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New rare breast cancer diagnosis
Coco7
9 Posts

Hello everyone. This is my first time posting as I only found out two days ago that I have a rare type of breast cancer called solid papillary carcinoma. I’m still in a little bit of shock as I was not expecting to get diagnosed with cancer since my August biopsy showed a benign tumor. I had a lumpectomy in December and surgeon thought everything went well and she got it all but now we have this diagnosis and I still don’t know if it’s invasive or not. We are awaiting one further pathologists report to confirm that it is hopefully in situ but some cancer was still found in the margins which concerns me. It’s all the waiting that I am finding very difficult as it’s been a long five months of mammograms, ultrasounds, biopsies and a lumpectomy, waiting for pathology reports, etc. I know everyone on here can relate so I’m hoping that there might be someone that has heard of this type of breast cancer? it’s so rare it affects less than 1% of the population. Also any words of wisdom while I am awaiting further treatment options. At this point it looks like there will be further surgery after an MRI which of course I’m still waiting to go for and since the cancer is in my nipple, I will be losing that too. Looks like down the road I will need some tattooing. So if anyone has any information on anything they’ve gone through similar to this, it would be greatly appreciated. Thank you for any support or encouragement as I start on my journey.

9 Replies
Runner Girl
2449 Posts

@Coco7

Welcome, I am sorry for this turn of events. I did a search of the site and did not find anyone with this type of rare breast cancer. A quick search yielded the following information:

Solid papillary carcinomas are tumors morphologically characterized by round, well-defined nodules composed of low-grade ductal cells separated by fibrovascular cores. These tumors are rare and affect predominantly older women. Although they are considered in situ carcinomas, debate and uncertainty still exist regarding their true nature, because immunohistochemistry for myoepithelial cells has shown absence of myoepithelial cell layer along the epithelial-stromal interface of the tumor in many cases. Clinically, these tumors present as a palpable, centrally located mass or as bloody nipple discharge. Pathologically, solid papillary carcinomas exhibit low-grade features, and often the tumors display neuroendocrine and mucinous differentiation. In the majority of cases an associated invasive carcinoma is present, with colloid and neuroendocrine carcinomas being the most common. The pathologic differential diagnosis is broad and ranges from benign to malignant lesions. The treatment for solid papillary carcinomas is surgical excision. When invasive carcinoma is not present, the prognosis is excellent. https://pubmed.ncbi.nlm.nih.gov/23020734/#:~:text=Solid papillary carcinomas are tumors,and affect predominantly older women.

Papillary carcinomas in general, have a slow growth rate and a better prognosis than the other forms of breast carcinomas, with a 100% 10 year survival rate. Lymph node involvement and distant metastases are uncommon and if they are present, they are limited to the cases with invasive components. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708220/#:~:text=Papillary%20carcinomas%20in%20general%2C%20have,with%20invasive%20components%20%5B3%5D.

It looks like the prognosis of your rare cancer is really very good.

I'm going to tag @Mammabear to share her words on waiting, they are really very good. I'm also going to tag @Buffythevampire who I believe had the nipple tattoo done after her reconstruction.

Runner Girl

Coco7
9 Posts

Thank you so very much for this great information @Runner Girl I have found some things on line as well but this one was particularly insightful. I actually found @Buffythevampire ‘s information on tattooing and it was very helpful already too! Hoping to have the rest of my diagnosis very soon 🙏

Mammabear
253 Posts

First let me say sorry about the nipple. Now here is the waiting…

Cancer teaches us to wait.

Wait for a diagnosis

Wait for a test

Wait for a result

Wait for a treatment plan

Wait for treatment to start

Wait for it to end

Wait to see what side effects will be

Wait for the side effects to pass

Wait to hear you are in remission

Wait to feel normal

Wait for a cure

Coco7
9 Posts

So very true @Mama Bear ~ thanks for sharing this ~ it is definitely not a disease for the impatient 😟

@Coco7 I see you've found my post/posts about my nipple reconstruction/tattoo. Let me know if you have any questions.

I go at the end of this month to get the tattoo retouched. Apparently after a year (it's been a year already!!) you get the tattoo retouched as the color can fade. At least this time I shouldn't be as nervous as I know what's going to happen. In my opinion it doesn't look like my original nipple but I like the look better then no nipple at all. At my last appointment with my Plastic Surgeon I asked him if it looked like it's supposed (he said it does) to as I have never seen a nipple/areola reconstruction/tattoo before. I know that there are probably tattoo artists that do this also but I preferred going to where my Plastic Surgeon suggested. The person who did my tattoo is being paid by the implant company.

Coco7
9 Posts

Thank you @Buffythevampire - I didn’t realize it would fade that quickly but I guess that would only stand to reason. Hopefully though it won’t be an annual thing? What I don’t understand because I guess I havent done enough research yet is your actual nipple itself. What is that made from? Skin from elsewhere on your body or your original nipple sewed back on or?? Sorry if it’s a silly question - just need to do more research. Thank you and good luck with your next touch up!

@Coco7 As I had a bleeding nipple it was removed during my mastectomy/expander placement. They didn't want to take any chances that cancer was in the nipple. My Plastic Surgeon used an origami technique to reconstruct the nipple. I was asked to mark my skin (I used a circle bandaid) where I thought my nipple should be placed. I was given an injection to freeze the area then he cut into my breast skin where the nipple was to be made. He then folds the skin onto it's self (origami) and then stitches it. It creates a bump. I was asked to use vaseline and take circular cosmetic pads (cut a hole in the center so they look like a donut) and place the hole onto the nipple. You have to use a few cosmetic pads to protect the nipple from being flattened. Mine has slight projection.

I was not put to sleep and was talking to him while he was cutting/sewing. I didn't want to talk to him at first for fear that I would distract him but he started talking to me.

@Coco7 I only have one reconstructed nipple/areola on the left breast. The right (non cancer) breast was reduced/lifted and during the surgery my nipple/areola was removed but reattached in a new position. The right side has my original nipple/areola and thankfully has regained it's sensation.

Coco7
9 Posts
Ok thank you for that good information Buffythevampire‍. Very helpful as I start to navigate the possibilities available to me. I really appreciate your time. All the best for now ❤️
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