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Topic: Newly Diagnosed Pagets Disease with underlying invasive cancer

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: Nov 15, 2014 02:26PM

Crystalontherocks83 wrote:

Hi I'm 31, Just recently Diagnosed and scheduled for a double Mastectomy in a couple weeks. My surgeon who i really do have confidence in seems to want to rush this surgery. I'm a little skeptical because I've been seeing a lot of alternative treatments that shrink and sometimes cure cancer. The Gerson Miracle, and reading Susan Sommers Book Breakthrough. Now I'm not so sure I want to go through all of this radical surgery and chemotherapy. Anyone out there that has tried using alternative medicine in combination with conventional?? I'm obviously scared but if I don't have to go through all of this i would really like to not. Anything helps guys. I'm pushed for time here and feeling suffocated by all the information and everyone else's opinions. But most of the friends and family who I have for support are great they just are not the ones who have to deal with the consequences that i am. Ya know the whole its easier said than done thing. That's why I'm reaching out to anyone on here that may have similar experience?

Dx 10/23/2014, Paget's Dx 11/7/2014, IDC, 2cm
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Nov 15, 2014 03:01PM glennie19 wrote:


Hi I had Paget's with underlying DCIS and had a Uni MX.  Why the bilateral?  Do you have cancer in both or is one prophylatic?   Do you know what type of underlying invasive cancer you have?  Do they suspect or know that you have positive nodes?

I'm not familiar with either of the alternatives you listed above.  There is a forum for alternative therapy and you may want to post your questions over there.  Do you know people who have done these alternative treatments and were successful?  I'm just curious cuz there is a lot of quackery out there.

None of us want to go thru with this.  It sucks, bottom line.

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 15, 2014 03:15PM Moderators wrote:

Hello Crystal and Welcome to the BCO community. We are sorry that your diagnosis brought you here but glad that you reached out. this is a terrific community with supportive and informed members who can provide personal experiences that can be very helpful and empowering to others walking similar paths. In addition to members' suggestions you may want to read more about Paget's Disease and its treatment on our site at Paget's Disease and you may want to check out this link to our forum on Complementary and Holistic links. We also have a forum devoted to Alternative Medicine where you may find additional information. Let us know how you are. The Mods

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Nov 17, 2014 10:02AM Crystalontherocks83 wrote:

Hi again, thanks for your replies. My surgeon said that the bilateral mx is because the MRI showed other other things that could lead to cancer. I have a fiberous tumor and a cyst in the other Breast that doesn't have the Pagets but he says because of my age it's what he recommends. The Breast with Pagets has an invasive tumor growing but it's not DCIS. It's actually under the nipple not in the ducts He said he won't know if my nodes are positive until after surgery. I will check out the articles related to alternative meds too I know there's a lot of quackery so I definitely want to be smart about it. I just feel like I'm being rushed into surgery without knowing all my options is all. Thanks for your listening and time.

Dx 10/23/2014, Paget's Dx 11/7/2014, IDC, 2cm
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Mar 17, 2015 02:29PM Laurenclem wrote:

So this is my first post and my first experience here.  Just went to another dr. after 3 years of a skin condition that I believe is an auto immune disorder.  This new physician looked at my rash and agrees it is probably psoriasis.  However, during the exam, he found a hard, non movable lump in my axilla and believes that I have Pagets on my right breast. Then proceeds to tell me he is concerned about the skin issue but the lump and nipple rash are a much bigger problem.   Being a little shell shocked, I spoke with his nurse again on Monday while dropping off a urine sample.  She said 'yes, he believes it is Pagets'.  I am an RN, and have been digging through everything I can find.  I get blood work done today and then results on Monday, then we go from there. 

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Mar 17, 2015 07:21PM - edited Mar 17, 2015 07:21PM by Moderators

Welcome to BCO Lauraclem. We hope that your doctor has referred you for some breast scan to check underlying tissue too. Hoping for a good result but sorry you have to deal with Psoriasis too.

All the best, The Mods

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Apr 20, 2015 02:44PM - edited Apr 20, 2015 02:45PM by Momnorth104

I am new to this site trying to find explanations to my symptoms. There is not a lot out there that goes with them and no I have not lost weight nor on hormone therapy or drink a lot of caffeine. I have had a intense itchy nipple on my right side since the end of November. When I first mentioned to a PA she stated I probably had dry skin and to use lotion and cortisone on it. (I have never had dry nipples) but I did....no luck. The itch wakes me up at night and I have to remove myself to itch in private at work. Fast forward to last week....I asked my primary about this and told her that my right breast has shrunk about 1 1/2 cup sizes since December, that the itch is just as intense and I have small little bumps on my areola. There is no discharge are color change of the areola and the nipple is just bright red with one little skin tag type form on the tip. Well she said that she had no idea and was referring me to a breast specialist. A week later no phone call or appointment. I have called and they say it takes time. I also have MS which in fact makes my immune system low. Just impatient and worried. Everything I look at points to Pagets.

Has anyone had any similar symptom's or experiences?

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Jun 3, 2015 12:19AM - edited Jun 3, 2015 12:30AM by NATSGSG


Hello @Crystalontherocks83

I posted this link below contains 2269 scientific articles of Paget's disease of the breast at two other threads but thought I'll paste it here to make it easier for you. Hopefully you'll find them useful and informative.

http://www.ncbi.nlm.nih.gov/pmc/?term=paget+disease+of+the+breast

In the interim, you may wish to visit the Society for Immunotherapy of Cancer (SITC) to see if there's anything in the works using immunotherapy to treat this disease. It is current the hot cancer treatment topic. Or, you may wish to have them include you in their mailing list should there are any new development? Here's their link:

http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

Take care, and have a fantastic day, wherever you are @@!!!@@

P.S.

Below VIDEO link talks about the use of immunotherapy in cancer treatment and fascinating to watch and understand.

http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

NATSGSG Dx 3/16/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Radiation Therapy 8/12/2015 Whole-breast: Breast Surgery Lumpectomy: Right; Lymph node removal: Right
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Aug 24, 2015 03:27PM Snowy58 wrote:

I'm not sure how to post and new to this site. My Mother died of breast cancer and I have been checked every year sometimes more than every year since I was 30 and I'm now 56. I go in on Friday for another mammogram - last time I had to have an ultrasound my first one. They wanted to do an MRI on me. They said just lots of cysts. BUT right after my appointment I noticed the area around my left nipple was getting slightly darker - the area is usually really, really light I'm very fair. The nipple seems redder too. I went to my GYNO and he blew me off. I asked my husband and he said it looks a little different but your doctor said not to worry I even asked my BFF she said they are different. What should I do - should I worry? Could this be the very beginning of Paget's?

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Aug 24, 2015 05:20PM Moderators wrote:

Snowy58, we are sorry to hear about your anxieties regarding the breast changes. Really the best thing is to consult with your physicians, and have it checked out. Please keep us posted!

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