The ideal treatment for Paget's disease

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Polyana
Polyana Member Posts: 200
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Indeed most of you have read my different posts in this discussion board. And it seems very much that I am in a dilemma since I don't know what to do. I was told I have IDC diagnosed in July 2010 (misdiagnosed for 3 yrs). After I did my MRI it seems that I have Paget's disease of the breast. I call any one on this board who has or had PD to help me know what I am passing through:

My biopsy report did not say I have pagetoid cells, it said I have IDC intermediate and er/pr + and Her2 -

I was given 2 options either to start chemo then surgery or surgery then what ever treatment comes after pathology.

I tried chemo, It was the worse experience I had, I cut it, and told my doc I can't handle it. He told me that then I need to do the operation.

My surgeon told me that I then will need a Mx coz I did not do the chemo (chemo was to shrink the tumor or make it disappear).

I opted for a local anesthesia for the surgery, and was prepared for that. On the day of the surgery the hospital and my doctor told me that there is no way to do it on local, I have to do general. I wasn't prepared and was at a great situation of panic attack. I could not go through it, and I was the talk of every one in the hospital.

Back to step 0, my family is disappointed from me, they refuse to talk to me since that day, so is my husband. I only have my psychologist whom I talk to and express my depression to him.

I ask for the help of each and every individual reading this note, what is ideal, should I go back and start chemo again, and hold on there during the session..

What is the ideal treatment for paget's disease, what are the experiences of delayed treatment.

Please, please share you stories which might give me a push to go ahead. Even if need be please send me a msg for privacy.

I live here in DC, any one who could recommend a surgeon who did there procedure under local (please send me a msg o the address), as I have anxiety issues from the general anesthesia which I am currently being treated for with my psychologist, but this will take time, so I need to act, and start on my treatment seriously, but how, and start what............

Awaiting for your responses

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    I had Paget's, but it was in conjunction with a separate tumor elsewhere in the breast; I didn't have any tumor(s) in the nipple itself, which if I'm reading your post correctly is what you have. I had Paget's cells in the nipple but not anything "solid", so in my case the breast tumor came first and then prompted the development of the Paget's cells and outward symptoms.

    I chose a BMX because I felt "safest" that way. I would have done that anyway, Paget's or no Paget's.  From everything I have read, surgery is the preferred option for Paget's tumors treatment although lumpectomy followed by radiation appears to be an alternate choice (depending on the size of the tumor I would assume).

    Apparantly the jury is still out as to "which comes first": Paget's cells spontaneously appearing and creating a tumor there, or a tumor elsewhere prompting the appearance of Paget's cells in the nipple. In my case it was definitely the second situation but I have a feeling it depends on each individual's body and how it responds to things. Paget's is rare in the first place (only 1% of BC cases show it) so there's not a huge pool of statistics to work from, compared to "regular" BC.

    Sorry I couldn't be of more help. Frown

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  • zap
    zap Member Posts: 2,017
    edited August 2010

     I had Pagets as well but it prsented  itself like LovemyGardens.  I had the rash on the nipple.  The first biopsy showed no cancer so I went on my merry way.  The rash got bad so I went to a dermatologist 10 months later and a biopsy was done again and this time it showed cancer.  The latter was just beneath the nipple I opted for lumpectomy, chemo, radiation and am now on arimidex.  It is stage II with okay nodes.  The whole process was frightening, but in fact very doable and I am fine now.

     My story with Pagets sounds different than your own.  You must feel so alone right now.  I am hoping your psychiatrist can help you reach a point whereby you can choose a procedure and see it through.  I do understand your fear.  Good luck!

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    zap, I had almost the identical scenario with my biopsies!  Surprised  They "missed" the Paget's cells on biopsy #1 but then 10 months later they did another biopsy because the nipple condition wasn't responding to anything. That second biopsy was full of Paget's cells. And I had even TOLD the first doctor that I wanted biopsy #1 in order to make sure it wasn't Paget's!! 

    I wonder if many pathologists just don't recognize Paget's because they encounter it so rarely?

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  • heatherbless
    heatherbless Member Posts: 295
    edited August 2010

    I just think you should look into another surgeon/plastic surgeon that might specialize in some of these issues--not a general surgeon.  Check into:  www.naturalbreastreconstruction.com

    Dr. Craige and Dr. Kline out of Charleston, SC--

    best wishes, heather

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  • zap
    zap Member Posts: 2,017
    edited August 2010

    lovemygarden:

    That is odd.  I was told that the needle (or whatever it was) just missed the site of the cancer. I went to a breast cancer surgeon and she felt terrible when I called 10 months later and told her the dermatologist found it with her biopsy.  The tumor was "hiding" and wasn't found  on the  mammogram or ultrasound and it wasn't all that tiny either.

    It is a blessing the dermatologist was so aggressive.  I just wanted creams for the darn thing but she insisted on the biopsy even though I had one before and it was benign.  She saved my life so to speak.

     I  wonder if they keep the actual tissue somewhere.  I know the breast surgeon was so troubled that she told me they went back to look at "it" and I am not sure if "it" ws the report or the actual tissue.

    It never occurred to me that the paget cells caused the cancer.  I just assumed the cancer caused the pagets!  Since this was so sneaky I now get an mri each year.

    In a funny sort of way it probably was okay the way it worked out as my daughter's wedding was during the first episode and I would have been a wreck if she had found the cancer then!Embarassed!

    Good luck to you!

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    Don't know if they keep the actual tissue but I know the pathology lab does keep all the color slides. They reviewed my first biopsy slides too, after the second biopsy came up so "loaded". Sure enough, the cells were there, a small group hiding out in the lower layer of the biopsy core. Not many of 'em, but they were definitely there and someone's eyes just did not see them. Scary. Would I have been only at Stage 1 if they had been noticed the first time? Who knows? Doesn't really matter because I would still have ended up choosing the same treatment (BMX/chemo).

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  • flash
    flash Member Posts: 1,685
    edited August 2010

    there are two schools of thought.  Either paget's cells (which are a type of cancer, don't misunderstand.) transform into a different type of cancer cell over time or the other idea is that it develops individually and if something else develops later it is a coincidence.  Pagets is commonly missed and commonly then found later with an additional cancer. Paget's can be found topically on skin but can be found anywhere throughout  the nipple and skin of the nipple. 

     So far, the transformation of the cells into further dcis and later idc seems to be the more popular and supported of the two ideas.

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    In my case the biopsies of the Paget's area showed no lymphatic involvement, and the tumor that showed up elsewhere in the breast on the mammo was IDC and node-negative also. Whether that tumor started out as DCIS, and what point in time it first appeared, there's no way of knowing, of course. I only know for sure the time of the first topical indication of Paget's.

    I just assumed that if there were a "road map" of the ducts in that breast, there must have been a duct running from the tumor to the nipple and the atypical cells got from Point A to Point B on that "road". What's impossible to know is the direction they were travelling: was it nipple-to-lower breast, or lower breast-to-nipple? Regardless, it seems like there was a whole lotta cellular traffic on that "road" at some point! Surprised

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  • mspradley
    mspradley Member Posts: 129
    edited October 2010

    I had Paget's along with a 4cm tumor.  After my mastectomy, my surgeon noted that he was extremely surprised at the Paget's since I had no external symptoms, so thank goodness for the pathology report.  I've since completed 6 rounds of chemo plus radiation and am about halfway through the year of Herceptin+Avastin (clinical trial).  

    Not that I am hung up on the staging - well, maybe I am - anyway, I often wonder if I fall in line for stage IIb without Paget's, then does the addition of Paget's knock me up to stage III?  My oncologist really avoids the talk of staging and explains that the formulas for staging in his opinion have not been updated to align with new research.

    Nonetheless, I am going to have the other breast removed when I have my reconstructive surgery done.  My clinical trial includes close monitoring and testing for the next 10 years, but I don't want to have to go through the mammograms and diagnostic biopsies ever again. 

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