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Topic: Intraductal Papilloma - Is a mastectomy necessary

Forum: Waiting for Test Results — Biopsy, mammogram, CAT scan, PET scan, ultrasound, or other tests.

Posted on: Mar 19, 2010 04:07PM

LindaMarieL wrote:

Hello, I have been diagnosed with intraductal papilloma. The surgeon's intern said it is not and will never turn into cancer and in no way indicates future cancer.  It is 3.3mm X 3.5mm in the 3 o'clock position.  The surgeon wants to do a partial mastectomy anyway.  I am 52 years old, single and in good health but with only a small amount of friend and family support.   I have very small breasts and this will cause disfigurement. Scar, indent and distortion of the nipple.   If this procedures can save my life I would be happy to have it.  I do not believe in unnecessary surgery. I scar easily and I understand that it could affect future mammograms.   I am looking for any information, support or stories from others that had this issue. i know this is a cancer support centre but I would appreciate any help you can give me with this.   Thank you so much! Linda

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Posts 1 - 9 (9 total)

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Mar 19, 2010 04:17PM barbe1958 wrote:

What is the doctor's logic on removing it? You have what a lot of us were hoping to have..a benign papilloma!

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Mar 19, 2010 04:31PM redsox wrote:

I had a duct excision for an intraductal papilloma.  They found DCIS next to it and that led to a partial mastectomy. 

The reason for removing the papilloma is that some (~10%?) are associated with cancer and they want to be sure.  Most are not and you are done with the duct excision.  Since duct excision removes a much smaller amount of tissue than partial mastectomy I would ask the surgeon why  not do the duct excision first. 

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Mar 19, 2010 05:05PM Beesie wrote:

A partial mastectomy is not the same thing as a mastectomy.  In fact in most cases when the term "partial mastectomy" is used, the surgery being done is exactly the same as a lumpectomy.  Technically with a partial mastectomy, more breast tissue is removed than with a lumpectomy but in reality most surgeons do partial mastectomies exactly the same way that they do lumpectomies.  Excisional biopsy is another term for exactly the same operation.  It's just a question of personal choice as to which term the surgeon uses.  The term "partial mastectomy" does however suggest that it's a much bigger surgery than it might actually be so I think your surgeon is not doing you any favors by calling it that.

Usually intraductal papillomas are removed, as redsox explained.  It may be possible to have the ductal excision - you definitely should ask about that.  And if not, you should ask that the smallest possible amount of breast tissue be removed during the lumpectomy.  Your intraductal papilloma is only about 1/8 of an inch in size.  While it should be removed, there is no reason why this needs to be disfiguring surgery.  If you aren't comfortable that your surgeon will try to minimize the impact on your breast, find another surgeon who will take this into consideration.

Good luck!

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 19, 2010 11:54PM mke wrote:

I had a ductal papilloma about 30 years ago. That was before I knew much about BC, I'm guessing that that the surgeon did a ductal excision.  There was an incision right where my nipple met the skin and after it healed up it was close to invisible.  The scar was just a faint white line running about a thrid of the way around the nipple.  There was no indentation or distortion - the surgeon was pretty proud of his handywork as I guess he had a right to be.  I was distressed because there was a loss of sensation in my breast, but that came back with time although it did take months.

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Mar 20, 2010 12:42AM LISAMG wrote:

Intraductal papillomas are most often benign, but the standard of care is always removal and/or excision, especially when found on needle biopsy. Reason being, with approx. 25 % of all cases, early staged cancers can be found nearby. I believe you have been highly mis-informed when a resident AND/OR intern says this will never turn into cancer. He/she needs to take a closer look at the research studies or pay close attention to what an attending surgical oncologist would recommend!!! Partial mastectomy or Lumpectomy terms are often used inter-changeably, both indicating the same procedure, but conservation should be a definite consideration for purposes of this excision. Keep us posted, we care.

High Risk for HBOC, BRCA Un-informative Negative Previvor, Bilateral Nipple Sparing Risk Reducing Mastectomy, August, 2010, Lipo/ Micro fat grafting with high profile implants, Nov.,2010. Risk Reducing Lap. BSO, October, 2011.

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Mar 21, 2010 03:28AM waniyetu1025 wrote:

LindaMarieL    I just had a ductal biopsy after having Lumpectomy 2 years ago. Yesterday... I had bleeding through duct and now Im wating for results Dr told me it could be a papilloma or could be cancer. He said he would do minor or major surgery which means he would take a lot of tissue verses a little, and he ended just taking a little. So go figuire...is it Cancer or not wont know till 5-7 days. So if this is what you have a Papilloma.  It cant be cancerous. I do not understand why they would give anyone a partial Masectomy. I would get another Dr's opinion. My Dr informs me they are not cancer! 

Mer

Dx 3/12/2008, 2cm, Stage IIb, Grade 3
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Mar 22, 2010 11:36AM kcshreve wrote:

Papillomas are related to cancer in a very, very low percentage of the time (but a percentage means nothing if the number comes up as you).  As I understand it, though, the best look at it is with a surgical biopsy to remove the piece and see it in the lab.  Your area seems fairly small, but I understand your concerns of disfigurement.  A good breast surgeon can guide you best as to how it would go for you.  Get a second opinion, too, since someone may have a different technique that you'd prefer. One thing is for sure, this is not an emergency.  You do need to look into it, but you have time to interview 2 or 3 doctors, or to read up on things more, if any of that adds some security for you.

Bilat NS DIEP Jan 2010, LE Mar 2010

Dx 12/2009, DCIS, 2cm, Stage 0, Grade 1, 0/7 nodes, ER+/PR+
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Sep 21, 2012 03:25PM shirell2 wrote:

Hello Everyone, I've read through your comments and I, like LindaMarieL have been diagnosed with Intraductal Papilloma (this is my 5th one).  The last four went like this, right breast biopsy (I was awake for that one), then the following year, double surgery biopsy (asleep for that one), left breast biopsy (I was wake for that one).  My question is, is there anyone out there who chose not to have it removed and what were your results, issues, etc.  Believe me, I am VERY VERY thankful that all four of the previous ones were benign.  I don't want to have to have surgery every time this happens.  My other questions has anyone every discussed with their doctor having a mastectomy, when this happens? 

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Sep 22, 2012 12:47AM oregongal wrote:

I have a very long struggle with papillomas.  Yes the reason they are removed is cancer or ADH can often be around or hiding behind them.  Another reason for removal is once the surgeon gets into the area, they may find more than one papilloma.  The usual course would be either removal of the papilloma or the whole ductal system.  Trust me I have had every kind of removal you can do for these pesty things and sometimes they have friends nearby either ADH or other benign lumps.  After several surgeries in a short time, my surgeon also did a partial mastectomy.  That term was used for two reasons.  First, he did a pie slice, removing one third of the breast, he considered more than 1/4 removal of the pie a partial mastectomy (assuming this was his own definition).  The second is the use of the term for insurance purposes.  In the state of Oregon if a woman has had a mastectomy of any kind, insurance has to allow reconstruction, a lumpectomy is a much harder hoop to jump through for reconstruction insurance coverage.  In reading the boards, I find insurance around are my area seems tougher than say the east coast, getting an MRI without a family history can be a nightmare. 

Now, the original posters case (Lindamariel) seems very odd to me, that is a very small papilloma to do a large removal unless they would suspect more papillomas in the system.  I have had small papillomas if they are closer to the surface, removed in the procedure room of the surgeons office.  Larger and deeper as a lumpectomy removal, more than one I usually have had a ductal excision.  Like I said before the partial mastectomy took place when I was having surgeries every three months.  I would get a second opinion for sure.  Seems way too extreme.

16 year history of papillomas, ADH and various other lumps so I don't get bored. Still Cancer Free!