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All TopicsForum: Not Diagnosed but Worried → Topic: Early symptoms of Paget's? (Please help!!)

Topic: Early symptoms of Paget's? (Please help!!)

Forum: Not Diagnosed but Worried — Meet others worried about developing breast cancer for the first time.

Posted on: Jun 15, 2008 12:32PM

mindy25312 wrote:

Hi all!  I'm a worrier and have spent hours on the Internet trying to find out what's wrong with me.  If anyone can help, please email me or post a message!

About 6 weeks ago, I noticed some darkening in a couple of areas on my areola - by darkening I mean a dark tan instead of the usual pink.  There were well-marked borders but did not follow the outline of my areola.  About that same time I developed shingles in the other breast.  (That has since gone away.)

About a week ago, I noticed some flaking on the darker portions of my areola.  On close examination, these places looked like patches of dry skin.

I made an appointment with a general surgeon who does breast surgery.  He looked at it and said I did not have Paget's and that I need to stop doing so much worrying. 

Several days later I made an appointment with my dermatologist who said that I did not have Paget's and showed me pictures out of a book of people who had advanced Paget's.  He also gave me a sample of ointment to use which only burns so I stopped using it. 

I am thinking that since Paget's is a "progressive" disease that mine has just not reached the stage where there is oozing, crusting, nipple discharge, etc.  As a matter of fact, my dermatologist said he had never seen a case in his 40 years.  Maybe he just doesn't know the early symptoms?

So....I'm on my way to my gynecologist tomorrow.  I am going to push for a skin punch biopsy and find out for sure what's going on!  My nipple is not affected at all - just my areola and there's slight burning.

Please help if you can!  I'm at the end of my rope!

Mindy

lightning54@hotmail.com

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Posts 1 - 15 (15 total)

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Jun 15, 2008 12:48PM BMac wrote:

I don't have any insight on what you have but you definitely should continue pursuing it until you get a satisfactory answer.  Any change in appearance should be investigated.  Hopefully your gyne can shed some light on what it is.

Good luck tomorrow.

Barbara

Dx 10/23/2007, IDC, 2cm, Stage IIIc, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Jun 15, 2008 12:56PM mindy25312 wrote:

Thanks Barbara!  It's just that I know my body and know that something isn't right. 

Did you have a skin punch biopsy done?  Can it be done in a gyne's office?

Hope you're doing well.  I have been reading about all kinds of breast cancers and noticed that you had IDC?  Isn't that in the milk ducts?  Forgive me if I'm wrong - I'm just all so new to this.  If you don't mind my asking, what were your symptoms?

Kind regards

Mindy

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Jun 15, 2008 01:00PM flash wrote:

Hi,

Paget's is not common but it can be easily checked with biopsy. You can even do it with a simpler type of biopsy. Don't have to do a punch.  Usually there are some other symptoms such as itching.  Don't feel badly about checking further.  Better for peace of mind.

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst

Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+
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Jun 15, 2008 01:08PM mindy25312 wrote:

HI Flash,

Thanks for your post.  Are you talking about maybe just a scraping of the skin to get a biopsy?

I see that you had Paget's.  If you don't mind my asking, what were your symptoms?  From what I've read (and I've probably read every website that has to do with Paget's) the nipple is always involved.  Do you know if that's true or can it just be the areola?

Anyway, I hope that you are doing well and the cancer is now history.

Kind regards,

mindy

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Jun 15, 2008 01:08PM, edited Jun 15, 2008 01:08PM by BMac

Hi Mindy, no I didn't have a skin puch biopsy.  I had ovarian cancer 5 1/2 years ago and, since my Mum died of ovarian and my sister had breast cancer 16 years ago, my sisters and I had genetic testing and are all positive for BRCA1.  So I was attending a high risk breast cancer clinic and last fall my annual MRI found a lump in the left breast.  So I had no symptoms, although after the lump was found I noticed the areola was red and itchy and the breast started to enlarge. IDC is invasive ductal carcinoma.

Barbara

Dx 10/23/2007, IDC, 2cm, Stage IIIc, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Jun 15, 2008 01:22PM mindy25312 wrote:

Barbara,

You've really gone through a lot.  Thanks so much for the information.  Just to be able to communicate with someone today is helping my nerves.  Thanks for the good wishes about tomorrow.  I'll post again and let you know how that goes with the gyne.  I do intend to keep persuing this, but I think if I can just get a biopsy, that should help.  Knowing is better than not knowing and imagining the worst!

Mindy

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Jun 15, 2008 01:44PM MinAZ wrote:

Mindy

My friend had something odd on her aerola. The gyn nurse thought maybe paget's, the surgeon said it was not but he did a punch biopsy. It was not paget's but it was another kind of breast cancer. So please insist on a biopsy! Best of luck.

Dx 10/15/2006, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 15, 2008 01:47PM mindy25312 wrote:

Do you know if it was IBC?

Mindy

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Jun 17, 2008 09:38AM BMac wrote:

Hi Mindy, I was just wondering how you made out at the gyne yesterday.

Barbara

Barbara

Dx 10/23/2007, IDC, 2cm, Stage IIIc, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Jun 17, 2008 10:12AM zap wrote:

I had paget's and it looked differant than what you are describing, although I do not recall what it looked like when it started out.  I am sure you are okay.  Did you have a mamogram?

I do have to tell you, and I do not want to create more stress for you, but I went to FOUR doctors  (primary, gyn, breast surgeon, and dermatologist). with my pagets and no one caught it. The breast surgeon did a biopsy and it was okay--- no cancer.  I also had a biopsy that was okay.  You need to get the needle right on the spot.  My primary doctor also said he had never encountered Pagets but he encouraged me to keep pursuing it to find out why all the creams were not working.

I really think you are fine.  If it helps any, and there is something there, you are getting it so early that you will catch it.  I walked around with pagets for atl east two years!

Good luck!

Susan 

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Jun 17, 2008 04:03PM mindy25312 wrote:

Hi Barbara & Susan!  Thanks for posting!!  I went to the gyne yesterday and he examined my breast.  Said it looked like it had been irritated by rubbing against something (i.e. fabric).  I brought up Paget's and asked him what he thought about my getting a biopsy.  He said I'd have to go to my dermatologist or breast surgeon since he no longer does breast biopsies, but if he were asked by his own sister what to do, he would advise her to wait about a month.   He said that sometimes a biopsy will cause pain for a long time.  (Is that true?)  He advised me to put lanolin on the dry places on the areola and cover the whole nipple/areola with a big band-aid so it won't rub on anything.

So...now I'm right back worrying.   I'm starting to run out of doctors.  There's a breast disease dr. who's located about 50 miles about, but I called her office and you need a dr. referral to see her.

Susan, what were your symptoms and how was your Paget's treated?  Did you have to have a mastectomy?  Did they say if it had been caught earlier, you could have been treated differently?  (sorry for all the ???'s)  What's a little weird about my problem is that only the areola is involved, although I read in an article last night that it's possible.

I had a mammogram in May and everything was OK, although I do have dense breasts.

Something else is weird - the whole nipple of the affected breast feels colder than the other one.  I've always heard that if there's cancer, it's a warmer area.  Oh well, just something else to worry about. 

Take good care - hope to hear from you soon!

Mindy

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Jun 18, 2008 10:02AM BMac wrote:

Mindy,  no fair you have to wait and worry.  What about going to your family doctor and asking (begging?) for a referral to the breast disease doctor.  Your peace of mind is at stake.

Take care,

Barbara

Dx 10/23/2007, IDC, 2cm, Stage IIIc, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Jun 18, 2008 03:07PM mindy25312 wrote:

Hi Barbara,

You're absolutely right!  After I read your post, I sat and thought about it, so called another breast surgeon and have an app't to see him this coming Monday!  I talked to the nurse and told her my problem and asked if she was familiar with Paget's Breast Disease.  She said she was and said you could pretty much diagnose that by the looks of it.  I told her the changes I have may be the beginning, but I need some kind of peace of mind to know if I even have it or not!   I think she could sense the anxiety in my voice because she had given me an app't for next Thurs. but then found me an earlier one on Monday.

Thank you!  Probably if you hadn't written what you did I would have just gone back to worrying which is actually getting me nowhere except stressed out and checking my breast all the time. 

Later,

Mindy

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Jun 19, 2008 07:55AM BMac wrote:

I'm so glad Mindy.  Make sure you keep us all posted about how you're doing.  I know from experience that waiting is the toughest thing of all.

Barbara

Dx 10/23/2007, IDC, 2cm, Stage IIIc, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Jun 20, 2008 12:12PM mindy25312 wrote:

Thanks again Barbara!  Will pass along any new developments....Things are lots easier when people understand.

MindySmile