left nipple itchy concern ( last almost 2 months already)

mtl114 - The only way to test for Pagets is with a punch biopsy. My scans all came back negative as well so my GYN referred me to a dermatologist. I did the prescription steroids as well for 10 days but they did not help. It was the dermatologist that did the punch biopsy. Your symptoms sound very similar to mine. Is there any way for you to get in sooner with another dermatologist?

I think you may be able to get in sooner to a dermatologist since all you're looking for right now is the punch biopsy. I agree, that Pagets isn't seen as often but it is possible to have Pagets without any other underlying issue. Therefore there would be no lump to feel. In my case the only thing that picked up the DCIS under the Pagets was the MRI after the Pagets diagnosis. Since you've already tried a prescription ointment I don't see any reason whey they wouldn't just go forward with the biopsy.

Keep us posted!

Hi @Mtl114

Agree with MBPooch 100% - you need to go to a breast clinic and ask for a punch biopsy. I can categorically state that Paget's certainly does not always present with an underlying lump, and even if there is something underlying it won't necessarily be seen on mammogram / ultrasound / MRI. I am proof of that, I had obvious Paget's open sore on nipple and slight discharge, sensitive /itchy and painful. NOTHING underlying showed on mammogram or ulstrasound, but the breast surgeon still did a punch biopsy to test for Paget's. it was positive so I had the nipple and section of tissue underneath removed. When the tissue underneath was tested they found 2cm DCIS high grade.

Due to the fact that there could be other areas lurking unseen by mammogram and ultrasound they offered a mastectomy. I am having the op next week.

Keep insisting. Good luck.

Eliza

Would it be easier to focus on finding a dermatologist right now? They can do the punch biopsy and you may be able to get in and have it done sooner than trying to get into a breast specialist.

Eliza - my situation was SO much like yours! High grade DCIS underneath the Pagets that did not show up on mammogram or ultra sound. It did show up on MRI after my Pagets diagnosis. I also did a BMX and haven't regretted it for a minute! Recovery was also not nearly as bad as I had imagined. Good luck to you next week!!!

Thanks MBPooch

It was your story originally that helped me decide on the mastectomy decision if you remember, after my lumpectomy for Paget's and then the DCIS diagnosis, my options were mastectomy or yearly screening. It was a no brainer but helped by your and others experiences. I did ask for a BMX for symmetry, as I never wear a bra, but they were not happy with that, however they have said to wait for 6 months or so after the MMX and if I was really not happy living with the one, then they would consider a 2nd mastectomy for symmetry reasons as I am so averse to reconstruction.

Thanks for your thoughts.

All the best

Eliza

I’m in the US and needed a dermatologist to do a punch biopsy and test for Paget’s. Mammogram and ultrasound showed nothing. When the biopsy test came back positive, the dermatologist referred me to a breast center. Do not worry if the earliest appointment is in a few weeks. If you can get it sooner, great, but 3 weeks isn’t too bad. They will have the results about a week after. Yes, you may need to insist on a biopsy, which involves taking a chunk of skin off your nipple. The pain medication shot stings, but the biopsy itself shouldn’t hurt. Maybe take Tylenol beforehand to help once the shot wears off. If you get a positive diagnosis of Paget’s, a breast center should get you in more quickly (here it’s about a week) and start treatment.

I only had a uni-mx, and I too had a lot of difficulty making the decision. One of the things that made it so difficult is that I was expecting that if I made the "right decision," I would feel better about things. At some point, I realized I did not want to make either choice - I just wanted to be well and have a normal body again! - but I needed to make a decision and move forward, for my health. It removed the pressure to "feel good" about the decision.

I thought about what was most important to me - healing fast, getting back to my life, not having more surgeries if I could avoid them. I also know I get very distracted by changes in my bodily sensations and it seemed like the implant process would be distracting for me. I felt more confident about my ability to control my shape with forms/stuffing, than a more fixed implant. One other bonus of the non-recon option was a faster surgery. I'd had two surgeries already and was so tired and needed to be done.

As you can see, it's a very personal decision. I know women who were willing to do whatever it took with their recon because they wanted a shape like their pre-diagnosis shape. I was not as attached. I felt like if I had any complications or needed more surgery, I would regret my decision.

We all have tough days when we think "what if I'd taken the other path" but in the end, both are acceptable options and we just have to pick the path we're most willing to take forward.

Know that you may not feel great about the options you have, but you are taking your best shot at removing the cancer and that is the most important thing. The rest you will figure out - women live good lives both ways.

Glad you're going to stay persistent! It could very well be nothing but mine didn't "look" like Pagets either.

I suppose I was lucky. I told my dermatologist about being a survivor of IDC in other breast & had a rash on other nipple. She said she could give me a cream or a punch biopsy. I opted for the biopsy. I don’t have results yet but feel relieved I got test done.