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Topic: Paget's Disease of the Breast

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Dec 8, 2012 11:13PM

momtopiglet wrote:

Hi all-

During the summer of 2011 I began to experience flaking on my right nipple.  I showed it to my gyn at my yearly check-up, and she recommended using some hydrocortisone cream on it, and getting a mammogram.  The flaking continued off and on, and I finally got a mammogram about six months later.  The mammogram showed some calcifications in the nipple, so I was sent back for a diagnostic mammogram and U/S.  Both showed unusual changes, however, the radiologist was not concerned and recommended returning in six months.  However, at that point it had started to weep clear fluid occasionally, so he suggested seeing a breast surgeon.  

Two months later I went to see the surgeon, who recommended a biopsy.  It was the summer of 2012, and we were preparing to go on vacation.  I decided to put it off until I returned from vacation.  I came home and saw the surgeon again in September and had the biopsy. I was diagnosed with  Paget's Disease of the breast as my primary cancer.  No secondary cancers were found.  The entire nipple/ areola complex was removed two weeks later, followed by seven weeks of radiation.  

At this point (December 2012) I don't know if I'm going to do any reconstruction, but I might.  Paget's comprises only 2% of all breast cancers, but I would be interested to chat with anyone else with the same diagnoses.  Laughing

Dx 9/17/2012, Paget's, <1cm, Stage 0, Grade 1, 0/5 nodes, ER-/PR- Surgery 10/10/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Nov 24, 2013 07:24PM danielle3 wrote:

Hi glennie,

I ended up going to the Doctors and my results came back from my Mammogram the night before my appointment (didn't know though until I got to the doctors office). They found a mass and need to do an Ultra Sound and a Diagnostic Mammogram. This is scheduled for tomorrow morning. When I told my GYN about the patch of dry skin and flakes he said we need to start from the top and go down. He told me a biopsy will be done pending the results of the next US & Mammogram. He also told me cancer is underneath the skin (at this point I was not arguing with him - although I know Paget's can be diagnosed through skin cells and this is how it presents its nasty self!) I posted in another forum that he did seem irritated with me that I looked things up on the internet. He told me to use hydrocortisone cream. I love my GYN as I have been with him for years, however, he did get me mad this time, it was like because we had the results he did not want to hear about my problem. *UGH*! The spot has come and gone twice since last week. I will let them know tomorrow when they do the tests.

I am trying to stay positive, but there is that negativity that comes along with it too. I am trying to stay busy with getting ready for Thanksgiving. The thing that bothers me the most is I had an appointment for a mammo in June that got canceled, and it took me this long to reschedule, I should have known better to go before a problem presented itself, as my mom had breast cancer so I know this puts me at a higher risk. So rescheduling because of what I knew to be something different (itching in the nipple of only one breast and the skin change) then the mammo finding a mass, that's what worries me the most.

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Nov 24, 2013 09:57PM hoping42 wrote:

Hi Danielle. I just wanted you to know that I am thinking of you and hoping for good news for you tomorrow!! xo

I am a Danielle, too Smile

Dx 1/19/2013, DCIS, Stage 0, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 2/4/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 2/8/2013, Paget's, <1cm, Stage 0, 0/1 nodes, ER-/PR-, HER2+ Surgery 2/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/29/2013 Reconstruction (right) Surgery 5/29/2013 Reconstruction (left) Surgery 12/12/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 24, 2013 11:20PM danielle3 wrote:

thank you hoping! will keep you posted!

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Nov 25, 2013 05:01PM danielle3 wrote:

Well, I got some good news. From what they saw it looks like it is a cyst. However, they do not believe the cyst is "communicating" with the ducts. This is in the nipple area. I have to go back in 6 months for a follow up Ultra Sound and Mammogram again to look for changes. As for the dry skin and itching, same story from the radiologist. Use cream see a dermatologist. Aerola is the skin of the breast not the breast itself. So, I will wait and watch for the dryness. She said it could be eczima. I am still worried about that though as it is only on one and not the other. I will watch it closely though. Thank you for your support and will keep you updated!

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Nov 27, 2013 04:02PM glennie19 wrote:

Glad your mass turned out to be a cyst, but I think you are right to be concerned about the dry skin.

Having it only on one side is definitely a concern. And mine was on the areola too, not on the nipple. Please keep an eye on it. Maybe you can convince the dermatologist to do a biopsy, especially after you tell him/her that you have used the cream and it keeps coming back.

Have a Happy Thanksgiving,,, enjoy the holiday.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Nov 30, 2013 03:03AM danielle3 wrote:

Thank you Glennie! I am not sure if I am going to see a dermatologist or a breast doctor - I am leaning toward the breast doctor, with all the lumps and bumps (and dry spot AGAIN!) that plague my right breast, I think I need to ease my mind with someone who specializes with this. I don't need a referral with my insurance. I have not stared the cream yet, I thought I had some here at home, but do not. Will be stopping at the pharmacy tomorrow to get some. I will update on any changes. Thank you for your support. I do hope you had a nice Thanksgiving!

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Dec 1, 2013 04:14PM - edited Dec 1, 2013 04:15PM by danielle3

A question I probably should have asked earlier. On the same breast I have the on / off dry skin on the areola and where the cyst was found in the nipple, is discolored right below the nipple on the areola, like it is almost white. Can this be because of the cyst? Thanks!

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Dec 1, 2013 11:44PM ro-berta wrote:

Good evening ladies, I also have a question ,( not to take away from Danielle,s question)  Could any of you ladies explain a skin punch biopsy proceedure to me?( I think that is what it is called) I have one coming up on Wednesday and would like to be prepared. I have been kind of hanging around here for the last month and appreciate all the info you girls have. Thank you for any more info you can provide .        roberta

Surgery 5/15/2012 Lumpectomy: Right Dx 5/31/2012, 1cm, Stage I, Grade 2, ER-/PR- Surgery 7/3/2012 Lumpectomy: Right Radiation Therapy Breast
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Dec 2, 2013 12:04AM zap wrote:

Hi all:

I came across this thread and entered as I started out with the Pagets 7 years ago. All is well now but I heard that staging is now different if you have Pagets as it involves the skin plus a breast tumor. I was originally staged at 2 with clean nodes. Now I hear that I am staged at 3 as now they count the tumor and the skin involvement. Ugh! That is disheartening. I am doing well but obviously prefered a stage 2 to a 3. And how does that change prognosis? I am grateful I am doing well and this might be a question I need to ask the breast surgeon.

I had the punch as I had the Pagets. It was doable but a bit painful. As soon as the procedure is over, so is any discomfort. That was the only way it was diagnosed as the cancer did not show on the mammogram and was even iffy with the ultrasound. The irritation continued and I ended up with a dermatologist who ordered the skin punch. No one was more surprised than me myself and I when I was told it was cancer. Ten months prior I had the same procedure and no cancer. I guess that original one was a smidge off and missed it.

I wish you all well and keep pursuing your health. Thank goodness I went to that dermatologist. She perhaps saved my life!

Zap

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Dec 2, 2013 01:11AM - edited Dec 2, 2013 01:13AM by hoping42

Hi Roberta. I actually had the punch test when I was under for my lumpectomy, so I can't really say. However, I have heard it is tolerable, just not the most comfortable. I just had a gut feeling something was not right. I had experienced itching, burning and pinpricks of discharge in the nippIe only of my left breast. My surgeon, primary and breast health nurses did not think it was pagets---but I could not rest. When I had the lumpectomy due to a dx of dcis, my surgeon agreed to do the punch test. The amazing thing is is that they almost couldn't find residual pagetoid cells after my ultimate bmx--several slices by pathologist had to be made-an amended path report had to be made because the first didn't indicate pagets after bmx. The punch test almost got rid of all of it, but of course 1 cell is too many. I do remember that I had a small stitch that was to absorb, but didn't matter as my surgery took care of that. I read somewhere that pagets itself is curable, it just sometimes tells that something more sinister is going on. In my case it was dcis. But can occur on its own, too.

Zap--With my dcis, I was still considered stage 0. My dcis was staged 3 as high grade with comedonecrosis. However, still 0. Even with the pagets I was given the final stage of TisN0MX--which means tumor in situ, no nodes (had a SNB with lumpectomy and another removed during bmx because surgeon noted a little swollen, but gracefully no malignancy). The staging depends on underlying breast malignancy if there is any. I did not have a nipple sparring mastectomy for obvious reasons. I will have nipple reconstruction on Dec. 13th. I see my surgeon and oncologist every 6 months. Due to the fact that my markers were er/pr negative I do not take tamoxifen. I did have her2 overexpression, but since tumor was in situ, no herceptin.

I am sending all of you positive thoughts! xo

Edited only to add that the MX was that was not an issue because dcis is not outside the breast. It might have even read M0.

Dx 1/19/2013, DCIS, Stage 0, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 2/4/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 2/8/2013, Paget's, <1cm, Stage 0, 0/1 nodes, ER-/PR-, HER2+ Surgery 2/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/29/2013 Reconstruction (right) Surgery 5/29/2013 Reconstruction (left) Surgery 12/12/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 4, 2013 09:15PM ro-berta wrote:

Hoping, thank you for your response it helped. Saw both the Derm and R.O today both believe that Pagets could be a strong possibility.  They preferred me to have the breast surgeon do the biopsy and let me know that umx would be the form of treatment. So I am now officially in the "waiting room" once again for diagnoses. Sheesh we all know how hard the wait is eh? If there is anyone else waiting or have any experience to pass along it would be greatly appreciated thanx      roberta

Surgery 5/15/2012 Lumpectomy: Right Dx 5/31/2012, 1cm, Stage I, Grade 2, ER-/PR- Surgery 7/3/2012 Lumpectomy: Right Radiation Therapy Breast
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Dec 4, 2013 09:53PM danielle3 wrote:

Keep us posted! I hope both are wrong....

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Dec 5, 2013 03:16AM flash wrote:

Hope your docs are wrong but pagets by itself is pretty dealable. good luck. let us know.

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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Dec 5, 2013 06:16PM glennie19 wrote:

Danielle-- i'm not sure about the discolored area being due to the cyst. Seems like that might be a good place to biopsy along with the dry spot area.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Dec 5, 2013 06:20PM glennie19 wrote:

ro-berta: I hope your wait is not too long. If it is Paget's, umx or partial with radiation are your choices. I had a umx because I didn't want to deal with 6 weeks of radiation after surgery. I was glad I had umx cuz underlying DCIS was discovered on the pathology and it had not been picked up on mammogram or MRI.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Dec 5, 2013 06:41PM danielle3 wrote:


Hi glennie,

I spoke with my GYN office today about seeing a breast specialist, for ease of mind. She recommended one doctor but believes he is only taking those who are diagnosed with cancer, and told me I may have a hard time finding someone. She is going to look around for me though (the nurse at my docs office).

In the meantime, I am going to make an appointment with a dermatologist. I am nervous about the "white" area on my areola, this is where the itching and dryness was. The dryness has not been back since my last post, which is good. But that spot does hurt when I touch it, like a "prickly feeling" and it is sore around the nipple, this is why I am assuming it is the cyst.

Hey, GYN and Radiologist told me it was the "skin" - and seeing what you post and others, yes, I need to get it checked to put my mind at ease, along with my husbands because I think I am driving him "nuts" with all this! LOL!

Thank you for your support!

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Dec 6, 2013 01:48AM ro-berta wrote:

Hi ladies thanx for the support. There sure isn,t much info out there . I myself am 14 months post rads ( whole breast, my tumors were on chest wall) so rads will not be an option for me. I,ve also been on every cream, lotion or potion to get my nipple cleared up as you girls are all probably very familiar with. Anyways my " big Plan" is to enjoy Christmas and deal with this after the holidays. That's the plan anyways. Other than that what will be. Any how thanks for the response Flash, Glennie and good luck Danielle

Surgery 5/15/2012 Lumpectomy: Right Dx 5/31/2012, 1cm, Stage I, Grade 2, ER-/PR- Surgery 7/3/2012 Lumpectomy: Right Radiation Therapy Breast
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Dec 6, 2013 12:21PM danielle3 wrote:


Thank you Roberta! Enjoy your Christmas as you are planning!

 

Just an FYI - I did make an appointment with the Dermatologist yesterday. I go in December 19th at 5:15PM - Will keep you posted!

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Jan 15, 2014 11:29PM Sinclair27 wrote:

Hello ladies,

I have to say that reading your conversations has really helped me. I've finally had a biopsy to test for Paget's  - I get my results next week when I have to meet the lead surgeon at the breast clinic I've been referred to. Very nervous! 

Like many of you, it all started out of the blue with flaking, redness and itching on one nipple that hasn't cleared up despite a whole load of cortisone creams and anti--fungal. Have had two ultra-sounds but nothing showed up, which as we know, can mean little when it comes to Paget's.

Wish me luck! xxx

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Jan 16, 2014 01:25AM danielle3 wrote:


Good Luck Sinclair! I had an appointment with Dermatologist in December that I had to reschedule, put it in my calendar for today - went to appointment and was a day early! LOL! Anyway, I go tomorrow - the itching is back, not as severe as first, but the flaking is coming back again. Positive thoughts though - and positive thoughts for you too! Keep us posted!

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Jan 16, 2014 01:37PM Sinclair27 wrote:

Good luck for tomorrow! I'm just wishing I could speed up time and get my results back. Crossing fingers for good outcomes for both of us xx

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Jan 21, 2014 03:27AM hoping42 wrote:

Hi ladies!  Just checking in with you.  Hope all is well! Sinclair and Danielle -sending positive thoughts for benign results.

so danielle

Dx 1/19/2013, DCIS, Stage 0, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 2/4/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 2/8/2013, Paget's, <1cm, Stage 0, 0/1 nodes, ER-/PR-, HER2+ Surgery 2/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/29/2013 Reconstruction (right) Surgery 5/29/2013 Reconstruction (left) Surgery 12/12/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Jan 21, 2014 08:37AM danielle3 wrote:

Hello! 

I saw the dermatologist and she thinks it is just dry skin. She prescribed me an ointment to use for ten days and told me if this did not clear it up and I still had concerns she would do a skin scraping and have it looked at to ease my mind. She was really nice when I told her my concerns, she totally understood, which was nice. As my GYN and the Radiologist were like "it's the skin". So I will use the cream and see what happens. Will keep you posted!

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Feb 1, 2014 02:26PM jmb5 wrote:

I came to this board looking for some information. Last Friday (Jan. 24) I had a BMX because of a recurrence of DCIS in my left breast. I decided to remove the right breast even though I've never had any issues with it. Yesterday I called my BS to see if the pathology came back and she explained that they found Paget's Disease on the right "healthy" breast. I am shocked! She didn't really give me any other information, except that there was no invasive cancer in either breast, so that was good news. She is going to go over everything at my follow up appointment on Tuesday. I am wondering if any further treatment will be recommended. 

Dx 12/7/2009, DCIS, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 12/9/2009 Lumpectomy: Left Radiation Therapy 2/10/2010 Breast Dx 11/26/2013, DCIS, Stage 0, Grade 2, ER+/PR+, HER2- Surgery 1/24/2014 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 1/31/2014, Paget's Surgery 5/29/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 1, 2014 03:07PM - edited Feb 1, 2014 09:58PM by Renee72663

Hi Everyone - I was wondering if anyone else has had the same symptoms as me....? About 3 weeks ago, my nipple and areola on my left breast were really tender to the touch. I noticed a burn like puckered up mark on my left areola, as well as a small lump (about the size of a bb from a bb gun) under the areola skin next to the burn like mark and nipple. The burn like mark is no longer puckered, but is still dark red and looks like it was burned with a curling iron or other.... My nipple and areola are sore to the touch....and now....the hair follicles beneath the very bottom of the areola and up the sides are swollen and very sore. When I use a magnifying glass to view the hair follicles on the swollen area, I noticed the follicle holes are very large. The right breast has no issues at all. I can see the difference in size of breast too.

I went to the doctor yesterday. She is sending me for a Mammogram and Ultrasound next Tuesday. She put me on Cephalexin just in case there is an infection and 600 mg of Ibuprofin twice daily for pain. I have to say the the Ibuprofin did ease the tenderness a bit.

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Feb 5, 2014 12:31PM - edited Feb 5, 2014 12:42PM by Renee72663

I went for my Mammogram and Ultrasound yesterday. The Mammogram went well, but the Ultrasound hurt like crazy. There is just something about laying flat and rolling the little scanner thingy over the cysts and the new tender area on the areola. It felt like there was a needle underneath the skin stabbing at me. The Radiologists said that he sees something that he is not sure of between all the cysts by the nipple area. Said it could be an inflammation so he wants to wait until I finish the antibiotic and ibuprofen that the Doc prescribed...then, have another Ultrasound (scheduled for March 4, 2014). He says, if they did a biopsy right now, it would just be too painful because of the current swelling and tenderness. Also, says he will not send a report to the doctor until he receives my last screening results from June, 2013 taken at KCBC, Knoxville Comprehensive Breast Center, Knoxville, TN. Wants to compare those results with that of yesterdays results to see what changes have occurred since last June, 2013.

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Feb 6, 2014 03:13PM glennie19 wrote:

Hey, Danielle, How are things?  Are your symptoms better?

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Feb 6, 2014 03:14PM glennie19 wrote:

jmb, I have Paget's also. If you had a mastectomy, there is no other treatment needed. If you had only had the lumpectomy, then they would want to do radiation. wow, how freaky, that everyone assumed that breast was healthy and it had Paget's.  Cancer is a sneaky bastard!

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Feb 6, 2014 03:15PM glennie19 wrote:

Renee, keep us posted. Is it any better with the Keflex?

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Feb 9, 2014 03:01PM danielle3 wrote:

Hi Glennie!

Sorry it took so long to reply. Yes, symptoms are better, just every now and then a little itchy. I do have an appointment for my 6 month re-check May 15th. I still have that discoloration there though, will just stay positive until my next check up.

Spring can not arrive soon enough - anyone else in the Northeast feel this way - or the South too! Yikes they have been getting walloped with cold and severe weather!

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