed that your general physician (GP) actually knew what Zuska's is. Most don't - and that even goes for OBGYNs. From experience, I will tell you not to ever feel obligated to remain under the care of a doctor who doesn't have time to spend with you. If you aren't feeling adequately informed, it's time to move on when you seek treatment in the future. I'm not saying that they are "bad physicians", but there is a bit of a power imbalance in the patient-physician relationship that can lead a patient to feeling guilty for taking up too much time or asking questions. Ultimately, the doctor does not live in your body and isn't trying to treat your symptoms at home. You need to be well informed. How can you possibly make decisions about your health care if you aren't? Most physicians are accommodating if a patient can express their concerns. Another thing I will tell you specifically about Zuska's is not to EVER, under any circumstances, allow a GP to aspirate a lesion. Aspiration (known as FNA for Fine Needle Aspiration) is when the doc inserts a needle to draw out fluid. The fluid is generally tested in a lab for cancerous cells. However, sticking a needle into an area of the body that is inflamed is serious cause for a secondary bacterial infection. Then you will really have a mess!
I went to my GYN in 2007. I've been through everything you can think of from FNA to ultrasounds, mammograms, and even a ductogram. I was actually turned away from a mammo appointment based on my age (I was 28 at the time and will be turning 35 soon). The first ultrasound technician I saw said I had "normal anatomy." I saw 7 docs total, 3 of them were surgeons. I left many appointments in tears because once my tests came back benign (non cancerous), I was told my breasts were normal. I had bloody nipple discharge, lumps, bruising, and eventually retracted nipples. It was three years before I was diagnosed. I'm telling you this so you can be your own advocate. It's a chronic condition that is very stressful and painful. You need to get it treated. Being male, this will likely be a little easier because you won't be labeled "hormonal" and treated with birth control. They won't say you simply have fibrocystic breast disease. My fingers are crossed for you!
Zuska's actually causes the ducts (which branch out to carry fluid throughout the breast tissue) to form cells like our skin cells (squamous epithelial cells). Not only do these cells have no place in a duct, they begin to reproduce very quickly (metaplasia). In a sense, this part is similar to how cancer reproduces. But do NOT worry... these cells are normal, unlike cancer cells... just not for that part of the body. In fact, Zuska's does not predispose you to cancer at all. Whew! Once the ducts fill with these different cells and produce keratin (a cream cheese looking substance), they clog and break. Fluid from the ducts gets into the surrounding tissue. It's not suppose to be there and the body sees it as something foreign, even though it's really your own fluid. We all generate some fluid in our ducts, even males. Ducts are designed to absorb this fluid, but can't because of the skin like cells and keratin blockage. The body's response is to encapsulate the fluid and send immune cells in to destroy. This causes puss... puss is really just tissue that has been liquefied with dead cells. Then you basically have an infection that isn't even caused by a bacteria at all (aseptic).
You said you are leaking fluid and I'm going to assume that this is from the "lesion" itself and not the nipple (because you mentioned a scab). To me (and I'm not a doctor), it sounds like you may have formed a fistula. A fistula is a tract, like a sinus, that carries the fluid away and out of the body. It's normal that the body will attempt to remove something foreign in this manner. The problem is that now you have a good entry point for bacteria and could end up with recurrent bacterial infections. You will hear the term(or may have had by now) incision and drainage or I&D. That is simply surgically draining the abscess. Well... not simple. It's painful and usually doesn't cure the problem. Removing any affected ducts just may work. It's a toss up with Zuska's... there's really no telling. I've had ducts removed and I'm still experiencing abscesses. But every time, I get a longer break from the next flare up.
I hope this helps. I know what it's like to be the crazy person in the bathroom 12 times a day at work checking my nipples and then looking at every breast cancer website out there. Please know that Zuska's is not cancer. The cells are not suppose to be there but they are still a normal type of cell. Let me know if you need any more information. I'm hoping I didn't confuse you any further.
Good luck with your treatment - I hope it goes very well.
I'm really surprised and impressed that your general physician (GP) actually knew what Zuska's is. Most don't - and that even goes for OBGYNs. From experience, I will tell you not to ever feel obligated to remain under the care of a doctor who doesn't have time to spend with you. If you aren't feeling adequately informed, it's time to move on when you seek treatment in the future. I'm not saying that they are "bad physicians", but there is a bit of a power imbalance in the patient-physician relationship that can lead a patient to feeling guilty for taking up too much time or asking questions. Ultimately, the doctor does not live in your body and isn't trying to treat your symptoms at home. You need to be well informed. How can you possibly make decisions about your health care if you aren't? Most physicians are accommodating if a patient can express their concerns. Another thing I will tell you specifically about Zuska's is not to EVER, under any circumstances, allow a GP to aspirate a lesion. Aspiration (known as FNA for Fine Needle Aspiration) is when the doc inserts a needle to draw out fluid. The fluid is generally tested in a lab for cancerous cells. However, sticking a needle into an area of the body that is inflamed is serious cause for a secondary bacterial infection. Then you will really have a mess!
I went to my GYN in 2007. I've been through everything you can think of from FNA to ultrasounds, mammograms, and even a ductogram. I was actually turned away from a mammo appointment based on my age (I was 28 at the time and will be turning 35 soon). The first ultrasound technician I saw said I had "normal anatomy." I saw 7 docs total, 3 of them were surgeons. I left many appointments in tears because once my tests came back benign (non cancerous), I was told my breasts were normal. I had bloody nipple discharge, lumps, bruising, and eventually retracted nipples. It was three years before I was diagnosed. I'm telling you this so you can be your own advocate. It's a chronic condition that is very stressful and painful. You need to get it treated. Being male, this will likely be a little easier because you won't be labeled "hormonal" and treated with birth control. They won't say you simply have fibrocystic breast disease. My fingers are crossed for you!
Zuska's actually causes the ducts (which branch out to carry fluid throughout the breast tissue) to form cells like our skin cells (squamous epithelial cells). Not only do these cells have no place in a duct, they begin to reproduce very quickly (metaplasia). In a sense, this part is similar to how cancer reproduces. But do NOT worry... these cells are normal, unlike cancer cells... just not for that part of the body. In fact, Zuska's does not predispose you to cancer at all. Whew! Once the ducts fill with these different cells and produce keratin (a cream cheese looking substance), they clog and break. Fluid from the ducts gets into the surrounding tissue. It's not suppose to be there and the body sees it as something foreign, even though it's really your own fluid. We all generate some fluid in our ducts, even males. Ducts are designed to absorb this fluid, but can't because of the skin like cells and keratin blockage. The body's response is to encapsulate the fluid and send immune cells in to destroy. This causes puss... puss is really just tissue that has been liquefied with dead cells. Then you basically have an infection that isn't even caused by a bacteria at all (aseptic).
You said you are leaking fluid and I'm going to assume that this is from the "lesion" itself and not the nipple (because you mentioned a scab). To me (and I'm not a doctor), it sounds like you may have formed a fistula. A fistula is a tract, like a sinus, that carries the fluid away and out of the body. It's normal that the body will attempt to remove something foreign in this manner. The problem is that now you have a good entry point for bacteria and could end up with recurrent bacterial infections. You will hear the term(or may have had by now) incision and drainage or I&D. That is simply surgically draining the abscess. Well... not simple. It's painful and usually doesn't cure the problem. Removing any affected ducts just may work. It's a toss up with Zuska's... there's really no telling. I've had ducts removed and I'm still experiencing abscesses. But every time, I get a longer break from the next flare up.
I hope this helps. I know what it's like to be the crazy person in the bathroom 12 times a day at work checking my nipples and then looking at every breast cancer website out there. Please know that Zuska's is not cancer. The cells are not suppose to be there but they are still a normal type of cell. Let me know if you need any more information. I'm hoping I didn't confuse you any further.
Good luck with your treatment - I hope it goes very well.
Hi,
Zuskas disease is a rare breast disorder that occurs mostly in women but sometimes also in men.Although it's a serious disease,it is not related to breast cancer in any way.
To get full information about this condition and how to treat it,please click on (or copy and paste) the link below.
The Breast Specialist/Surgeon will be able to explain everything to you and most probably order some type of testing preceding any surgical intervention.
My advice to you is to write down all the questions you have and leave the doctor's office ONLY after you fully understand what you have been told.Taking someone with you can be very helpful in case you miss something the Doctor tells you....
Try not to worry too much...I am hopeful that your condition will be successfully treated.
All the best to you and good luck!
http://www.breast-cancer.ca/miscellaneous-breast-lesions/zuskas-breast-disease.htm
Zuskas disease is a rare breast disorder that occurs mostly in women but sometimes also in men.Although it's a serious disease,it is not related to breast cancer in any way.
To get full information about this condition and how to treat it,please click on (or copy and paste) the link below.
The Breast Specialist/Surgeon will be able to explain everything to you and most probably order some type of testing preceding any surgical intervention.
My advice to you is to write down all the questions you have and leave the doctor's office ONLY after you fully understand what you have been told.Taking someone with you can be very helpful in case you miss something the Doctor tells you....
Try not to worry too much...I am hopeful that your condition will be successfully treated.
All the best to you and good luck!
http://www.breast-cancer.ca/miscellaneous-breast-lesions/zuskas-breast-disease.htm
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