Paget's Disease of the Breast. Looking for help.

Munt · New User Joined: 19 Dec 2006 Posts: 4

Good morning everyone. I was wondering if any of you would be able to point me to previous threads involving Paget's Disease of the Breast. My wife was recently diagnosed with this disease and I have done all of the standards readings, like Symptoms, Treatments, etc, etc, etc. What I'm looking for is some really good discussions about it, to understand people's feelings and their experiences with this disease.

Thanks in advance,

Sean.

Munt · New User Joined: 19 Dec 2006 Posts: 4

As much as I am glad that the members of this forum are stopping by and looking at this thread, I must say that I am a tad disappointed in not seeing a single response.

Thanks for your time anyhow,

Sean.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 796 Location: UK

Hello Sean - It's probably because Paget's is comparatively rare and there aren't many with the experience of it. Have you tried posting on other sites, such as BreastCancer.org or breastcancercare.org.uk? There may be someone who goes there but not here.

glass318 · New User Joined: 17 Dec 2006 Posts: 5

Hi there,

Paget's disease of the Breast (PDB) is relatively uncommon, thus the silence, I guess.

Treatment and prognosis depends on the answers to these questions:

- Is there a lump/mass in the affected breast?
- Is there invasive ductal carcinoma?
- Are there affected (metastatic) axillary lymph nodes?

PDB in association with a palpable lump tends to be found at a more advanced stage (ie, larger size, more frequent invasive disease and axillary node positivity, and multifocal underlying disease), than cases without a mass

For women with PDB associated with a palpable lump, the five-year survival is between 20 and 60 percent, while for women without an associated lump, five-year survival ranges from 75 to 100 percent.

If there is no lump or mass, the treatment paradoxically becomes a bit more controversial! Some advocate for a total mastectomy. I guess this is the traditional way, based on the fact that most women will have underlying carcinoma even if there is no mass (recurrence is less than 5%). However, there are a couple of small trials which showed excellent results with just nipple-areolar resection or similar limited, breast-conserving therapy.

If there is a lump (or ductal carcinoma or affected nodes), more comprehensive surgery may be required. An excision of the nipple-areolar complex together with the lump (if adjacent) can conserve breast but has to be complemented by radiation therapy..

There is no data on the use of Tamoxifen as adjuvant therapy in Paget's disease of the breast.

I hope your wife's disease has no underlying palpable lump.

Good Luck!
_________________
Glass

Munt · New User Joined: 19 Dec 2006 Posts: 4

Thank you soo much for the writeup.

The doctors found no underlying cancer. So we are hopeful.

Thanks so much again,

Sean.

streeterzmabeeterz · New User Joined: 15 Mar 2007 Posts: 1

[i]Hey Sean,

Hows things?
Just been looking on the net for anyone who has had or knows anyon with Paget's and how thay are dealing with it etc.

I was made aware of Pagets disease in October 2006, I moved to London for uni...I'm 20 by the way... And after about two weeks my nipple began to itch and i just passed it off as a rash, as i've been known to have sensitive skin in the past so i brushed it off. Then after a few weeks of it not getting any better and the itching increasing i looked up the symptoms on the internet. Paget's disease and cancer were flashin up all over the place, regardless of how i tried to avoid it so i got spooked, returned to my hometown and booked an appointment with the doctor.

By the time i got an appointment it had cleared up so the doctor said i must have had a cyst, regardless of my concerns about paget's. He passed me off, actually laughed at me and said, no chance as i'm tooo young!!! I was annoyed but still took on what he said and trusted him. A coupl of days later it scaled over again so i went back and saw a different doc as he weren't in. She went off his diagnosis and said it must in infected and gave me hydrocortizone cream, however giv her the benifit of the doubt she felt for lumps(which aren't always present) but there were none.

I feel like i'm goin on a bit, but i guess it's good to feul, cheers by the way!!!

I came back to London and carried on with my life as normal, but i kept a close eye on the nip. Around xmas i went back to the doctors as the cream hadn't worked at all and he tried to fob me off with more cream!!! So i said it dint work and i wanted to see someone else, preferably a specialist! In February i got an appointment, went to see the breast specialist and he said he, and i quote "stumped", He said he'd never seen anything like it before so he would refer me to a dermatologist. But he said it wasn't cancer though. How he came to that when he didn't know what it was in the first place i don't know!!!

Anyway, it's now March and lat week i found out i had an appointment with a dermatologist in MAY!!!! Because it spread from the nipple to the aerola i was concerned, so i registered witha new doctor down here and went to see him to raise my concerns. He says its a rash, dermatitas or eczma, even though the breast specialist wuda recognised this and also said that "it wasn't a rash, eczma or dermatitas"!!!!!!!!!!!
I told him about my concerns with it being Paget's and that i would like a biopsy, if anything to put my mind at rest. He and his fellow doctor assured me "in their medical opinion that there was no cause for concern" and managed to get mr an appointment with a dermatologist mid april!!!! Still 4 weeks away!!!

Over yhe past week it has been constantly discharging and been extremely painful, and is constantly like an open wound. So i rang my doctors today(yesterday 15th) an asked to speak to a doctor at ma surgery, she tols me it must be infected so will perscribe me witha antobiotic cream to clear it up...What a joke lemi tell ya!!!

So i booked an emergency appointment with a doctor but couldn't get one at my doctors but got one just up the road. I went in at 3.30, and to be honest thought she'd just look at my notes and give me pads to stop the nipple sticking to clothes. But instead she asked to look at it.

I have seen many doctors, they always remain professional and i guess thay tried their best, and this doctor today was no different, to be honest i thought she looked aabit pissed off to be in work ona nice day. Anyway, when she was looking and examining it her face was very serious. When she'd one and i came out from behind the curtain, she looked very upset. She said she was referin me to a brest specialist asap on an emrgency appointment..i.e within 2 weeks. I knew exactly why and what she was thinking but she didn't say. I guess she couldn't cuz she dint wanna stress me out and make me panic or anything. So I said is it paget's and she said thats what she thinks it is.

FINALLY someone had actually seen what i had seen for the past 6 months!!!! She was very upset cuz i don't think shes ever had to tell a 20 yr old before that she thinks they might have cancer... Tough for her i guess. She said i shuda had a biopsy long time back and it is long overdue.

I dont know if she felt a lump or not, i didn't ask but either way i'm finally going to either put my mind at rest or find out i've got cancer either way i think i'll be alright. Im bothered obviously but more annoyed that no one would listen until it doubled in size and looked like a bomb hit it!!!

I should be at the hospital sometime next week so will keep you updated.

Hope your wife is ok now, give her my love and keep smilin!!!! Laughing

Take it easy.

Liane[/i]

Munt · New User Joined: 19 Dec 2006 Posts: 4

Liane,

I am really sorry to hear about your situation. We were in the same boat. My wife has been complaining to her doctors for quite some time. This started very infrequently back in 2003. My wifes had just started to spread to the areola within the past 6 months too.

Unfortunately, I can't tell you it's been the best since being diagnosed. Good news is "You're not going to die from this" is what we've heard from two Oncologists and a plastic surgeon.

After the biopsy, the problems continued, and they needed to take my wifes nipple. The result of that was "extensive DCIS." The good thing was that even at that painful stage for my wife, it was caught early enough that it had not spread outside the ducts and was fully contained. There were no lumps and it never showed up on 3 mammograms (as it's not supposed to, from what the doctors have said.)

We have finally met with an Oncologist in Toronto, and just today we met with the plastic surgeon and we are trying to get surgery booked within the next 4 - 8 weeks.

They have recommended a full mastectomy, with immediate reconstruction.

Good luck to you and I hope you have a positive outcome from this. Please continue to write here and I can / will give you as much detail and information about our experience as I can.

Thanks for the good words,

Sean.

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