Pagets

I would very much like to be in touch with anyone here, who’s been diagnosed with Pagets and gone through surgery.
It’s now been a week since my operation which included a reduction and any help/advice would be very much appreciated X

Hi Libb901

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Best wishes
Anna
Digital Community Officer

No advice,however,had Pagets after Mx…so nipple removed .hope you are OK…gentle hugs

Hello Libb,I hope you are well and recovering after your operation. I was diagnosed with Paget’s disease of my left nipple on 20/01/16 following a punch biopsy. This was following symptoms to my nipple (thankfully!).
Further mammograms/ultrasounds/biopsies later and a large area >5cm high grade DCIS and palpable lump was also found within the Breast. They initially thought this was invasive cancer.Any way, long story short and I have had a bilateral mastectomy with sentinel lymph node removal 25th Feb and just finished chest wall radiotherapy. I opted not to have reconstruction and obviously now have lost nipples. Coming out the other side now. And thankfully no invasive cancer was found in my final pathology post mastectomy (phew).

I am thankful for my rare Paget’s as without it it wouldn’t have flagged what was going on behind the nipple and given the high grade DCIS could have been a different story in 6 months or so…

What advice do you need? Fingers crossed for your pathology results- waiting is the worst bit!

Xx

That is fantastic news for you and very pleased re: good pathology results. Radiotherapy is doable if you do need it- just follow their instructions.

How old are you just out of interest? Paget’s is very rare and presents normally over 55 I think. Im only 32 so came to a great shock to everyone!!

The best part was as I went for my mastectomy I had student officers coming to look at my nipple! ? Still if it helps people be diagnosed quicker ! X

Student *nurses

I had a nipple discharge and had to have the nipple removed along witha 3mm cancer. I also have HER2 so chemo is a must. Nobody mentioned Pagets - well I don’t think so but I have not been taking it all in to be honest with you. I will ask them when I go back.

Hi
i was originally diagnosed with DCIS via a routine mammogram that showed some “pulling”. At appointment I mentioned to the consultant I had a bit of dry skin around the nipple. He took a biopsy but was not particularly concerned. I was booked for lumpectomy on 4thJuly. On 1st the results came back as Paget’s disease. So last Saturday we saw the consultant as the op would now be mastectomy, reconstruction plus sential lymph node removal for testing! It’s all been a bit of a whirlwind!

The consultant does not think I will require radio or chemotherapy but I guess I will know for certain when the results are all back. The lymph node showed no cancer cells.

 

I a so,thankful for routine mammograms as the lump although 8mm could not be felt at all and if not for that I may not have mentioned the dry skin as with menopause my skin hair has all got much dryer!
op went ahead on 4th and came home the next day. I’m 53.

Hi Nicki, i have just been diagnosed with paget of the nipple and also a small cancerous lump in my breast am booked for my op  10th Nov. The thing is what do I choose pple removal then a lumpoctamy to remove the cancer then  every day for 6 weeks radiotherapy or a full mastectamy  no treatment still chewing all this over  . How are you after this op. I believe pagets is quite rare trust us!!!

Hi I had pagets but also invasive ductile so had a db mastectomy as I had a double whammy!