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Topic: Paget's?

Forum: Not Diagnosed but Worried —

Meet others worried about developing breast cancer for the first time. PLEASE DO NOT POST PICTURES. You are encouraged to seek advice from a medical professional in the event of any concerns.

Posted on: Apr 20, 2012 09:03PM

kristinlee wrote:

Hello,

 I am 41 years old.   12 days ago my nipples became very tender, then VERY itchy.  I thought perhaps it was dry skin and started applying lotion.  But they ached.  Over the next three days they became red......and VERY painful, almost a burning feeling.  On the third night I noticed I had discharge come from around/underneath my nipples.  Seems to be clear.  This is when I freaked out.  It comes out on it's on, not alot, just enough to notice the wetness.  Then I am left with a white crust.  I started googling and came across Paget's.  This prompted me to do a self exam.  I found a small hard lump under my breast.  This is when I freaked out even more.

 I saw my primary care doctor the very next day, who diagnosed the lump as a skin cyst, I could have got it anywhere on my body, it just happened to show up on my breast.

 She then ran blood tests.  The next day I received the results, no infections, thyroid is fine and no hormonal issues that could cause these symptoms.

For one more day the discharge continued, I could literally feel it happen as my nipples and aerola would suddenly, a few times an hour, become extremely erect and tingly........after this happened is when I would notice the discharge.

 Over these 2 days the burning/stinging feeling became much worse, pretty much constant.  My nipples and aerola were very red, burning/stinging, but the discharge stopped. 

Over the next 3 days of that, the burning/stinging reduced to maybe 50% of the time.  My nipples will still suddenly, several times an hour, become very erect and senstive.  Still no discharge, but still a re-occuring white crust. 

 I have an appointment this coming Tuesday with a breast case specialist.  I have an order for a diagnotstic mammogram and ultrasound.  I am scared to DEATH she is going to do a nipple biopsy, but based on my symptoms and what I have read, I should insist this biopsy is done to rule out Paget's, shouldn't I? 

Do these symptoms resonate with anyone with Paget's, or am I losing my mind?  I keep telling myself it CANNOT be cancer, yet my symptons keep happening and are a terrible reminder that perhaps maybe it is Frown

Thank you in advance for your attention,

Kristin

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Posts 1 - 25 (25 total)

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Apr 20, 2012 09:57PM , edited Apr 20, 2012 09:59PM by marie5890

Kristin,

Hello and Welcome.

I admit I really dont know much about Paget's and if what you are experiencing can be explained by other conditions as well. My guess based on what I have learned in general about breast cancer is that there may very well be other reasons. "Breast cancer" is an umbrella term that covers a whole host of cancers that can effect the breast. And even then, there are a whole host of conditions that are not cancerous that can effect the breast.

What I do know is this. And you know it too. You are doing the absolutely the right thing by getting it checked out. And I am glad you are getting it checked out by a breast specialist. Definitely as him/her about your concerns about Paget's.

The board can tend to be more quiet on the weekends since many of the ladies here give themselves the weekend "off" of anything to do with the diseases they are fighting.

You are in the worse part of any of this and that is the "something is going on with my boob; is it cancer???" fear.

We all have been there and know that fear. Most of the ladies here got the answer of "yes". Others, like myself, get the answer "no". Most of the women who get a "no" just move on from the board and going living their lives. So what you see reflected here on this board are those women who got the *yes* and are at varying points of the treatment/post-treatmen journy. 

Sending warm and peaceful thoughts your way that you get a "no".

Biggest word of advice I can give you right now. Stay away from Dr Google at this point. You simply dont have enough medical information about what is going on with *you* to know what to be researching.

You are not losing your mind. You are facing a very real fear that many of us have experienced.

Try to keep yourself distracted and busy with other things if you can (except the internet searching).

HUGGGSSS 

DO NOT READ ANYTHING INTO THE TECH'S EXPRESSION OR WHAT THE TECH SAYS. Jan '11 Biopsy Dx-ed a PASH tumor (rare, but benign tumor)....All I ask is for peace and serenity to the depths of my soul. Makes the rest of life more live-able.
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Apr 21, 2012 05:48PM upatnight wrote:

Kristin,

Hang in there! You are not alone. Hugs! I too am on a similar wait. You can read my blog entry by clicking my name "upatnight".

Hugs!

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Apr 21, 2012 05:57PM , edited Apr 21, 2012 06:19PM by zap

I had Pagets and had it for ten months or more as it was misdiagnosed.  It was called excema and so when I went to a dermatologist to check out the excema, she did a nipple biopsy and it was  (sadly) stage two cancer.  To be honest, your case sounds so different form my own but thank goodness you will put it all to rest by seeing a breast surgeon.  My nipple was retracted (is that the right word) or inverted. It was very itchy and scaly.   The discharge or the weeping of the skin was amber colored and sticky.  Pagets is very rare and generally hits "older woman" and mine came at 58.  I never felt any lump but it was there upon the needle biopsy.  The biopsy was not horrible.  It does hurt, but just deep-breathe.

I know you are worried but your case sounds so different from mine.....but good to have it checked out. Edited to add that Pagets is rare in one nipple but two nipples?????Very unlikely!

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Apr 24, 2012 09:11AM upatnight wrote:

Zap -

I am longing to connect with someone who has ad Paget's.

Can you share your thoughts with me?

 For 6 mos, I have had sensation of discharge but only saw a small circle on my shirt twice.

For 3 months a certain area of my breast near the bra elastic would itch.  Attributed to bra.

Last 2 weeks brief, almost ignorable minor aches right side of left breast.

10 days ago, itchy breast (all over), itchy nipple, nipple needle sticks, slightly swollen rull breast began.

11 days ago, a rash began and it has turned out to be Shingles.

I am on atibiotics hoping breast infection and viral meds for the Shingles. 

My nipple and areola are itching like mad and the nipple is BEYOND sore.  Sore does not describe how badly it hurts!  And I have some itching not only on the rash but on other areas of the breast which remains swollen with goose bump skin near rash.

The breast is not getting better.  I am getting more miserable by the day and can barely function.

I have compared the aching nipple to the good one even with high resolution photos and they look so similar.  The areola on the aching nipple is a little redder, a little wrinklier, and a little larger but there is NOTHING that stands out as disease... although the nipple is so irritated that it seems erect or hardening more frequently.  I am not sure if this is the skin hardening Paget's sites talk about.

I am seeing a professional and will deman biops Thursday next appt.

Your thoughts?? Hugs!!! 

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Apr 24, 2012 09:25AM Snobird wrote:

I also had Paget's. It was a recurrence from a previous BC. Do not be afraid of the nipple biopsy. I insisted it be done because my BS wasn't concerned but I needed peace of mind. As a result we caught it early and it was DCIS and not invasive. The nipple biopsy was nothing. You hardly noticed the tissue taken. Paget's is so rare that it is misdiagnosed as a skin disorder a lot. My Onc, who is head of a large department at a teaching hospital, has had only 2 cases including mine in her whole career and she is in her 60's.
It could also be an infection or papilloma. Best to see your Dr.

Dx 10/2006, Paget's, <1cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR-, HER2+ Surgery 02/15/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 12/20/2006 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 11/17/2011 Reconstruction of my left breast: Nipple reconstruction; Reconstruction of my right breast: Nipple reconstruction Surgery 12/06/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/07/2007
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Apr 24, 2012 09:27AM Snobird wrote:

FYI, it is rare to have Paget's occur at the same time in both nipples at once.

Dx 10/2006, Paget's, <1cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR-, HER2+ Surgery 02/15/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 12/20/2006 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 11/17/2011 Reconstruction of my left breast: Nipple reconstruction; Reconstruction of my right breast: Nipple reconstruction Surgery 12/06/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/07/2007
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Apr 24, 2012 09:27AM upatnight wrote:

Zap - I was also helping you could tell more about your misdiagnosis for 10 months so that I and others do not travel down that road.  Thank you from the bottom of my heart.

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Apr 24, 2012 09:30AM , edited Apr 24, 2012 09:31AM by upatnight

Thank you Snobird! : )  I am beating down doors for answers.  It's the wait and needing someone to talk to for reassurance... : ) Can you tell me, Snobird what your symptoms were?

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Apr 24, 2012 06:14PM Snobird wrote:

The only symptom that I had was a clear discharge off and on for several months and a very tiny change in the skin at the very tip of my nipple. When I say tiny it was almost imperceptible to the Dr without magnifying it. Not pain or itching was apparent. Paget's can present in very different ways so it is not easy to DX.

Dx 10/2006, Paget's, <1cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR-, HER2+ Surgery 02/15/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 12/20/2006 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 11/17/2011 Reconstruction of my left breast: Nipple reconstruction; Reconstruction of my right breast: Nipple reconstruction Surgery 12/06/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/07/2007
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Apr 25, 2012 11:25PM kristinlee wrote:

Well, I have been told I have eczema on my nipples.  Strange, isn't it, to suddenly develop eczema on your nipples?  How common is this?  What would cause it, on my nipples?!   

I had a mammo and ultrasound and was told both were fine.  Should I ask for a nipple biopsy?  Or could this really just be eczema? 

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Apr 26, 2012 08:02AM Snobird wrote:

If it is on both nipples at the same time it is most likely excema. I wouldn't press for a biopsy unless they get worse or don't respond to treatment. Excema is a surface skin disorder which should respond well t o a hydrortizone cream treatment. Try to switch detergents to a one free of perfumes and dyes also don't use dryer sheets. Double rinse your underwear to make sure you get the soap out. I have suffered from excema my entire life and I can control almost completely by using natural, scent free cleansing products and natural oatmeal soap for my skin. Stress will also exacerbate the condition. I feel for you girl because I've been there and it ain't fun.
By the way, I had Paget's and no mammo or ultrasound found it only the biopsy did. That being said, only one nipple was affected and I had a discharge out of the nipple. Excema oozes from the skin itself.
Also sometimes an antihistamine will help.

Dx 10/2006, Paget's, <1cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR-, HER2+ Surgery 02/15/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 12/20/2006 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 11/17/2011 Reconstruction of my left breast: Nipple reconstruction; Reconstruction of my right breast: Nipple reconstruction Surgery 12/06/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/07/2007
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May 26, 2012 07:51AM Japaida wrote:

Hi there, I had blood discharge and clear discharge a month ago and then my nipple peeled and seemed to get better. I had a mammogram and US and they were clear. The breast surgeon said to call her if more discharge came because she wanted a sample. No more discharge has come, but I am still suffering from a very itchy nipple. I can't see anything wrong with it. Now I am beginning to think I am imagining the itch- . I am without insurance and paid out of pocket for the mammogram and US. The BS said she can do an MRI but it is expensive. I am heading back to Canada in the summer where I will have insurance but I have heard the waits can be pretty long there. I am not sure what answers I am looking for on the board- I guess I just didn't want to be sitting here alone thinking about it. I am 37 and have 4 young children. I have been breast feeding for most of my adult life ( but stopped 2.5 years ago).

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May 26, 2012 10:22AM Snobird wrote:

There are other reasons for itchy nipples such as a skin condition like eczema. It usually is very itchy and can bee weepy but it is typically an exterior condition. Any actual discharge can indicate other issues such as a clogged duct, a papilloma or soon type of cyst. If you have not seen a dermatologous you might want to but other than that a Breast Specialist is who you want to see.
Try to see if hydrocortisone cream helps relieve the itchiness. If it doesn't then I would go back to the breast specialist.
You could wait until you get to Canada but not if it gets worse. If you notice other issues with your breast such as skin changes or lumps then you shouldn't hesitate to see the Breast Specialist.

Dx 10/2006, Paget's, <1cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR-, HER2+ Surgery 02/15/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 12/20/2006 Lumpectomy in one or both breasts: Lumpectomy in my left breast Surgery 11/17/2011 Reconstruction of my left breast: Nipple reconstruction; Reconstruction of my right breast: Nipple reconstruction Surgery 12/06/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/07/2007
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May 26, 2012 12:06PM Japaida wrote:

Thanks for replying Snobird. I sent an email to my BS and she wants me to come in to see her tomorrow. There is nothing that looks out of the ordinary, it is just itchy. I have one tiny hole that seems to be open -like where the milk comes from. I will put hydrocortisone on tonight. I have used it before and it helped but then when I stop it comes back again.

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Jun 27, 2012 10:47AM Chicago1958 wrote:

Thanks to everyone for posting here. I had my three-month post-treatment follow-up yesterday, and the nurse practitioner suggested I see my breast surgeon for a biopsy to rule out Paget's. It's the same boob that had the lumpectomy and radiation, and I had been telling myself the crusty area was just part of the healing from that. And maybe that's what it will turn out to be, but as I read about Paget's, I wouldn't be surprised if I have it. (And I usually think the opposite.)

Seems like the rads would have killed off those cells, though, if I did have them... but then, if that were the case, everyone with Paget's would have radiation without surgery, I guess.

Glad to know the biopsy is not such a big deal. If anyone has any other advice or thoughts, please share!

Dx 11/15/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jun 28, 2012 10:09PM gentianviolet wrote:

Chicago, I had an itchy nipple about a year after I had rads.  It was not just itchy but very rough to the touch.  I asked my BS who recommended I see a dermatologist but because I had a appointment in a few days with my RO, I wanted to wait and ask him.  After all he has seen many more radiated breasts than my dermatologist.  He told me to use hydrocortosone cream, which I did and within a week it was gone.  He said that the tissue that is radiated is now very sensitive and not to be surprised if it happens again.  Good luck, I hope it is eczema and nothing more. 

Barbara Dx 8/13/2009, IDC_CRIBC, Right, 2cm, Stage IIA, Grade 1, 1/14 nodes, ER+/PR+, HER2- (FISH) Surgery 09/01/2009 Lumpectomy in one or both breasts: Lumpectomy in my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my right side Hormonal Therapy 01/01/2010 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) , Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM)) Radiation Therapy 10/15/2009 Whole-breast radiation
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Jun 29, 2012 09:10AM , edited Jun 29, 2012 09:11AM by Chicago1958

Thank you for taking time to leave feedback, Barbara! I hope that's what I'll hear.

I guess I'm worried because it's more of an inside-out crystalization. I've actually noticed a little of it off and on for years, but thought it was just normal. Never thought of it as discharge, because it isn't liquid -- more like wiping sleep from your eyes in the morning. And yet, that would qualify as a discharge too. It's just a lot worse now.

I'm not completely freaking out because it's more like something was missed, rather than spreading, but it will be hard to accept the idea that the whole lumpectomy/radiation was a waste of time. Biopsy will be July 9th when the surgeon returns from vacation. I'll post the results in case anyone with similar symptoms reads this. Thanks again.

Dx 11/15/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 5, 2012 03:59PM Jinkala wrote:

I had Paget's - symptoms were basically a chapped sore nipple that would occasionally get sore and leaky (which would make it stick to my bra and pull bits of skin off making it worse).  It would also seem to get better at times and I really thought it was just a skin condition.  It was irritating and itchy at times but not painful unless something would cause skin to be pulled off.   I had to go to get a cyst drained from under my breast and the nurse was concerned about my nipple and referred me to a breast specialist who took a biopsy just to be sure and it turned out to be Paget's.   It's very rare, especially in someone my age (46 at the time) but the biopsy was an easy and relatively painless way to be sure. 

By the time of my surgery last week, my nipple was in constant low-level pain (after about a year of having nipple issues) and I was ready to be just rid of it once and for all.

Age: 47 Diagnosed Type 2 Diabetes May 2012 Dx 3/22/2012, Paget's Dx 4/2012, DCIS Dx 6/26/2012, IDC, <1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2+ Targeted Therapy 08/10/2012 Herceptin (chemical name: trastuzumab) Surgery 06/26/2012 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Chemotherapy 08/10/2012 Carboplatin (brand name: Paraplatin), Taxotere (chemical name: docetaxel)
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Jul 5, 2012 06:41PM Chicago1958 wrote:

Thanks, Jinkala. Good to know. I've never been leaky. Maybe I'll get good news!

I'm glad that the biopsy is definitive, and for once, I'm glad to have a biopsy scheduled...

Dx 11/15/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 5, 2012 06:59PM gentianviolet wrote:

Chicago - Just want to wish you good luck on the 9th.......let us know what the results are.  Sending positive thoughts your way.

Barbara Dx 8/13/2009, IDC_CRIBC, Right, 2cm, Stage IIA, Grade 1, 1/14 nodes, ER+/PR+, HER2- (FISH) Surgery 09/01/2009 Lumpectomy in one or both breasts: Lumpectomy in my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my right side Hormonal Therapy 01/01/2010 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) , Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM)) Radiation Therapy 10/15/2009 Whole-breast radiation
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Jul 6, 2012 12:37PM Chicago1958 wrote:

Thanks, Barbara, I will. And Jinkala -- hope you're healing well. It sounds like an awful year...

Dx 11/15/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 6, 2012 07:03PM Jinkala wrote:

Don't get me wrong, it was mostly an annoyance for most of that time.  It wasn't until the last couple of months that it was hurting more and looking worse.  Before that it would seem to be getting better at times and I wasn't constantly reminded of it.  I just didn't think it could be cancer so I just kept trying different creams and stuff on it.  I was only 46, I  had never felt any weird lumps or anything that wasn't pretty much the same on both breasts except for the chapped looking nipple.

Both the mammo and the ultrasound found nothing either.  It took an MRI to find anything else which turned out to be some DCIS.  The DCIS scared me a bit since it meant there could be other things hiding in my dense breast so I decided to go ahead and have the mastectomy since that would mean I wouldn't have to have radiation treatments.  The pathology post surgery found some IDC right below the nipple but other than that, everything looks clear including the two lymph nodes they took.  I'm healing well and am feeling good about my choice.

Age: 47 Diagnosed Type 2 Diabetes May 2012 Dx 3/22/2012, Paget's Dx 4/2012, DCIS Dx 6/26/2012, IDC, <1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2+ Targeted Therapy 08/10/2012 Herceptin (chemical name: trastuzumab) Surgery 06/26/2012 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Chemotherapy 08/10/2012 Carboplatin (brand name: Paraplatin), Taxotere (chemical name: docetaxel)
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Jul 9, 2012 09:31PM , edited Jul 10, 2012 02:49AM by Chicago1958

Saw the surgeon today and he scheduled the biopsy for Friday, with IV sedation in the hospital. I was all pumped to get it over with right then and there in the office, but if your surgeon thinks you need drugs, probably best to listen, right?

I think you were smart to have the mastectomy, Jinkala. When I got home, I had a letter saying that last week's follow-up mammo requires more testing. 

Dx 11/15/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 11, 2012 08:15AM Chicago1958 wrote:

Just a follow-up, in case anyone else has to have a biopsy for Paget's. My results were benign -- apparently just a weird reaction to radiation. (Still have it, by the way, six months out from radiation, but at least I can ignore it now.)

And the letter I mentioned above saying my follow-up mammo requires more testing? was a mistake, as it turns out. The radiologist that read the report clicked the wrong option and generated that letter. Sigh.

The biopsy recovery wasn't bad at all -- just a few stitches.

Hope you're doing well, Jinkala and Barbara, and thanks again for your responses. 

Dx 11/15/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 15, 2012 08:03PM gentianviolet wrote:

Chicago1958 - I was happy to read that it was a reaction to radiation........guess it does strange things to our breasts, even years after, according to my RO.  Sending good thoughts.  Barbara

Barbara Dx 8/13/2009, IDC_CRIBC, Right, 2cm, Stage IIA, Grade 1, 1/14 nodes, ER+/PR+, HER2- (FISH) Surgery 09/01/2009 Lumpectomy in one or both breasts: Lumpectomy in my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my right side Hormonal Therapy 01/01/2010 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) , Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM)) Radiation Therapy 10/15/2009 Whole-breast radiation