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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 06:13PM

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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Mar 20, 2014 12:23PM Smitty333 wrote:

Thanks for the response girls. Nice to not feel so alone in all of this. I have not told anyone about this biopsy. I am sick of explaining things that I don't understand myself! They told me the results of the pagets biopsy will take 10 days to 2 weeks! Seems crazy to me that they make you wait so long. Wonder if they would have to wait that long?? 

I am feeling pissed off lately. I know things could be so much worse but after the long road with my other health problems and the complete hystorectomy I was finally feeling like I was getting my life back! Than bam! Now it seems like all I do is have biopsies and wait for results. I am always the one lecturing my friends about looking on the bright side and living each day to the fullest. And now here I am having a pity party that I cant seem to snap out of.  I cant barely stand to be in the same room as my husband. I dont know if it is the menopause or the boobs! lol

Anyway, thanks again for the kind words and I hope you are all feeling well and enjoying some sunshine :) 

Danielle are you from Nebraska?? GO HUSKERS :)

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Mar 20, 2014 06:20PM hoping42 wrote:

Hi Smitty--Yes, I am.  I live in a suburb of Omaha.  Take care!

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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Mar 20, 2014 06:58PM Smitty333 wrote:

Not to far away. I am in Grand Island but my oncologist is at Methodist at the estrobrook cancer center. Used to love to take trips to Omaha but I am over it lately ;)  would much rather be going to shop or maybe a little beer and gambling!

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Mar 25, 2014 12:44PM glennie19 wrote:

Maisie, I watched my rash on my nipple for several months,, thinking "it's nothing",, until the day it broke open and bled. In my mind:  blood (where it's not supposed to be) = BAD.  So I insisted on a biopsy.  There really is NO other way to tell if you have Paget's except by biopsy. I had a clean mammogram, ultrasound AND MRI,,, all clean. I had two doctors said to me:  "I really doubt it's Pagets".  Well they were both wrong. Thickening of the areola makes me suspicious too. Not to scare you, but I would want a biopsy.

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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Mar 26, 2014 06:27AM CassDugan wrote:

Yes, I had to wait 10-14 days for the results of my punch biopsy for Paget's too.  The wait is mostly due to processing the sample.  It has to be treated with particular methods in order to allow a microtome to make very thin slices.  It's the slices that go under the microscope for examination.  

Surgery 5/16/2013 Lumpectomy: Left Surgery 6/13/2013 Lymph node removal: Left, Sentinel Radiation Therapy 7/7/2013 Breast, Lymph nodes Hormonal Therapy 9/14/2013
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Apr 6, 2014 07:41PM moreprecious wrote:

I'm new to this site but have concerns about Paget's breast cancer due to my symptoms.  I have a itchy, flaky, cracked and thickened rash on my nipple and areola. I also have had a small yellowish discharge and a clear discharge from my breast.  I just recently notice the rash has spread over and around most of my nipple about 1/4 of the area when it started out as a small patch under the nipple.  I've had this for several years and tried OTC creams, lotions, olive and coconut oil but it keeps coming back.  The itching can be really intense and its only my right breast.  I recently saw a lady on tv share her story about having an itchy breast and being diagnosed with breast cancer and hearing her story quicken something in me about my symptoms, so I called and got an appointment for a mammogram and they ended up doing a US and saw nothing.  Which I hear is pretty common with Paget's.  This was all on April 2 so I received a follow up letter from radiologist (April 5) advising me that everything normal but due to my symptoms that brought me in that I needed to see my primary for follow up tests.  I know my body and know that something isn't right about this itchy nipple.  I'm calling my primary first thing to get appt to see breast surgion for a biopsy.  I need answers and am thankful I found this forum.  Any suggestions?

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Apr 6, 2014 09:15PM CassDugan wrote:

I had Paget's and my ultrasound & mammo were both clean, so that definitely can happen.  The next step for Paget's is a punch biopsy of the affected skin.  That doesn't have to be performed by a surgeon, my primary care physician did mine right in her clinic.  The punch biopsy really is the only way to be sure.  After that, there's a wait of 10-14 days for results.  

Good luck, and know that it's ok to get pushy about wanting answers for things going on with your body.

Surgery 5/16/2013 Lumpectomy: Left Surgery 6/13/2013 Lymph node removal: Left, Sentinel Radiation Therapy 7/7/2013 Breast, Lymph nodes Hormonal Therapy 9/14/2013
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Apr 7, 2014 11:51AM moreprecious wrote:

Just had F/U with my primary and he saw thicken and red area.  He prescribed antibotic and is referring me to Breast specialist!  Now more waiting! Is punch most effective way to determine dx?  Thanks


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Apr 7, 2014 02:46PM hoping42 wrote:

Hi there.  It is the ONLY way to diagnose Paget's.  As others have said, my mammogram, breast mri, ultrasound showed the dcis, but not the Paget's.  I was under anesthesia for a lumpectomy when I had the punch test.  I just knew I had to know, I knew I would worry about my symptoms on the nipple even if my pathology showed that they got all the dcis.  Well, they did get all the dcis, but Paget's was found.  I was dx 4 days after my lumpectomy, but have heard it can take 10-14 days.  I, too, had some of the symptoms you described.  A cracked nipple, wheat colored discharge, itching and burning.  I noticed this in November 2012, Doctor's said try a cream.  January 2013 was my routine, annual mammogram and the dcis was found.  I knew it wasn't normal for me. Medical professionals were not concerned that it was, but you are right to be an advocate for yourself!!!!!!!!!  Which you are!  (:   With that said, it can mimic a common skin rash---which it could also be.  Best of luck to you!!! xo

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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Apr 7, 2014 07:18PM moreprecious wrote:

Thanks so much hoping 42!  I won't be able to see Breast specialist until May 21st.! So glad I can talk to you about this!  All the best to you too!  xo

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Apr 10, 2014 10:05AM Renee72663 wrote:

Thinking that my swelling and blister like bumpy thing under the areola might be a basil cell carcinoma, I decided to be proactive and go to a dermatologist to check a little freckle like spot on the areola. She did a punch biopsy of the freckle and also a punch of the flesh outside the areola. The freckle thing she punched turned out to be a small Keratosis, and the other punch was eczema. Says they are not related to the swelling and redness. So, on to the surgery. I had my surgery on Mon, March 31. The excision was performed and they removed the abscess and some small lumps. I had my post op appt. yesterday, April 9. The Dr./Surgeon, said the pathology report says "ADH" and ALH", she said we have to do another surgery, same thing but she wants more tissue. She is having me get set up with an oncologist to discuss ongoing meds to take. After she says all that, she then looks at my breast and asks if the red and swelling came back, or did it never leave. I told her it just came back day before yesterday. So, while she is in there for the 2nd surgery, she'll try and get more of the abscess out. Weird thing is, she put 4 stitches and left small opening between each stitch for drainage purposes. I'm guessing that didn't help even though the blister things are no longer there. She said she'll just remove the stitches and re-open all at the same time.

Ok, so I guess I'll be moving myself over to the ALH and ADH page of this forum. Thanks for listening to me and I wish all of you the best. My prayers are with you all daily.

Renee

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Apr 10, 2014 12:04PM glennie19 wrote:

A biopsy is the only way to diagnose Pagets. My mammo, MRI and US were all clean. I had a rash on the areola on left side that came and went. Finally when it cracked open and bled,, ,I went to the doctor and insisted on a biopsy. 

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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Apr 14, 2014 04:39PM TheEyeGal wrote:

A few months ago I began experiencing severe itching on my left breast. I just assumed the skin was dry, so I bought a thick moisture cream to use, but it made no difference. I found myself unconsciuosly scratching at it in public (very embarrassing), so I started applying hydrocortisone cream. It helped a bit, but as soon as I discontinued its use, the itching and burning came right back. So, I bought a lidocaine cream to numb it up. No help. Then, the nipple started to look strange; swollen, red and scaly. I called my PCM and got a same day appointment thinking he could prescribe a stronger cream. Upon exam, he said I needed to see a surgeon ( he didn't prescribe anything). I saw the surgeon last week and after examination, he said I need a biopsy. It is scheduled for April 29th at a local surgery center, and will be done under IV sedation, which surprises me. I thought it would be a simple office procedure.

Now my question to anyone who has been diagnosed with Pagets: do ( or did) you experience much pain? My nipple hurts like crazy, but I am also very tender under my armpit, and feel a  burning sensation deep beneath the breast in the chest wall. Aleve helps, but as soon as it wears off the aching returns. Is this a symptom associated with Pagets?

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Apr 14, 2014 04:56PM Moderators wrote:

pagets disease

Dear TheEyeGal, Welcome to the community. In addition to the responses that you will receive from our wonderful members you may also want to check out our website's information on Paget's Disease as linked above. The Moderators

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 15, 2014 12:21PM Smitty333 wrote:

Hello Eyegal, I am surprised that they put you out with IV sedation. But to me it seems like your DR wants to make sure to get a good enough sample to biopsy. I am in the same boat as you at the moment. I have a lot of similar symptoms as you. I had a Diag. mam and ultrasound last week and radiologist said it was pagets. Dr does not agree, so biopsy is set for tomorrow. Waiting is no fun. I will be thinking of you and hope for B9 results. Take care.

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Apr 15, 2014 12:23PM Smitty333 wrote:

By the way to anyone  with Pagets I am wondering if anyone else had a radiologist diagnose pagets after mam and ultrasound??

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Apr 18, 2014 06:21AM TheEyeGal wrote:

Thanks Smitty333. It looks like we may be the only ones reading this particular board...I am anxiously awaiting my biopsy and will report back once it has been completed. 

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Apr 18, 2014 08:20AM Smitty333 wrote:

I think so eyegal. I have a app. Thursday for my results and will let you know. Fingers crossed for both of us!!

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Apr 22, 2014 08:18AM TheEyeGal wrote:

Best of luck to you Smitty333. I will look for your update. 

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Apr 22, 2014 11:00AM Smitty333 wrote:

Got great news today, I was not supposed to find out results until my App. on Thursday but Dr called to let me know it was not Pagets. Some kind of spongititus Dermotitis. Not sure on spelling yet. All I know is it is benign!! So relieved. It seems that it has a lot of the same symptoms and appearances of Pagets.  Will  be keeping my fingers crossed for you eyegal, hopefully you can join me in the benign category!

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Apr 22, 2014 11:34AM glennie19 wrote:

Smitty,, great news on it being benign!!!   All my scans, MRI, mammo, US, were clean, I was only diagnosed with biopsy. And I haven't heard/read of anyone who was diagnosed that way.  Maybe an experienced radiologist (and by that, I mean one who has seen Paget's before)  saw something that made him suspicious. But I *think* a biopsy is the only way to truly diagnose it.

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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Apr 22, 2014 11:36AM glennie19 wrote:

Hi Eyegal.  It's interesting that you are getting IV sedation, I sure didn't!! Just numbed up with lidocaine and that part hurts! Needles in the nipple--- OW!!!   My symptoms were all located around the nipple, itching and flaking skin. Not sure what your other symptoms mean, but hopefully you will get some answers soon. 

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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Apr 22, 2014 02:26PM Smitty333 wrote:

Hi Glennie, the radiologist put on the report that there was significant thickening of the nipple on imaging. I also had the flaking and itching. I was pretty convinced it was Pagets! What a relief!  Before my biopsy my surgeon did tell me that he would deaden the area and if I still had pain he would do IV sedation. But was not needed I did not fell a thing :)

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Apr 23, 2014 01:14PM hoping42 wrote:

Great news, Smitty!!!!!!!!!!!!  Wishing the best for all!!  *I have mentioned many times, but mine was found at lumpectomy when I begged for the punch test.  I had all the needles, etc. in the nipple area for the SNB that happened at lumpectomy.  The dx of Paget's along with the DCIS was a surprise to the doctors, but my gut told me otherwise.  Best wishes to everyone!

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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Apr 23, 2014 03:16PM Smitty333 wrote:

Thanks so much Danielle! So relieved and ready to take a break from the boobs!!! lol

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-
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Apr 25, 2014 04:12PM Kelly5757 wrote:

Hello,

I had a "Pagetoid Spread" in my path report. My primary tumor is IDC, secondary DCIS and Pagetoid Spread, I know pagets disease is cancer of the nipple but don't really understand the spread and if it can met. through the bloodstream.

Many Blessings

Kelly

Dx 3/10/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 4/3/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 5/8/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/1/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/25/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 26, 2014 08:35AM CassDugan wrote:

Paget's isn't precisely cancer of the nipple, but is rather a skin cancer that can affect the nipple and areola.  It is possible to get it in other body regions.

The relationship between Paget's and underlying cancer within the breast does not seem to be well understood.  It's often thought that tumor cells, having invaded the milk ducts, migrate outward to affect the skin near to the milk duct openings, i.e. the nipple region.  However, though it is rare, Paget's can occur without underlying cancer.  

In the same way that tumor cells can invade the milk ducts, sometimes tumor cells can be absorbed by your lymphatic system.  This is a system that absorbs fluid (lymph) that accumulates between body cells, transports it inward, and eventually returns the fluid to blood going back to the heart.  Along the way, there are clusters of lymph nodes where the lymph flow is consolidated and where some immune functions happen.  

Given the diagnosis under your signature, I see that your surgeon performed a sentinel lymph node biopsy.  This is when they use a contrast agent to find the lymph nodes that the are of the tumor drains into.  Those nodes are removed and biopsied.  That means the nodes are processed and then slices are looked at under a microscope to check for the presence of cancer cells.  0/3 means that you had 3 nodes removed and that none were positive.  Staged as "a" also means that no mets are known to exist.

So, getting back to your original question about mets... Tumor cells can migrate to invade distant regions through the blood stream.  But, tumor cells are usually transported into blood via the lymphatic system.  This can happen for IDC and other forms of cancer and is the route by which Paget's would metastasize if it were going to.  

Surgery 5/16/2013 Lumpectomy: Left Surgery 6/13/2013 Lymph node removal: Left, Sentinel Radiation Therapy 7/7/2013 Breast, Lymph nodes Hormonal Therapy 9/14/2013
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Apr 26, 2014 10:06AM TheEyeGal wrote:

Good news, Smitty333!! My biopsy is scheduled for this Tuesday. The type of biopsy that I am having is not a punch biopsy, but rather an "excisional biopsy", aka " open biopsy". I am not completely clear on why the doctor thinks that approach is best, but he is known as the best surgeon in our area, so I will trust his judgement I suppose...I am pretty uncomfortable so I will be glad to get some resolution one way or the other.

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Apr 26, 2014 06:49PM glennie19 wrote:

Keep us posted, EyeGal. 

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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Apr 28, 2014 03:36PM Smitty333 wrote:

Thanks eyegal! Good luck at your biopsy tomorrow. I bet you are so glad to be getting it over with. Sending good vibes your way!!

Dx 2/6/2014, LCIS Hormonal Therapy 5/15/2014 Hormonal Therapy 7/10/2014 Aromasin (exemestane) Dx Paget's, Stage 0, ER+, HER2-

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