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Update: Paget’s
21 Posts

Hi All,

I want to give you an update on where I am at today. I am 8 weeks of recovery post mastectomy (left side) after a punch biopsy diagnosis of Paget's disease of the breast.

Background: I had an eczema like rash on the areola and nipple. GP treated with steroid cream for 1 mo. When this didn't clear it up, I was sent to a skin specialist who suspected Paget's and did a punch biopsy March 22. April 9 biopsy confirmed Paget's disease of the breast. Referred to Surgeon, April 27 discussed surgical options. Normal protocol is lumpectomy and radiation, however radiation was not an option for me as I already had my lifetime amount for Hodgekin's in my early 20's. Only option was a mastectomy with or with or without reconstruction. My only reconstruction option was a Flap procedure, as implants require tissue expansion which my previous radiation made impossible. I chose no reconstruction, I am 48, and I didn't know how well I would heal per the previous radiation. I had sentinel node mapping on May 25 and surgery on May 26.

Pathology: Successful surgery with clear boarders. Tumour size was .8cm by .3cm. Identified as “Invasive” Paget's disease of the breast, Stage 1A, Grade 2, with DCIS Grade 3. Lymph nodes were clear. Biomarker's came back as triple positive: Estrogen+, Progesterone+ and HER2+.

I met with the medical oncologist yesterday to find out the recommended treatment: 5 years of Hormone therapy, (daily pill) Tamoxifen (Novadex/Tamofen) to prevent the hormones from stimulating any cancer cells left behind. 1 year of Targeted therapy (17 treatments, every third week) of Trastuzumab (Herceptin) to prevent HER2 protein from stimulating any possible cancer cells left behind. And because Herceptin works better in conjunction with a chemo drug, 12 weeks of (small dose once per week) Paclitaxel (Taxol). This will hopefully reduce chances of allergic reaction.

I will start treatments the end of next week, and will have a barrage of appointments and tests prior to then. ECG, blood, and have a port installed. Chemo from Hodgekin's burnt out my veins so a port is a must. I will be a trophy shelf of scars at the end of this!

I am accepting tips and tricks to minimize side effects! I have heard icing hands and feet should help prevent neuropathy during taxol. I also understand I will lose my hair… again! Anything else? Besides eat well and keep exercising!

I am off to a women's retreat this weekend in Water Valley, AB. 3 days of yoga, hiking, kayaking, nature and good energy. Good preparation for the weeks to come.

Thank you all for posting your stories and the questions you have asked and answered. I have learned a lot from this group and was well prepared for hearing the recommended treatment. *Interesting fact: There are only 30 clinical cases of “Invasive” Paget's disease! 31 now! With treatment recurrence is only 1-2%!

5 Replies
2051 Posts

@Kit08 thanks for updating - you say triple negative, but I think you mean triple positive?

I had Paclitaxel and tolerated it reasonably. I do have some minor neuropathy for it. Unusually this occurred for me after the first dose, whereas it’s usually cumulative. They did reduce the dose (they assume most patients won’t complete and calculate based on assumption of 70% dose). I was already fatigued from other chemo, but taxol wasn’t quite so bad - I continued my 2 hour daily naps until chemo was done to help my body recover. I’ve heard many women can work through weekly taxol, but of course working potentially exposes you to more infections which you might want to avoid.

The antiemetics caused a few issues - constipation and diarrhea but I managed both ok. I slept through my chemo sessions thanks to the Benadryl that accompanies taxol.

I had a port - definitely the way to go. Made life so much easier. Only issue I had was with me being a skinny lass with no adipose tissue, my port stuck out. It caught on clothing, purse strap, and seat belt. I padded the seat belt and learned to plan my clothes for comfort!

Good luck - happy to answer other questions.

congrats on being number 31 xx

1728 Posts
Kit08‍ Thanks for updating us as to your status. One of the things I did with my paclitaxol infusions was to ice my hands and feet while the infusion was running. I have virtually no neuropathy in my hands and feet, with only some numbness periodically. They had special mitts and booties in the chemo suite that I was able to use. You could ask your chemo nurse
for them.

Wishing you well with the rest of your treatment.
21 Posts
Essjay‍ Yes, you are correct triple positive! I have corrected in my post.

I needed to get this all written out and found some levity in doing so. I also want to have a record of it for the next person who needs the information. I have learned so much from everyone else’s journeys.
Thank you all for helping me get this far!
1297 Posts


wow! what a whirlwind--THANK YOU so much for posting this detailed account of your Pagets story. this will no doubt help #32 and more! so reassuring to see that low recurrence rate…happy for you!

the retreat sounds like the perfect way to centre yourself and make ready for the next chapters of your experience. (I hope the smoke from our neighbours clears for your physical activities).

I cannot add any personal tips as I wasn't offered chemotherapy, but I do wish you well with your treatments.


#breastpagets #rarecancers #cancertreatment

312 Posts

very similar story to a co-worker with Paget's Triple positive. She did double mastectomy +15 months chemo including the 12 of herceptin. She was also a similar age. That was 6 years ago and she is doing great. I am also triple positive and had a port with cancer 1.0. Get some EMLA from the pharmacy - small tube is plenty (it is expensive). You put a blob on the port, cover with cellophane at least 30 min before chemo. You won't even feel the needle going in. Although I called the port my third nipple and had a love-hate relationship with it, now that I don't have one and have treatment every 3 week for life - it was way more comfortable than the needle in the hand and WAY better than the nurses doing multiple pokes trying to find a good vein. Treatment will be crappy. You will lose your hair. But it is short term and doable. When you get to herceptin only - those are easy. in/out in 45 min with no side effects. It is a long haul but just start crossing them off and before you know it you will be half way and then done. The protocols for triple positive - even those of us with stage 4 - have good outcomes and they can keep us around for a long time.

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