Just Diagnosed and need adivce

I felt very similar to you. I was diagnosed with stage 1 breast cancer on 7-1-15. I went through the gamut of options: lumpectomy with radiation therapy, single mastectomy and double mastectomy. I even considered no treatment as all of them scared me. I considered the double mastectomy for several reasons: 1) mentality of "I have a cavity, give me dentures" aka "I have a 1 cm tumor, take both breasts!" 2) what if the single mastectomy doesn't match my normal breast 3) Angelina Jolie -- if she did it, it must be good 4) I didn't want 5-7 weeks of radiation therapy after lumpectomy.

I would encourage you to research all these forums especially those regarding double mastectomy since that is what you have opted to do. There are numerous complications which include chronic pain, numbness over the chest and complications with reconstruction. I, too, wanted this option but several people on breast cancer forms suggested that I reconsider, considering that my cancer was <1 cm, it was not triple negative and I was BRCA negative. In other words, I have a very slow growing small tumor and double mastectomy is MAJOR surgery for a case like mine.

I'm so grateful for them. In my research I found an additional treatment I have not been aware of: lumpectomy and intraoperative radiotherapy (IORT). I had that done on 8-25-15. It involves a lumpectomy by my breast surgeon and 20 minutes of radiotherapy directly to the tumor bed in surgery by my radiation oncologist. That is the entire treatment. I saw my breast surgeon this past Tuesday; the path report states that my margins are clean and the lymph nodes are negative. I am done with surgery. I am done with radiation therapy since it was done during surgery.

It has been two months and two days since I was diagnosed with stage I breast cancer (IDC right, <1 cm, ER+/PR+, HER2-, BRCA negative), The 1 cm margins are clean, the lymph nodes are negative and I have both breasts. For those women with triple negative breast cancer, large tumors or those who are BRCA positive, I understand getting a bilateral mastectomy. That wasn't my case.

Please take the time to research the pros and cons of all treatment options. I am grateful that other women encouraged me to reconsider having the double done. To learn about IORT in your area (and to do what I did), google "IORT breast" and the city you live in.

I was where you were on 7-1-2015 -- there are lots of forums and awesome women here to help you.

Hugs and prayers,

radgal

Hi Flydragon-

We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we're glad you've found us, and hope you find the support you need!

You may want to head over to our Reconstruction Forums for more information about reconstruction and nipple advice. They're chock full of great advice, and our members are always happy to share their experiences.

The Mods

I didn't get my nipples yet, but its true, they are purely decorative and remain in "headlights on" state all the time. However, my PS said they really look good, so I'm going to be getting them. My dh says he thinks it will feel more normal to him when he fondles my breasts. I had DIEP recon and they do feel like real breasts, so hoping the nipples will be a nice finishing touch.

I think it is a personal preference. Remember that even if you get nipples, they don't really work and often they shrink a lot anyway and are small. I opted for areola and nipple reconstruction topped off with tattoos by a tattoo artist (they have a 3 d look to them). Mine look very real and my MO always thinks I had nipple sparing BMX when he sees them even though I did not. The areola part was hard because it took a long time for the skin grafts to heal, but they look good. The tattoos made them look even better. Not sure my husband would care either way how I did it...he wanted me to be happy.

All I can offer is that i thought long and hard about nipple sparing, and my PS did a biopsy to test the tissue underneath for possible involvement before I decided to keep them. After all I had been through I knew I wasn't ready to go through more grafting, reconstruction, etc. and was glad I kept them and stayed a small size about a 34 B-. That allowed me to go in quick/out quick with two surgeries: one in my PS office to lift the nipples from the tissue about 2 weeks before my BMX/recon, and then one more surgery for my BMX/immediate reconstruction. I didn't have to go through expanders, exchanges, etc. All healed incredibly easily and my PS and I were more than pleased. The year following my BMX surgery I went back for some fat grafting, also easy--just bruising for a few weeks-- with no incisions required. That's it.

Has your husband said anything about it one way or the other? (Your original message didn't make that clear.) If it would make YOU feel more comfortable to have them, then absolutely YES, get them....because much of sexuality is in the mind. Not all. But a lot.

I don't pretend to be in your exact situation, mind. But if you can, talk it over with your husband.do. Be honest with each other: does he want you to go through more surgeries for something that may never respond like a nipple?