Pagets Disease Help

ScaredSteph

Quick Backstory:

Feb 2017 Felt small lump. Went to OB/GYN. He told me that it was probably nothing and not to worry.

June 2017 Felt larger and major itching. Went to PCP (because I have to have a referral for EVERYTHING!!). She felt it and said it was probably nothing but that she did see some redness on the skin around the areola. Sent me to a breast radiologist specialist.

2 weeks ago (6/8) Had ultrasound on lump. She thought it was either a fibroadenoma or Phyllodes tumor. and suggested a biopsy.

On 6/20 Had a core needle biopsy. Should have had results by the next afternoon.

On 6/23 The radiologist called and said that the reason it took longer was because they had a conference with other pathologists to try and determine what it was. They were unable to tell and recommended having it removed.

In the meantime the itching on the nipple/areola and skin around has been so so bad. we have done topical steroid cream and it has not helped. I have also noticed the skin looking very scaley. It doesn't look like eczema. I have also had some tingles in my nipple quiet often. The nipple and areola has changed color (within a few hours the other day).Has anyone been dignosed with Pagets Disease and had these symptoms in the beginning?

I go to the breast surgeon tomorrow morning (have never met him yet) but his PA called and they already have me scheduled for surgery Thursday "due to the timeliness." He already has all scans and path reports and has studied them already. Just feeling concerned and anxious.

Any help or ideas welcome! Thanks.  

MTwoman

ScaredSteph, so sorry that you're here with breast health concerns. I don't have any info on Paget's, but it is no wonder you're feeling concerned and axious, you've not really been told what is going on, just that you've been scheduled for surgery on Thursday! I would recommend that you take someone with you in the morning. Someone who is very calm and can write quickly. You'll want to record everything that the BS says, and it is so very difficult to recall info given when you're stressed. If there isn't such a person, then I'd recommend asking for permission to record the meeting so you can review it later. It does sound like you'll be getting a lot of info fast, as surgery is scheduled this week. I also think that having a good list of questions could be helpful. I'm sure others will be along with good questions to add, but I'll start you off:

1) what does my pathology report say (and make sure to get a copy) is my diagnosis

2) what is the surgical plan? (i.e. excisional biopsy? etc) and what will recovery look like?

3) is there any other types of recommended treatment or follow up for what I have?

Please do let us know how we can help and what you need from us. Good luck for B9 results!

MTwoman

Steph, any update?

ScaredSteph

He is not sure what it is. He said the sample showed a complex of cells. Whatever that means. I have surgery on Thursday. He will send some more in to pathology to get a definitive answer. He feels that the changes in skin and tingling is from the fibrocystic changes in the breast from whatever this mass is. He still feels fairly certain that it is either a fibroadenoma or phyllodes tumor. Any tips for surgery and after? Mainly after? Thanks for checking

MTwoman

Oh goodness Steph, that must be difficult to come away from your meeting without many more answers. ((hugs)) It is good that he's continuing to pursue this and get you answers. So he is performing an excisional biopsy (the main difference between that and a lumpectomy, from my understanding, is that a lumpectomy implies bc and excisional biopsy does not). I didn't have much difficulty during or after my lx. I was under anesthesia (I don't have problems with that) and came out of the surgery with a bit of soreness, but nothing unmanageable. There is a thread "lumpectomy lounge" on the surgery, before/during/after forum that might provide you with some good intell (especially the after). Keep yourself good and distracted prior to surgery and take extra care of yourself over the long weekend. Hopefully you'll have good (and b9) answers early next week!

ScaredSteph

Thank you! It is a bit frustrating but he is one of the best breast cancer surgeons around here so I trust him. What was the pain like after? That's the main thing that bothers me now. I am a chicken and have a low pain tolerance. Imagine having that and living with kidney stones!!! Anyways, thanks for your help and I will go look for that board.

Steph

ScaredSteph

I just remembered the long term he used. He called it a fibroepithelial lesion.

MTwoman

Honestly, I didn't have what I would consider pain after my lx, I had more discomfort that was manageable. Go to the board and look for tips to minimize discomfort!

Also, here is a summary of fibroepithelial lesions of the breast from the journal RadioGraphics

http://pubs.rsna.org/doi/full/10.1148/rg.256045183

ScaredSteph

Well, yesterday was pretty good. Pain after wasn't too bad. I am praying that the margins come back clean and we don't have to do it again. Today though has been a little more difficult. I am still pretty groggy. Emotional. Not sure if that's from all the meds yesterday. From the way he talked I would be back to 100% today. I always forget that I take longer to recover. I blame my dad for that! This binder is making it 100 times worse. It's just annoying and I can't sleep with it. Cannot take it off till Monday. Ugh. Someone please tell never me these feelings are ok and normal

MTwoman

Steph, absolutely normal and absolutely ok. As much as the binder is uncomfortable, please do follow your doc's recommendation. It will aid in your healing, even if it is uncomfortable. Did you doc tell you when they'd have pathology back? I am hoping you get B9 results back quickly so you can move forward and enjoy your summer!

(edited to add) Oh, almost forgot, there is a before, during and after surgery forum that might be helpful for comfort tips. Anything regarding lumpectomy would fit for an excisional biopsy. Hope you feel better soon!

ScaredSteph

Doctor just called and it is not a Phyllodes tumor. Just a regular fibroadenoma. I will keep the binder on. Just annoying to someone who has sensory issues when I try to sleep! I will get on there and get some tips. Thank you so much

MinusTwo

Steph - congrats. Glad it's only "annoying" and not cancer.