Please, somebody, help!

hoping42

Hello.  I posted a similar message in a different place.  So, I am trying here instead.  Here is my story:

I started having some nipple issues in September 2012.  I didn't think much of it, because I read that other things could cause your nipple to itch.  When it would itch, it would bleed a little, etc.  I called my gynocologist in December and he said to try some over the counter cream.  It seemed to help some.  I had my annual mammogram in January and was called back for microcalcifications, then the biopsy, mri, etc.  (I am going to mention that I am 42 years old.  I have dense breasts, blah, blah, blah.  I had a baseline at 35 and have had yearly mammograms since I was 38 when my mom was diagnosed with breast cancer.  She isw doing great today!!!!  She is my hero! ) II wasd diagnosed with high grade dcis.  However, this was in the outer upper quadrant--the mri showed some action heading toward my npple and other heading toward my chest wall.  My sugeon, thaought he could get clear margins due to my large brast size with a lumpectomy.  I had this done last Tuesdeay;.  It took 4 wires instead of the usual 2 because the area was so large.  However, I would have had 20 placed just to make sure3 that they got everything that they needed to out.  During my surgery they checked my sentinal node wheich I received a dye for earlier.  Thankfully in the OR and in the final pathology report-all was clear there.  Thank God!  I did insist on a nipple biopsy to be done.  This was not done before surgery, in fact, the many people who looked at my nipple told me not to be concerned.  Oh, my gosh, how does this happen!?  When I was called back Friday (2 days ago) they said that they hadd good news ande bad news.  The good news is is that all of the tissue they removed was dcis and not more.  The bad news was that my biopsy came up positive for pagets.  I am beyond scared!!!!!

I was supposed to have my post op appointment on Tuesday which has turned into another consulting appointment for further surgery, etc.  I am looking to you ladies for some help and assurance!!!!!!!  I Have a list of questions thast I am going to ask tomorrow and Tuesday, but just couldn't wrap my head around what they were saying when they called.  My mammogram and diagnostic mammogram did not show anything with the nipple and no calcifications behind the nipple.  The ultrasound showed nothing on anything.  Just glad it was clear.  The bilateral mri showed nothing in the nipple area (oh, I had the dye contrast kind)--just the large area of dcis.  Nothing showed up in the right breast of concern. 

I am just reaching out to women that have had similar things.  Could the dcis and this be unrelated?  Would it be odd to have an invasive component with absolutely nothing showing up on anything--no palpable on anything at any time.  Is Paget's considered invasive in and of itself?

It looks like I will have a mastectomy.  If this is what they want to do, I will ask for both.  This has been an emotional nightmare and I just can't keep pace with this anxiety and worry.  I just want to live a very long time and see my beautiful daughter grow up (11) and want to be that soccer mom on the sidelines not worried about this every second of every day. 

Please help and bless you for it!!!!!!!!!!!!!!!!!!

Alicethecat

Hello sweetie

I am sorry you're going through this.

You're at the worst stage at the moment. Once you have a treatment plan in place, it gets better - promise.

Here's some info:

http://www.nhs.uk/conditions/pagets-disease-of-the-nipple/Pages/introduction.aspx

I got diagnosed with another form of breast cancer (IDC) just over a year ago and it is a scary time.

However, I was cancer-free after the treatment and have remained so and hopefully so will you!

Best wishes

Alice

Jinkala

From what I've read, Paget's isn't considered invasive but it usually presents with some other sort of breast cancer along with it.

Mine was diagnosed as Paget's to begin with and a mammogram showed nothing else but an MRI found some DCIS.  After the mastectomy (I could have gone with lumpectomy and rads instead, they found a small bit of IDC with invasive characteristics.  If there hadn't been any IDC, I wouldn't have been advised to have chemo but since it was there and was HER2+, I ended up with chemo for 4 months and a year of herceptin treatments.

So - it sounds like yours is a bit less serious than mine and I'm doing fine so far with the treatments I've had.

Alicethecat

Hi Jinkala

I'm delighted you're doing well!

Sadly, my diagnosis was pretty serious - a grade 3 tumour (fast-growing) with HER2+ - but I'm getting Herceptin after a mastectomy, chemo and rads and all is well so far.

Long may it continue for us both!

Best wishes

Alice

satisfied_survivor

I was diagnosed with Paget's om 2009. I had sudden onset of severe itching of the nipple accompanied initially by  flakey skin on the nipple.  Mammogram showed nothing suspicious.  After two months treating topically  I had a biopsy of the nipple and areola.  It confirmed my thought that it was Paget's.  I also had DCIS and it was definitely Paget's. I opted for complete double mastectomy and reconstruction  for  own peace of mind.    I did not have radiation as it was zero stage with  no hormone or lymph node involvement. I have never regretted my choice of treatment.   There is no history of BC in my family.  Even after complete mastectomy I still am uneasy whenever I had a tender gland under my arm which I do tonight.  That explains my presence on this website 3 1/2 years postsurgery.  I will probably always be nervous. 

megamunch3

hoping42, I hope things are going well. Please keep us informed. I had a lumpectemomy last May, and noticed a couple months ago that my nipple was flaky and a bit crusty. Lotions didn't help. Ifinally looked online and read about Pagets- ugh. I have a feeling this is the problem, and have a mammogram/ appt. tomorrow. Damn this nervousness. I am on tamoxifen at the moment, going through menopause and I am a mess. Give us an update on your progress when you get a chance. It is good for us gals to stick together.

hoping42

Hello everyone!  I wanted to give you an update.  I had my double mastectomy with immediate reconstruction on February 21st.  I had the operation at 1 on Thursday and was home by 1 on Friday! (My choice)  I did really well and my genearl surgeon worked in tandem with my plastic surgeon.  Thankfully all the dcis was removed during the lumpectomy that occured on February 5th.  The pagets that remained was very miniscule-most removed during the punch biopsy.  Thankfully no invasive component was found at all!  I know how luck that is and I don't forget that for one moment.  I am doing very well and healing.  I went to my daughter's (11) soccer game last Sunday and plan to do so much more when these drains come out.  I still have the drains in almost 2 weeks out-I know that is not uncommon and have to wait until both are under 30 cc to get them removed.  I am only taking a pain pill at night and the antibiotics because of the drains.  My dcis is er/pr - so I don't know if/what the oncologist will have me do.  I have a follow up with general surgeon next week, the plastic surgeon for the tubes and fills then surgery and the oncologist on the 14th of March.  Again, I don't know what she will have me do. The final pathology did state that I had lots of changes going on in both breasts--lobular atrophy, fibrocystic changes, etc.  but thankfully nothing cancerous!  I hope that I can plan on living a long, healthy, lovely life!!!

I must give major kuddos to my medical team who took care of me like a person, called personanlly with results, called pathologist in front of me when they didn't have anything listed on the path report regarding the pagets (because they couldn't find it right away because so small), and for being very skilled.  I also thank my family, friends, all of you, and strangers that sent many well wishes and prayers!!!!!  God is wonderful and life is amazing!

I am thinking and praying for all of you!

Love, Danielle

SarahsMom

Wow - you had quite a couple of weeks, oh my gosh!  I am so glad the surgery went well, sounds like you're healing great and in good spirits/in a good place (makes all the difference for recovery!!)  I hope you continue to heal with each passing day, thanks for coming back to let us know how things went.  hugs to you, brave lady!

hoping42

Thank you so much, everyone!  Hugs back to you carpediem!!!!

Love, Danielle

SarahsMom

Just came back to say that I hope you're healing well!! Remember to keep taking it easy, don't be tempted to do too much to soon! Hugs to you :-)

Ariom

So thrilled to hear how well you are doing!

Take care!